3 years in and God only knows how much longer to go. I do not pray for a cure anymore. I pray that no matter what Sarah's future holds - whether it be with or without sight - that it is filled with love, laughter, strength, happiness, and contentment surrounded by people who love her just as much as her father and I do.
While I am no expert at what it is like to be the mother of a child that is abled differently I have learned a thing or two. The silver lining, if you will. I would like to share these things with you on the anniversary that our lives changed forever.
1.) My heart and ability to understand others has grown tremendously.
Parents of children who are abled differently carry a sense of compassion and understanding in their hearts that no one, no matter how amazing you are, can truly understand or experience unless you are the parent of a child like Sarah. The child with Down Syndrome, Cerebral Palsy, Autism, etc...I get it. I may not know your specific journey and the unique details of the life you are leading as a family, but I understand intimately that these are not the cards you imagined being played to you when you thought of your future as a parent. We are a club, families like ours, a club that we would have never known existed had it not been for our children. It is a club we might not have chosen to be in if we had the choice, but now that we are in it we cannot imagine life any other way.
2.) My confidence in my ability to be my daughter's advocate has grown tremendously.
And this confidence has overflowed into my other children's lives. When Sarah first got sick I assumed that all doctors would have her best interest at heart. I blindly assumed that everyone loved my child the way that Bob and I did, and that everyone would be making sure that she got the care that she not only deserved because she was our beloved child, but also because she was a human being living in the greatest country on the face of the earth. This is not true. Because I know this now I know when to call bullshit on the doctors who give her less than stellar care. Because Sarah is such an anomaly even among autoimmune patients there are many doctors would don't want to care for her because of the complexity her case carries. Sometimes these doctors will try and pass off subpar care as legit care thinking that Bob and I don't know any better. Wrong.
3.) Family first is my family's truest of Truths.
Sarah's illness brought to the forefront my belief in family first. The urgency and immediate needs her disease demanded those first 15 months after diagnosis caused the 6 of us to pull together in a way we might have only scratched surface with had Sarah never gotten sick. I hope that our four children will always be able to rely on one another their whole lives the way they have done these last 3 years. The 6 of us are on this amazing journey that only we can fully understand because we live day in and day out with our life story. The same is true for you and your family. No one knows your story better than those who play a main role.4.) Nothing is guaranteed in life.
Sarah's journey, our journey, into the world of medical chaos is a constant reminder that nothing is guaranteed in this life. I sometimes look at my daughter when she does not know I am observing her and I will remember a time when we blindly (no pun intended) thought that life was going to go on perfectly forever. That health was a guarantee in life because sickness and disability happened only to other people out there. They could never happen to us. The irony of that line of thinking is not lost on me.
5.) Life is one great adventure.
Going hand in hand with #4 - because nothing is guaranteed in this life - I believe that life should be treated as one great adventure. Why not try new cities and new places? Carpe Diem! I wouldn't have been so bold to live this transient life we are leading had Sarah not shown me that life is too short to not take risks and live fully.
6.) My daughter is one of the strongest, bravest souls to walk this earth.
Sarah has endured more than I care to rehash with you. She has done this all with a wisdom and finesse that brings me to tears when I think about it. She possesses a beauty and grace that I strive live up to daily. She is amazing.7.) I am stronger, fiercer, and more brave than I ever thought I was.
You have seen me at my lowest points. You have read my words when life has brought me to my knees. You have walked this journey with me through these posts that I write. You have seen me fall time and time again. You have seen me full of fury. And after each fall you have seen me get up. Time and time again. After the fury has subsided you have read my words of gratefulness and thankfulness at what life presented to me. I would never have realized how strong I was until I was truly tested. I would not have known how fierce I was until the most precious thing I have in my life was attacked: my child. And I would not have known the depth of my bravery had I not had to reach deeply to put on a brave face for all of my children. I couldn't have been so brave for myself alone - it was for my children that my bravery ran deep.
8.) Finally, I would not have known what thankfulness and gratitude and hope truly feel like had it not been for Sarah's illness.
I write a lot about being thankful and being grateful for the things in my life. I write about hope. I wonder if perhaps those words don't grow stale as you read them post after post. Or if you wonder how I could possibly be so thankful or grateful for such simple things sometimes. I can only say this: until you have been through hell on earth you can not feel the true depth that gratitude and thankfulness can offer. I feel those emotions more deeply and more truly after having gone through what our family has these last three years. I know what darkness looks like. I know what it feels like to think there is no end in sight -no light at the end of the tunnel. Because of this I know hope truly does float. And that sometimes in order to get you through the darkness hope carries you - lifts you off of your feet - and walks you towards the light. Sometimes hope picks up the shattered pieces of your heart and holds them for you until you are ready to try and piece it back together. Hope, thankfulness, and gratitude have been lifesavers to me. I will always honor those emotions and share them with you because they have carried me through some of the darkest parts of my life.
On this three year anniversary I suppose I could have shared with you how hard life still is. I could have shared with you the abundant number of days where I come close to throwing in the towel because I feel the weight of this disease on my every day life day in and day out. But, if I did that, then this disease would win. And I promised from day 1 that I would fight this disease until it no longer had a hold on Sarah's body. I will hold true to that until my last breath on this earth. This disease may win some battles, but we will win the war against it. Finding the silver lining is just one way that I can take the upper hand and throw up my middle finger at this s.o.b.
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