Jack had his first PT appointment with Early Intervention today. It went okay overall. He's delayed with some of the physical milestones but that's to be expected due to both his dwarfism and the torticollis. Apparently at almost 4 months his head control and certain movements are measuring more like a 1.5 month old. I'm not surprised about this but it was still a little hard to hear.
The therapist had to do a full evaluation so she asked about any and all medical issues and concerns then she had me list off the specialists he's needed to see so far: Geneticist, nephrologist, audiologist, ear/nose/throat, orthopedist. And, oh yeah, all his regular appointments with his pediatrician.
Her response? "Yeah, you have a tough baby."
I don't quite know why this bothered me so much but it really did. And now here I am at 2:00am unable to sleep even though I so desperately need it because I'm upset about her comment.
Sure he has some issues; acid reflux, not a great sleeper, we think he may have sleep apnea, he's pretty fussy in general. And of course, the skeletal dysplasia and all the physical challenges that come along with that.
Sure we have to make some special accommodations for him: His back and neck have to be straight and supported at all times so he can only lay in certain bassinets instead of swings and other toys. He needs (and wants) to be held almost all the time despite my back pain but I can't wear him because it would do damage to his back and neck. I won't be able to put him in exersaucers or sit up chairs. We'll have to physically alter parts of the house to make things accessible to him. He may not crawl. It will likely be a very long time before he can walk...
So it's hard. So he's delayed. So what?
Don't make me feel like we have some deficit. Don't tell me we have a "tough baby" and give me an 'out' to feel bad for myself.
You asked about all the challenges. What about all the good? What about the fact that he is so smiley and adorable that he just melts everyone he meets? That he LOVES his mama and loves people and loves to talk and tell them stories? What about the fact that even after a night of very little sleep when I'm exhausted and can barely function all he has to do is give me a smile and all that just disappears? What about the fact that we worked SO HARD for this baby and it doesn't matter to me that he has special needs?
I don't want a reason to feel bad for him or for myself. Yes he has (and will have) challenges. But these were the cards we were dealt and I am still LUCKY to have him. I don't want people to give me a reason to forget that. To get so wrapped up in things not being "normal" that I forget that "normal" doesn't matter. I am so grateful for this child and so happy he is in my life that these challenges don't matter. They don't need to define him or us.
Acknowledging that things are tough is one thing. It's true; things are tough. But calling him a "tough baby" is another. I am grateful for my tough baby. He is the light of my life, challenges or not.