I will never forget that day. That. Specific. Moment. Time really did stand still, and I realized that my child’s path in life was not going to be as I had once envisioned. I could hear the muffled sounds of his specialist speaking to me, but I wasn’t there. I was lost. I was overwhelmed with emotions I still struggle to navigate even years later. Seeing his tiny frame sitting in the chair in which he would be spending hours receiving medication. Medication that I wasn’t even sure I was comfortable pumping into his tiny body. His big brown eyes looking up at me with such trust, not understanding what decisions were being made on his behalf. In that moment, and many since, I did not feel adequate to parent this child that I had been entrusted with. My mind and heart were in conflict. My mind was reeling with questions and self-reflection on the what and why of it all. My heart was shattered into a million pieces, and it all came to a head in that. One. Moment.
The journey leading up to this one defining Moment felt like a lifetime, and yet in that one Moment it all simultaneously felt rushed. The endless testing, the countless specialist appointments, all of the what ifs, the how cans, the hospital visits, traveling out of state to see this specialist and that specialist, the parent forums I would scour late at night, all of the exhaustive research, the second and third opinions, the weighing of pros and cons regarding treatment options. It all led to this one acute Moment of intense realization. There was no longer room for any denial.
Receiving a diagnosis, or diagnoses for your child is only part of the puzzle for families with a special needs child. What is left behind afterward is an endless maze of emotions that is rarely talked about. It is akin to the grieving process. We have to think of it that way because it truly is a mourning process of the life we envisioned for our child. It is working through the initial denial, and the anger of, why my child? It is the intense sadness and despair of losing what could have been. Finally, it is the acceptance of what is.
Personally, it was not the day that I heard my son’s diagnosis that was my Moment. It wasn’t even the second time I was told of his suspected diagnosis. It took me a bit longer to accept what was fast becoming our reality. My Moment was random, it took me by surprise and I will never forget the utter flood of emotions felt in that space of time. When the appointment ended, I collected our things and went home. I was forever changed. My heart and mind will always struggle with his diagnosis, but once I was able to navigate my grief process and experienced my Moment, it was as if the fog had lifted. I was in a different headspace, and I was able to find hope and a path forward. This was my son’s journey regardless, and I was going to be his best advocate and protector come what may.
For some of us, our Moment may take a while to reach, and others may have their Moment before their child is even born. None the less, we all experience the Moment. It is important to realize that we are not alone. It is imperative that we reach out to a close friend, family member, or local parent support group and share our experiences. There is no shame in acknowledging that your child’s diagnosis/diagnoses may elicit feelings of guilt, sadness, shame, or grief. These are all natural, human responses to receiving difficult information. We need to normalize this within our special needs communities. It is ok to not be okay with your child’s path looking different than what you expected. It does not make you a bad parent. It makes you beautifully human.
If you find yourself struggling to navigate your Moment, it is important to know that you are never alone, and you can seek professional help. Speaking with a therapist has been life-giving for me, personally. You can also contact Indiana Family to Family for access to appropriate resources and peer support. Remember, our Resource Specialists are also parents of children with special needs and chronic illness. As parents, we tend to insulate our loved ones from what we are, personally, going through. We are caregivers, after all. However, part of being our best selves for others, is in the caretaking of ourselves as well.
A note about the author: Kelly is a Resource Specialist with Indiana Family to Family. She resides in Central Indiana along with her husband Paul and 3 children. Her son was diagnosed with Crohn’s disease at 8yrs old. The Family enjoys advocating and supporting the Crohn’s and Colitis Foundation through their events, like the Take Steps walk, and has found the organization to be a great support system and resource over the years since his diagnosis.”