Tuesday, July 28, 2015

"You have a tough baby."

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."

Umm...screw you.

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.


  1. I love that face! Omg he's just so sweet, I want to snuggle him!! I love reading about how amazing he is, you got me all teary eyed! He melts my heart and I haven't even had the pleasure of meeting him in person, YET! He is beautiful and special, he is your rainbow. He is lucky to have you as his mama. ❤️❤️❤️

  2. You are an incredible mother to a miracle child. I too have a special needs child, very tough some could say, but I say soooo worth it. What is normal anyway, and who cares. This job is for the strong, the ones who can handle the children who need us the most. You are both so lucky to have each other. I'd love to meet your family someday, you are not alone.

  3. You are an amazing mother to that sweet boy. He has the most heart warming smile. I am sure it is hard hearing things like that and I can only imagine how trying things can be sometimes, but you are so right that all the wonderful things Jack brings to your like outweigh any struggles. You are one of the strongest people I have had the pleasure to get to know and you are such a great role model for Jack. I know he will be able to handle anything with you by his side. He is an absolute miracle and I know he is the light of your life! Enjoy those snuggles from that little boy who loves you more than anything and tell that woman to F-off. :) <3 <3 <3

  4. You are such a strong mama! He is adorable and an absolute joy!

  5. He is beautiful! And so lucky to have you as his mama! <3

  6. Reframe the word tough - he is a tough baby because he is a fighter as are you and your husband. Things will be harder for him and you guys but he is tough and can get through those challenges. And he is also so stinking cute!

  7. When I read this post title, I read it as a strong baby until I read what that awful woman said. So I am gonna stick with that idea instead. You do have a tough baby and you are tough too: strong, resilient, sturdy and well built :) <3

  8. I'm late to this, forgive me! That woman was a classic example of "you need to think before you speak." And if she had, she would have realize how wrong she was - not just because it was offensive to say, but because your baby is such a blessing and such a strong little guy. He. Is. PERFECT.

  9. "To get so wrapped up in not being 'normal' that I forget that 'normal' doesn't matter." <--- that's a powerful statement, and so very true. Chickin, you're my hero. I'm sorry this comment ruined a perfectly good night's sleep, but I understand why it did. We were prepared for a year in the NIICU with Rosa, we knew she was sick and would have to fight, and that we would have to fight for her. I can't fully picture the rage I might have felt if someone made such a comment about Rosa, but I'm pretty sure it would have been similar to your reaction. When I think of Jack, I see joy, happy, love. Tough? Well, if you mean tough as nails just like his mom & dad, then, yeah, I can see that. But if you mean challenging or difficult to manage, then I'll claw your eyes out. No one here doubts your ability to mother your children. Like I said: you are my hero. You are the best mother in the whole world to Jack and Petey. They know that. Love you, dear <3