“Family Vacation” -Shelly

We just had our first big family vacation. Overall it really was great, we had good strong family moments, Lilah got to chase seagulls, Tyler got to ride in a helicopter, and I got to swim in a tank with dolphins! We had some magnificent food and a good recharge from work and social life. You know what we didn’t get a break from? Our CTD world. 

We had to budget and save up for a year to take this vacay because we have medical bills we are paying and we are fixing to get more since Lilah is going to get leg braces, so we did have to be a little reserved in what we could and couldn’t do. I still had to educate. Just people being people and making small talk… but I really wanted to address everyone like, hi this is Lilah she’s fixing to be 2, yes I know she’s small for her age, no she isn’t walking, yes she is in therapy, yes the doctors are aware, she has creatine transporter deficiency… it’s rare… it’s genetic… “Will she be ok?” Umm yeah, I think she is fine even now.

We took family beach pictures and after about 10 minutes the photographer asked, “Is she autistic or something?” So… there we had to educate again. I also had to practice keeping my cool, I mean I already had a 2-year-old on a beach trying to take photos before a storm hit… maybe not give the stressed momma another reason to explode?

I found myself looking for people who might get it, the mom who would understand why I was hula hooping while holding my daughter or why I had to support her so much when she wanted to stand. On one of the cruises, I found a little breath of fresh air in a woman whose little boy was wearing SMOES. It was pleasant to just be in the presence of someone who got it, and looked me in the eye when we spoke, instead of eyeing my daughter like she was radioactive.

Even on the beach, we had a blast, but our CTD world crept in. We found ourselves trying to get her to crawl on the sand and other various therapy techniques. She loved chasing the seagulls. We found it so odd that instead of going after the whole flock she would single one out that was outside the group and chase it. Tyler said maybe she thinks it’s slower because she’s also on the outside of her group of friends. Is that really how my baby feels? On the outside? Different? Am I doing a horrible job of making her feel normal? Like she belongs? Whoever said you can relax on vacation lied.

Apparently carefree and no worries are missing from the dictionary of special needs moms. Although we did get a nice break from our little worries, we surely didn’t get any type of retreat from CTD. It’s mentally exhausting some days. Here’s to no rest for the weary… Now, where’s my coffee? I have an NIH Clinic trip to get sorted out for next month.

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