To the mom pushing her daughter in a wheelchair, I apologize for what it has taken for me to see you. I apologize for the times I looked away from you, for the times I had pity on you, for the times I saw your daughter as less because of her differences, for the times I so proudly and naively thought “that will never happen to me”, and for the times before Coral’s birth when I was so presumptuous as to even wonder if you love your daughter as much as I love my son.
Please forgive my ignorance, my pride, and my lack of perspective. I could not see then what I do now.
As I park my car and unload Coral and all of our bags for yet another 24 hour EEG, I see you pushing your daughter into the parking lot in her wheelchair. I don’t know why you are at Rady Children’s Hospital, but I imagine you have been to this or another hospital many times over the course of your teenage daughter’s life. I don’t know what diagnosis your daughter has been given, which labels of disabilities you carry with her, but I know you choose to see her abilities instead.
When we look at each other and smile, you probably just see a mom with her baby, but I am actually a mom on the beginning of a path similar to the one you have walked for years. At times, I am still fearful of what the future holds. I still doubt my strength and my ability to hold it altogether when major medical issues arise (which seems to happen in cycles). But when I see you, I am reassured that this can be done. I feel connected to a mom who I know truly gets it.
I want you to know that I see your courage and your persistence to fight for your daughter’s rights and her needs through countless phone calls, emails, and conversations with doctors, therapists, and insurance companies.
I see your ability to stay calm in the midst of medical uncertainty. You have probably spent incredible amounts of time researching possible treatments and the most beneficial therapies. I venture to say that you have not always followed all of the doctor’s recommendations but have chosen to instead always follow your heart; you know your daughter best. I see you step confidently in the direction of your decisions, not giving into the temptation to look back and ask “what if?”.
I see your patience when you encounter hurtful and ignorant statements- some from those who are oblivious to what they are saying and some from those who are purposeful with their words.
I see how grateful you are to those who take the time to get to know your daughter, to ask about her – to really ask. I imagine that you are grateful for the friends you had before the birth of your daughter who are still by your side today- the ones who hold you as you cry, laugh with you when you can not cry anymore, and who celebrate even the smallest victories with you. I bet you are also grateful to the new friends you have made along the way.
I recognize that sometimes you may feel alone in this journey but are comforted when family members say, “We will get through this together.”
I see that you have put your parental ego to the side- including the expectations you had for your daughter’s life- to instead embrace this unexpected path and to love your daughter for exactly who she is.
I see you when others may look away.
When I look at this picture of me, 40 weeks pregnant with Coral, I can’t help but feel some sadness. While I look happy in the picture, I recognize how blissfully unaware I was of my narrow definition of parenting. In this picture, I am Tate’s mom (not Coral’s mom). I worry about things like: whether or not Tate is eating enough vegetables, hoping he will sleep through the night, balancing parenting flexibility with more a rigid schedule, keeping him healthy from cold and flu viruses, scheduling a yearly well-child visit, and arranging play dates for my social little guy. In this photo, I am a mom who could never imagine having a child with special needs.
Now I stand in the exact position I couldn’t imagine, as the mother of a child with a rare chromosomal duplication, and I am sorry. Please forgive me for the times that I chose to judge both you and your daughter and for the times I assumed to know about you just by looking at you. You do not need my pity, warrior Mama. We all need some of your strength and determination.
To the mom pushing her daughter in a wheelchair, you look so content as you enter the parking garage. Thank you for smiling. Thank you for giving me hope. I do not know your unique path, but I do know that when Coral is a teenager, my wish is that I carry myself with as much peace and love as you do.