783.42

Tuesday, October 16, 2012

I do a lot of reading these days, not because I have an abundance of free time, but because I feel as though I have no choice. Sometimes, I feel crushed by the weight of everything; other times, I feel freed by the sense that at least I have knowledge.  Knowledge is power; knowledge is something.  And something... I have to do something. If I stay crushed by the self-doubt and fear, then I can't act.  And acting- especially on behalf of one's child- is the greatest of all things in my book.

The kids had their three year old check-up yesterday.  Thankfully, they both are deemed wonderfully healthy, in supply of a good diet, and looking great for 3 year olds.  Seeing where they were at birth, this is such awesome news.  Maya was, as usual, 3 going on 30 in her grown-up demeanor and good behavior.  Bobby.... Well, had I been watching through a one-way window, I probably would have shaken my head and checked "autistic" on my list of behavioral conditions.  He was in rare form; complete and utter meltdown, complete with hair pulling (mine) and biting (me, for the most part).

It wasn't pretty.

Things aren't always rainbows and sunshine at Casa Haytko.

Let me start off by saying that we are really, really lucky.  For the most part, Bobby is a sweet and happy child.  There's a speech delay, no doubt, and a significant one, but behaviorally, things are getting better as he gradually improves with communication.  But it is a slow, gradual change and, on days like today, where his routine is upset, dealing with him alone would be tough but dealing with him and his twin sister is something that makes me want to cry.  Maya realizes that Bobby has some special needs and she is like a second mother, rubbing his head and telling him "It's okay, Bobby" or falling into his arms when he reaches out to her for a hug and letting him hug her like a rag doll.  But it breaks my heart that she is maturing beyond her childhood because she feels the need to be a secondary mommy. And, say what people will about the bond between twins, watching her with him when he is in the throughs of a bad meltdown, is like seeing a mirror into my soul, as she vacilates between trying to physically comfort him and crying because even she cant reach him.

It's awful.

Our pediatrician is great.  She definitely worked with him to get the exam portion done and was calm and cool when he bit her (he bit me 4 times and tried countless other times, so I'm kind of happy that she only got bit once). I ended up having to hold him down on the floor so that she could listen to his heart and lungs.  The weight and height measurements are good guesses at best; all in all, it was a rough hour.  Having a second adult wouldnt have made it easier (unless there was some sort of blood work or the like) and, in a way, this was good thing because it showed the doctor how hard it can be with him.  She 100% supports his speech therapy and is almost as ticked off as I am about our IU experience (there's more to come on that).  She wrote a prescription to submit to our insurance company, in order to try and get the speech covered.  Her diagnosis was "developmental delay as a result of prematurity", with the ICD of 783.42.

In case you aren't a nutball like me and you don't have parts of the ICD committed to memory, that code is for Delayed Milestones.  It's pretty generic and can be used for therapy if your child isnt walking by a certain time or, in our case, isn't talking at age appropriate levels.  But it doesn't come just for fun.  It comes with the emotional impact that your child is delayed.  For us, the exact words were "Severely developmentally delayed".

It's not that this isn't what I expected. In fact, I went in with the knoweldge that I was going to ask her to make that clinical determination so that we could submit it to our insurance as proof of medical need.  But when a doctor looks at you and tells you that, although your child is physically healthy, they are emotionally, developmentally, and socially below age level, you can be as prepared as you want, and it's still a TKO to the mat. Even knowing what I wanted to talk about with her and being prepared didnt stop the sting.  How could it?  As a mother, we want the absolute best for our children; we dont want them to struggle. Knowing that they are fighting demons that you cant even begin to slay on their behalf is not just a beat down, it's emotionally exhausting.

I havent been sleeping well; with the exception of last night when I just fell to the pillow and collapsed, I cant tell you the last time I slept a night without the aid of sleeping pills or simply stayed awake all night until my body finally shuts down (usually around 4:30am, when I should be getting up to run).  There's a constant stream of thought in my head; there's a book in my hand about this or that; they are shoved into my purse, lugged around with the laundry so that I can read a page or two here or there, or tossed at Peter for his scientific take on X, Y, or Z.  My children are ever present in my thoughts and, currently, those thoughts center on making sure each of them has enough one-on-one time to know that they, individually, are special and perfect in the eyes of mom and dad, making sure they have enough time to just play and be 'kids', making sure that preschool is a good fit for them, and trying to balance their lifestyle with activity and nutrition. On top of that is the marathon training that is sliding downhill at such a pace that I am hoping beyond hope to just be able to finish, my own nutrition which is lacking, and trying to finish out the XC season on a high note because I love coaching and spending time with the kids but am struggling to make the time commitment work because, as it is, my time is so thin.

It's amazing to me to hear parents tell me how I have it together when all I think about is how things feel like they are on the cusp of unraveling... How I feel like even going to the bathroom is scheduled (and sometimes behind schedule!)... How I can't imagine facing another day but before I know it, the week is over.  Somehow, the time is there and we make it.  Somehow, we manage to snuggle on the couch and have story time and make a break for the kids to have special time.  Somehow, there are more smiles than tears, and more laughter than meltdowns.  So, we're winning the war.  But the battles?  Sometimes, I feel like I'm getting my ass kicked all over town and back.

7 comments:

St Elsewhere said...

Sorry for the pathetic support I have extended to you for all these days.

I just want to squeeze your hand, and offer you a virtual hug.

Sorry for the issues, when sorry does not even cover it.

sprogblogger said...

I'm so sorry you're having to go through this terribly hard stuff. Are there any of your responsibilities outside of family that you could let go of for a little while? It might help you to refocus and find some peace, because it really does sound like you have an enormous amount of stuff on your plate--both the good and the bad. Too much for right now, maybe, while you're learning to navigate through these very tricky waters? Just a thought. I will always count you as one of the more inspirational people I know, and I know you'll get through this--I just wish it wasn't so hard on you. Thinking of you and yours.

sonja said...

I get it. *hugs* Let me know if you need anything, even just to vent and yell and cry.

Amy L. said...

Mama, that's a lot to bear. Thinking of you...

Hastings Family said...

Michele as a sister to a little sister with downs and an Aunt to triplets which one has Autism I can tell you she's not comforting him as a "mother". She's being a sister. Most people are compassionate and will help any who needs help be it physically helping someone from a fall, hugging when they are having a rough day, listening when they just need to get something out. Maya is just being compassionate and a loving sister. There's nothing wrong with that. Seeing my niece and nephew do the same thing with my other nephew showed that it was just being a sibling. They are still able to have their lives but when their brother is in melt down mode they both go to him, help him until someone else that knows how to calm him down gets there and then they go an play :) I hope insurance excepts and helps with the therapy. HUGS. I'll say a prayer for your family tonight. Everyone looses a battle now and then. What counts is getting back up and going on. :) You have such an amazing family. Bobby has some amazing siblings and an amazing uncle watching over him and you guys. :) Head up.

Baby Smiling In Back Seat said...

Thank you for writing so honestly even though I'm sure some of these things are hard to say to yourself, let alone to everyone.

Love to all of you.

Michele said...

Thanks guys :)

And, HF, I know what you mean. My brother is 'typical' but growing up I still wanted to look after him and take care of him. Even now, I struggle with being far and not able to just fix everything for him. What you say makes perfect sense. Thanks for the reinforcement from a sister's POV :)