In 2018, I received a phone call from my son’s genetic team that changed my families’ life, as we know it.
"I remember a voice on the other end confirming speculation around my son’s diagnosis"
All the information I read online began to flood my brain. It was a devastating moment to learn that your child’s prognosis was not only life-long but also progressive.
As time went on and doctor’s appointments were scheduled (physical therapy, occupational therapy, speech therapy, infusions, pulmonology, orthopedics, and many more), I watched as my resilient and outspoken son adjusted to a life slightly different from other children his age. His siblings continue to try to understand his diagnosis and frequent visits to the doctor.
I realized that my Mondays were not going back to normal. We would spend every Monday in an infusion clinic, where my son will receive the enzymes that his body currently lacks. More reports began to flood in, concerning his body and how this MPS IV manifests in patients. This was not only difficult to hear, but also difficult to explain to my child at 6, 7, and 8 years of age.
Now I must admit, in the beginning, I was stuck in feelings of guilt, sadness and worry surrounding my son’s progression in life. However, I began to find some solace in attending educational seminars, receiving support phone calls, hospital staff, that have been amazing with my son, and simply in seeing his resilience through it all.
I’m now in a stage of acceptance, but I move back and forth from acceptance, to bargaining and guilt (much like the stages of grief). However, I am hopeful whenever I see my son’s ability to laugh, play and express joy through it all.
For parents, I realize that these are beyond tough times, with mixed feelings.
"We may sometimes feel guilty for even expressing these feelings, because we are not the one’s actually going through the pain (as our children are), but I’m here to say it is okay to feel what you feel."
This experience is traumatic, and it weighs heavy on our heart. We must take care of ourselves, so that we are able to take care of our little ones. In doing so, this is my request for you.
Identify your support system and utilize them as needed. Do not be afraid to ask for help, because this is a heavy load to carry on your own.
Self-Care! Remember to take time out for yourself. This may be a long evening bath after your little one is down for the evening, time out with friends, or simply reading a book or journaling your feelings.
Educate yourself! Remember, you are your child's number 1 advocate, so continue to educate yourself surrounding their diagnosis.
Attend a support group. If needed, take the time to attend a support group so that you have access to people who understand what you're dealing with, talk freely about difficult feelings without judgement, and feel supported by a group of your peers.