Wednesday, January 15, 2014

Six to Eight Weeks? Try, Three Years.

On Sunday I was talking with my mom and reflecting back on our journey with Isaac, and it hit me that I have finally found my stride in this world of special needs. It has taken three years, almost four, actually, but here I am, more awake than ever. I've spent the last three years tired with my eyes half open. That's not to say I am bursting with energy, because I'm not, but I'm happier with the energy that I do have. 

When I was pregnant with Isabella, other parents used to tell me: Just give it six to eight weeks, and things will get better! Before she was born, I had no idea what they were talking about. Then she was born and, well, I was in the club and they were right, around eight weeks things got better and I found my footing as a new mom.

That wasn't the case with Isaac. At eight weeks we found out that instead of needing a laproscopic surgery that would require a very small incision into his skull and a very short surgery, he would need a full blown cranial vault reconstruction and orbital advancement which would require an incision going all the way from ear to ear, and would be a six to eight hour surgery...but actually ended up being a twelve hour surgery. Add to that the fact that he spent almost all of his waking hours screaming, or crying (I'm sure you know the difference if you're a parent). The screaming went on for over two years.

I feel like due to his medical history, I've bonded and re-bonded so many times over the past few years with Isaac, that I know him inside and out. I have probably grown to over-calculated his needs or responses to situations and I'm just beginning to loosen the reigns and give up a little bit of control at a time. Preschool has helped a lot. I know that I can leave him in a safe place and he will be able to manage just fine without me. But I am always so eager to pick him up from school because he has grown from a screamer, to a really funny little guy.

Maybe when special needs becomes a household word in your home, it takes three years, instead of six to eight weeks to find your ground. For the most part, we have our plan, we know what appointments are necessary and what goals need to be met. This morning as I was talking with a mom in the waiting room at Isaac's therapy appointment about friendship among children who have special needs, I shared that I worry about the future for Isaac and whether or not he will be accepted. I told her how much I love to see that his preschool classmates interact with him and get excited to see him join the class in the morning, but I don't know what that will look like in five or ten years. Conversations and topics like that, still bring strong emotions to the surface.

I never thought I would love to live in a bubble. But I love the safe bubble my home provides for me and for Isaac. In our house, I forget that he has developmental delays, and I forget that a three year old not using his mouth to eat is abnormal, and I forget that he's almost four and I'm still changing his diaper. Within these walls the differences aren't as apparent.

Last week, in pictures...

"When I grow up, I want to be an artist and make my masterpiece just like this. But I'll have to ask the director at the art museum if it's okay for me to make my masterpiece this way." 

"Isaac, we're birders, so we're going to look for birds."
"Okay, Beeda."
"Isaac, I have to go to the bathroom. Let me know if you see any birds!"
"Okay, Beeda!" 
...."See bird! Me see bird!"
"You saw a bird? I didn't get to the see the bird! I'll never see a bird!" and so begins the crying. 

If you're new to special needs, and you feel like you're drowning, it will get better. Maybe it will take only a few months for you, or maybe five years instead of three, but you'll find your ground. And I guarantee you will be stronger than you ever thought possible.