If that alone was how life happened this year; we would agree that is enough. Instead of spending September 30th with my family, shopping for the things a newborn would need and donating them in memory of our lost baby, I was crying because my baby sister was gone forever.
ENOUGH. That should have been enough.
It was not. Between the last moment I last saw my sister’s lifeless body and the day of her funeral, I traveled to Washington, D.C.
There, with what felt like an empty heart, I pleaded for my children’s lives. I begged for hope, asking that they approve a life-prolonging drug designed for and benefiting boys with nonsense mutation Duchenne Muscular Dystrophy, including my sons.
I felt like that was ENOUGH. Except the panel that listened to my testimony asked for more.
I’ve spent the last 2 weeks doing everything that’s been asked of me to help get FDA approval. I shared our story at the National level that included an article in Newsweek. I unleashed a social media frenzy to raise awareness and gather support.
At my request, people all over the great state of Nebraska and beyond were contacting their congress members, asking them to put pressure on the FDA to do the right thing. I’ve emailed decision makers at the FDA.
I could have done more. Right now, sitting a thousand miles from anywhere, waiting for an answer that will come sometime next week, I feel like I’ve done so little. I know some of you think otherwise, logically, I should think otherwise.
Here is the thing. As I walked from my baby sister’s hospital room, with swollen eyes, an aching chest, exhausted, and distraught; I was with my sisters. In the hallway, 5 or 6 rooms from where our sister’s body lay, one of my sisters said, “I never want to do this again.”
I sobbed, as I had done for days. This time I cried because and I confessed it to them, “I’m afraid I will have to do this 3 more times.” It was hard to console me or my sisters. But the ache in my heart was 4 deep, for my sister and for 3 my boys. I would do anything to keep from ever having to do that again. I just don’t know what I’m supposed to do to prevent it. It seems like it will always be too little.
I’m in a fog. Some days it lifts, on other days I’m emotional, vulnerable, exhausted and can’t sleep and eat with no appetite and only because it is time.
Next week we will be at the Nueromuscular clinic with my boys and I will be seen in the carrier clinic. I don’t feel well most days and I do think it is because of stress; but am also afraid my heart is struggling as a muscle, not just as a vessel mourning past and future loss. Heart failure symptoms look a lot like extreme stress.
I’m always afraid that we will hear something bad about one of the boys’ test results. I feel as though I am conditioned to always expect something (bad) to happen.
Please pray for me. That this stress will be lightened, that I will feel better soon, that we will win one of these battles. Pray for peace. My heart is in turmoil and I seek a little bit of peace.
I don’t know much. I don’t know what the future holds, how the boys will be, when the grief will become something I can live with. But, I do know that God has this.
I am scared that what I want for my boys is not what God has planned for them. I know that I am faithful because despite the agony that my fear brings me, I still trust HIS plan. I know that what I want is because I don’t ever want to know what life on this Earth is like without them. I know that HIS plan for my children is the plan. I can only trust it.
Two weeks ago, I was questioning God’s timing. I could not make sense of it. Today, as hard and as exhausting as it has been to fight the FDA, it has prevented me from crumpling as a heap.
Heartache has been ever present, but love, love for my family, love for my husband and children, and love for my sisters. Love has allowed me to put one foot in front of the other. I’ve continued the fight, I’ve cared for my children.
I’m weak, but HE is strong. It’s a lyric I remember from my Sunday School days as a child. It is through my weakness, that His strength is truly present. It is a gift.
He is not done with me. I’ve almost always been the sturdy one, the strong one, like an aged tree.
Through loss and by HIS hand, I have been uprooted. I can no longer cling to what I know. He wants me to know more; that is all I know.
He’s got this. I have to trust that. For now and let’s hope, for always it will be HIS hand that I gravitate towards and cling to.