What Being Caleb's Mom Has Taught Me

05/08/2015 02:41 pm ET | Updated May 08, 2016
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With Mother's Day a few short days away, I have been wondering all week what I should write about how to be a mom to a young man like Caleb. I was humbled when I realized I know nothing about this -- Caleb has taught me everything I know.

I've written before about the expectations I had when my son was born. It was all about my expectations for him. I dreamed of shuttling him to various sports (I don't even like sports, so I don't know why I even thought this). I dreamed of his high school graduation day (when he would undoubtedly give a valedictorian speech) and his college graduation (summa cum laude, of course) and his wedding and then whatever fabulous job he would land.

None of that was about him. All of that was about me bragging about what an amazing job I had done raising him.

That is not what motherhood is about. Caleb has been extremely patient in teaching me how to be a proper mother.

The day Caleb was born, he was taken from the hospital by ambulance to another state so they could perform open-heart surgery. I managed to downplay this event in my head, telling myself he could still be a world-class athlete. A few days later, when I was allowed to leave my hospital and join my baby, I lost my breath when I saw him hooked up to so many machines.

He was laying on his back, a board taped to his hand so he wouldn't pull out the IV. He was naked but for a diaper and wore a permanent grimace. I begged to hold him or cover him with a blanket, but the Neonatal Intensive Care Unit has very specific rules and I wasn't allowed to at that time.

As a four-day old infant, Caleb taught me about strength.

The day of Caleb's open-heart surgery, I was terrified, but then I did something unexpected. I was in an empty waiting room and I held my empty arms like I was holding him and I said a prayer: "God, this baby belongs to you. If you want me to raise him, help him survive this surgery and I will raise him to love you. But if you need to take him home, I understand." I had never uttered anything like that in my life. It gave me overwhelming peace and the strength to stay in a chair next to his crib for the three weeks after his surgery. I never put him down, trying to make up for the four days where nobody could hold him.

Caleb taught me he doesn't only belong to me.

At six months of age, Caleb needed to be sedated for an MRI to check the healing of his heart. The cardiologist gave me the typewritten orders to give to the anesthesiologist. On the short walk between offices, I memorized the orders and before the meds were administered, I asked for confirmation of the meds and doses. "Are you a doctor?" asked the bemused anesthesiologist. "No," I answered, "just looking out for my baby."

Caleb taught me that his health depends on my being a Caleb Expert.

The first two years of his life, due to a missing thymus (1/3 of a healthy immune system, which is missing in many 22Q Deletion patients), Caleb was sick at least two weeks of every month. This was an extremely lonely time, because we couldn't be in public. But even when he had a 105 fever, Caleb smiled and tried so hard to interact with the rest of his family.

Caleb taught me about courage during adversity.

During this time, we had nine therapists in our home every week trying to get him caught up on missed developmental milestones. Some he made, some he never did, but through it all, he tried so hard. In the back of my mind, I compared his development with my friends' babies. This year, the kids his age are graduating high school. Caleb is in self-contained classes and will only receive a certificate of attendance when he finishes high school in three years.

Caleb taught me to let go of pride.

When Caleb was 4 years old, a doctor ran his first IQ test. Like many other parents of special needs children, I was still living in the bubble that my child would break the barriers. That morning, the doctor casually threw out what she thought I already knew: Caleb, he said, is 'mentally retarded.' I honestly didn't know and those words were a knife to my heart. I couldn't let Caleb see my disappointment, so we stopped for ice cream on the way home and I held my tears until he was sleeping soundly that night.

Caleb taught me that new diagnoses don't change who he is and don't alter his sweet soul.
To this day, whenever we are in public, people stare at Caleb. He is a handsome boy, six feet and an inch tall, and he lives in custom-made Disney shirts. Caleb is a happy kid, which he exhibits in typical autism flapping or rocking behaviors. He has a high voice (due to 22Q) but the deepest laugh and the contrast causes many people to look. Some people look with kindness, some look with annoyance, but I have learned to avoid all looks (which isn't good when we miss the sweet looks). Caleb picks up on my every emotion, so the more even I stay, the happier he is.

Caleb taught me that he is all that matters.

I am not a perfect mother. I get exhausted and depressed from the average of 60 doctor appointments we go to each year. I get frustrated when he and I can't communicate, but I do my best to keep my tone even, my words kind and soft and my praise constant. I don't cry when he pushes me away because my tears destroy him. This young man deals with more adversity in a minute than I do in an entire day and it is my honor and privilege to make his world comfortable and happy.

Caleb taught me that it is not about me. Being his mother means meeting his needs, not my own.