Selah’s Test Results
Since the 4th of July we have been enjoying summer in Montana on Flathead Lake. I work remotely, while Mark and the kids adventure and get epic tans (luckily, I already have a head start). Mark’s great grandfather purchased the property between Lakeside and Somers in 1929. His family has been spending summers here ever since. This is how Mark grew up and we want to provide the same opportunity to our children. Our hope is that they have countless summers here for the rest of their long lives.
On June 30th we got Selah’s genetic test results back. The odds fell on our side, and she does NOT have PKAN! She is a carrier (50% chance), like Mark and I, and while she will have the ability to pass PKAN on to her children, her partner can be tested to eliminate the risk. We are so grateful for this news.
Selah will always be my first baby. There is a special bond between a mother and daughter- especially a daughter that is your first child. I prayed for a little girl when we were trying to get pregnant. From the moment she was born, she has been absolutely perfect. The most beautiful little girl I have ever seen. Not only is she gorgeous- but she is precocious, talented, and sharp as a tack. She loves dresses, sparkles, gems, rainbows, rocks, fishing, swimming, sushi, books, horses, and so much more. Her imagination is endless, and nothing gets by her. She is more impeccable than any daughter I ever dreamed of having. My heart never loved anything more than my sweet Selah. When Loic was born, my heart grew. But nothing will ever take the place in my soul that is forever occupied by her.
Loic’s condition has impacted her. Have we been the best parents and done things perfectly through this process? No. Selah notices much more than we often realize. The attention Loic requires. The actions we are taking to save him. She has asked why he gets videos and why he has events. She knows it is because he won’t be able to walk, and talk like her. She doesn’t know it is because of a disease that will take his life in a few years if we don’t stop it.
I’m grateful that our kids are too young to use the internet and learn about what PKAN really is. Have I thought about what will happen when they are old enough to look it up or to see Loic’s website and social media posts? Of course. Those are things we will have to address if that time comes. Right now, I don’t anticipate ever having to explain to Selah that Loic is dying because we will find a cure. Finding a cure requires sharing the hard truths about the realities of PKAN. You cannot look at Loic and his sweet being and not want to do something to save him.
We will continue to work with our doctors and counselors to navigate this complicated situation with our children. Am I terrified we will mess it up? Yes. Am I worried we are screwing Selah up? Yes. Are there times I wish I could explain to her why she should cherish each moment with Loic instead of stealing every toy he wants to make him cry? 100%. Is there a manual on how we navigate this shitty situation? No. All we can do is parent with love and be truthful with them to the extent they can comprehend it.
This experience continues to show us the value in our community and friendships. It has forced transitions in relationships that I once thought were meaningful to ensure we are surrounded by those that truly care about our family and have our best interest at heart.
I have always been ambitious in my career and continue to feel torn between success, being the primary financial provider, and being with my kiddos. Balancing the ever-growing needs of our family with that ambition is no easy task. Nor should it require an immediate answer for how I am going to accomplish it. For now, it requires blocking time for work, for family, and now for finding a cure. This means when I’m working, I’m at work. When I am parenting, I am with my kids. And after the kids are sleeping, I’m working on finding the cure. Luckily, I now have the support of family, friends, and community standing by my side to accomplish it. As mothers, we find the way to do it all and are supported by those that care about us.
I will forever hold my children tightly each night. I will kiss and hug them whenever I can (even though they already hate it). I will show my daughter what it means to be a strong and successful woman, which she already is and will continue to be.
