I realize that I am way overdue on updating the old blog on all of going’s on in the Marlett house this summer. It is not easy to find time to blog much these days, much less go to bathroom when you have four children…my life is full, and so is my bladder on most days. However, today by some stoke of genius, my wonderful husband was able to take some time off and took 3/4’s of our kiddos out for the afternoon so that I could have some quite time, in our house, alone, with a sleeping baby of course. Ahhh, all I hear is the sound of air, really…it’s the sound of the oxygen compressor.
Summer here in the Mid-Atlantic has been hot and humid, much like it has been for the past nine summers that we have lived in this area. I can hardly believe that it has been nine years since we moved from our little house in the Midwest, I miss Midwest summers. We live with our AC on pretty much from Memorial day to first day of fall, it keeps us all comfortable, especially our extremely heat intolerant child. Even in our climate controlled house, Lucy is struggling with temperature regulation more than we have ever seen in her, all of this is as a result of her autonomic nervous system dysfunction. She sweats profusely one moment and is freezing cold the next. Whenever she feels hot or sweaty she cries,“I needa takea baf!” Since she fixates on things, when she announces this, a “baf” is almost always what we end up having to give her to calm her down and cool her off. Of course, bathing Luc is no easy chore, she can not get her lines wet. When we built our house a few years ago we had a sink installed in our kitchen that is big enough to bath a small child, and a small child is often what you will find in our kitchen sink these days.
We have some wonderful friends who very graciously allow our family to swim in their beautiful pool whenever our little hearts desire. I am not sure how much they realize what an invitation like this means to our family. It allows our kiddos an opportunity to swim with their sister who otherwise would not be able to do so. We have a system in which we push Lucy’s wheelchair right up to the edge of the pool so that we have a place to set her oxygen tank and various pumps. Then we saran wrap, twist, and cover Lucy’s lines with a swimming shirt so that she can, for a few minutes or however long she can tolerate the movement of the water on her body, “swim” with her siblings. Lucy only lasts in the water for a few minutes before she asks to lay down on one of the lounge chairs or on someone’s lap. She is content to just sit and watch the kids, which means that mommy is able to just sit and watch the kids too. The other three kiddos are like fish in the pool. Sophie taught herself how to swim sometime in the last year, not really sure when it happened but one day she just set her mind on passing the swim test at the pool so that she could go down the side with the big kids, she did it and has been swimming without a life vest ever since. She is one determined kiddo, I wonder where she gets it?
Jack just finished two amazing weeks at the University of Delaware. He was accepted into the New Arc Academy, a program for kids gifted and talented in math and science. The focus of the science, robotics, computer camp was on genetics this year, a subject area that Jack is learning more about than we ever thought he would at his age. Apparently, Jack shared with his group some about mitochondrial disease and his understanding of genetics. His instructor shared with me how Jack was able to explain what an autosomal recessive inheritance pattern is and why he knows and understands it. She told me that he was very knowledgeable about the disease and obviously a very caring brother to his sister. Smart and compassionate…what more can you ask for!
Megan and Sophie have been keeping busy with various camps, dance, and music lessons. Even more, Megan and Sophie,and sometimes Lucy too, have been spending hours in our basement playing babies, house, hospital, school, and lord knows what else. It very often looks like a tornado has come through our house, and in the middle of it are three or four (Jack would kill me if he knew I wrote that he played house with his sisters) happy children playing together. I love to see them all playing together… I love to watch them all interact…I love listening in on their conversations with one another. Megan is so maternal to Lucy, Jack will do anything he can to assist her, and Sophie just plays with Luc like she is normal kid… it is amazing to witness. Drew and were recently discussing the kids and all their glories and short comings too, we both shed some tears when we talked about how much they are going to miss Luc when her time here on earth is done. We want them to have as many everyday memories as possible, memories that only siblings can share. That is “quality of life” in our opinion. I love when Lucy says to the kids, “member when…” and they either respond with laughter or fill in her missing words. This summer is allowing us time to make memories.