Thursday, October 3, 2013

An Overdue Update

It's unfortunate that I find myself updating this blog so infrequently, even now it's at the behest of a friend. The real problem is it's a mish-mash update and doesn't give the insight into life with a child with Spina Bifida that I was so hoping to provide to pregnant couples who just got their diagnosis, or parents of an infant with Spina Bifida, or even to update those who care about my family. Getting sucked up in long days and short months is just how it goes.

Anyway, Squish is doing great. I mean that, truly I do. Over the summer he went from largely non-verbal and signing to consistently using five word sentences. It blows me away and I love his little voice. His speech therapist is really impressed with his progress. Back in May, urology took K off his prophylaxis antibiotic. He was on that because there's just no way to do intermittent cathing without introducing bacteria and germs into the urinary tract. But he was doing so well, we decided to stop it. June, July, and August all had UTI's. Each one more serious than the one before it. August was a Staph infection. So, after lots of phone calls and having records and lab results faxed, we're back on antibiotics. I'm fine with that for now, but the ultimate goal is to not need them. As far as physical therapy goes, Kemper is now in a shoe insert, not a brace. He still has some balance and gait issues, doesn't run or jump, but he's on the move and he is quick.

Kemper's third birthday is fast approaching, and with that there will be much celebrating, with Mickey Mouse, as that's his jam right now, but there will be a ton of sadness too. He will be aging out of Early Intervention and moving into Exceptional Children for preschool. I am "losing" the people that have made giant differences in Kemper's life. His case worker, Jessica has been a shoulder, a support, a sounding board, and the doorway to improving Kemper's quality of life. He's had an Occupational Therapist that helped him learn to eat solid food without gagging. He's had a physical therapist who has worked with him since he was just a year old. She has developed his strength and helped him learn to walk and climb, and taught Brett and I how to work with him daily to keep developing. Speech Therapy, I can't even believe the leaps and bounds there. We started off trying to get him to consistently use the same vowel sounds, now he's saying, "I want Mickey Mouse, sausage, and fizzy juice, Mommy!" Aging out of this program brings me to tears. Not because he won't have access to therapy or I won't have a new case worker, but because I have a true love and appreciation for these people and how they have touched our lives. My son is doing all these wonderful things and I have such gratitude for these people for helping him. I'm tearing up now just thinking about this.

I've discovered that my predisposition to anxiety has a breaking point. All parents need help, no one can take on all responsibilities, put tons of pressure on themselves and succeed forever, and I found that out over the summer too. When cracks start to show, it's time to re-evaluate and take some things off your plate. For me to be the best Mom I can be, and a healthy person, I needed to change my ideas of what I had to be as a special needs parent, a stay at home mom, and an activist. I had to rediscover who I was and what I wanted to do as a person, not a parent. I had to give up some things on my schedule that hurt. Especially not participating in this year's Walk N Roll, but I needed to do it in order to be healthy.

Brett and I are enjoying every moment of being parents, some less than others, there's some whining and crying that 2 year olds do that isn't terribly endearing. However, a pudgy little hand wrapped around your neck and a sweet little voice begging for one more hug before bed will make our hearts explode. Of course we have our schedules, Brett's job is demanding but he spends as much time as he can with our family. We have multiple therapies, doctor's appointments, and typical household demands every week that make us tired just thinking about them. But we are learning to break things down into do-able chunks so that we can really enjoy our time together and our time to ourselves. Of course with Halloween this month, being that it's truly the most wonderful time of the year, our calendar is even more jam packed, and we are insanely happy about it.

Learning to shrug off the invisible weight of everything that isn't done and all the things that I cannot do is going to be a lifelong lesson. I will always have to work on that, because tend to freak first and think later. Diligence is something that luckily comes with the territory of being a special needs parent, so I'm a step ahead on that.