Tuesday, February 19, 2013

What is Most Important?

I had a "moment" last week where I was a bit bummed about Evan's development. Luckily these moments don't last long at all, not even hours. I remember posting before Christmas hoping that Evan would be sitting by the holidays; giving me that perfect Christmas gift. Well, we are still working on independent sitting but getting very close. As much as I wish he was more motor, I really cannot complain AT ALL. I feel a bit guilty that I put up a Facebook status saying how bummed I was about Evan's delays. I have friends who have children with special needs, some who may never sit independently and here I am complaining about how long it is taking Evan. I apologize for my lack of empathy in that "moment".

My frustration is from the unknown. Not knowing when he will sit, not knowing why he struggles with it, not knowing why it is so hard for him, to the point you can hear him huffing and puffing, and then why some other children affected with Harlequin Ichthyosis did not struggle as much as Evan has been with gross motor skills. Yes, he was preemie and weighed less than 4lbs at birth but we are going on 3 years old and no one can tell me why he is still so far behind.

We have done "all" the tests and seen "all" of the doctors. From Neurology and MRIs to Gastroenterology, dietitians, naturopaths and blood work. We have some type of therapy everyday, physical, occupational, speech or developmental. Physical therapy sessions are twice a week and Aqua-therapy sessions are twice a month. On top of all the therapy, I work with Evan on our "off time" with sitting, standing, walking, rolling and "crawling". I have been back and forth blaming HI for his delays, then his preemie status and then his diet.

I am shocked, amazed and thankful that we have avoided a tube. Some think it may have helped with his physical development but I disagree. Evan was gaining weight just fine, for a child with HI, until he was about 1 1/2 years old but was still incredibly behind in development. Ironically enough around the same time he actually started to do more physically, his weight gain was not as significant. It is hard to tell if his nutrition affected his physical development completely because if he was so malnourished to the point it dramatically affected his physical abilities then how could his brain develop to age appropriate cognition. The thing is, Evan is strong enough to walk, sit and stand. He just struggles with connections, always has, which seems to be more preemie related. We have a follow up with Neurology this week. As much as I wish he was further ahead, he has made an enormous progression since his last visit.

When it comes down to it, what is most important? Happiness is the key. From the very beginning I have stayed positive for Evan and his future. I NEVER doubted his survival and have only remained optimistic about any of the challenges we were forced to face. Now, 2 1/2 years later, I have more of these "moments" than I did during the first year of his life. I am exhausted. I did not picture this as our life, when I envisioned Evan's future as I rocked him as a newborn. I though he would be walking and talking by now. But with all of the skin care, therapy sessions and doctor appointments, Evan never really complains or fusses. He truly is the happiest, most pleasant child ever. As much as any mother says this about her own, it is true. For all of the concerns I have for him, especially the challenges he faces everyday with his skin, he is happy and loved unconditionally. He seems pleased with his life, smiles nonstop and loves to snuggle. What more could I want?

This video is a little old.. a few weeks.. but my smart little man in action!



  1. Aw De, you are such a great mom! Selah was smiling as we watched the video of Evan. I cant wait for them to meet!

  2. Love this post :) Evan is progressing in his own way, and you are an excellent parent. He has love, care and happiness around him. That's important.
    I imagine it must be hard not being able to see steady progress. It's interesting because I never had any of that therapy as a baby and child, I just saw a dermatologist and sometimes a dietician. I think it's great new treatments for ichthyosis are quite broad, treating the whole body rather than just the skin.

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