For 2 years now, we have been anticipating it, dreading it, scared of it, and waiting for it. Ever since the day we discovered Mowat-Wilson Syndrome and began our research, we've been waiting. When at least 95% of the population suffer from something, you know your time is coming. You hope and you pray that it won't be you and somehow you'll escape the inevitable, but in reality you know, and you try your best to prepare, and you wait, you wait for your number to be called.
And then it happens; and it's just as awful and scary as you imagined, only worse, because it is you, your family, and your baby.
For the past few days our house has been battling the sniffles, sore throat, and low grade fever; like so many others this time of year. So, after Nic returned from dropping his mom and sister off at the airport yesterday, we put Xander down for a nap because he'd started running a fever. Cole and I were busy taking ornaments off the tree and returning the house to normal while trying to contain Ella and her curiosity.
The hustle and bustle of the holiday had caught up with me and just as I was starting to lose my cool over the disaster of a mess in front of me and my to-do list that probably stretches a mile long, Nic rushed into the room, carrying the limp, unresponsive, seemingly lifeless, body of my baby boy.
Xander was having a seizure - we both knew it, we had heard what it may look like, we had researched the different possible scenarios, but we still were not prepared for the emotional toll. As Nic held him and I rushed upstairs to throw some clothes on, I couldn't help but wonder, why us? Why now? Could there be a worse time? Not that there would ever be a good time, but seriously - I already felt like I was struggling to keep it together with everything on our plates - and now this - maybe this will be the straw that breaks the camels (my) back?
Then, just as quickly as I begin to feel sorry for myself - I dug in my heels, picked-up my head, and remembered that we're in this together and Xander needs us now more than ever. So I threw on some clothes, rushed downstairs - loaded the kids in the car and jumped in the backseat holding Xander in my lap as Nic set a new land-speed record to the ER.
Just as we pulled up, Xander started coming out of it. After spending a couple hours in the ER, monitoring him and allowing him to sleep, we were released to go home. Our only instructions: to follow-up with our neurologist.
It's times like these that I want to give a huge shout-out and hug to our MWS family. From the second we got to the ER and I reached out - knowing I needed some support and understanding from those who have been in my shoes, they rallied around us from all over the world. Offering support, advice, and encouragement. So, thank you all - we may be a small group, but we are strong, and we are dependable, and we are family.
For the rest of you, I'm sorry I didn't reach out sooner. It was a horrifying experience and I was drained emotionally. It's taken this long to pull myself together enough to find the words to let you all know what happened.
We have 10 days left in California. There are so many of you that I hope to see before we leave, look forward to seeing on our journey east, and hope to meet up with once we arrive in New Jersey. But, I ask for your patience and understanding. It's going to be a stressful time for us and this new development throws even more kinks in the armor as we try to see doctors before we leave and set up appointments on the other end of our travels.
So, please keep us in your thoughts and prayers as we enter the new year. The next few weeks are sure to be a whirl-wind and any and all support would be greatly appreciated!
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