When There Are No Words: My Child’s Special Needs Diagnosis

When There Are No Words My Child's Special Needs Diagnosis

Other than an early arrival, our daughter’s birth came without major complication. After four short months, however, we began to notice she wasn’t meeting basic developmental milestones. Doctors began to show growing concern and recommended further testing. After extensive poking, prodding, and scanning, results returned to us with devastating news. Our daughter showed signs of mysterious brain damage of which doctors could not identify a cause. After ruling out anything life threatening, the best prognosis they could give was the likelihood of her never being able to walk or talk and the reality of living with this uncertain condition until future testing could identify the reason.

As word about our daughter spread, it seemed that people began avoiding us for fear of not knowing what to say. Our phones didn’t ring as much and social invitations ceased. We speculate people were giving us space, respecting our need to grieve and cope with this unexpected trial. Or, perhaps, people were assuming that we were already overcome by an outpouring of support. In reality, it was just the opposite. We were experiencing painful isolation. When we did see people out and about, and conversation was given a chance to commence, it was awkward and labored as people fumbled for the ‘right’ words. Being so desperate for interaction, we didn’t mind; but it seemed others found such exchanges challenging and our social life took a downward spiral. We felt left to grieve alone as individuals and a family. We longed for any words of encouragement and reasons to hope that we couldn’t seem to muster up ourselves. However, even if people didn’t know what to say, we just longed for their healing presence.

I tried to remedy the loneliness by socializing with other new moms. But to be completely honest, I struggled through such encounters. Conversations often centered on their children, the joys of seeing them meet milestones earlier than expected, or the aches of what seemed to be minor issues in comparison to ours. Seeing other children take their first steps or murmur first words, while my child was twice if not three times their age and showing no signs of doing these things, left me feeling left out and my heart aching. I realized that I just wasn’t emotionally ready for even the simplest of “playdates”. However, I knew that I couldn’t survive living the life of a recluse, nor was it fair to my daughter. We would have to adapt to a new normal and learn how to carry our grief and still live.

Instead of waiting for quite some time for others to initiate contact, I began sending out flares by making attempts to invite people I trusted into our world. At first, these were single friends, empty-nesters or friends without children. These people proved safe to me because they wouldn’t end up talking about their kids. I started small, once a week in order to fight the attempt to close myself off. I needed people who would breathe life and encouragement into me, not to mention would take the risk of entering our space, knowing such encounters could carry discomfort and unpredictability.

I knew that I couldn’t survive living the life of a recluse, nor was it fair to my daughter. We would have to adapt to a new normal and learn how to carry our grief and still live.

Once I began re-engaging, the next step was stepping through the denial and reaching out to a support group of families with children who have the same rare disease as my child. Conversations were on topics I was experiencing as well, and the silence wasn’t awkward but pregnant with understanding and comfort. I needed these women in my life; these fellow grievers, advocates and fighters who seemed to be living this life of rawness and still functioning.

Yet as much ease as I encountered in their presence, there is also only so much heartache I can handle in conversation. These fellow mothers deal with very real and challenging issues and the grief is ever-present. The atmosphere with these ladies was accepting and understanding, conversations were rarely if ever light. There is no such thing as surface chit-chat. For my own mental and emotional health, I realized the need to balance being with other parents who walk the same road with a special needs child, with those who are not. Gradually I have grown in appreciation of mixing my company. This relational intentionality has helped me to manage my all-consuming reality with needed “normal” life encounters.
I have learned that I cannot rush my own healing. Grief is something sacred and should be allowed the time it demands to work itself through. I have also come to experience that healing rarely, if ever, happens in isolation. That awkward phone call, hand delivered meal, or offer to babysit, can be just the healing balm someone needs today. Please don’t assume someone else better versed in grief etiquette will do the reaching out. Nor, let not knowing what to say keep you at a distance from others who are hurting. As my nonverbal child is teaching me, there is so much more to life than words.

Want to read more of Geinene’s story? Don’t miss Keeping a Marriage Strong When Hardship Strikes.

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