On September 19, 2013, my husband and I rushed our 7-week-old son, Truett, to the hospital. He was having trouble breathing due to a cold.
Four hospitals and 161 days later, Truett is still in the intensive care unit. Over the past months, our son has lost the ability to breathe without a ventilator and most of the movement in his feet, legs, hands and arms. The doctors do not know what disorder Truett has or why he is this way. They suspect that our beautiful, intelligent, 7-month-old child has a rare, unknown genetic disease.
It is difficult to watch my precious baby struggle to live and even harder to leave his side because I am also needed by our young daughter at home. Young siblings are not allowed in the ICU until May as it is flu season. Try explaining this to a 3-year-old who wants nothing more than to be a great big sister to her brother.
She’s not the only one confused and hurting. We have no answers as to why this happened. We don’t know how much time we have with him or if he will get better, worse or stay the same. I am scared because we don’t know what to expect for Truett’s life and we don’t know if this disease will affect any future children we would like to have, or if our daughter will develop this disease, too.
We feel alone, as there are no support groups in our area for undiagnosed diseases.
This disease is also affecting us financially. Our gas bill has increased significantly as we drive 1.5 hours roundtrip a day to see Truett at the hospital. We are rarely at home which has increased our food bill. Our income has significantly decreased as most of our time and focus has been with Truett at the hospital. As we have expended most of our savings, my husband now only visits our son once or twice a week in order to work more effectively. My mother has been living with us for five months to help care for our daughter and will soon be returning home to another state, so we will have an additional childcare expense. We anticipate having to pay thousands of dollars out of pocket to have Truett’s DNA mapped so that it can be analyzed years in the future when he is no longer with us and medical science has evolved.
When your child is sick, you learn to look for the positive in every situation. When Truett smiles, which he does frequently, it lights up a room and my heart. There are many hospital volunteers and staff who come to see Truett daily because it brightens their day.
When we place toys in Truett’s hand, he stares at them trying to will his hand to move. When we help him move it, he beams with pride and excitement. He loves watching movies of his sister and will stop crying at the sound of her voice. He also loves touching my hair, watching movies, having books read to him, the itsy-bitsy spider song and his plastic toy lizard. I am so grateful for these moments and memories with him.
The support we have received from our community has been overwhelming. Friends, family and church members have delivered meals. Friends babysit our daughter and visit Truett when we are sick. Our daughter’s preschool families gave us gift cards and my sorority sisters send care packages.
Even in this time of despair, with so many people praying for Truett and our family, there is still hope, love, and Truett.