One of the Many Things Special Needs has Taught Me

You know when you have your baby and they come out seemingly perfect? You count their toes and fingers, ooh and aah over their cuteness, compare who they look more like? Moments we all look back on and treasure. Then you come home and "mom guilt" sets in. Am I feeding them right? Am I feeding them enough? Too much? Cloth or disposable? Home made baby food or bought? Public or private preschool? Soccer or baseball? Gymnastics or dance? Awana's or cub scouts? The list goes on and on. Then you start watching how little Sam over there interacts with his/her parents and they all seem to be in a bubble of love while your kid chases after their little brother with a rock and a look of passion for fresh meat in their eyes. You start screaming at the top of your lungs, your hubby goes chasing them down and all the while little Sammy is picking flowers for his/her mom. You just want to sit down and die. Your family never compares to the other family. You love your kids beyond measure but there is something wrong with them, right? They just never seem to behave or those times are few and far between. You feel like you are always a wreck and don't know what is working and not working when it comes to parenting. The fact is you are just tired because you are taking care of little people who can't do much without you and it takes two of you to accomplish what needs to be done in a day. And again you look over at the Joneses who have it all together and you don't understand what they have that you don't have.

Don't lie, we all do it. Maybe some of us more than others but, we all have our moments. We all have a different idea of what the perfect family looks like and it is never us.

And you know what my two little special super hero's have taught me? To not compare. I am not perfect and I still compare myself to other moms and my boys to other boys. But having kids with special needs has really taught me to not compare because I can't. I have to focus on the progress we are making as a family and how that is measured for us, not for you. I had a typical developing baby first who did everything fast and furious. Then I had back to back special needs boys who have come to their own milestones in their own time and in their own way. Now I have another typical developing baby who is like a little monster! Our family is so different from the "normal family" that there is no way to compare. It's apples and oranges and I'm grateful. I compare our life to what our life was a year ago and can be thankful for the progress in each and every child and in myself. There is no other family like mine so why compare to someone else's family? My kids don't compare themselves to what they can do by looking at others, they are excited each time they over come an obstacle. And my goodness, so are we!

Maybe you don't have special needs kiddos and are grateful for the health of your kids but this still applies. There is no other family like yours. Compare your family to your family a year ago. Celebrate the milestones or inchstones whatever they may be. Don't waste your happiness comparing your life to the life of another's. We have all only walked in our shoes and we know our kids better than anyone else and who they are - amazing kids.

 

What Was Supposed to Be Today

It is a weird day. Back in March after Nevin had the fun of going to the hospital and having a camera stuck thru his nose and had to say certain words and sentences we got the much anticipated phone call from the cleft team nurse that he was a candidate for surgery. Hurray! I was literally jumping all over the house and ready to scream for joy at the top of my lungs. It was an amazing moment. we scheduled our entire Summer around June 6, our surgery date. Then we were told to take him to have an MRI done to check out his carotid artery because another fun thing about 22q is that is screws up your anatomy in so many ways included the carotid artery. Yay! We scheduled it for 2 weeks before our post op appointment with our surgeon, plenty of time for her to review it. Well, two weeks ago we met with our surgeon and our world fell to pieces. First off, she did not do her homework on Nevin because she had no idea what she was talking about when it pertained to him personally. It was a very confusing and frustrating appointment that eventually ended in me saying,
"Well, what kind of surgery are you going to do on the 6th then?"
"What surgery? There's no surgery, who scheduled  surgery?"

For real. That happened. Not joking.

But! I refuse to live in that moment.

When the nurse came back we railed on her for awhile about everything and finally left with the promise from her that she would get us in to see the other plastic surgeon on the team. Sure. Whatever. It didn't sound hopeful. I started making arrangements to get into another hospital all together when she called and told us to come back the following week to meet with the other surgeon.

We walked into that meeting not very hopeful but were blown away by Dr. Linn and his knowledge and confidence. I really liked him. Nevin liked him. That gets another vote of approval for me. That kid can size up a doctor in 2.5 seconds flat. He never did like the other surgeon and I should listen to him more. Thankfully surgery is a possibility and is a go! We don't have a date yet but its a go.

Which brings me back to today. Today is June 6, the day we thought Nevin's speech would be changed for the better for forever and instead its been a normal Thursday. I am not gonna lie, it sucks. I wish surgery would have been today but its not. I know there is a plan and I have faith that everything will work out better this way. But I am a little sad today.