For the past six years, my family has been doing a lot of waiting. My son is medically fragile, and his health has been our primary focus since he was born.
We spent almost two months in the NICU following his birth. The early days of sitting by his crib were excruciating. Even though I had given birth to him, the entire time he was there he never felt like my child.
Doctors made all the choices for his care in what he ate, when he slept, and what treatment he received. They insisted I had options, but I never felt like I had any control. I waited ever impatiently to be able to take him home so he would feel like my child.
After two months we got to take him home from the hospital. I will never forget the first day I held him in my arms inside my kitchen. He was home, he was safe, and he was mine.
Finally, after two months of having no control of his care, I was able to make all the decisions and be his mom. For a few brief months, our lives felt ordinary, and I was able to enjoy my maternity leave.
Then he stopped breathing at home the day after I returned to work from my maternity leave. We rushed him to the clinic, and an ambulance took him to the hospital.
Only seven weeks at home had passed, and my son was back in the hospital. However, this time his stay was different because he was fighting for his life.
Minutes felt like hours, and hours felt like years as we waited for our son to respond and stabilize. Doctors had placed him on life support, and he fought for his life.
My husband and I sat next to his bedside as we watched doctors and nurses shuffle frantically around his room. By the evening of the second day, doctors sat us down and told us we must prepare not to take him home. They believed unless he stabilized radically overnight he would die.
I refused to believe he would not survive. For 15 hours, I sat and waited, watched, and held my son’s hands. He was so tiny, but I believed he could survive.
Despite doctors fears, he would die, our son improved after he received emergency medications as a last resort.
By the following day, they believed they knew what was wrong with him. We waited for days as they sorted through his labs and they performed additional testing. After seven days on life support and months of waiting, they gave us the diagnosis that nearly took his life.
Our son was born with a rare disease, and it meant he would need medication daily to live. The condition was life-threatening but treatable. Finally, after months of uncertainty, we had a path forward and no longer had to wait for him to improve.
We came home after almost three weeks in the hospital. I did my best to adapt to our new normal. Our lives consisted of doctors appointments, adhering to his medication schedule, and weigh-ins to track his growth.
Initially, things seemed overwhelming, but over time it all became a part of our routine. My son grew, gained weight, and for the most part, thrived.
I thought our waiting was over.
We weren’t even close to being done.
Since the early days of his life, we have been continuously waiting for things to improve. Each year that passes, doctors discover new diagnoses that are ravaging his body.
When he turned five years old, his primary doctor told us his health is likely never going to improve. She even told us that additional declines in his health would be possible.During this time, we worked with our provider to strengthen our medical team. We added a complex pediatrician and a palliative doctor to manage his complex health.
His team grew steadily from a pediatrician and endocrinologist in the early days to include more than 12 doctors from different specialties.
Doctors monitored numerous medical abnormalities for years, and we were told intervention via surgery would be likely for at least three of his conditions.
For years we waited patiently and went through screening, testing, and appointments as doctors sorted through his symptoms.
By the fall of 2017, his health was taking another steep decline. With the help of our team, we were able to sort through is symptoms and we determined the next steps.
Through testing, it was determined he would need brain surgery, and we waited for surgery. His surgery was scheduled a month later. For a month, we didn’t leave the house other than for appointments because he could not get sick before surgery.
I was anxious, barely slept, hardly ate, and exhausted from having to wait to help him feel better.
We reached the day of surgery. After his procedure, we went home and waited for him to recover.
Doctors scheduled additional surgery a few months later, and we waited again at home to keep him free from germs.
Finally, after his final brain surgery, we thought we had reached the end of our journey. Our family would be able to get back to living. I hoped my son would start to feel better.
Then nothing happened. In fact, things got worse.
He had complications from the surgery, and then in the middle of all of the chaos, his heart condition got worse.
Within weeks of being cleared from a brain bleed, we learned my son needed open heart surgery.
Now we are back to waiting.
Waiting for a surgery date, and again waiting for him to feel better.
After almost six years of sitting around and hoping things will get better, I know there will never be complete healing from my son.
There will always be medical interventions needed to help him survive and to improve his quality of life.
Knowing that my son will never have good health is the most painful part of being his mother. I can wait for months or years for him to get better, but that day will never come.
I have never been able to relax due to the amount of anxiety that fills my heart daily related to his conditions. When so many issues are destroying his body, there is never time to enjoy the here and now.
Each day I find myself waiting for the next appointment, call, test, surgery, or treatment to alleviate his symptoms.
My phone is always close to my hands because I know each day there is a specialist, nurse, caseworker, or educator that needs to talk to about his care.
Rarely do I have time to enjoy watching him grow, play, learn and thrive.
My parenting experience has been cheated by all the waiting I do to help his health improve.
All I want is one day where I no longer have to wait.
My only wish as his parent is that one day we will no longer be waiting, but we will finally find some form of medical stability.
Until that day, I will continue to sit here impatiently waiting.