A Morning in the Mind of a Medically Fragile Child's Mama

It is 6-ish, and a small moan comes through the “infant monitor” beside my bed. This is the monitor I pray will help me hear if my 6-year-old is having a seizure or struggling to breath. It is so much more than it ever was with my two older girls.

At the same moment, two conflicting thoughts crash through my mind: “thank you God she is awake” and “I wish I could sleep a bit longer.” I have not lazily woken up in years. On the rare occasion my baby girl has slept in, my body flies awake in a rush of adrenaline and fear… fear I have lost her in the night.

This is how my day begins. 

Bella sleeps in a Sleepsafe bed, a hospital bed that resembles a crib. She has a mobile (made by her sisters) over her bed. Bell has cortical visual impairment (CVI) and nystagmus, and we always encourage her to use her vision. This morning I wonder if she ever looks at that mobile when she is laying in her bed waiting for me.  

She is connected to a feeding tube that provides nutrition to her throughout the night — and keeps her from falling off the growth chart. Bell has little interest in food and often has trouble swallowing due to hypotonia. Some days I discover I have not connected her tube correctly and she has not received any of her formula. On other days, it’s leaked, and she is in a pool of formula. This devastates me with guilt and worry. Today all is well, and she gives me the “it took you long enough” look. I wonder how long she has been awake and waiting for her day to begin. 

I lift my 39-pound little love out of her bed while chatting to her about the joys of sleeping later and my need for coffee. Bell does not have the ability to wrap her arms and legs around me to help so it is like carrying a sleeping 6-year-old; you feel every pound. She watches me and sometimes smiles at my morning exasperation. She does not say a word. Bella has never said one word or even babbled really. Don’t misunderstand — she communicates effectively to those who know her, but not with words. Bella has Phelan McDermid syndrome, and being nonverbal is a common feature.

I lay her on the mattress we have on the floor of our living room. My decor is now a mix of therapy room and toddler fun house (sure, I have a swing in my living room, don’t you?). I change her diaper. Diapers for older children can’t typically be bought in the grocery store, so we purchase them (for a small fortune) through a medical supply company.

I chat about my night, generally complaining about the cat, as I put three to four different meds in her g-tube. She listens patiently but really just wants me to start her movie on the iPad. Bella has specific preferences and has mastered the animated head turn when she does not like something. She doesn’t scream or cry (unless she has extreme pain), she does grind her teeth… loudly. So I start the movie, the same one she watches every morning, the one our entire family has memorized.

Our day has officially begun.

As she lies beside me watching her movie, I drink my coffee and organize our day/week. I wonder if she can handle therapy this week. I research alternative medicines for things like seizures and C. diff (a nasty superbug that has repeatedly infected my little beauty). I think about medical bills (helicopter rides are ridiculously expensive!), research grants and resources (which we usually don’t receive due to my husband’s income, despite the fact we are drowning in medical bills). I wonder if it’s worth the time invested to fill out all of the paperwork. I feel guilty about her not having a bath in the last couple of days but decide my back is already screaming, so a wash-up it is. I check her heart rate, and stress at the numbers I see. People to call, appointments to make, paperwork to fill out, but I am stuck in the anger that fills me. Anger at the endless illnesses that have stopped her progress, anger at the doctors who don’t seem to know how to help, anger at the fact my child has had to endure a life filled with therapies and physicians. It feels like too difficult a way to start the day.

I lay my head gently on the sweet, fragile child I fight so hard for. She pats me with her soft hands, wrapping one hand in my hair, and the anger is gone. She smiles as I lift my head to look at her. I smile back, grateful to spend another morning with this silent, lovely soul. Tomorrow may bring a more difficult morning so I push back the anger and focus on the sweetness of this moment.

I am so very thankful our day together has begun.