I am now the proud mother of a boy.
Surprise!!
You didn't see that one coming did you? Me either but here he is. A 5'8", 150? or so pounds, eighteen year old boy.
I named him Bob-bay and he arrived a little over a year ago courtesy of, no, not the stork, thank God, can you imagine giving birth to an eighteen year old?, but of my eldest daughter, Blake. Bob-bay is her boyfriend and now just another member of the crazy Reidy gang.
Bob-bay, who I will now refer to as Bobby in order to preserve your sanity and his reputation, is the boy that I never got to have and never realized that I missed. I tend to baby him (when I am not giving him a hard time) and dote on him. The hubby even remarked the other day how whenever he asked for something like a certain food or a chore he wants me to do that I just blow it off but when Bobby asks, I jump right on it. I can't help it....Bobby is the kind of kid who you want to do things for.
When he first started dating Blake he was very shy around me. And as far as Tessie went, forget it. It was like she didn't exist. He just did not know how to interact with her so he simply avoided her. And not in a mean way (if I thought he was being mean about it he would not have lasted around here for five minutes), but you could just tell he didn't know how to approach Tess. So I let it go for a while but after about eight months or so of him being around, he was not so quiet and shy and would give me as much of a hard time as I gave him so I knew he was ready...I told him he had to start saying "hi" to Tessie and talking to her when he came in to the house.
At first it was hard for him but the funniest part is that Tessie thinks he is great. She smiles when she hears him and giggles when he and Blake get wrestling and tickling each other and thus get rather loud. He claims that she loves him because he is the only person who doesn't get in her face and actually gives her some space. He could be on to something there.
Of course having another child means more things that I have to do. For example, the Knowledge Quest. I am not a huge fan of going to the school for these events and I know it is awful to admit that but there it is. Anyway, I always go to Blake and Ellie's but this year I had to sit through many others in order to get to Bobby's presentation. But I wanted to support him and let him know he did a good job. And then there are sporting events. I used to just go and stay for my girls games but now have to stay and cheer on the boys as well. And if I leave early, he notices and pulls a guilt trip on me later. Oh yeah, that's my boy.
And this is tournament week. I went from staying in the hospital with Tessie to going to the boys tournament without even going home first and have packed her up two more times (which is a HUGE undertaking) to make sure I am there. Not to mention DVRing the game and then rewatching it on TV when I get home. All for Bobby.
It has been a harder adjustment for the hubby I think. After all, he is no longer the "man" in his little girl's life. But he also likes Bobby a lot so that does make it easier.
As for me, it has been fun to get to know Bobby and watch Blake and him together. Maybe because it reminds me of the hubby and myself at that age or maybe because they are such a cute couple...
Or maybe I just like having a boy around to be a mom to.
Who would have guessed it?....
Thursday, February 24, 2011
Saturday, February 12, 2011
unexpected grace...
grace:the influence or spirit of God operating in humans to regenerate or strengthen them.
I am in a hospital room going on day 3 with a very sick Toots. She has influenza B as well as pneumonia. She cannot maintain a healthy or even semi-healthy oxygen level without being in a continuous flow of oxygen through her nostrils. I thought yesterday, after hearing about the pneumonia, that she couldn't possibly get any worse.
Wrong again.
I was awakened this morning at about three-thirty by a screeching alarm. I flew up out of my fold out chair-bed to check on Tessie. She was seizing. The good news? It really wasn't too bad. How odd does that sound? A seizure...and me saying, "eh, it's not so bad." She seized 3 or 4 times in a half hour period but again, I really didn't get too worked up because she was handling them like a trooper and they were very mild and short compared to her 'normal' seizures. I guess even Tessie can catch a break from time to time.
The rest of the day I have watched The Toots sleep. All day. Spike a fever, become restless, seize a little bit, cough and then scare herself because she cannot manage the phlegm from the cough and chokes, and then sleep some more. It has not been a banner day for Tessie.
And so I have been sitting vigil. The hubby came to sit with me and see his "littlest princess" for himself and our CNA Brooklynn has been faithfully here as well as Sheila and a special visit from Leo. The phone has rung off the hook with family calling to check on her. All worried. All pretending not to be. All wanting to do something to help. All knowing there is nothing they can do.
Except they are helping. Many people are helping and probably don't even realize it.
Let's start with Blake and Ellie. They are helping just by being who they are. Awesome girls that I know I can count on to behave at home when I am not there. That is a HUGE help. My hubby. Because he is the father he is, I am able to be the mother I am. And then there are my parents, Ma, Ann and Dad. All picking up the slack on the homefront while I am away and letting me know they would be here in a heartbeat. I need only ask. There is Kris. She would say, "what am I doing to help you right now?" but the thing is, I know she would. Again, I need only to ask. There are Karen and The Bean. Always ready to be a support system for us. Then I have Lucy, "Auntie", who talked me down off a ledge when I frantically called her a few hours before bringing Tessie into the ER the other night because I was scared and wanted to hear a reassuring voice and has been checking in with the girls at home to see if they need anything as well as calling me here to check in. Can you imagine how much worry and stress that knowledge actually takes away from me? All these people just wanting to help make things easier for us. There is also, always, Heather. My cousin who is more like a sister. A phone call to her and she would be on whatever request I asked of her with the diligence and intensity of a mafia sister. We also have Brianna. Tessie's "Buh". The love of her life. Brianna and I have been through more together than most couples will in a lifetime and you know what? We still like each other. And my good friend Kellie, who I met because of Tessie's medical issues. She was The Toot's speech therapist and now is one of my best friends. How is that for a blessing in disguise?
Then there is Jen Desmond. My Toodle Bug's go to gal for health problems until we can get her to the mainland for help. Day or night she is there. On call or not, she is there. I cannot say enough about Jen. There are no words to express my gratitude to this woman. Suffice it to say that if Jen were not the doctor she is and the woman she is, Tessie would not be able to live in such an isolated location. She needs that much attention a lot of the time. And Jen gives it to us with a smile on her face.
Who else? Oh yes, Sheila. Our port in a medical storm and my own personal security blanket. Just how we lucked in to getting her as the home health nurse for Tessie I have no idea but I thank God everyday that we did. Sheila is the best. Pure and simple. And she has a boyfriend, Leo, who has fallen in love with my Toodle Bug. And she has fallen in love with him. Again, God putting the best people in our lives at just the right times. Believe it or not, the choice is yours, but how else do you explain all of these angels?
Lastly but not less important, is our little island. Our community. Vinalhaven. We gossip and back bite and can be very petty at times but the thing is, when the shit his the fan, we've got each other's back. People are quick to let me know they are sending us good thoughts, prayers, and love. It is just what I need when I feel all alone sitting here watching my baby hurt. And many often wonder how I can be strong or tell me they admire my strength but the reality is, any one of them could do it too if it were their baby. There is no secret to how I can get through the tough times and still laugh and be silly. It's really quite simple...people are essentially good at heart and are willing to extend themselves to someone who needs it. Especially a child. Even the people I don't know that well but still will reach out and tell me to hang in there or that they have put Tessie on a prayer list at their church. There was a time when I was very quiet and private about the 'travels with Tessie' but I have learned, that by putting myself out there, warts and all, people just want to help.. and they do. They let me know I am not alone. And what more can you ask for?
So when you think about the word grace, really think about it, isn't that what I have been given? I think so...
I am in a hospital room going on day 3 with a very sick Toots. She has influenza B as well as pneumonia. She cannot maintain a healthy or even semi-healthy oxygen level without being in a continuous flow of oxygen through her nostrils. I thought yesterday, after hearing about the pneumonia, that she couldn't possibly get any worse.
Wrong again.
I was awakened this morning at about three-thirty by a screeching alarm. I flew up out of my fold out chair-bed to check on Tessie. She was seizing. The good news? It really wasn't too bad. How odd does that sound? A seizure...and me saying, "eh, it's not so bad." She seized 3 or 4 times in a half hour period but again, I really didn't get too worked up because she was handling them like a trooper and they were very mild and short compared to her 'normal' seizures. I guess even Tessie can catch a break from time to time.
The rest of the day I have watched The Toots sleep. All day. Spike a fever, become restless, seize a little bit, cough and then scare herself because she cannot manage the phlegm from the cough and chokes, and then sleep some more. It has not been a banner day for Tessie.
And so I have been sitting vigil. The hubby came to sit with me and see his "littlest princess" for himself and our CNA Brooklynn has been faithfully here as well as Sheila and a special visit from Leo. The phone has rung off the hook with family calling to check on her. All worried. All pretending not to be. All wanting to do something to help. All knowing there is nothing they can do.
Except they are helping. Many people are helping and probably don't even realize it.
Let's start with Blake and Ellie. They are helping just by being who they are. Awesome girls that I know I can count on to behave at home when I am not there. That is a HUGE help. My hubby. Because he is the father he is, I am able to be the mother I am. And then there are my parents, Ma, Ann and Dad. All picking up the slack on the homefront while I am away and letting me know they would be here in a heartbeat. I need only ask. There is Kris. She would say, "what am I doing to help you right now?" but the thing is, I know she would. Again, I need only to ask. There are Karen and The Bean. Always ready to be a support system for us. Then I have Lucy, "Auntie", who talked me down off a ledge when I frantically called her a few hours before bringing Tessie into the ER the other night because I was scared and wanted to hear a reassuring voice and has been checking in with the girls at home to see if they need anything as well as calling me here to check in. Can you imagine how much worry and stress that knowledge actually takes away from me? All these people just wanting to help make things easier for us. There is also, always, Heather. My cousin who is more like a sister. A phone call to her and she would be on whatever request I asked of her with the diligence and intensity of a mafia sister. We also have Brianna. Tessie's "Buh". The love of her life. Brianna and I have been through more together than most couples will in a lifetime and you know what? We still like each other. And my good friend Kellie, who I met because of Tessie's medical issues. She was The Toot's speech therapist and now is one of my best friends. How is that for a blessing in disguise?
Then there is Jen Desmond. My Toodle Bug's go to gal for health problems until we can get her to the mainland for help. Day or night she is there. On call or not, she is there. I cannot say enough about Jen. There are no words to express my gratitude to this woman. Suffice it to say that if Jen were not the doctor she is and the woman she is, Tessie would not be able to live in such an isolated location. She needs that much attention a lot of the time. And Jen gives it to us with a smile on her face.
Who else? Oh yes, Sheila. Our port in a medical storm and my own personal security blanket. Just how we lucked in to getting her as the home health nurse for Tessie I have no idea but I thank God everyday that we did. Sheila is the best. Pure and simple. And she has a boyfriend, Leo, who has fallen in love with my Toodle Bug. And she has fallen in love with him. Again, God putting the best people in our lives at just the right times. Believe it or not, the choice is yours, but how else do you explain all of these angels?
Lastly but not less important, is our little island. Our community. Vinalhaven. We gossip and back bite and can be very petty at times but the thing is, when the shit his the fan, we've got each other's back. People are quick to let me know they are sending us good thoughts, prayers, and love. It is just what I need when I feel all alone sitting here watching my baby hurt. And many often wonder how I can be strong or tell me they admire my strength but the reality is, any one of them could do it too if it were their baby. There is no secret to how I can get through the tough times and still laugh and be silly. It's really quite simple...people are essentially good at heart and are willing to extend themselves to someone who needs it. Especially a child. Even the people I don't know that well but still will reach out and tell me to hang in there or that they have put Tessie on a prayer list at their church. There was a time when I was very quiet and private about the 'travels with Tessie' but I have learned, that by putting myself out there, warts and all, people just want to help.. and they do. They let me know I am not alone. And what more can you ask for?
So when you think about the word grace, really think about it, isn't that what I have been given? I think so...
Friday, February 4, 2011
Forty going on Four...
I turned forty this year. I am not the type of person to really care about turning thirty, forty, etc. Although I must admit, the thought of turning fifty is a bit daunting to me. But since that is still ten years away and I am a firm believer in the Scarlet O'hara mentality of "I'll think about that tomorrow. Tomorrow is another day", I can pretty easily push it from my mind. As well as anything else that I really don't want to deal with.
And let's face it, at the present time I have bigger dragons to slay.
One of those dragons is keeping close watch on my cancer issues. I am supposed to see a dermatologist every year for mole/melanoma checks as well as my oncologist/surgeon for my thyroid cancer. Let's just say that with everything else I have had to worry about these past couple of years, I have been a wee bit remiss in keeping those appointments.
Besides, every time I go, they just want to hack into me with a scalpel. It gets old fast and I scar so badly that I fear that it may soon be my reality that I no longer have any places of just clear skin on my body. Only moles connected by scars. And the worst part? I am not exaggerating.
Anyway, as I was saying, I have not made my last couple of year's worth of doctor visits for myself. And somehow, someone (hello Ma), managed to leak this information to my father. And let me sum up his reaction in two words:
He freaked.
I was laying in bed with an ice pack and hot water bag over my head fighting off yet another migraine (as any normal healthy person-haha) when the front door opens and I hear, "Joanna!"
Now for most people hearing your name yelled out by your dad is not an issue but when it is MY dad , who always calls me either "little girl" or "rabbit" or something foolish like that, hearing your real name called out is a problem. I instantly reverted to a little kid who has been caught being naughty.
"Aw, crap" I muttered as I, in my best nonchalant whatever-could-be-the-matter-voice yelled back "Yeah?"
Then he started in on when was the last time that I saw my oncologist and why had I not been in a while and on and on and on it went. Then I really pissed him off because I just started laughing at him. He does not take well to being laughed at when he is in 'serious' mode. So then I really caught hell because I wasn't taking my him or my health seriously.
"I want you to call and make an appointment today! I mean it! You can laugh all you want but I'm coming back at noon time and if you haven't called then I will!"
So me being me and not liking to be treated like a small child said (very much like a small child would however), "You can't make me and you can't call because you don't know the name of my doctor!"
"I guess I CAN make you little girl! Don't think that your ass is so small that I can't shove my foot up it! And I'll just call Jen to get the name of your doctor."
"She can't tell you. Doctor/patient confidentiality! She needs my permission to tell you that and I'll call her and tell her not to tell you!" At this point I really wanted to add "so nah, nah, nah!" But I wisely held that back.
"If you think that Jen Desmond won't give me that name when I am standing right in front of her then think again! This is just stupid. You have too much at stake here to be missing these appointments. I know you've got a lot going on with Tessie but that is no excuse! I will be back at noon and will stand in front of you until you call if you haven't by the time I get here! Call!"
SLAM. He left all in a huff about it.
I fumed about for a while mumbling something along the lines of how I wasn't four, I was forty and I could do whatever I wanted and blah blah blah.
I had the appointment made ten minutes later.
My hubby couldn't believe it because he had been bugging me about calling all along with me swiftly sidestepping him at every turn. "Pretty good. I try to get you to call for over a year and you ignore me and he shows up for ten minutes and you call."
What can I say. Ask anyone.
You just don't mess with Big Daddy....
And let's face it, at the present time I have bigger dragons to slay.
One of those dragons is keeping close watch on my cancer issues. I am supposed to see a dermatologist every year for mole/melanoma checks as well as my oncologist/surgeon for my thyroid cancer. Let's just say that with everything else I have had to worry about these past couple of years, I have been a wee bit remiss in keeping those appointments.
Besides, every time I go, they just want to hack into me with a scalpel. It gets old fast and I scar so badly that I fear that it may soon be my reality that I no longer have any places of just clear skin on my body. Only moles connected by scars. And the worst part? I am not exaggerating.
Anyway, as I was saying, I have not made my last couple of year's worth of doctor visits for myself. And somehow, someone (hello Ma), managed to leak this information to my father. And let me sum up his reaction in two words:
He freaked.
I was laying in bed with an ice pack and hot water bag over my head fighting off yet another migraine (as any normal healthy person-haha) when the front door opens and I hear, "Joanna!"
Now for most people hearing your name yelled out by your dad is not an issue but when it is MY dad , who always calls me either "little girl" or "rabbit" or something foolish like that, hearing your real name called out is a problem. I instantly reverted to a little kid who has been caught being naughty.
"Aw, crap" I muttered as I, in my best nonchalant whatever-could-be-the-matter-voice yelled back "Yeah?"
Then he started in on when was the last time that I saw my oncologist and why had I not been in a while and on and on and on it went. Then I really pissed him off because I just started laughing at him. He does not take well to being laughed at when he is in 'serious' mode. So then I really caught hell because I wasn't taking my him or my health seriously.
"I want you to call and make an appointment today! I mean it! You can laugh all you want but I'm coming back at noon time and if you haven't called then I will!"
So me being me and not liking to be treated like a small child said (very much like a small child would however), "You can't make me and you can't call because you don't know the name of my doctor!"
"I guess I CAN make you little girl! Don't think that your ass is so small that I can't shove my foot up it! And I'll just call Jen to get the name of your doctor."
"She can't tell you. Doctor/patient confidentiality! She needs my permission to tell you that and I'll call her and tell her not to tell you!" At this point I really wanted to add "so nah, nah, nah!" But I wisely held that back.
"If you think that Jen Desmond won't give me that name when I am standing right in front of her then think again! This is just stupid. You have too much at stake here to be missing these appointments. I know you've got a lot going on with Tessie but that is no excuse! I will be back at noon and will stand in front of you until you call if you haven't by the time I get here! Call!"
SLAM. He left all in a huff about it.
I fumed about for a while mumbling something along the lines of how I wasn't four, I was forty and I could do whatever I wanted and blah blah blah.
I had the appointment made ten minutes later.
My hubby couldn't believe it because he had been bugging me about calling all along with me swiftly sidestepping him at every turn. "Pretty good. I try to get you to call for over a year and you ignore me and he shows up for ten minutes and you call."
What can I say. Ask anyone.
You just don't mess with Big Daddy....
Friday, January 28, 2011
Ellie Belle...
You have heard lots about Tessie, some about the hubby, and even a story about Blake when she was little. Am I missing anyone? Oh yeah....
Ellie Belle.
Ellie was five years old when she decided to inform her kindergarten teacher that she wanted a baby brother or sister. It even made the wall outside the classroom of the kids wishes. I laughed about it but little did she, or anyone besides the hubby and myself know that she would soon get her wish.
Several months later I did get pregnant. We waited until I was three months along before telling the girls in case something bad happened. It was a riot. By this time Blake was eight and Ellie was six. Ellie acted really excited while Blake came up with the dreaded question.
How did you and daddy make that baby?
I answered truthfully while not being overly descriptive. She got the point enough to run from the room in horror with her hands over her ears while yelling "Gross! Gross! Gross!" and then, when she regained control over herself came back to me and said, "So mama, if the baby in this picture is three months old (she was holding a picture of my twelve week sonogram), then that means that was the last time that you and daddy did that, right?
Absolutely.
As I got further along in my pregnancy I noticed that Ellie became terrified that she was going to die, I mean terrified. It really worried me. She was in an agony of fear and anything she came across would fire it up. I couldn't understand where this was all
coming from and was afraid that she may be developing some type of lifelong anxiety disorder. Luckily, I was wrong.
It all came to a head on New Year's Eve. I had spasmed my back and was laid up literally on the floor of the living room and was in misery. Blake and Ellie were spending the night at my mom's house and around midnight we got a call from her.
"Ellie is very upset and wants to go home."
Charlie immediately went to pick her up and she came home and was crying and scared of dying and I was frantic to help her feel better. I asked her if she wanted to lay next to me on the floor and she did. We cuddled for a bit and when she was calmer I began to gently question her about all of her fears. I came up with every possible scenario from movies that she had seen to other kids telling her stuff but none of it was right.
Then I hit the jackpot. "Is it about the baby?"
"Yes."
"Are you afraid I won't love you as much and you won't be as special when there is a baby around?"
"Yes"
I felt so bad for her because that was what was causing all of her stress plus she felt guilty for feeling like that (and I wondered if the guilt somehow manifested itself into her dying) so she didn't dare to tell anyone. We talked for a long time about it and I assured her that babies only added love, they never took it away and that she would always be special, that there could never be anyone who could take her place.
From that day on she was genuinely excited to be a big sister and what a big sister she has been.
When Ellie enters the room and talks to Tessie, you would swear that for Tess, there could be no higher thrill in life. Ellie always, always, always makes time for Tess and I very rarely have to ask her to do something with her. Tess giggles and laughs and shakes in pure delight at Ellie. And the icing on the love cake, Ellie can repeat, verbatim, all the lines with the correct inflection, to the Spongebob Squarepants Movie.
When Tess is in the hospital, Ellie will take a day and come to see her and crawl right in to the hospital bed beside Tessie and just lay for hours with her because it makes Tess happy. She has all the patience in the world with Tess. She is proud of Tess and accepts her for who she is. She went to Special Olympics with us and helped her bowl and we had a blast. She sings to Tessie, and muck like Tessie, Ellie is a snuggle bunny so the two are a perfect fit.
One time Ellie was keeping an eye on Tess so I could have a shower and when I got out, Tess was in the throes of a seizure while Ellie was gently stroking her and talking to her and timing the seizure. When I asked her why she didn't yell for me to get out of the shower she simply said, "I knew what to do," And she wasn't lying. She was all over it.
Like any mom, I could go on and on but will suffice it to say, Ellie is kind, smart, funny, gorgeous, and in general just a great girl and I am so proud of her,
Not only because she is an awesome big sister to Tess, because she is awesome. Period....
Ellie Belle.
Ellie was five years old when she decided to inform her kindergarten teacher that she wanted a baby brother or sister. It even made the wall outside the classroom of the kids wishes. I laughed about it but little did she, or anyone besides the hubby and myself know that she would soon get her wish.
Several months later I did get pregnant. We waited until I was three months along before telling the girls in case something bad happened. It was a riot. By this time Blake was eight and Ellie was six. Ellie acted really excited while Blake came up with the dreaded question.
How did you and daddy make that baby?
I answered truthfully while not being overly descriptive. She got the point enough to run from the room in horror with her hands over her ears while yelling "Gross! Gross! Gross!" and then, when she regained control over herself came back to me and said, "So mama, if the baby in this picture is three months old (she was holding a picture of my twelve week sonogram), then that means that was the last time that you and daddy did that, right?
Absolutely.
As I got further along in my pregnancy I noticed that Ellie became terrified that she was going to die, I mean terrified. It really worried me. She was in an agony of fear and anything she came across would fire it up. I couldn't understand where this was all
coming from and was afraid that she may be developing some type of lifelong anxiety disorder. Luckily, I was wrong.
It all came to a head on New Year's Eve. I had spasmed my back and was laid up literally on the floor of the living room and was in misery. Blake and Ellie were spending the night at my mom's house and around midnight we got a call from her.
"Ellie is very upset and wants to go home."
Charlie immediately went to pick her up and she came home and was crying and scared of dying and I was frantic to help her feel better. I asked her if she wanted to lay next to me on the floor and she did. We cuddled for a bit and when she was calmer I began to gently question her about all of her fears. I came up with every possible scenario from movies that she had seen to other kids telling her stuff but none of it was right.
Then I hit the jackpot. "Is it about the baby?"
"Yes."
"Are you afraid I won't love you as much and you won't be as special when there is a baby around?"
"Yes"
I felt so bad for her because that was what was causing all of her stress plus she felt guilty for feeling like that (and I wondered if the guilt somehow manifested itself into her dying) so she didn't dare to tell anyone. We talked for a long time about it and I assured her that babies only added love, they never took it away and that she would always be special, that there could never be anyone who could take her place.
From that day on she was genuinely excited to be a big sister and what a big sister she has been.
When Ellie enters the room and talks to Tessie, you would swear that for Tess, there could be no higher thrill in life. Ellie always, always, always makes time for Tess and I very rarely have to ask her to do something with her. Tess giggles and laughs and shakes in pure delight at Ellie. And the icing on the love cake, Ellie can repeat, verbatim, all the lines with the correct inflection, to the Spongebob Squarepants Movie.
When Tess is in the hospital, Ellie will take a day and come to see her and crawl right in to the hospital bed beside Tessie and just lay for hours with her because it makes Tess happy. She has all the patience in the world with Tess. She is proud of Tess and accepts her for who she is. She went to Special Olympics with us and helped her bowl and we had a blast. She sings to Tessie, and muck like Tessie, Ellie is a snuggle bunny so the two are a perfect fit.
One time Ellie was keeping an eye on Tess so I could have a shower and when I got out, Tess was in the throes of a seizure while Ellie was gently stroking her and talking to her and timing the seizure. When I asked her why she didn't yell for me to get out of the shower she simply said, "I knew what to do," And she wasn't lying. She was all over it.
Like any mom, I could go on and on but will suffice it to say, Ellie is kind, smart, funny, gorgeous, and in general just a great girl and I am so proud of her,
Not only because she is an awesome big sister to Tess, because she is awesome. Period....
Friday, January 21, 2011
48 HRS...
Tuesday 8:51 a.m.
Seizure.
8:56 a.m.
administered Diastat
continued seizing.
9:01 a.m.
gave 2mg of Ativan via G-tube
continued seizing
9:09 a.m.
seizure broke
9:10 a.m.
another seizure
9:11 a.m.
seizure broke
9:12 a.m.
another seizure
9:14 a.m
seizure broke
By this point Tessie had all the meds that I could give her so hopefully she was finally done seizing. The reality is, if we lived on the mainland, this would have been a trip to either her pediatrician or the E.R.
I called Sheila.
The rest of the day Tessie was not a happy girl. She looked awful, she smelled awful because of how bad she sweats during seizures, and she felt awful. I personally do not think that the Ativan reacts well to her and that it makes her feel sick and jittery. If Tess is capable of having anxiety, it would be the word that I would use to describe her after she has had Ativan. Anxious.
Ironic, isn't it? A drug intended to calm the system makes her's go into hyper drive.
She looked like she had a few petite mal seizures a few times throughout the morning but I really wasn't sure so I never called the doctor. I felt very uneasy however. And by bed time I decided that Tessie needed to sleep with me so that I could keep an eye on her during the night.
And what a long night.
11:00 p.m.
Tess is awake and unhappy.
12:00 a.m.
Awake and unhappy.
1:00-4:00 a.m.
sort of sleeping between bouts of whimpering.
4:00-5:00 a.m.
fully awake and crying.
Due to the Ativan, she couldn't sleep and her belly was upset and she just felt crappy so she was very fidgety and restless all night. Even crying at one point. That is a heartbreaker. Tessie almost never cries so when she does you know something is wrong. But what? That is always the mystery. I did what I could and she finally fell into a good sleep around five a.m.
Wednesday
All day Tess watch. Is she tensing up? Is she getting ready to seize again? Is she sick? Should she see Jen? Should I call Boston? Am I imagining half of this? The watching and waiting are exquisitely intense for me. I feel like every decision that I make is literally life or death and that leaves zero margin for error. Exhausting does not begin to describe how it feels some days.
Even Charlie was worried by Wednesday night because she was still not acting right. And he hardly ever outwardly expresses his worries about Tessie. That did not help my anxiety level, let me tell you. But we put her in her own bed after hooking up her alarm and hoped she would be better by morning.
Thursday 8:36 a.m.
Tessie's alarm is going off but I could see her in the monitor and she looked okay. I figured the probe had slipped off of her toe. But it kept alarming. Hmmm...
8:37 a.m.
I go in to see Tessie expecting to find that the alarm is misreading only to find that the alarm is accurate and her oxygen level is in the low 80's. I quickly grabbed her jump bag to get the oxygen started on her and when she went into a full blown seizure. A bad one. I start timing.
8:40 a.m
Sheila arrived from ferry and I yelled "She's seizing!" Sheila ran in and immediately noted that Tess had her jaw locked shut which is why, even with the oxygen on her, I could not get her stats above 92. She shoved her knuckle into the side of Tessie's mouth and her stats immediately improved. Holy Scare Batman!
8:42 a.m.
Diastat administered
continued to seize
8:47 a.m.
2mg of Ativan given via Gtube
8:51 a.m.
Seizure broke and I promptly burst into tears.
Poor Sheila. Dealing with a sick kid and now,a hysterical mother. I think I knew it was going to be a rough day but I had no idea how rough it was about to get.
Tess began having petite mal seizures and wasn't stopping. About every fifteen minutes or so they were coming. We had given all the meds so Sheila paged out the pediatrician, Dr. Stephenson. He got the lowdown on what had been going on and told her to give her another 2mg of Ativan.
I burst into tears. Again. Sheila told him that hearing that scared me enough to make me cry (remember, I do not think she reacts well to that drug, plus it depresses breathing and how much more could she take before she stopped breathing?) so he, being the kind soul that he is, told Sheila to give another dose of Diastat instead in then call him back in a half hour. If she was still seizing we would be flown off the island or transported by ambulance on the ferry.
Sheila gave Tess the med and told me I had about twenty minutes to shower and pack. I got busy.
10:20 a.m.
the second dose of Diastat seemed to calm her down but, after discussing everything with doc Stephenson, he decided he needed to see her and we thought she was done seizing finally so we figured we could take her on the ferry in my van.
During the ferry ride we thought we saw a couple more petite mal seizures but nothing too scary although we were glad we were heading to the mainland.
12:38 p.m.
as we are getting Tessie back into her car seat to go to Sheila's to wait for our appointment with doc Stephenson, Tessie had another scary seizure. "What do we do?" I asked Sheila. "Either E.R. or Dr. Stephenson's now!" She got the oxygen on Tessie and I sped out of the Rockland ferry terminal and hit every single rotten, sucky, horrible, red light on the way.
We went screaming into Dr. Stephenson's office and I told Sheila to just get her in there and I would get the car parked and locked in be right behind her. She ran in and they whisked Tess to a room.
12:46 p.m.
Seizure broke
Dr. Stpehenson came right in and did an exam while singing to Tessie, "Tessie's my girlfriend, don't tell my wife!", and, after not finding anything immediately wrong, asked us to stay in his office for a while if we didn't mind so he could keep a close eye on her and call her doc in Boston to collaborate. No problem!
2:45 p.m.
We leave Dr. Stephenson's office with a plan of attack for the night/weekend and an appointment for Tessie in Boston on Monday. He and her Boston doc decided that since we were staying with Sheila, Tess did not need to go into the hospital unless she seized again or unless I would prefer her to be there. I said no, I was fine at Sheila's. We did have to go get bloodwork done and they made some med changes and then we went to Sheila's and got settled in for the night.
Tessie had another day of feeling crappy from everything and Sheila and I were both fried. But so far so good. Tessie made it through the rest of the day and last night without any real trouble, other than fussing from feeling terrible however, I am worried about tomorrow morning because 48 hrs seem to be the magic time between seizures and that will be at 8:36 in the a.m.
I am still at Sheila's as I write this because it is storming out and I have been told by the doc to be off the island with Tessie during bad weather (and it's only January. It's going to be a long winter I am afraid), and because of the potential for another seizure in the morning. Plus, he asked me to call him before I took her back to the island.
I am really hoping that we can go home in the morning. I have two other girls who need me too, and I need them not to mention my hubby. Plus, Blake and Ellie have a basketball game that I really hope to make it to in the morning.
Hope. That is the key word. I hope...for lots of things...
Seizure.
8:56 a.m.
administered Diastat
continued seizing.
9:01 a.m.
gave 2mg of Ativan via G-tube
continued seizing
9:09 a.m.
seizure broke
9:10 a.m.
another seizure
9:11 a.m.
seizure broke
9:12 a.m.
another seizure
9:14 a.m
seizure broke
By this point Tessie had all the meds that I could give her so hopefully she was finally done seizing. The reality is, if we lived on the mainland, this would have been a trip to either her pediatrician or the E.R.
I called Sheila.
The rest of the day Tessie was not a happy girl. She looked awful, she smelled awful because of how bad she sweats during seizures, and she felt awful. I personally do not think that the Ativan reacts well to her and that it makes her feel sick and jittery. If Tess is capable of having anxiety, it would be the word that I would use to describe her after she has had Ativan. Anxious.
Ironic, isn't it? A drug intended to calm the system makes her's go into hyper drive.
She looked like she had a few petite mal seizures a few times throughout the morning but I really wasn't sure so I never called the doctor. I felt very uneasy however. And by bed time I decided that Tessie needed to sleep with me so that I could keep an eye on her during the night.
And what a long night.
11:00 p.m.
Tess is awake and unhappy.
12:00 a.m.
Awake and unhappy.
1:00-4:00 a.m.
sort of sleeping between bouts of whimpering.
4:00-5:00 a.m.
fully awake and crying.
Due to the Ativan, she couldn't sleep and her belly was upset and she just felt crappy so she was very fidgety and restless all night. Even crying at one point. That is a heartbreaker. Tessie almost never cries so when she does you know something is wrong. But what? That is always the mystery. I did what I could and she finally fell into a good sleep around five a.m.
Wednesday
All day Tess watch. Is she tensing up? Is she getting ready to seize again? Is she sick? Should she see Jen? Should I call Boston? Am I imagining half of this? The watching and waiting are exquisitely intense for me. I feel like every decision that I make is literally life or death and that leaves zero margin for error. Exhausting does not begin to describe how it feels some days.
Even Charlie was worried by Wednesday night because she was still not acting right. And he hardly ever outwardly expresses his worries about Tessie. That did not help my anxiety level, let me tell you. But we put her in her own bed after hooking up her alarm and hoped she would be better by morning.
Thursday 8:36 a.m.
Tessie's alarm is going off but I could see her in the monitor and she looked okay. I figured the probe had slipped off of her toe. But it kept alarming. Hmmm...
8:37 a.m.
I go in to see Tessie expecting to find that the alarm is misreading only to find that the alarm is accurate and her oxygen level is in the low 80's. I quickly grabbed her jump bag to get the oxygen started on her and when she went into a full blown seizure. A bad one. I start timing.
8:40 a.m
Sheila arrived from ferry and I yelled "She's seizing!" Sheila ran in and immediately noted that Tess had her jaw locked shut which is why, even with the oxygen on her, I could not get her stats above 92. She shoved her knuckle into the side of Tessie's mouth and her stats immediately improved. Holy Scare Batman!
8:42 a.m.
Diastat administered
continued to seize
8:47 a.m.
2mg of Ativan given via Gtube
8:51 a.m.
Seizure broke and I promptly burst into tears.
Poor Sheila. Dealing with a sick kid and now,a hysterical mother. I think I knew it was going to be a rough day but I had no idea how rough it was about to get.
Tess began having petite mal seizures and wasn't stopping. About every fifteen minutes or so they were coming. We had given all the meds so Sheila paged out the pediatrician, Dr. Stephenson. He got the lowdown on what had been going on and told her to give her another 2mg of Ativan.
I burst into tears. Again. Sheila told him that hearing that scared me enough to make me cry (remember, I do not think she reacts well to that drug, plus it depresses breathing and how much more could she take before she stopped breathing?) so he, being the kind soul that he is, told Sheila to give another dose of Diastat instead in then call him back in a half hour. If she was still seizing we would be flown off the island or transported by ambulance on the ferry.
Sheila gave Tess the med and told me I had about twenty minutes to shower and pack. I got busy.
10:20 a.m.
the second dose of Diastat seemed to calm her down but, after discussing everything with doc Stephenson, he decided he needed to see her and we thought she was done seizing finally so we figured we could take her on the ferry in my van.
During the ferry ride we thought we saw a couple more petite mal seizures but nothing too scary although we were glad we were heading to the mainland.
12:38 p.m.
as we are getting Tessie back into her car seat to go to Sheila's to wait for our appointment with doc Stephenson, Tessie had another scary seizure. "What do we do?" I asked Sheila. "Either E.R. or Dr. Stephenson's now!" She got the oxygen on Tessie and I sped out of the Rockland ferry terminal and hit every single rotten, sucky, horrible, red light on the way.
We went screaming into Dr. Stephenson's office and I told Sheila to just get her in there and I would get the car parked and locked in be right behind her. She ran in and they whisked Tess to a room.
12:46 p.m.
Seizure broke
Dr. Stpehenson came right in and did an exam while singing to Tessie, "Tessie's my girlfriend, don't tell my wife!", and, after not finding anything immediately wrong, asked us to stay in his office for a while if we didn't mind so he could keep a close eye on her and call her doc in Boston to collaborate. No problem!
2:45 p.m.
We leave Dr. Stephenson's office with a plan of attack for the night/weekend and an appointment for Tessie in Boston on Monday. He and her Boston doc decided that since we were staying with Sheila, Tess did not need to go into the hospital unless she seized again or unless I would prefer her to be there. I said no, I was fine at Sheila's. We did have to go get bloodwork done and they made some med changes and then we went to Sheila's and got settled in for the night.
Tessie had another day of feeling crappy from everything and Sheila and I were both fried. But so far so good. Tessie made it through the rest of the day and last night without any real trouble, other than fussing from feeling terrible however, I am worried about tomorrow morning because 48 hrs seem to be the magic time between seizures and that will be at 8:36 in the a.m.
I am still at Sheila's as I write this because it is storming out and I have been told by the doc to be off the island with Tessie during bad weather (and it's only January. It's going to be a long winter I am afraid), and because of the potential for another seizure in the morning. Plus, he asked me to call him before I took her back to the island.
I am really hoping that we can go home in the morning. I have two other girls who need me too, and I need them not to mention my hubby. Plus, Blake and Ellie have a basketball game that I really hope to make it to in the morning.
Hope. That is the key word. I hope...for lots of things...
Saturday, January 15, 2011
Here comes Peter Cottontail...
Lately most of my posts have been more serious and let's face it, there is a very good reason for that at the moment. I mean, I am in a forever state of Flight or Fight as far as The Toots is concerned and I never know, minute to minute, what is coming next and that makes for a more serious state of mind. Thus the more serious tone to the recent posts.
But I am sick of it and in general I am a girl who likes to laugh and although here and there Tessie has done some funny things recently, after all, she is funny kid, there hasn't been any really 'funny story' type things to write about, and since I don't want one more serious post without a bit of humor spread around, I am going to tell you a story that has nothing at all to do with Tessie. She wasn't even born yet. Not even a twinkle in her daddy's eye. So forgive me for straying away from this Blog's intended topic. I just needed a laugh. I hope you laugh too.
It was Easter. Literally Easter Eve if you will. It was the first real Holiday with Blake in an upstairs bedroom (all of ours were downstairs at the time) because she thought she was too old to share with her 'baby' sister, Ellie, and lucky for her, her dad is a carpenter so voila, an upstairs bedroom was banged out.
The kids were in bed and I, ahem, excuse me, I mean the Easter Bunny was getting their Easter baskets all ready. And I must confess, I do way too much for Easter. I'm talking clothes, shoes, games, toys and candy all bundled into the cutest Easter baskets I can find and topped off with some type of stuffed animal, generally a bunny.
The hubby and I went down to bed around nine-thirty or so. Right after I had finished hiding jelly beans around the house for the kids to find in the morning. About midnight or so I heard Blake's voice float down to my bedroom.
"Easter Bunny, I need to go to the bathroom so I am coming out!", she called.
The next thing we hear are her little feet running just as fast as they could go to the bathroom. Then...
"Easter Bunny, I am all done and am going back to my bedroom."
I started cracking up. What the heck was she calling out her exact locations to the Easter Bunny for? I was about to find out.
A few minutes after she had, like a marathon sprinter, raced from the bathroom back to her bedroom I heard her call out.....
"Easter Bunny, I am going downstairs."
Then a frantic race to our room where she cried out, "I think that the Easter Bunny is going to shoot me!"
Huh???
She was really quite upset about it and we could not figure out where this all came from but luckily her sister's bedroom still had bunk beds in it so we told her to sleep in there with Ellie. She thought that was a marvelous idea so we got her all tucked in and the hubby and I went back to bed.
Charlie and I were talking and trying to figure out why she was so scared of that damn bunny when we heard her whimper, "Daddy, I think that the Easter Bunny is hopping up the ladder with a gun!" I lost it. I knew that I shouldn't have been laughing but come on, It was just too funny.
So Charlie got up and went in and made a big show of checking out the bunk bed ladder, and the rest of the room for that matter and reassured her that the Easter Bunny was not in the house anywhere and even if it was, that the Easter Bunny loved her and would never hurt her, then got back into bed.
A few minutes later, this time rather hysterically and completely panic stricken, we heard, "Daddy, I think it's out on the deck looking in my window!" Even Charlie was cracking up now. But he pulled himself together to go in and pretend to check the window and once again reassure Blake that the Easter Bunny was not trying to shoot her.
Back into bed, thankfully for the night this time. But Charlie and I laid there and laughed 'til tears ran down our cheeks. We talked about how she was going to really hate us someday when she learned the truth, that in fact there really was no Easter Bunny and how her therapy bills would be astronomical. We laughed and laughed and laughed picturing a friendly looking yet deranged, big eyed, big eared bunny rabbit hopping up Blake's bunk bed ladder with an AK47 to take her out muttering, "Happy Easter you little brat." What can I say? My sick sense of humor didn't just come along after I had The Toots. It has always been there.
We never did figure out why she thought that the Easter Bunny had it in for her. I sometimes wonder if it freaked her out when she came out of her bedroom and in the darkness saw the shadow of a rather large stuffed bunny that was propped up on top of the basket which was on the coffee table and thought that she had really seen the Easter Bunny and thus must die. Who knows? Kids minds are strange little places at times.
But it still makes me laugh whenever I think about it. The terrifying tale of a little girl and the rabbit that was out to get her.
Here comes Peter Cottontail, hopping down the bunny trail...
But I am sick of it and in general I am a girl who likes to laugh and although here and there Tessie has done some funny things recently, after all, she is funny kid, there hasn't been any really 'funny story' type things to write about, and since I don't want one more serious post without a bit of humor spread around, I am going to tell you a story that has nothing at all to do with Tessie. She wasn't even born yet. Not even a twinkle in her daddy's eye. So forgive me for straying away from this Blog's intended topic. I just needed a laugh. I hope you laugh too.
It was Easter. Literally Easter Eve if you will. It was the first real Holiday with Blake in an upstairs bedroom (all of ours were downstairs at the time) because she thought she was too old to share with her 'baby' sister, Ellie, and lucky for her, her dad is a carpenter so voila, an upstairs bedroom was banged out.
The kids were in bed and I, ahem, excuse me, I mean the Easter Bunny was getting their Easter baskets all ready. And I must confess, I do way too much for Easter. I'm talking clothes, shoes, games, toys and candy all bundled into the cutest Easter baskets I can find and topped off with some type of stuffed animal, generally a bunny.
The hubby and I went down to bed around nine-thirty or so. Right after I had finished hiding jelly beans around the house for the kids to find in the morning. About midnight or so I heard Blake's voice float down to my bedroom.
"Easter Bunny, I need to go to the bathroom so I am coming out!", she called.
The next thing we hear are her little feet running just as fast as they could go to the bathroom. Then...
"Easter Bunny, I am all done and am going back to my bedroom."
I started cracking up. What the heck was she calling out her exact locations to the Easter Bunny for? I was about to find out.
A few minutes after she had, like a marathon sprinter, raced from the bathroom back to her bedroom I heard her call out.....
"Easter Bunny, I am going downstairs."
Then a frantic race to our room where she cried out, "I think that the Easter Bunny is going to shoot me!"
Huh???
She was really quite upset about it and we could not figure out where this all came from but luckily her sister's bedroom still had bunk beds in it so we told her to sleep in there with Ellie. She thought that was a marvelous idea so we got her all tucked in and the hubby and I went back to bed.
Charlie and I were talking and trying to figure out why she was so scared of that damn bunny when we heard her whimper, "Daddy, I think that the Easter Bunny is hopping up the ladder with a gun!" I lost it. I knew that I shouldn't have been laughing but come on, It was just too funny.
So Charlie got up and went in and made a big show of checking out the bunk bed ladder, and the rest of the room for that matter and reassured her that the Easter Bunny was not in the house anywhere and even if it was, that the Easter Bunny loved her and would never hurt her, then got back into bed.
A few minutes later, this time rather hysterically and completely panic stricken, we heard, "Daddy, I think it's out on the deck looking in my window!" Even Charlie was cracking up now. But he pulled himself together to go in and pretend to check the window and once again reassure Blake that the Easter Bunny was not trying to shoot her.
Back into bed, thankfully for the night this time. But Charlie and I laid there and laughed 'til tears ran down our cheeks. We talked about how she was going to really hate us someday when she learned the truth, that in fact there really was no Easter Bunny and how her therapy bills would be astronomical. We laughed and laughed and laughed picturing a friendly looking yet deranged, big eyed, big eared bunny rabbit hopping up Blake's bunk bed ladder with an AK47 to take her out muttering, "Happy Easter you little brat." What can I say? My sick sense of humor didn't just come along after I had The Toots. It has always been there.
We never did figure out why she thought that the Easter Bunny had it in for her. I sometimes wonder if it freaked her out when she came out of her bedroom and in the darkness saw the shadow of a rather large stuffed bunny that was propped up on top of the basket which was on the coffee table and thought that she had really seen the Easter Bunny and thus must die. Who knows? Kids minds are strange little places at times.
But it still makes me laugh whenever I think about it. The terrifying tale of a little girl and the rabbit that was out to get her.
Here comes Peter Cottontail, hopping down the bunny trail...
Sunday, January 9, 2011
Oh baby, baby it's a wild world...
...it's hard to get by just upon a smile.
Ain't it the truth? Say what you will about Cat Stevens, but the man wrote some good music. And this was the song that came to mind while laying in bed with The Toots the other night.
It all began when Tessie had a seizure on Christmas day. It had only been a few days since her previous seizure and I was kind of surprised to see another rear it's ugly head so soon. Since our eight day stay at Childrens in November and more medicine increases, the seizures were happening about every 10-14 days. Quite a nice reprieve, let me tell you. But it had only been four days. Hmmmmm....
Then, four days after that, another one. It was kind of freaking me out but I chalked it up to an antibiotic that she was on. My thought that either the antibiotic didn't agree with her or that it was messing with her highly specialized diet.
Two days later another seizure. This one was bad indeed. Not that any of them are good, but this was a whole new monster. One that I hadn't dealt with before. The seizure that wouldn't quit.
I dumped a whole slew of meds into her little body and administered the oxygen and basically prayed. Then, after about 19 minutes it stopped. Or so I thought. Hold on, she was back into another one-hard. What was going on?
We were in trouble and I knew it. I called Sheila and told her what was up. Sheila, my own personal security blanket told me to hang up and call Jen. I called the medical center and irony of ironies, everybody was out on an emergency call. Got that? There was no one to help. Not the best feeling that I have ever had I can tell you.
So I hung up and called her pediatrician, Dr. Stephenson. The receptionist answered and I said, "Get Dr. Stephenson for me please."
"He is with a patient..."
"Get him NOW. Tell him this is Joanna Reidy and that I cannot get Tess to stop seizing."
"Hold on."
"Mama Reidy, what is going on with my girlfriend?"
So I launched into my saga, probably a bit hysterically because by this time it had been thirty minutes. He had me check her oxygen and she was maintaining it so he felt a teensy bit better. I explained that all the island docs and the ambulance were already out on an emergency and asked what I should do.
Of course, while I was on the phone with him, Tessie finally stopped seizing for good. Thank God. He told me to keep her monitors on her and watch her closely and call him back in an hour. If she seized again, we would be flying over either by plane or lifeflight depending on her status. Great.
As soon as I hung up with him the fill-in doc at the medical center called. He was very concerned but pleased with how I handled everything (which made me feel good) and agreed with Doc Stephenson. We would wait and see how she did. And, I would like to point out, that while it seemed I had no help, the ladies behind the desk at the medical center made sure I got called as soon as the doc returned and I appreciated that very much. I also knew, that if need be, I could page out Jen myself but then what? Make her decide who needed her more I guess. What a fun position to put her in.
Anyway, Tessie put in a crappy day but no more seizures and all docs called back before leaving their offices for the day, which is always a nice thing when you are a scared mom, and of course, Sheila was on stand by via telephone.
We stopped the antibiotic and about a week went by without any big seizures although I think she had a couple of very small ones, so I thought things were sort of, kinda, back to normal. Well, our normal anyway.
Then I went to the basketball games Friday night. The Hubby stayed home with Tessie because one of her seizures the week before occurred at a basketball game. How thrilling for us. The game was great but I kept thinking about The Toots. That little knot in my stomach was starting to talk to me again. Enough so that by the third quarter of the boys game I got up and left to go home.
When I got home everything was fine. Hubby was getting Tessie ready for bed and had everything under control. Huh, must be getting paranoid I guess. Then, as I was setting up her feeding pump, I heard him say to me, "she's going into it."
This was another doozy. I called Sheila after sixteen minutes and she called Jen. this seizure lasted for about 22 minutes of her going in and out of seizing. Jen called me and we discussed strategy for the night. Obviously Tessie would be sleeping with me but, and here is where things get really fun, we had just given her her night time meds and then had to give valium and ativan on top of all of that. Would this suppress her breathing? We did not know, which meant I was on high alert for the night.
Tess handled it all like the trooper she is but I was a wreck all night. I would doze off to sleep and then jerk awake to check her oxygen monitor. Every time I woke up she was wide awake. I felt so bad for her. Ativan for most people knocks them out. Naturally, Tessie reacts as only Tessie would and it makes her twitchy and restless. I would try to stay awake to talk to her and hold her hand but then would doze off and repeat the scenario all over again.
So, right now I do not know what is causing her seizures to be so bad. I would bet that we will be making a trip back to Boston sooner rather than later. And I don't know what they will, or can, do for her. I have done a lot of research and know there are things still left to try, albeit not many and not what I would like.
I thought of all this and more and of all the questions still left unanswered as I lay next to my baby and wondered why her? Why us? Why, why, why?
And then I thought, why not?
Oh baby, baby it's a wild world....
Ain't it the truth? Say what you will about Cat Stevens, but the man wrote some good music. And this was the song that came to mind while laying in bed with The Toots the other night.
It all began when Tessie had a seizure on Christmas day. It had only been a few days since her previous seizure and I was kind of surprised to see another rear it's ugly head so soon. Since our eight day stay at Childrens in November and more medicine increases, the seizures were happening about every 10-14 days. Quite a nice reprieve, let me tell you. But it had only been four days. Hmmmmm....
Then, four days after that, another one. It was kind of freaking me out but I chalked it up to an antibiotic that she was on. My thought that either the antibiotic didn't agree with her or that it was messing with her highly specialized diet.
Two days later another seizure. This one was bad indeed. Not that any of them are good, but this was a whole new monster. One that I hadn't dealt with before. The seizure that wouldn't quit.
I dumped a whole slew of meds into her little body and administered the oxygen and basically prayed. Then, after about 19 minutes it stopped. Or so I thought. Hold on, she was back into another one-hard. What was going on?
We were in trouble and I knew it. I called Sheila and told her what was up. Sheila, my own personal security blanket told me to hang up and call Jen. I called the medical center and irony of ironies, everybody was out on an emergency call. Got that? There was no one to help. Not the best feeling that I have ever had I can tell you.
So I hung up and called her pediatrician, Dr. Stephenson. The receptionist answered and I said, "Get Dr. Stephenson for me please."
"He is with a patient..."
"Get him NOW. Tell him this is Joanna Reidy and that I cannot get Tess to stop seizing."
"Hold on."
"Mama Reidy, what is going on with my girlfriend?"
So I launched into my saga, probably a bit hysterically because by this time it had been thirty minutes. He had me check her oxygen and she was maintaining it so he felt a teensy bit better. I explained that all the island docs and the ambulance were already out on an emergency and asked what I should do.
Of course, while I was on the phone with him, Tessie finally stopped seizing for good. Thank God. He told me to keep her monitors on her and watch her closely and call him back in an hour. If she seized again, we would be flying over either by plane or lifeflight depending on her status. Great.
As soon as I hung up with him the fill-in doc at the medical center called. He was very concerned but pleased with how I handled everything (which made me feel good) and agreed with Doc Stephenson. We would wait and see how she did. And, I would like to point out, that while it seemed I had no help, the ladies behind the desk at the medical center made sure I got called as soon as the doc returned and I appreciated that very much. I also knew, that if need be, I could page out Jen myself but then what? Make her decide who needed her more I guess. What a fun position to put her in.
Anyway, Tessie put in a crappy day but no more seizures and all docs called back before leaving their offices for the day, which is always a nice thing when you are a scared mom, and of course, Sheila was on stand by via telephone.
We stopped the antibiotic and about a week went by without any big seizures although I think she had a couple of very small ones, so I thought things were sort of, kinda, back to normal. Well, our normal anyway.
Then I went to the basketball games Friday night. The Hubby stayed home with Tessie because one of her seizures the week before occurred at a basketball game. How thrilling for us. The game was great but I kept thinking about The Toots. That little knot in my stomach was starting to talk to me again. Enough so that by the third quarter of the boys game I got up and left to go home.
When I got home everything was fine. Hubby was getting Tessie ready for bed and had everything under control. Huh, must be getting paranoid I guess. Then, as I was setting up her feeding pump, I heard him say to me, "she's going into it."
This was another doozy. I called Sheila after sixteen minutes and she called Jen. this seizure lasted for about 22 minutes of her going in and out of seizing. Jen called me and we discussed strategy for the night. Obviously Tessie would be sleeping with me but, and here is where things get really fun, we had just given her her night time meds and then had to give valium and ativan on top of all of that. Would this suppress her breathing? We did not know, which meant I was on high alert for the night.
Tess handled it all like the trooper she is but I was a wreck all night. I would doze off to sleep and then jerk awake to check her oxygen monitor. Every time I woke up she was wide awake. I felt so bad for her. Ativan for most people knocks them out. Naturally, Tessie reacts as only Tessie would and it makes her twitchy and restless. I would try to stay awake to talk to her and hold her hand but then would doze off and repeat the scenario all over again.
So, right now I do not know what is causing her seizures to be so bad. I would bet that we will be making a trip back to Boston sooner rather than later. And I don't know what they will, or can, do for her. I have done a lot of research and know there are things still left to try, albeit not many and not what I would like.
I thought of all this and more and of all the questions still left unanswered as I lay next to my baby and wondered why her? Why us? Why, why, why?
And then I thought, why not?
Oh baby, baby it's a wild world....
Thursday, January 6, 2011
I am the Child...
A couple of years ago I made a photobook for my mom, Ann, and Charlie's mom for Mother's Day and had Blake and Ellie write poems for it. For Tess, I searched the web.
I was looking for poems about children with special needs. And by the way, I hate that stupid label because ALL kids have special needs and there is nothing wrong with saying, 'I have a child with disabilities'. You are not saying that the child has no abilities at all, just saying what is, they cannot do every thing that most able-bodied people can do.
Wow, got off on a tangent there! Anyway, I found several of the cliched ones you would expect to find which always make me want to puke over their sappy, sugary, 'life is perfect even though it isn't' crap, and a few really good ones that made me say, "These people get it".
And then I got it. I'm not sure I truly did before reading this. I'm not sure I ever really got past my own feelings about Tessie to wonder about hers. I mean, sure, I wondered what she thought about or if she felt left out or was hurt. But I never really wondered about whether or not she could feel my frustrations about her situation or my lack of patience with certain things.
And I am so thankful that I stumbled across this poem because every time I feel that frustration and impatience creeping up on me, I look at Tessie and think, "Why am I getting so upset about this? Imagine how she feels." And it usually dials that attitude right back down.
I guess what I am trying to say is that what this particular little piece really did was to give a "voice" ,so to speak, to Tessie. And I really do believe that if she could, my little Toots would tell you all of this herself.
So please read the following carefully. I did not write it but I wish that I had...
I AM THE CHILD
(Author Unknown)
I am the child who cannot talk.
You often pity me, I see it in your eyes.
You wonder how much I am aware of -- I see that as well.
I am aware of much, whether you are happy or sad or fearful,
patient or impatient, full of love and desire,
or if you are just doing your duty by me.
I marvel at your frustration, knowing mine to be far greater,
for I cannot express myself or my needs as you do.
You cannot conceive my isolation, so complete it is at times.
I do not gift you with clever conversation, cute remarks to be laughed over and repeated.
I do not give you answers to your everyday questions,
responses over my well-being, sharing my needs,
or comments about the world about me.
I do not give you rewards as defined by the world's standards -- great strides in
development that you can credit yourself;
I do not give you understanding as you know it.
What I give you is so much more valuable -- I give you instead opportunities.
Opportunities to discover the depth of your character, not mine;
the depth of your love, your commitment, your patience, your abilities;
the opportunity to explore your spirit more deeply than you imagined possible.
I drive you further than you would ever go on your own, working harder,
seeking answers to your many questions with no answers.
I am the child who cannot talk.
I am the child who cannot walk.
The world seems to pass me by.
You see the longing in my eyes to get out of this chair, to run and play like other children.
There is much you take for granted.
I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again.
I am dependent on you in these ways.
My gift to you is to make you more aware of your great fortune,
your healthy back and legs, your ability to do for yourself.
Sometimes people appear not to notice me; I always notice them.
I feel not so much envy as desire, desire to stand upright,
to put one foot in front of the other, to be independent.
I give you awareness.
I am the child who cannot walk.
I am the child who is mentally impaired.
I don't learn easily, if you judge me by the world's measuring stick,
what I do know is infinite joy in simple things.
I am not burdened as you are with the strife's and conflicts of a more complicated life.
My gift to you is to grant you the freedom to enjoy things as a child,
to teach you how much your arms around me mean, to give you love.
I give you the gift of simplicity.
I am the child who is mentally impaired.
I am the disabled child.
I am your teacher. If you allow me,
I will teach you what is really important in life.
I will give you and teach you unconditional love.
I gift you with my innocent trust, my dependency upon you.
I teach you about how precious this life is and about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you giving.
Most of all I teach you hope and faith.
I am the disabled child.
I was looking for poems about children with special needs. And by the way, I hate that stupid label because ALL kids have special needs and there is nothing wrong with saying, 'I have a child with disabilities'. You are not saying that the child has no abilities at all, just saying what is, they cannot do every thing that most able-bodied people can do.
Wow, got off on a tangent there! Anyway, I found several of the cliched ones you would expect to find which always make me want to puke over their sappy, sugary, 'life is perfect even though it isn't' crap, and a few really good ones that made me say, "These people get it".
And then I got it. I'm not sure I truly did before reading this. I'm not sure I ever really got past my own feelings about Tessie to wonder about hers. I mean, sure, I wondered what she thought about or if she felt left out or was hurt. But I never really wondered about whether or not she could feel my frustrations about her situation or my lack of patience with certain things.
And I am so thankful that I stumbled across this poem because every time I feel that frustration and impatience creeping up on me, I look at Tessie and think, "Why am I getting so upset about this? Imagine how she feels." And it usually dials that attitude right back down.
I guess what I am trying to say is that what this particular little piece really did was to give a "voice" ,so to speak, to Tessie. And I really do believe that if she could, my little Toots would tell you all of this herself.
So please read the following carefully. I did not write it but I wish that I had...
I AM THE CHILD
(Author Unknown)
I am the child who cannot talk.
You often pity me, I see it in your eyes.
You wonder how much I am aware of -- I see that as well.
I am aware of much, whether you are happy or sad or fearful,
patient or impatient, full of love and desire,
or if you are just doing your duty by me.
I marvel at your frustration, knowing mine to be far greater,
for I cannot express myself or my needs as you do.
You cannot conceive my isolation, so complete it is at times.
I do not gift you with clever conversation, cute remarks to be laughed over and repeated.
I do not give you answers to your everyday questions,
responses over my well-being, sharing my needs,
or comments about the world about me.
I do not give you rewards as defined by the world's standards -- great strides in
development that you can credit yourself;
I do not give you understanding as you know it.
What I give you is so much more valuable -- I give you instead opportunities.
Opportunities to discover the depth of your character, not mine;
the depth of your love, your commitment, your patience, your abilities;
the opportunity to explore your spirit more deeply than you imagined possible.
I drive you further than you would ever go on your own, working harder,
seeking answers to your many questions with no answers.
I am the child who cannot talk.
I am the child who cannot walk.
The world seems to pass me by.
You see the longing in my eyes to get out of this chair, to run and play like other children.
There is much you take for granted.
I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again.
I am dependent on you in these ways.
My gift to you is to make you more aware of your great fortune,
your healthy back and legs, your ability to do for yourself.
Sometimes people appear not to notice me; I always notice them.
I feel not so much envy as desire, desire to stand upright,
to put one foot in front of the other, to be independent.
I give you awareness.
I am the child who cannot walk.
I am the child who is mentally impaired.
I don't learn easily, if you judge me by the world's measuring stick,
what I do know is infinite joy in simple things.
I am not burdened as you are with the strife's and conflicts of a more complicated life.
My gift to you is to grant you the freedom to enjoy things as a child,
to teach you how much your arms around me mean, to give you love.
I give you the gift of simplicity.
I am the child who is mentally impaired.
I am the disabled child.
I am your teacher. If you allow me,
I will teach you what is really important in life.
I will give you and teach you unconditional love.
I gift you with my innocent trust, my dependency upon you.
I teach you about how precious this life is and about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you giving.
Most of all I teach you hope and faith.
I am the disabled child.
Sunday, December 19, 2010
GLEEful...
Last night was the annual Parade of Lights and Community night in our town. Thanks to a newly formed committee, WeGAS, the town was decked out and alive with Christmas spirit. It seemed so nice after last year's dismal display which is what prompted the committee to form.
Earlier in the afternoon we had taken The Toots to see Santa at the Fire Station. She thought he was pretty good and naturally we captured the moment on film, well, technically a memory disk, for posterity.
I was freaking out that Santa, who was definitely getting along in years and looked a tad peaked, might drop her. The fire chief, Marc, teased me quite a bit about it but I noticed he had given the word to the other people helping out to make sure Tessie was safe. And the icing on the cake was that The Bean showed up and, under the guise of having a photo taken with Tessie and Santa, was at the ready to catch Tessie should a mishap occur. Of course, everything was fine and Santa had a firm grip so all's well that ends well there.
Anyway, back to the parade. Dad came and helped get The Toots into the van and Ann had already scoped out and saved a prime spot for us to park downtown. She pulled out and I went to pull in and nearly took out the truck parked next to us. Dad was just a bit nervous and was totally over-reacting and back seat driving while I reversed, nearly hit the car behind me, shouted to Dad that everything was under control, swung back in and did the same thing. Again. Dad was shaking his head and muttering while I hopped out and said, "You do it!". My brother, who happened to be standing nearby watching this all with what appeared to me to be a little bit of disgust at my driving skills, hopped in and in a single motion parked the stupid van. Easy Peasy. Whatever.
And just so you know, I am a great driver. Never had an accident or even a parking ticket. Just sayin'.
So we get all settled and wait for the parade to begin. Dad and Ann went across the street into the stores to socialize. The Toots and I stayed in the van. It was too much hassle and too cold to take her out so there we sat. And I might as well be honest here. It sucked. It was so depressing sitting alone with Tessie and watching all the 'normal' families and their kids excitedly running around. I wish I could just get over it but things like that still sucker punch me. The whole "what-should-have-beens" kick in and the feeling sorry for myself covers me like Harry Potter's invisibility cloak. It is almost an ache that you can't quite pinpoint. Except you can. It is heartache.
Then my mom hopped in and distracted me from my doldrums. A very good thing. Then Ann showed up with a cookie for me. A very great thing. And then the parade started.
It was cute and fun and Tessie, who was up front and sitting on my lap really seemed to be enjoying it which really helped my ache ease up a bit. Then the GLEE Club float came by.
It was awesome. Of course, having Blake be a member might make me a teensy bit prejudiced, but I thought they were great. They stopped in front of the judges and sang and danced for everyone. They were laughing and singing and dancing and it just made you feel warm all over to see such a good group of kids having so much good, clean fun.
But they were facing away from us. Oh well, I was still grinning ear to ear and felt so much better after seeing them. The rest of the parade went by and came back through again for the final time.
This time the GLEE kids stopped directly in front of my van and performed all over again. Facing us. They were singing and dancing to Mariah Carey's "All I Want for Christmas is You" and when they sang that part they changed the "you" to "Tessie". Can we all say "AWWWWWWW??" They did this just for Tessie. I was so happy and proud of these kids. They totally embodied what the Christmas Spirit is all about...putting yourself out there to make someone else happy. And boy did they.
And to top it off, after they sang they ALL ran over to the van's window where Tessie was to say "Hi" to her and a very special "I love you Tessie" from awesome big sister, Blake.
I know Tessie felt the love from them all. I could literally feel her shaking in my arms which is what she does when she is super excited. Then, after they were gone, she gave a big chuckle.
And I forgot about feeling sorry for myself and for Tessie. I forgot that we weren't 'normal'. I forgot that Tessie wasn't out running around like all the other kids.
Thanks to Jessie and her young proteges, Tessie and I were both totally GLEEful...
Merry Christmas!!
Earlier in the afternoon we had taken The Toots to see Santa at the Fire Station. She thought he was pretty good and naturally we captured the moment on film, well, technically a memory disk, for posterity.
I was freaking out that Santa, who was definitely getting along in years and looked a tad peaked, might drop her. The fire chief, Marc, teased me quite a bit about it but I noticed he had given the word to the other people helping out to make sure Tessie was safe. And the icing on the cake was that The Bean showed up and, under the guise of having a photo taken with Tessie and Santa, was at the ready to catch Tessie should a mishap occur. Of course, everything was fine and Santa had a firm grip so all's well that ends well there.
Anyway, back to the parade. Dad came and helped get The Toots into the van and Ann had already scoped out and saved a prime spot for us to park downtown. She pulled out and I went to pull in and nearly took out the truck parked next to us. Dad was just a bit nervous and was totally over-reacting and back seat driving while I reversed, nearly hit the car behind me, shouted to Dad that everything was under control, swung back in and did the same thing. Again. Dad was shaking his head and muttering while I hopped out and said, "You do it!". My brother, who happened to be standing nearby watching this all with what appeared to me to be a little bit of disgust at my driving skills, hopped in and in a single motion parked the stupid van. Easy Peasy. Whatever.
And just so you know, I am a great driver. Never had an accident or even a parking ticket. Just sayin'.
So we get all settled and wait for the parade to begin. Dad and Ann went across the street into the stores to socialize. The Toots and I stayed in the van. It was too much hassle and too cold to take her out so there we sat. And I might as well be honest here. It sucked. It was so depressing sitting alone with Tessie and watching all the 'normal' families and their kids excitedly running around. I wish I could just get over it but things like that still sucker punch me. The whole "what-should-have-beens" kick in and the feeling sorry for myself covers me like Harry Potter's invisibility cloak. It is almost an ache that you can't quite pinpoint. Except you can. It is heartache.
Then my mom hopped in and distracted me from my doldrums. A very good thing. Then Ann showed up with a cookie for me. A very great thing. And then the parade started.
It was cute and fun and Tessie, who was up front and sitting on my lap really seemed to be enjoying it which really helped my ache ease up a bit. Then the GLEE Club float came by.
It was awesome. Of course, having Blake be a member might make me a teensy bit prejudiced, but I thought they were great. They stopped in front of the judges and sang and danced for everyone. They were laughing and singing and dancing and it just made you feel warm all over to see such a good group of kids having so much good, clean fun.
But they were facing away from us. Oh well, I was still grinning ear to ear and felt so much better after seeing them. The rest of the parade went by and came back through again for the final time.
This time the GLEE kids stopped directly in front of my van and performed all over again. Facing us. They were singing and dancing to Mariah Carey's "All I Want for Christmas is You" and when they sang that part they changed the "you" to "Tessie". Can we all say "AWWWWWWW??" They did this just for Tessie. I was so happy and proud of these kids. They totally embodied what the Christmas Spirit is all about...putting yourself out there to make someone else happy. And boy did they.
And to top it off, after they sang they ALL ran over to the van's window where Tessie was to say "Hi" to her and a very special "I love you Tessie" from awesome big sister, Blake.
I know Tessie felt the love from them all. I could literally feel her shaking in my arms which is what she does when she is super excited. Then, after they were gone, she gave a big chuckle.
And I forgot about feeling sorry for myself and for Tessie. I forgot that we weren't 'normal'. I forgot that Tessie wasn't out running around like all the other kids.
Thanks to Jessie and her young proteges, Tessie and I were both totally GLEEful...
Merry Christmas!!
Tuesday, November 30, 2010
Dear Santa...
Dear Santa,
I have a few things that I would like you to bring me for Christmas this year. I think that I have been a pretty good girl so you should definitely find my name in your list under NICE.
Okay, okay, so maybe I got mad at my kids for no good reason a few times and maybe, just maybe my hubby got the brunt of my stress and frustration every now and again. And yes, I love to tease people and I do whine some and feel sorry for myself every now and again. And that little road rage issue, well, what can I say, some people just really need to be flipped the bird every now and again. Still, I think overall I have been good so here are my Christmas wishes...
Please find a cure to seizures and give it Dr. Ann Bergin at 9 Fegan, Childrens Hospital Boston. If that is impossible, then please bring Tessie a seizure service dog to alert us when she is about to have one so I can shower or make dinner when I am home alone with her.
Please help my hubby get our new (now ten year old) house finished. He has worked so hard and been thrown quite a few, very unfair, curve balls so a little help in that arena would be very much appreciated.
Please leave, in my dooryard, a handicapped accessible van. Tessie is getting so big to lug in and out of a car seat and it makes it dangerous for her and the carrier. Insurance insists that this is not covered under their 'durable medical equipment' policy even though it is MEDICALLY NECESSARY.
Please make our home handicapped accessible as well. Your elves should be able to pull that off without too much trouble. Aren't they quite handy with tools? Insurance refuses to pay for "luxeries" such as this. Once again, even though it is most definitely MEDICALLY NECESSARY.
Please bring Tess a new wheelchair because she no longer fits properly in hers and insurance doesn't seem to agree that children will grow in a four year period.
Please bring me EVERYTHING in the Pottery Barn catalog and if it wouldn't be too much trouble, bring Nate Burkis to decorate.
Please bring me John Travolta (you know why) ;)
And most of all Santa, please help me keep the Christmas Spirit even when everything seems overwhelming and impossible. Help me keep my sense of humor and love of everything Christmas.
Hhmmm...I just reread my wishes and on second thought, Santa, you can scratch me off your list this year after all (except for that last part). I just realized I already have everything I really need.
I have my faith, my family, and my friends. And if we are to believe all the corny cliched Christmas movies, and I do, then that means I have everything.
I still believe in you Santa,
love, ~J
PS maybe keep John Travolta on there. 'kay?...
I have a few things that I would like you to bring me for Christmas this year. I think that I have been a pretty good girl so you should definitely find my name in your list under NICE.
Okay, okay, so maybe I got mad at my kids for no good reason a few times and maybe, just maybe my hubby got the brunt of my stress and frustration every now and again. And yes, I love to tease people and I do whine some and feel sorry for myself every now and again. And that little road rage issue, well, what can I say, some people just really need to be flipped the bird every now and again. Still, I think overall I have been good so here are my Christmas wishes...
Please find a cure to seizures and give it Dr. Ann Bergin at 9 Fegan, Childrens Hospital Boston. If that is impossible, then please bring Tessie a seizure service dog to alert us when she is about to have one so I can shower or make dinner when I am home alone with her.
Please help my hubby get our new (now ten year old) house finished. He has worked so hard and been thrown quite a few, very unfair, curve balls so a little help in that arena would be very much appreciated.
Please leave, in my dooryard, a handicapped accessible van. Tessie is getting so big to lug in and out of a car seat and it makes it dangerous for her and the carrier. Insurance insists that this is not covered under their 'durable medical equipment' policy even though it is MEDICALLY NECESSARY.
Please make our home handicapped accessible as well. Your elves should be able to pull that off without too much trouble. Aren't they quite handy with tools? Insurance refuses to pay for "luxeries" such as this. Once again, even though it is most definitely MEDICALLY NECESSARY.
Please bring Tess a new wheelchair because she no longer fits properly in hers and insurance doesn't seem to agree that children will grow in a four year period.
Please bring me EVERYTHING in the Pottery Barn catalog and if it wouldn't be too much trouble, bring Nate Burkis to decorate.
Please bring me John Travolta (you know why) ;)
And most of all Santa, please help me keep the Christmas Spirit even when everything seems overwhelming and impossible. Help me keep my sense of humor and love of everything Christmas.
Hhmmm...I just reread my wishes and on second thought, Santa, you can scratch me off your list this year after all (except for that last part). I just realized I already have everything I really need.
I have my faith, my family, and my friends. And if we are to believe all the corny cliched Christmas movies, and I do, then that means I have everything.
I still believe in you Santa,
love, ~J
PS maybe keep John Travolta on there. 'kay?...
Sunday, November 28, 2010
I heart NY;The Sequel...
I am going to be turning the big 4-0 in about a week and for this momentous occasion, my dad is paying for me to go to NYC. A bunch of girlfriends will coming as well and I think it will be a blast! But....
I have to leave the Toodle Bug behind.
This is already making me start to get teary when I think about it. And to let you know the seriousness of my despair, I am NOT a crier! I have never left her for more than a couple of nights since she has been born. I am torturing myself with endless questions and what if's.
What if she gets sick before I go? Will I still go? I keep saying that I am going unless she is actually in the hospital but could I really leave her if she were sick? What if she gets sick while I am gone and she wants me to comfort her and snuggle? Should I call and talk to her on the phone or will that only make her miss me more? Will she understand why I am not there? And the biggest and worst question I keep asking myself, will she think I have simply abandoned her? I know that sounds quite dramatic but how am I to know. I will explain to her that I will be back in a few days but will she understand?
ARGGGHHHHH!!!
Leaving Blake and Ellie was never this hard because they could talk to me and let me know that they understood I would be back. That my going away was only temporary. They could tell me that they missed me. But Tessie can't so how am I to know what she is thinking and, for that matter, do I really want to know because if I did I probably would just stay home.
While I am very excited about going and yes, even getting away from all the daily stresses that my life now has, I will be glad when it is over and I am home. But I am used to having these conflicting emotions. I have learned that they are all part of life with a child with special needs. Joy and sadness, pain and pleasure, pride and yes, even embarrassment (again, not by Tess but by things that she can do at very inappropriate times), all experienced almost simultaneously at times, to the point that you don't think you can take any more.
But you do.
And so I am going to my favorite city in the world. The Big Apple. I will have a great time with great people and be very glad I went.
I will also pay dearly for daring to have the gall to leave The Toots. She will probably refuse to look at me when I first get home and then she will look at me and cry like her heart has been broken. And I will have to deal with the fact that I was the one who broke it. I will have to sit and snuggle for quite a while in order to be forgiven and I will feel like a total selfish jerk because I put her through it.
What she will not tell me is the awesome time that she had with Sheila and Leo while I was gone. How they spoiled her rotten and took her to see the Christmas lights and Santa Claus. How they let her watch her favorite movie over and over again. How she got to sleep with Sheila every night.
No, I will only get the guilt and like the world's biggest sucker I will fall for it.
However, I comfort myself with two undeniable facts:
Tessie knows how much I love her and, I get to go to NYC during the Christmas season which I have always wanted to do.
Anybody got a spray can of Guilt-Be-Gone?...
I have to leave the Toodle Bug behind.
This is already making me start to get teary when I think about it. And to let you know the seriousness of my despair, I am NOT a crier! I have never left her for more than a couple of nights since she has been born. I am torturing myself with endless questions and what if's.
What if she gets sick before I go? Will I still go? I keep saying that I am going unless she is actually in the hospital but could I really leave her if she were sick? What if she gets sick while I am gone and she wants me to comfort her and snuggle? Should I call and talk to her on the phone or will that only make her miss me more? Will she understand why I am not there? And the biggest and worst question I keep asking myself, will she think I have simply abandoned her? I know that sounds quite dramatic but how am I to know. I will explain to her that I will be back in a few days but will she understand?
ARGGGHHHHH!!!
Leaving Blake and Ellie was never this hard because they could talk to me and let me know that they understood I would be back. That my going away was only temporary. They could tell me that they missed me. But Tessie can't so how am I to know what she is thinking and, for that matter, do I really want to know because if I did I probably would just stay home.
While I am very excited about going and yes, even getting away from all the daily stresses that my life now has, I will be glad when it is over and I am home. But I am used to having these conflicting emotions. I have learned that they are all part of life with a child with special needs. Joy and sadness, pain and pleasure, pride and yes, even embarrassment (again, not by Tess but by things that she can do at very inappropriate times), all experienced almost simultaneously at times, to the point that you don't think you can take any more.
But you do.
And so I am going to my favorite city in the world. The Big Apple. I will have a great time with great people and be very glad I went.
I will also pay dearly for daring to have the gall to leave The Toots. She will probably refuse to look at me when I first get home and then she will look at me and cry like her heart has been broken. And I will have to deal with the fact that I was the one who broke it. I will have to sit and snuggle for quite a while in order to be forgiven and I will feel like a total selfish jerk because I put her through it.
What she will not tell me is the awesome time that she had with Sheila and Leo while I was gone. How they spoiled her rotten and took her to see the Christmas lights and Santa Claus. How they let her watch her favorite movie over and over again. How she got to sleep with Sheila every night.
No, I will only get the guilt and like the world's biggest sucker I will fall for it.
However, I comfort myself with two undeniable facts:
Tessie knows how much I love her and, I get to go to NYC during the Christmas season which I have always wanted to do.
Anybody got a spray can of Guilt-Be-Gone?...
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Travels With Tessie Toodles-the Finale
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