Thanks to some friends of my aunt, Jessica, I had a conversation last night with a woman who has a 15 year old daughter who suffered a stroke when she was a few months old. I was so anxious to talk to her because I don't know anyone who has been through an experience that is similar to ours, and we really feel like we are making things up as we go along. This mom was amazing and our conversation took so many turns that it's hard for me to even think straight about it, never mind write about it. She was wonderfully kind, articulate, informed, and impassioned about the cause of helping children with stroke. She offered such a unique perspective, as well as a number of resources and ideas for how to get Mairead more of the help she needs. She was so positive, yet completely straightforward about the journey she and her family began when her little girl was first diagnosed. Though our daughters' strokes are very different in how they presented and what caused them (her daughter has a clotting disorder, and the cause of Mairead's stroke has never been determined), but there are many similarities in our experiences. I can't thank her enough for the time she spent talking to me (and hour and 20 minutes!), and I hope to keep her as a friend and resource in our life as we continue to do everything we can to help Mairead.
As I said, she was incredibly positive and offered so many ideas and resources. The hard part was that she was also very honest about how life for her and for her daughter is different than for most parents and children. Even though I know that Mairead suffered a life-altering neurological event for which there is no 'cure,' I want her to be cured. I want her to get the right therapies, education, medical treatment, etc, and then we will wake up one day in a few years and she will be all better.
It's possible that in five years she won't show any deficits. It's also very possible that she will always show deficits. The unknown is very hard for us to deal with. Research on childhood strokes is limited, and without a co morbid condition or underlying cause, Mairead's type of stroke leaves us with even less information. Simply, no one knows when, or if, or to what degree she will get 'better.'
I believe that she is an incredibly smart and incredibly determined little girl who has a chance to live a wonderfully happy and normal life. She has a family who will do anything for her, and we have surrounded her with friends and professionals who truly care for her and who will support her as she faces the challenges ahead. At the same time, I can't bury my head in the sand and ignore the possibility that she will always be a little different from other kids- that she will always need extra help. We can't assume that she will always go to a 'regular' school or that her life will not be any different. What we can do is to give the opportunities achieve whatever she wants while surrounding her with the supports she may need to do that.
I feel like I am always filling this blog with details about the challenges we, as a family, face because of Mairead's stroke, and sometimes I worry about being too negative. I do worry a lot- probably too much- about Mairead, about her friends, her education, her happiness, and her future. I worry about the boys and whether or not they get enough attention while we are dealing with the red tape, doctor's appointments and therapies. I worry that my family and friends are tired of hearing about this or that they wonder why we don't call or hang out as much as we used to. I worry about the strain on Dave and me, and whether or not we are doing the 'right' things for our children and for one another.
But I also try to fill this blog with pictures of their beautiful little faces-smiling, laughing, or covered in food. I try to share the sweet moments that we have with our little ones and as a family. I want to share each major and minor success that our kids enjoy. I also share all of this so that when our kids are old enough to read and to understand, they can go through these posts and see their childhood through my eyes. I hope that what they see is a happy family with parents, grandparents, aunts, and uncles who would do anything for them. I hope they have memories of playing in the yard, going to the park, visits from family, apple picking, and playing ring around the rosy. I want them to see how much fun we had together- not just at big events but every day. I want them to see how much they are truly loved, and that there is nothing we wouldn't do for them.
Thanks for reading.