Before October 26, 2001 I can honestly say I never wondered what it would be like to have child with special needs. Growing up in the 70’s and 80’s there was no such thing as inclusion. The kids with special needs had their own classroom at the end of the hall. We never interacted with them. I wish I could say I was kind but I never had the opportunity to be anything to them.
I never wondered what those families were like. I didn’t consider what challenges the parents faced and how their siblings coped. I never wondered what kind of adjustment, what paradigm shift, would have to be made physically, emotionally, even spiritually when given a child with special needs. It was the furthest thing from my mind and remained as such until the moment my then husband brought our second born son to me after my cesarean section.
“Here is our son. He has some anomalies, isn’t he beautiful?” Gary said showing me my barely five-pound baby wrapped in a blanket.
Gary was a maternal fetal medicine specialist. His practice specialized in high risk pregnancies. He performed ultrasounds for the hospital. In fact, I had four different physicians scan my womb while pregnant with Wesley. Early on they thought there might have been an issue with his heart but it seemed to naturally resolve by the time I was 20 weeks pregnant. We were given the “all clear.” How, I wondered, could there be anomalies and not one of those physicians saw any?
“Anomalies? What anomalies?” I asked not sure what emotion was speaking.
“He has a hypospadias, clinodactyly, and these broad thumbs. He is a little small and has central hypotonia. The geneticist will come see him in the morning,” Gary said as if explaining an interesting case.
My mind began racing. Having worked with Gary I knew the adage MFM specialists used. When doing an ultrasound one anomaly was probably nothing, two might be something, but three was almost always a syndrome.
“Do his toes and fingers count as one or two anomalies?” I asked searching. “Is that more than three?” I asked as panic settled in my voice.
I glanced around the operating room. No one was smiling. No one would make eye contact. It was as somber as a funeral.
“We will see what the geneticist says,” Gary replied.
When Emerson, my first son, was born my hospital room was filled with flowers and adorable stuffed bears. There was a steady stream of visitors and squeals as they delighted in my perfect little boy. When Wesley was born there were no flowers. There were no stuffed animals. No visitors came.
At the time it felt much like rejection. It compounded my grief because it felt like no one was happy for me. Yes, he was not physically perfect but he was born and he was mine. Was that not cause for celebration? Yet no one came. No one celebrated for or with me. We were avoided by everyone except one couple who were dear friends and our families.
When Gary’s father called after we already returned home from the hospital I finally realized why people avoided us. They did not know what to say. This became painfully obvious during the awkward conversation with my father in law. After initial stutters and silence he offered, “I am so sad about the baby” as if my child had not been born at all. His heart was true and his motives kind. However, I wanted to hear “congratulations!” I wanted to hear that my baby’s birth was the reason for as much joy as if he had been born without challenges. I did not want to have to reassure him that everything would all right. At that moment I wasn’t even sure myself. It hurt to hear someone feel sad my child was born, at least that was what my heart heard. Yet I knew even then that what he said was well intentioned and I appreciated his effort.
It is human nature to avoid uncomfortable situations. As someone who has been on the receiving end of a few very difficult situations I know how silence is profoundly lonely. It is painful. It is a void no one wants to feel.
On the other hand, people often resort to cliché’s when unsure of what to say. Though those are well-meaning they often end up falling short and end up causing harm. When Wesley was born I often heard, “God doesn’t give us more than we can handle.” This would always bother me. My intention is not to get into a theological debate but I, personally, believe that life absolutely hands us more than we can handle. While I don’t believe God causes it, He allows it. If we only faced that which we were capable of enduring there would be no depression, no anxiety, no addiction, no suicide, no need for God.
After my husband died I almost cringed when people would say, “He is in a better place.” Those of us reeling from suicide know our loved one isn’t supposed to be in a better place yet. He is supposed to be here with us. It also brings to the surface the reminder yes, he is where there is no more pain and no more suffering but I am here still, in indescribable pain and intractable suffering because of his absence. It fuels the anger and abandonment we are already trying desperately not to feel.
I teach my children when they don’t know what to say to not resort to clichés. There are even times Bible verses can hurt. When someone is in mourning and she hears, “Ya know, the Bible tells us blessed are they who mourn for they will be comforted” it does little to help. While it is true, when one is in the depths of mourning one often does not yet see the blessings. She just sees the darkness and the unbearable pain. It may take a long time before she understands what that verse even means. It may even make her feel inadequate or not spiritual enough because she feels a lot of things but blessed is not one. She may feel exceedingly grateful for the support and comfort received but knowing gratitude and feeling blessed can be two entirely different understandings when deep in the darkness of despair.
As in the case with my father-in-law, he said the wrong thing but his heart was trying. Silence feels like not trying. It is avoidance during a time when a friend needs anything but. Saying the wrong thing, for me, felt better than saying nothing.
When Emerson faced a situation and he knew he needed to say something but didn’t know what that should be I encouraged him be genuine. I explained to him that saying something is always better than saying nothing. Most of all, it is ok to say
“I do not know what to say. I am here for you and I care, I just don’t know what to say.”
Just say something.
Thank you for writing this.One of our five children was born with a bilateral cleft lip and palate (and later diagnosed with Aspergers’ Syndrome and dyspraxia). Your post bought back the bitter-sweet time of his birth, and people not knowing what to say, and also struggling to sing in church “Every good and perfect gift come from You’ on our first Sunday at church after he was born. He is now 25 and has had to overcome a lot in his life but is a compassionate (and eccentric1) young adult and like your son, is a wonderful gift
Thank you for sharing this with me. We have so much bitter sweet, don’t we? We are blessed. I say it is almost like a secret club. There are so many challenges but greater blessings. Most people don’t know how blessed we are!
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