A little piece of heaven

Dear Belle,

Today you turned 10 months old.

Something magical happened this month – you started walking! It started with a step here and there. Then one day you took 4 steps in a row. Another day you walked from mommy to daddy. And then another day, you took about 10 steps. We are so proud of you!

You are fearless. You fall, get back up, and try again. A fall here and there doesn’t stop you.

You still speed crawl when you want to get places fast, but more and more you are choosing to stay upright and walk to where you want to go.

You are now fully sleeping through the night, and falling asleep on your own. I can kiss you goodnight at about 8:30, you hug your Mickey or Minnie, and fall fast asleep. At around 6 am you wake up hungry for breastmilk, refreshed after a long nights’ sleep. Then at around 6:30 Nathan wakes up and you play with him for a while hour until daddy wakes up. You love having that time just with your brother.

This month you went to your baby play group every Friday and you are starting to get to know the other babies. You love your class and have so much fun playing with others.

You said your first clear word – GENTLE. We were at the RIE class, and you were trying to poke another babys’ eye. The teacher said, “Gentle Belle,”, so you repeated, Gentle. All of the moms heard you, gasped, and cheered for you. We were all amazed to hear you say such words at such a young age! You have many other words – mama, baba, dada, teta, tete, luca, nata, tata – and you love to make lots of other random sounds.

I love that you wake up so happy in the morning. You call me – MAMA – and you babble until I get you out of your crib and into bed with me. It’s the happiest way to wake up I’ve ever experienced.

You’ve also learned so many new games! Patty Cake, Tope Tope Tum, the raspberry game, the “I’m going to get you game”, and many more. I can teach you a game and you pick it up so quickly!

You love to feed yourself and are starting to get angry when I try to feed you with a spoon. If I cut up the food and put it on your tray you will eat all your food by yourself.

You are so much fun to spend time with. You are funny, determined, independent, yet LOVE being with people. I can watch you play and be mesmerized with how inventive and creative you are, how smart, you courageous.

I am so proud of you my Belle, you are one amazing little girl.

I’ve been told that people “don’t envy my life“. When I try to tell them that life with Nathan is wonderful, they think I’m either lying or in denial. They can’t see beyond the disability and all of its implications.

Yes, I can view Nathan’s situation through a different perspective and to choose to transform it into a gift. Yes, I can choose to focus on all of the positive way that being Nathan’s mom has changed me. Yes, we can treat Nathan as much as we can like a normal child and have tons of fun just living our life.

And this attitude is entirely valid.

But it wouldn’t be if there wasn’t an underlying foundation of reality. And truthfulness. And the truth is: it DOES suck.

It does such to have a child who can’t talk to me. It sucks to have a child who has no control over his body. It sucks to have a child who learns at about 1 millionth of the pace that other children learn. It sucks that he can’t play on his own or with other children. It sucks that he has a weak immune system and allergies and can hardly eat anything. It sucks for our life to revolve around therapies. It sucks to spend all your money and travel all over the place and spend all your time and energy trying to help a child and then have so little to show for it. It sucks that you will never be just another family, because there will always be so many more things to consider & deal with.

All of that is there.

When Nathan was younger I couldn’t see past this litany of complaints. As he got older and I matured in my journey, I couldn’t even remember these complaints because I was so busy transforming them into something positive. The mere thought of, “Oh I wish he could tell me about his day” was instantly replaced by “I love his nonverbal ways of communicating”.

Today I acknowledge the truth and reality of both. What’s happened to Nathan does suck. But I also refuse to stay stranded in the muck. I refuse to live my life in sadness and pity.

Instead I choose joy. I choose to acknowledge the reality and make the best of it. It’s like the monster in the closet. If you don’t acknowledge that you are scared by something in the closet, you will always be scared and run away from it. But if you acknowledge the truth of something that is scaring you, and you choose to confront it, you can then open the closet and realize it was just a fly. Then you live your life with a fly in your house, not a monster in your closet.

I heard about the special needs Recaro car seat some time ago from another mom in one of my Yahoo groups. So we asked our DME supplier to bring one over so we could try it out. While we waited for funding, I decided one night to look around for similar car seats from the same brand.

I found this car seat:

Recaro ProSport Combination Harness to Booster Car Seat

It is virtually IDENTICAL to this:

Recaro Special Needs Car Seat

So I decided to order the non-special needs one, which happens to be less than 1/3 of the price. Once we got it, I put the two side by side (I still had the trial one), and lo and behold, they were virtually identical in every way. Perhaps the only difference is that the ProSport one is slightly less cushiony.

Now that we had a perfect car seat that Nathan fit in beautiful, then we had the issue of THE HEAD. Meaning – Nathan’s pervasive lack of head control.

I decided to try one of my favorite adapations:

Brookstone’s Massage Wrap Neck Massager

I love this thing to pieces. We have about 8 of them laying around the house. We use them in all chairs, circumstances, etc. It is soft, gives him front and back support as well as side to side. Plus it’s super comfortable and he enjoys the massage feature.

Whereas before the car was super stressful for me because of the floppy head – I no longer worry about the head at all. In my car I use the Britax special needs car seat with the brookstone neck wrap, and now in Owen’s car we have the Recaro ProSport with the neck wrap.

Trips are now supremely pleasant and we never have to worry about Nathan’s head flopping all over the place. We love both of our car seats and highly recommend them to other families.