For the most part, the following post is a letter to my family and friends that I am sharing publicly. As a private person I wrestle the notion to share or not to share, but in this instance I believe transparency is important.
This week my families life changed. The rest of our lives will be different everyday. The way I think about my families health and well-being was totally altered. When I close my eyes to ponder what has just taken place I hear Langston Hughes words from his famous poem being recited in the back of my mind.
Mother to Son
BY LANGSTON HUGHES
Well, son, I’ll tell you:
Life for me ain’t been no crystal stair.
It’s had tacks in it,
And boards torn up,
And places with no carpet on the floor—
But all the time
I’se been a-climbin’ on,
And reachin’ landin’s,
And turnin’ corners,
And sometimes goin’ in the dark
Where there ain’t been no light.
So boy, don’t you turn back.
Don’t you set down on the steps
’Cause you finds it’s kinder hard.
Don’t you fall now—
For I’se still goin’, honey,
I’se still climbin’,
And life for me ain’t been no crystal stair.
I am not ashamed. There is not pity party going on in my home. We face life head on. We climb over hills. We reach mountain peaks and we learn to cope with challenges. We don’t dwell on obstacles; instead, we learn how to cope in the midst of storms.
At this time, I also realize there are experiences in my life that have prepared me for this situation. Thankfully, I am ready.
So, what’s the diagnosis? My daughter with Sickle Cell Disease was diagnosed with Juvenile Diabetes also known as Type I. Honestly, I had already prepared myself for it’s possibilities years before I married my husband and had children. You see, I was aware that this disease would be in our genetic makeup. I tried to prevent it by living healthy and trying to teach my children to eat right. They exercised, rarely ate sweets, and love vegetables. Sometimes, even the best efforts cannot change what is inevitable.
Although I am disappointed. I believe that by learning as much as I can about this disease and how to manage it properly we will triumph. The efforts I put into gaining knowledge and being proactive and open-minded will not only make me a better mother, but also a better wife. I am not angry, initially the news hurt, a lot. Yes, I even shed a few tears once I thought about the responsibility involved. However, I am thankful that I know what’s going on with my daughter’s health. I’m grateful that her fatigue and excessive fluid intake and urination has an explanation. Truthfully, I was much more prepared for this diagnosis than Sickle Cell Anemia because I had no clue that my spouse and I carried the SCD trait. But I knew that I could have a child with diabetes just because of genetics and even though the odds were slim, it happened.
I feel like this diagnosis is one of the torn up boards that Hughes mentions in his poem. But it will all be fine because just like we make sure our daughter’s sickle cell is taken care of, we will also make sure her diabetes is also in check. This is us reachin’ landin’s, And turnin’ corners. Even though having both of these diseases at the same time is rare, we keep going even in dark uncharted territory. Yes, it is hard but we’re still climbin’ up this mountain.
Reader Response: please share a few words of encouragement.
June 19th is World Sickle Cell Day. According ...