A Marathon

Since Nic left, at 3am on Thanksgiving morning... yes, I know - nice... What was even better is that the whole house was up to see him off... Ok, not so nice, but we actually had a great Thanksgiving with friends and both boys were on their best behavior, despite Cole refusing to take a nap all day after his early morning wake-up!

Anyhow - as I was saying, since Nic left last week, I've been scouring the internet and pouring over different chromosome studies that are accepting participants, trying to get somewhere with someone and to tell you the truth, I don't feel any closer to anything.

The results from Xander's chromosome microarray came back normal. I know... "That's great." right?  Only, when you know something is going on with your child and most of the specialists he's seen agree that there is most likely some type of chromosomal disorder responsible for all of the different symptoms and characteristics he's presenting, it just makes things that much more frustrating.

And it becomes even tougher to swallow when I think of how hard I had to work just to push this microarray through the insurance company at the suggestion of the neurologist, even though I told him that the syndrome I feel Xander most closely resembles can't be detected through a microarray because the deletion is so small you have to perform a FISH test, using fluorescence to map the pieces of the chromosome, to even detect it.

So, although I'm not a doctor and I could be wrong, I feel like after all this work we are back at square one, with no answers and a neurologist who has basically exhausted all the options he is willing to pursue and wants us to see a geneticist, which we should have seen long ago, but the insurance company repeatedly denies the referrals for... aaahhhhh.

Then I take a breath.

I step back.

I look at things from a fresh perspective.

I'm renewed.

It's amazing, the roller coaster of emotion that you ride. One moment it's hopeless and the next "you can do it."

I think my moment today came from talking with my cousin, Amber, over Facebook. She was asking me questions and trying to help me navigate referrals, sharing with me some of the valuable information she learned by advocating for her child. I want to thank her for that. It's nice to have people reaching out and really trying to help.

But, what dawned on me after chatting with her, as I was giving Xander his bath and getting him ready for bed, is that I don't need to be in such a hurry.

Sure, these things are annoying and it would be nice to have some answers and have a diagnosis, but even if a doctor could tell us definitively tomorrow what is going on, in the short-term nothing would change. We would still have our weekly appointments with our physical therapist, occupational therapist, feeding specialist, special education teacher, and visual therapist.

And, unlike other parents who have to navigate this road of doctors and specialists as quickly as possible because for their child it's a matter of life and death, we - as far as we know- have time on our side.

We aren't in a sprint... we're in a marathon.

I'm reminded that although I want answers, what I need is to embrace each stage my child is going through and be present for both of my boys instead of glued to the computer, looking for a solution to something that may have no answer at all.

Life is going to be slower for us. Stages are going to seem to stretch forever and milestones are going to be few and far between, but they will still be important and we need to enjoy the time between them with a child who has so much joy in his heart he reminds us on a daily basis that we can't measure success by other peoples' standards.