When My Son Showed Up Early

IMG_2979 I still remember the day everything in my life changed. I’d just been given the news my one and only mama had died. I was eight months pregnant at the time with my second child. I hugged my son so tight and told him about his Grandma Betty going to be with his Geedo (our name for my dear dad, who died two years and two weeks prior.) I don’t remember much after, except talking to my best friend. She said, “You’re so calm, why aren’t you crying?” I had no idea; the shock was strong that day.

Fast forward to my mom’s funeral. There I stood, waiting to sing with the choir. I remember hitting notes high in the stratosphere as I sang her favorite hymn. A month passed, and I experienced bleeding in my pregnancy and went into early labor. I still remember how scared and in shock I was. My precious baby boy made his appearance at 36 weeks. He was a healthy 6 pounds, 2 ounces. He didn’t cry. He wasn’t purple; he looked like a little loaf of bread not quite finished baking. The OB/GYN had later woken him up, and he made this meowing sound, and I looked at my husband and burst out laughing. “Did our baby just meow?” I asked.

Off to recovery I went, and my son went to the NICU, where he stayed for ten days — the longest ten days of my life. I was sent home to be with my family, but we didn’t feel like a complete family without our baby home. I went to the hospital every day every three hours to feed him. After that I would cuddle, change and put him back to sleep. Then I’d go across the hall to the lactation room to pump and save some bottles for him. I would do this till 10 p.m., then go home to my husband and my 4-year-old and try to live a regular life.

I would start the process all over again at 6 a.m. I knew my baby was sensitive. He didn’t open his eyes for five days; when he did, he took in my face and the world around him. He didn’t like the noise, bright lights or the shift changes between the nurses. He wanted to be held all the time. My doctor had told me, due to my boy’s prematurity, he would be developmentally delayed.

I was still in surreal mode. My son showed incredible tenacity and strength; he was able to leave the NICU and come home. When the health nurse came to assess him, she said he was growing well and asked us if we had any questions or concerns. I told her my first son was strong and could push himself off my chest as a newborn. But my baby had mutant strength. I proceeded to show her how he could roll completely from side to side at just 10 days old. She had said it wasn’t the normal thing you’d see for a newborn — that he was a “just in case baby.” That meant to always put your hand on your baby just in case they roll off the change table.

As my son grew, I noticed his sensitivities did as well. He wanted to be held and fed constantly and my husband and I joined Team No Sleep for months. He would cry relentlessly when I put him down. I spent those first three months of his life sleeping in a rocking chair. It saved my marriage and allowed me to cry silently in the still hours of the night for my beloved Mama.

As I introduced solid food to my baby at 5 months, he had a lot of texture and taste aversions. I had to mix sweet potatoes with everything. As he began to use finger foods, he wouldn’t touch certain ones. He was meeting his milestones, albeit a little later than his brother and what the books said. I didn’t worry; I was happy he was meeting them at all. He preferred fuzzy blankets to flannel and cotton to denim, and he howled if there was a bright light in his face.

He got to crawling at 9 months and taking his first steps at 10. He was speech delayed and would say very few words for the next six months. I noticed at 20 months the progress he was making was stopping. He finally started sleeping through the night at 2 years. I contacted my doctor and told her of my concerns with his speech delay, lack of sleeping and taste and texture issues. She said to be consistent and gave me a handout and websites to follow. I knew there was something else going on so I talked to my health nurse. She gave me information and I made the referral to see a child development agency. I saw a child development councillor, occupational therapist and speech and language pathologist while waiting to see the developmental pediatrician. In the meantime I read “Out of Sync Child” by Carole Kranowitcz. Suddenly, my child’s sensitivities began to make sense; finally someone understood him.

The developmental pediatrician diagnosed my son with having Sensory Modulation Disorder of the Sensory Processing Disorder condition. This was three weeks before my son turned 3. Six months later, I’m awaiting getting my son assessed for autism spectrum disorder. His speech has caught up to his peers, but he’s still behind on potty training. I’ve been working with him on awareness the whole summer; now the goal is to work on his interceptive sense that gives him the ability to distinguish hunger, thirst and urge control for elimination. I’ve been fortunate to qualify for respite care; I have a worker to help with strategizing.

And my son has someone to look after him while I have some me time. So everything’s starting to come together; I finally asked for help. My days are full; I’m my son’s mom and sometimes occupational therapist, and we do his sensory diet and speech therapy daily. I’m hoping to qualify for funding so he can wear a weighted vest; he’s a seeker of all sensory input and in a constant motion. I work on his proprioceptive sense so he’s more aware of his body in his environment and not crashing into people. He has his little teepee tent for when he needs his quiet time. In there, he has his sensory bucket of toys that calms him and makes him feel comfortable in his own skin. And now we start the process of getting him prepared for preschool. With his Obstructive Sleep Apnea diagnosis given last year, I have to get his blood panel done and start seeing an allergists. He’s on medication to help him sleep.

This isn’t what I expected when I found out I was pregnant with my son. I’ve had to grieve for my beloved Mama and for my son’s struggles in life. I still have to remain an advocate for both my children. I don’t ask for sympathy; I don’t feel sorry for myself. I truly believe that God only gives the most special children to the strongest parents. Sometimes it’s so hard, and all I want to do is cry and throw in the towel. I allow myself to have that moment and dry my tears and get back up on the horse again. I like to think that even though my son didn’t have a full-term birth, he came along right when I needed him the most.

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