Monday, September 27, 2010

Isn't it ironic...

We are heading to Childrens Hospital Boston today and it's got me thinking about the first time my hubby and I went there.

It wasn't even with The Toots.

The first time we were at Childrens was when we made a wrong turn on our way to Brigham and Womens Hospital for a second opinion on my thyroid cancer treatment.

I had, by this point, had two surgeries to remove my throid and around 30 or so lymph nodes. I was so tired and in so much pain from constant muscle spasms in my back and having been undiagnosed for so long with cancer that I couldn't be left alone with The Toots because I could not take care of her.

This was also before anyone was willing to admit that the Toodle Bug was not acting like a 'normal' baby. Especially me. I felt so absolutely miserable that the thought of having to handle one more thing, much less something as huge as what it might mean for Tessie (and if I am being honest, me), was just too overwhelming. Little nigglets of doubt would creep in about why Tessie wasn't doing this or that, but I would sweep them away as fast as they popped up.

Denial. Self protection. Whatever you want to call it I refused to focus on those nasty little doubts that wanted so desperately to be heard.

And the rest of my family and friends were the same way. I think because they were also so scared for me and my health that they thought either I couldn't cope with one more thing or that they couldn't. Probably both.

Nobody would admit what was staring us right in the face. We all even went so far with out denial that we came up with the most ludicrous reasons as to why Tessie wasn't hitting her milestones. And they all involved the fact that I could not do the same things with her that I had done with my other girls because I was sick.

How's that for a kick in the pants?

The reasons ranged from, "She isn't getting enough floor time to build up her strength in her neck and body because Joanna can't lift up and down to the floor." to "She's the third baby and you just don't try as hard to make them do the things that you did before". And my personal favorite, "You can't compare what she does with what Blake and Ellie did. All babies are different."

It really speaks to how sick I was that I let myself be deceived by all that BS. Normally I am a very practical girl and would much rather face things head on than be in denial about them.

Ah well, such is life I guess. And now, Childrens Hospital is a place that I feel the most at peace because nobody looks at us with pity or fear or shock. We are just another family. A normal family. At least for a minute.

But I think about that first drive into Childrens and how my hubby and I looked at each other and both fervently agreed, "Thank God it isn't one of our kids that is sick. Thank God we are just making a wrong turn here and not needing to bring in one of the girls."

Isn't it ironic....

Monday, September 13, 2010

Charlie's Angels...

I have been sick in bed for the past three days. I do not know what kind of killer virus attached itself to me but it kicked my butt hard which meant that I was physically not able to take care of Tessie or do much of anything for Blake and Ellie either. This would present quite a dilemma were I not married to the man that I am married to.

Charlie is the definition of a 'hands on' father.

When Blake was born he changed her first poop (and was even overheard muttering "even her poop is cute"), gave her her first bath and got up in the night, every other night, to do the night time feedings. When Ellie was born it was the exact same scenario. He was right there for everything. And he loved it (well, the poopy diapers eventually got old).

And there were many people who made comments to us when I was pregnant with The Toots about how we must be trying for a boy and wouldn't we be disappointed if the baby was a girl? I was pissed but my hubby pretty much took it in stride as he told people, "Anything that I would do with a boy I can do with my girls so why would I need to have a boy?"

And he meant it. He has taken the girls canoeing down the Saco river, White water rafting, camping on class trips at Acadia, taught them to build birdhouses, how to ride a go-Kart and a fourwheeler, made them tire swings, zip lines, tree forts, and nearly every other conceivable thing you can think of while insisting that they help so that they can learn how to do it for themselves. Often times I could be heard shouting something along the lines of, "Don't let them do that! They are going to get hurt!" With his maddeningly calm response of, "They'll be fine."

And even though everything about Tessie, her needs, and how she interacts with the world has basically been different then with Blake and Ellie, he has made sure that she gets the same 'daddy' treatment as the other two girls even if he has to tweak how he manages to do it.

I have gone outside to find him riding with her in his lap on the four-wheeler and while I stop to have a small heart attack, I can hear her giggling. Or he'll tell her he is going to take her on the sled in the snow and while I fuss about her catching a cold or something equally neurotic, he takes her out and piles the sled with blankets and tows her around the yard. Or sits outside in the evening with her on his lap in front of the chiminea with the fire dancing off of their faces while she looks on enraptured by her daddy.

These past few days I have watched him change poopy diapers, make up Tessie's formula, get her ready for bed, make sure she has had her meds, and basically do most of my job with few complaints and lots of love. He has signed permission slips for Blake and Ellie and made sure to get to both of their soccer games to cheer them on. But none of this is new for him. He has always been like this with his girls.

After all, these three girls are Charlie's Angels...

Tuesday, September 7, 2010

And so it goes, and so it goes...and I'm the only one who knows...

This has been a big week for many parents that I know. Either their kids were leaving home for college for the first time or starting Kindergarten or even their 'last first day' of high school. Most of these parents (who I've been reading on Facebook) are feeling the empty nest syndrome in one form or another. They are thrilled and excited for their kids, of course, but a bit sad and nostalgic at the same time.

When I read their posts I try to be sympathetic and wonder how I will feel when it is my turn to send one of my girls off to college. For some reason I just can't feel their pain. I have chosen to not comment because what I really want to say is, "You have no idea how lucky you are." This is supposed to happen. This is normal. And for one of my girls, The Toots, this will never happen.

Tessie will never leave for college. She will not graduate high school. I will not get to sit in the auditorium and listen to her possibly give a speech about her future or tell tales from the class trip. There will be no Grand March. No father/daughter dance. No first kiss. First love. No wedding in a white gown as her dad proudly gives her away to the man of her dreams. She will live with us until we are no longer physically able to care for her.

This is not how it was, or is, supposed to be.

And so it makes it easier to look forward, not to having Blake leave, but to this rite of passage that every child should get to experience. The same goes for Ellie. Every time something comes their way that they can possibly partake in, from sports to plays to sailing on a schooner, I encourage, because I am so grateful that they are physically and mentally able to do all of those things.

Now don't get me wrong. I know that the parents who are feeling a bit lost without their kids at home or whose kids are just starting out in 'big school' are very grateful that their kids are experiencing all that life has to offer. I also know that if my circumstances were different, I would be commiserating right along with them. Ay, there's the rub. My circumstances are so very, very different.

While everyone can understand the feelings of the empty nest syndrome, few can understand the feelings of a parent whose nest will never be empty.

Usually I try not to think so far down the road. It will be a bumpy road to say the least, filled with many twists and turns, so why bother fretting over it now? But as Blake get closer and closer to her high school graduation and Ellie hers, I can't help thinking about what does, and what does not,lie ahead for Tessie.

I can only hope it will be good. I can only pray that I am up for the challenges and rewards of always being a stay at home mom.

But keep your eye on me (if at all possible) when the day comes that Blake and Ellie do graduate. After all my big talk about how it is normal and the way life is supposed to be, chances are I will be bawling like a baby and thoroughly embarrassing myself while crying out, "No, I'm not ready to have you leave!"

After all, I need to remember that two of my babies will leave the nest some day. They will give speeches and go on class trips and have Grand Marches and father/daughter dances. They will go on to hopefully marry and have families of their own.

Aw, crap, I think I'm getting teary just thinking about it...

Friday, September 3, 2010

Anticipa-ation is making me wait...

Day four and still no seizure. I am waiting, like a kid at Christmas waits for Santa, to see a seizure rear it's ugly head. I want her to have one. I need her to in fact. It is so very, very important that she does it now. Let me tell you, it is an odd sensation to be wishing for your child to seize because, ultimately, it will be for her own good.

Every time Tess tenses up I spring like a coiled rattlesnake ready to 'capture' the event. And usually she would have had at least two by now. But you see, my Toodle Bug plays by her own rules. And right now she is refusing to even get into the game.

I know it sounds wrong to say that I want my child to have a seizure so let me explain how I got to this seemingly 'sick' state of mind.

The Toots has been diagnosed with a seizure disorder since around the age of three or maybe a bit younger. The hubby and I immediately felt like Childrens Hospital in Boston was the best place for her to go. We have never once regretted that decision.

We met her neurologist, the very knowledgeable Dr.Coulter, who, after giving her a forty-eight hour EEG, ordered a medicine called Keppra which controlled the seizures for nearly three years. It was like a miracle drug. Then two summers ago something changed. Tess began to seize uncontrollably.

We rushed her to the mainland and she was admitted into the Special Care Unit for a day and a night. The Keppra was increased and seemed to work but a couple of months later the seizures started up again and this time The Toots was in bad enough shape that she had to be taken by ambulance from Rockland to Childrens in Boston.

I rode in the ambulance with her and let me tell you, that sucked! And not for the reason you would think, that I was scared for The Toots. No, it sucked because I was riding backwards in the 'jump seat' and it bounced all over the place. But it was also funny because my little Angel was flirting with the paramedic between seizures. Giggling and batting those big brown eyes at this huge teddy bear of a man named Justin. It was just too cute.

At any rate we arrived safely in Boston and Tessie was seen by her team, given another EEG, increased her Keppra once again (now near maximum dosage), gave her an MRI and sent us home. Like before, the seizures were controlled. This time for almost a year. Then, once again, the pattern repeated itself.

Uncontrollable seizures, ambulance ride to Boston (this time Buh rode the 'jump seat') and a three day stay at Childrens trying to figure out how to treat The Toots.

To date, no matter the amounts or types of medication we have tried, and God have we tried a lot, nothing works that will completely control them. She continues to have break through seizures. To the point where I researched the Ketogenic Diet and we began that as a treatment. Even though the diet has many health risks, we figured we did not have much to lose because the seizures were beginning to not respond to emergency interventions. In short, we were losing the battle and fast.

When she first started the diet we thought we had found the miracle we had been looking for. For three whole weeks Tessie was seizure free, then BAM, like a thunder storm after a heat wave, they were back. At first they weren't bad. Maybe one every ten days. Then every five and now nearly every two.

I try not to dwell too long on what this may mean for The Toots. It is just too scary to even consider. But like a mosquito buzzing in your ear that you just can't seem to ever quite swat away, I feel the fear trying to gnaw it's way into my brain and heart. I refuse to cave into it.

Failure is not an option.

And so we are back to what prompted this EEG. The doctors, all of them from Epilepsy to Neurology, to Genetics, to her pediatrician want the results of this monitoring. Hopefully it will tell them something useful. Something that will break this vicious cycle. I pray they find the answer but I fear that there isn't one.

But right this minute, right this very second in fact, I just want that kid to have a seizure so we have something to work with.

As I finish this blog post Tessie is in bed with Baby Tad singing her lullabies.

Still no seizure.

And so I continue to wait with bated breath...