Having a child with disabilities..

First let me state that the title is loaded.. of course I guess there is a definition somewhere of what it means to be disabled. I know what disabled means but the word can carry many meanings and even people with the same disabilities are different from each other. I'm not gonna lie...before Sammie was brought into my life I guess I kinda thought all people with Down's Syndrome were the same. Not that it was something I thought about often but when I would see someone with Down's I sorta unconsciously put them in the same "group". I guess that could sound awful to some people. Let me also apologize for thinking that way and let you all know that I have since been enlightened!

I can't really say for sure what it's like to have a child with disabilities. After all, Sammie is only 20 months old and we have a lifetime of stuff to go through before I could really elaborate on this topic. But I can tell you what it's been like thus far. Really I should be going to sleep!

Sammie's father (Steve) and I are separated. Don't feel bad! It has been a blessing! We split for our own reasons but the truth is we are still friends and will always be partners in raising Sammie. It's also a blessing because we get breaks! I know that might sound awful but the truth is that sometimes it's tiring doing all the stuff we do for Sammie, his sister Darby, our jobs and all the other things life comes with!

Each morning Sammie wakes us up...and so the day begins. He is usually in a very happy mood when he gets up! I myself have always been a happy morning person! So we come out into the living room and of course he needs to be changed first thing. Then I put him in his high-chair and give him some cereal puffs to eat while I measure out his medications. I'm a tiny bit OCD so I always do it the same. First the .7mls of digoxin, I usually give that to him right away..well unless his mouth is full of cereal puffs! The I put the Prevacid solutab in the medicine dropper and add 5 mls of water to dissolve it. This is sometimes a pain because he doesn't drink water and so sometimes if I put to much he chokes a bit. :( As I'm giving him that I split the 2.5 mg Enalapril pill (half twice a day!) and crush it. I usually try to mix it with baby prunes to help keep the little guy regular! He doesn't really like any of the above occurrences but you know he never cries about it. He is such a trooper. Then I give him his breakfast. He loves eggs and bananas and cheese for breakfast. At his dads house I think he eats donuts most days!

Then we chill for a bit and depending on the day he has Physical Therapy at 8am. I think its usually Tues and Thurs. I still write them all done on my calendar cause we do a lot! Speech therapy is usually between 9 and 11 twice a week. We do lots of work and lots of play! Most of the time he tolerates these therapies but of course we all have a moody day once in a while.

He takes his Carvedilol at around 11-12 each day. This one has to be given at least 2 hours after the Enalapril so it all depends on what time he had his morning meds. Somewhere in this time he will eat then nap or nap then eat lunch! We're giving him big people food now! Very exciting! I still buy the baby snacks and stuff cause they're soft and easy to chew. So he can eat anything that we can cut with a fork. I always try to make it high calorie cause he is a tiny peanut!

Lately we have been going to the beach and of course there are always errands to run and things to do. Then of course depending on the day he might have Occupational Therapy (always in the afternoon, once a week) or Special Instruction (always in the afternoon also, twice a week). We usually have Mondays free of all these therapies...which is nice cause that is usually my one day off from work! Then again tomorrows Monday and we have to go see the Audiologist...darn. The doctor visits are fewer but we go to Burlington at least twice a month and we see his regular doc probably once a month.

So I go to work at 5 everyday except Thursdays (I go in at 4). Steve picks up where I left off cause that's what time he finishes his work day. Sammie has to have all the same medications at dinner that he had with breakfast. I'm not sure what those boys do but I imagine it's a lot like what we do! When I have Sammie for the night I pick him up around 10:30pm but it's been a bit later sometimes cause it's summer and I work at a restaurant and people come in 15 minutes before we close....JERKS! It never fails that he wakes up when I pull into my driveway. Sometimes he goes right back to sleep and other times he wants to stay up and party! That's the term I use to keep me sane and pretend like I'm having a good time! haha He is a pretty good sleeper and most of the time will sleep through the night! We still have our nights that we party alllllll night long though!

We repeat this everyday! But you know what it doesn't matter cause it's normal. I remember coming home from the hospital with pages of instructions about medications, dosages, feedings and on and on and thinking we'll never get this right. Now it's life and it's simple and it's what we do. I never even think about it really. I never think about it as different from the norm. It's just what we do. And when I chat with his therapists I realize it's what a lot of people do and we have it soooo much easier than a lot of people.

I really need to go to bed!