Oh how my heart hurts right now. Not because of my daughter. The testing is moving along as it should and things are well. But on the other side of OKC one of my dear sweet friends is also in the hospital with her child. Her son Nikko has Dravet Syndrome. It is one of the intractable epilepsy's. Nhora, Nikko's mom has welcomed our family into her home several times. She has helped us in so many ways. With wisdom that only comes from experience, outreach to help Avagrace get some much needed medical supplies, and love for all of my children as she calls herself "Auntie Nhora."
In fact it was only a week ago today that I saw Nhora and sweet Nikko at our monthly HopeLink support group meeting. His mom Nhora and father Dana, are also some of the advocates that was present at the Capitol meeting with Senator Connie Johnson. Yet, today, Nikko is in the PICU fighting for his life. He is on a ventilator and needing a platelet transfusion. And the kicker (as if one is needed) is they do not even know why. How this "kicker" comes to light so often in the case of epilepsy. There are so many unknowns that even doctors can't explain. And the only thing that will change that is awareness, research, and the knowledge that comes from these factors colliding. PLEASE PRAY FOR NIKKO & HIS FAMILY!
For a long time I have struggled with the guilt and grief that comes from seeing my friends and their children and families suffer, while others with no known differences thrive. From being a mom in the special needs community I know many unique children. In fact, I am at the point where I know more children with "unique" syndromes and conditions than typical children! And it never makes sense when one child thrives and another goes down hill. Despite doing everything the same. The perfect example of this is one of my other friends whom has twins with the same genetic makeup. The same diagnosis. And yet one of her sweet boys has joined our Creator and the other is still in her arms and is thriving! What a complex grief that must be. How is it that despite every variable being controlled and taken into consideration nothing "adds up."
I honestly think that this is one of the reasons why I hate math. I understand that "it is the way it is" and "you get the answer from following the formula." But LIFE is not like that. Despite this being a scientific-mathematical world there is nothing predictable about it. I don't care what you tell me about "evolution" or equations. I have lived and learned and seen more than many people have who are far older than me. I absolutely am not saying that I have seen it all or am an expert in everything. However, it would be foolish to think that what I have studied, experienced, witnessed, and lived has not taught me something. And despite all of that, the hardest thing to fathom, the thing so many people try to refute; is we are not the creators of our destiny no matter what way you spin it.
We are in this world that was CREATED. There is so much that we do not know and will not know until we are walking in Heaven with our Savior and our Father. It is faith that reminds me that we are ALL HIS children and that no matter what we do, we will one day be with HIM. It is not up to us to determine when that is. We can make all the right decisions and that doesn't mean that we will see tomorrow. But that doesn't mean that we should just throw our hands into the air and watch life pass us by. We are here, where God placed us, entrusted to use our brains and our bodies for good. He did not give us "Chutzpah," intelligence, skills of adaptation, love and a whole host of other wonders to waste.
Yet, like knowledge and wisdom, faith does not magically make everything better. Faith is like a muscle that gets stronger, but even the strongest Faith cannot move a mountain unless God ordains or approves it. Faith can move mountains but if it were that easy we would not need God.
So right now, in this moment, I have faith in God for my friends and their children typical and unique. I ache for my friends that do not have their children physically here to hold and snuggle. I am broken over the knowledge that miracles can happen but do not happen the same way for everyone. And I am at times overwhelmed by the guilt that one child suffers and another thrives, that even in my own family some thrive and some have immense difficulties to overcome.
But along with faith, the one thing that I hold on to for dear life. The one piece of fiber that is so deeply engrained in my composition, is this; we are not alone. Because of that fact each situation, each challenge, each obstacle, and each and every celebration is relative to where we are and what our Creators purpose is for us. Without the experiences that we go through, we cannot empathize, sympathize, or be any kind of support to those around us. And without each and every experience we cannot be true versions of us. It would be ridiculous for me to think that my life would be better if x-y-and-z were different. And so, when my mind wanders there. When my heart is so heavy I feel it in my toes. When I feel as if I cannot breathe from the weight of reality. I remind myself that I am a better person and will be able to help someone else because of my struggles. If we cannot relate to our fellow human beings, than what in the world is the point or desire in living?
Please DO something to share YOU. To empower others and to share the burdens that transform us into better versions of our self. BE BRAVE and extend whatever it is that you have to extend.