It’s been a while since I’ve posted and I have much to say…I’ll try not to drag it out too long.
If you don’t know where I’ve been all month, I’ve been at Camp. Every June our church does a sports themed camp for kids ages 4 years to 6th grade. During these four weeks, life outside of camp ceases to exist. I realize that most people have a 9 – 5 job and then continue to function with the rest of their life but there’s something about spending 8 hours with 125 children that just drains me. I get home and crash for the rest of the evening – order pizza and nap till bed time then get up and do it all over again the next day. I’m probably making it sound awful and it isn’t at all – I truly love it, I just have to shut down the rest of my life in order to survive it.
Amidst all the craziness of camp we had some medical challenges. It felt like we were falling apart for a few days. On June 19, Mike and I ran a 10k race with our teammates (H2O Runners). We both did well and given the major heat, I was happy with my performance. The next day Mike had to take me to the emergency room – I thought I was having a heart attack. It wasn’t a heart attack – pretty sure of that – but we aren’t really sure what it was. The ER doctor said my potassium was low – probably dehydrated from running in the heat the day before. My family doctor said it’s probably GI related – extreme reflux or esophagus spasms. BUT, my heart does have some kind of funky rhythm that seems to be throwing the diagnosis off – making them unsure anyway. So I have to follow up with a cardiologist next week. In the mean time, I feel ok but I’m not allowed to run which has been very frustrating given the impending marathon.
A few days after my “heart attack”, Mike had to have minor yet unplanned surgery. A doctor appointment turned into “why don’t we go ahead and fix this today”. A few hours in the hospital and some pain meds and he’s all good.
The day after Mike’s surgery, Mikayla had a follow up with her ENT to recheck her ears. In May he had agreed to giving us six more weeks to see if the fluid would clear up before putting tubes in. The fluid didn’t clear up. Last Friday, July 2, she had surgery to put the tubes in both ears. The surgery went well and Mikayla handled it MUCH better than her Mama did. She’s so easy going anyway that it really didn’t phase her. She was very angry waking up from the anesthesia but I really think it was more about being tired and hungry than about the trauma of surgery. She had a nap and some food and you would never have known anything happened.
Crazy times right?
This week we are in St. Louis at the Williams Syndrome conference. We were somewhat apprehensive about the decision to attend. WS is so rare that we haven’t met many families who have children with WS so we weren’t sure what to expect. For all we knew this conference would consist of body paint and nude campfire dancing. Maybe that’s a bit extreme…
If you’ve spent any time with Mikayla you know how overly friendly she is. Imagine walking into a room with 300 people just as friendly. Just walking from the car to the front desk of the hotel I was greeted at least four times – not once by hotel employees but by people with WS. We’ve received more hugs from strangers in just a few days than we ever have before. This has by far been the friendliest group of people I’ve ever been around. Every elevator ride or pause in line is an opportunity to make a new friend or give a hug. No such thing as “keeping to yourself” or “having personal space”. It’s new for me. I like my personal space. But it’s very refreshing and humbling and comforting all at the same time.
The first night here, we were sitting at a table in a room full of first time conference attendees. A little girl – probably 5ish – that I’d never seen before walked right up to me, laid her head on my shoulder and started petting my arm. I looked down (a bit startled) said hi. She looked up, said hi and that my necklace was pretty then turned around and ran back to dad. Standing in line at a merchandise table a young man (I think he said he was 20 or 22) turned around and started talking to us. He hugged Mikayla – which has happened a lot, mostly initiated by Mikayla. A few minutes later before I knew what was happening his arms were wrapped around my neck.
We’ve attended four sessions each day. They have been great for the most part (6 out of the 8 have been fantastic, 2 of them I could’ve passed on but overall it’s been great). We’ve learned some things about dealing with issues we might face as Mikayla gets older. We’ve learned about the importance of discipline and nutrition and exercise and dealing with anxiety and obsesiveness. But, more than anything else, I think, are the things that haven’t necessarily been taught. It has been wonderful to have the priviledge to interact with teenagers and adults with WS. It’s comforting to see how happy they are and how fulfilled they are and how well they have adjusted to the world around them. We’ve learned that just as much as every typically developing child is different, every child with WS is different. There are many, many things that make them similar but they are each unique in their attributes and abilities and appearances and personalities.
The biggest thing I’ve learned so far is how blessed we are to live in a city where there are doctors, therapists and educators who are knowledgeable about WS. To have a probable diagnosis at 2 weeks and a confirmed diagnosis before Mikayla turned 2 months old is unheard of. Even more surprising is that the professionals we have been fortunate enough to work with are either already familiar with WS children or are willing to take time to learn about it. There has been a lot of information given during these sessions that is meant to be new and informative – most of it Mike and I already know. That’s not saying anything about us – that just shows how blessed we have been by a community who has helped to educate us. We have been told over and over that Mikayla seems to be doing so well for her age and I have no doubt that this is hugely due to the wonderful people who helped us care for her during the crucial, early months of development.
We have met several families that I hope we will stay in contact with for many years. These conferences are held every other year and I have every hope and intention of coming to every one for as long as we can. Eventually, the information and teaching will not be as relevant for us but the opportunities for Mikayla to make life long friends who are like her, who understand her and know what it’s like to be in her shoes is just phenomenal. Here, no one is different or strange. Here everyone is just loved and accepted for who they are – personal space invasions and all!
I haven’t had much opportunity to take pictures but intend to do so befre the week is out. I’ll try to post them once we get home. Much love to everyone and expect me to return home as a hugger!