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.

Going through the motions...

You know how you have those moments in life where you feel like you're going through the motions, doing the things that you need to do, but you're almost outside of yourself, you aren't really experiencing anything and everything seems like it's just passing you by??

That's how the last few weeks have felt.

I know we're busy, in fact we have almost every day chalked so full of appointments and some semblance of normalcy that we barely have time to breathe, but I'm left feeling empty. Like I'm not even playing an active roll in my own life anymore. And what's more frustrating, is that there's no end in sight.

I keep telling myself that we can make this work - we can schedule all of our therapist appointments on Tuesdays, Wednesdays, and Thursdays so that Mondays and Fridays will be left wide open so we can attend play dates and participate in fun activities like a normal family... but inevitably, we end up scheduling additional specialists on those days and boom we have 5 days of appointments scheduled before I know it again.

What's escaped me to this point is finding a balance.

It's my job to make sure that my kids can relax and just be kids a few days a week, but I also know we need to fit these appointments in to give Xander every early intervention opportunity available so he can reach his full potential. And so far those two objectives haven't been able to coexist and I'm not sure how I can make it happen either. Then, to top it all off, I've been so worn out and exhausted with everything that I'm starting to lose my temper with both Nic and the kids and become a person I barely recognize!!

It's funny, because as I'm writing this and beginning to process it all, I'm starting to realize how desperately I need to make a change now, before this becomes a pattern.

I'm not sure at this point how it's going to fall into place or what it will look like, maybe if I start with myself and concentrating on what I need first, then I'll have more energy to apply towards everything else that needs attention.

So, I'm going to make a pledge to myself and all of you, that this week I'm going to focus on myself. I'll do some form of exercise for at least 30 minutes everyday, eat healthy meals and snacks, and take a bath before bed, right after the kids go down every night so that I can have some time to relax, unwind, and catch-up on my sleep.

Hopefully by next week, I'll be feeling more like my old self with energy to spare and I'll be in a better position to tackle the rest of my to-do list!!

Wish me luck and I'll see you all next week!