Tuesday, October 16, 2012

I am a special needs mom

I am a special needs mom. A mom who knows about:

Watching the weather closer than most weathermen and then trying to make the decision of whether or not it is safe to keep your child home when the weather turns nasty because you live on an island and the closest hospital is over an hour away by ferry. If it's running.

Having your child be on that ferry, in the middle of the bay, and stop breathing because she is having seizure after seizure after seizure.

Racing up to the local medical center only to leave by ambulance and be taken to the airport and flown off the island because your child is too sick to wait for the ferry.

Alarms screaming in the dead of night to wake you from a not so sound sleep because let's face it, there hasn't been a good night's sleep in so long you don't even remember what it feels like to wake up really rested.

Immediately having your heart racing as you check the video monitor to look at your child. The alarm continues to blare as you try to see, from your bed, is it just that there isn't a good connection because she is wiggling, or is she not breathing well? Is she having a seizure?

Dragging yourself out of bed for the third or fourth time and standing beside your child as they look at you with eyes begging to "help" them yet they can't tell you what's wrong. Their breathing is jagged and their motions are jerky but try as hard as you can, you just can't figure out the problem. Stroking them and telling them you love them with tears in your eyes because you feel so helpless and a parent's number one job is to help their child.

Some days not being able to shower because you don't dare to leave her alone long enough to have one.

Not being able to go out of the house whenever you want or need to because you can't manage you child on your own because they have gotten too big and oh, yeah, your back is in constant pain.

Fighting for all the things the law says your child is entitled to but the people in power don't want to give her because it costs money. From schools to insurance companies to the State you live; all fighting you because of a dollar.

Having to explain every detail of your life to a stranger on the phone to justify why your child deserves to continue to receive certain benefits. Like home health care. Or a wheelchair.

Changing diapers on a little girl who isn't so little anymore. Who will soon be going through puberty and all that that entails.

Always having to be sure you never run out of life saving medications. And oh my God, there are so, so many medications to keep track of.

Mixing up those meds three times a day.

Carrying a "jump bag" everywhere you go that is filled with emergency meds and oxygen and actually being more concerned about that at any given time then where your pocketbook might be.

Thinking you're going to an appointment only to end up in an ER and then more often than not, end up admitted for at least a few days into the hospital.

Being able to work the hospital monitors that your child is hooked up to so you don't have to call for the nurse, again, to do it for you when the alarms sound.

Speaking with primary care doctors so often that they give you their pager and home phone numbers to keep "just in case" something should come up and they're not on call.

Having to pick out wheelchairs, lifts, tub chairs, and handicapped vans.

The "friends" you see the most often are your child's nurses, therapists and special ed teachers.

Becoming close enough with the people at the companies who provide all their equipment and feeding needs to joke and laugh with them on the phone and just chat for fifteen minutes or so to "catch up".

Trying to juggle the needs of your other kids with that if your special needs one. Always knowing you could be doing better at it.

Leaving your child in Special Care without you (but with someone they are close to so they won't feel alone) because another one of your kids has a big part in the school play and if you miss it, that's it. You won't get to see it again.

Worrying about the very real possibility that you could miss seeing your daughter's graduation from high school because your special needs child might get sick/have a seizure/be too loud to stay in the auditorium or any one of a hundred little reasons that could come up.

Having a nurse come into your home one day because your child has finally gotten "sick enough" that even the State realized that a normal parent cannot be expected to do this alone and then coming to think of that nurse as a family member. A sister. A fellow soldier in the fight to keep your child alive. A security blanket. A life line. Someone who makes it possible for you to not only stay for your daughter's high school graduation and not miss a minute of it but actually be able to relax and enjoy it.

And above all, the constant fear of, is this it? Is this the time the seizure/infection/disease wins and you will lose her for good. And then the realization that all of the above amounts to diddly squat when you think of what it means if you never have to do any of it again.

So, yes, I am a special needs mom. And grateful to be one.


  1. Bravo Post! Very sweet... and filled my eyes with tears. I am new to blogging, and have been following your blog as one of my favorites.. As I am a Behavior therapist for special needs children. Being a Mother of Special needs is hard work! I love the t-shirt posted.

  2. So, I am sitting on the ferry you mention with tears rolling down my cheeks, which I know wasn't your intention at all. Just wanted to let you know I don't work Monday thru Wednesday, so I would love to be able to help you in any way I can. Just show me what I need to do, even if it's sitting woth her while you shower. Please call me...you are my biggest inspiration! <3

  3. All I can say is, WOW, you are truly an inspiration to others. Makes me not even want to bring up my petty complaints in the course of the day. God Bless you and all the work that you do. You are an inspiration, and keep writing I love to read it.

  4. Found your blog today through Love That Max. We have much in common, so happy to connect. Looking forward to reading more about your family. Thank you for sharing :)

  5. Beautiful. Just beautiful. And only another special needs mom would totally and completely see that LONG, LONG. LONG list of everything you have to do every single day and then totally and completely understand the incredible sorrow that would engulf you if you didn't get to do that list every single day. That is the very definition of love, my friend. You are amazing.

  6. Wow - YES! You are not alone. (But wow with the doing all of that on an island). This all sounds so familiar. Glad I found your blog. Heather