My 7-year-old son Colton is in hospice.
Our entire family has been gathered around his bedside for weeks. His health, which had been slowly declining for over a year, rapidly deteriorated the day after Christmas. I’m grateful that he made it to Christmas, my smiling boy’s favorite time of year, to give us the gift of one last holiday together as a family.
The time will soon come when his broken body will be at rest, and my constant fight to ensure his access to health care will become a distant memory.
But not yet. Even in these final moments, when I should be able to focus the whole of my broken heart on saying goodbye, our fight is not over. Once again, our health care system has failed us. Once again, I am consumed by the fire of outrage at the suffering our children are needlessly forced to endure.
Obtaining hospice care for a medically complex child like my son is no easy task. The flat rate allocated for home hospice by Medicaid is not enough for a child like Colton; who needs a trach, feeding tube, supplemental oxygen, ventilator, medical supplies, medications, and more (we don’t call him our “million dollar kid” for nothing). Negotiating difficult contracts with agencies to set up care was complicated and stressful, to say the least.
As Colton became more ill, he needed more pain medication to remain comfortable. The prescription was written, but when we tried to fill it the medication was denied. Over the next few days, the script was denied four times. No matter what our physicians and pharmacists tried, it would not go through. As we ran out of medication, my greatest fear as a mother was coming true - my child would die a painful death and there was nothing I could do to help him. The health care system in our country is so broken that it prevented my child from accessing the medicine he needed to ease his suffering in his final moments.
I refused to accept this. I turned to the Little Lobbyists community I have been advocating alongside and my fellow mommas went into action. Through Twitter and Facebook, we shared Colton’s story. Generous friends and strangers donated funds and clicks alike. We cried out to the world for help and our voices were amplified by collective compassion and matching outrage. No family should have to endure this. Not here, not now, not ever
Fortunately we were heard by the people who needed to hear us. We finally got the attention of the pharmacy responsible. They explained they had made a mistake due to confusion over a new law in our state and were correcting the situation. After more than a week of worry, pain, and distraction, Colton finally got the medication he needed.
I’m filled with relief and gratitude that my beautiful little boy will not have to endure unnecessary suffering at the end of his life. But I cannot stop thinking about all the other mothers who are facing the death of their child. We should not have to fear the loss of health care coverage while we are trying to say goodbye. This is excruciating enough -- without fighting for hospice, without needing a “GoFundMe,” without exposing ourselves in our most vulnerable moment to the public scrutiny of social media in the hope that sharing our story will facilitate access to desperately needed care. This is wrong.
In his all-too-brief 7 years, Colton has taught me so many things about strength, and love, and the gift of life. To all who hear his story, I pray you learn just one thing from him – that the right to health care extends throughout a person’s life. My child deserves to live with dignity and as free from suffering as possible from the time he was a newborn in the NICU all the way to this moment in hospice, as he lies beside me struggling to hang on for just one more day.
Image description: Tonya (the author) and her son Colton embracing nose to nose.