A message from a mother to her son

These comments, and much more are what makes us parents cringe and wonder if our children know how painful it is for us to make them attend therapy sessions, take them to appointments, and schedule procedures that make us appear cruel and unfeeling.

As our children with chronic illness or physical disabilities get older, and express their resentment at their challenges; they sometimes direct their anger at their direct caregiver, mostly parents. How do parents deal with their child? How do you explain to your child that you’re doing everything for their benefit, and that their pain is your pain? What’s the best way to minimize these outbursts, and successfully empathize with your child, while still maintaining your parental authority?

As my son entered his teenage years, these situations arose more often, and therapy became a difficult challenge on a daily basis. I finally sat down and addressed a letter to my child.

Dear Son,

You were born so perfect, so beautiful, and oh so delicate. Your almost translucent skin exposed blue protruding veins on your tiny forehead, and little map-like red blood vessels were apparent. You stretched your tiny toes as I counted them, and clenched your fists as I lovingly held your hand. Your beautiful lips, so perfectly formed, puckered up, as a cry emerged from your throat. I cried along with you as we began this journey together.

Just 24 hours earlier, I could barely see your features. You had an IV protruding from your forehead, your nose had an NG tube inserted, and your mouth had a thick endotrachial tube coming out of it, attached to that tube was a ventilator giving you life saving breaths. One arm had a cuff recording your blood pressure, while the other was measuring your oxygen saturation levels. Your chest had tubes and wires monitoring your heart rate. Your eyes were covered to protect you from the phototherapy to get your elevated bilirubin down.

I thought having a child in the NICU was the worst feeling in the world. It was so difficult for me to leave you there, under care of strange nurses and doctors, while I went home empty handed day after day. I begged them to let me sit at your bedside 24/7, but they insisted I go home and come back to visit and feed you when you were able to finally feed. Despite all the medical paraphernalia that surrounded you, I thought you were the most beautiful baby in the world.

As I held you lovingly on the day you were extubated, and heard you cry for the very first time, I cried and cried as I wiped my tears off your face and mine. You were in a rush to meet your family, and you were born eight weeks premature, which resulted in the prolonged hospital stay. And now I was so grateful to put the NICU time behind us and finally take you home. Everyone around shared in the simcha as you joined klal yisroel at your bris just ten days later.

You were tiny and fragile and ate really slowly. Every mother’s joy is to feed her child and watch him thrive. I fed you round-the-clock as you tired quickly from sucking. I tried different bottles, nipples, and feeding paraphernalia to get you to eat properly. You didn’t. You cried and arched in pain and couldn’t get a grip on the bottle. My pediatrician reassured us that it was normal for premature babies to have an immature suck and swallow, and with time you will strengthen and grow.

We were young and inexperienced with regard to feeding a small premature baby, but we had had loads of love to offer which experience could not give us. We painstakingly dropper fed you, and bought expensive specialty bottles to feed you - to no avail. At four weeks, you were way below your birth weight, and at five weeks, a cyanotic episode had us rush you to the hospital for testing. Tests revealed that you had secretions in your lungs, which meant you were aspirating the feedings we were giving you. You also had severe reflux, which was preventing you from gaining weight.

We were sent home on continuous pulse oximeter monitoring, and an ng tube taped to your face. We learned how to feed you with an electronic pump which slowly administered a special formula into the tube in your nose. We learn how to administer oxygen when your fluctuating oxygen levels dropped below a certain point. We learned how to suction extra secretions carefully, so as not to cause you irritation or bleeding, and we learned how to love a very technology-dependant child.

I won’t go into the medical jargon we were forced to learn, or the myriads of doctors we went to. Your three older sisters were sent to family for months on end, as we went cross country to help alleviate your pain and figure out how to properly care for you. We searched for a diagnosis so that we can manage your care as best as we can.

Money didn’t stop us. We took out a mortgage on our home to insure you had the best medical care and therapy. Totty had to switch jobs several times as we were out of town so often, very few employers would put up with it. I quit my job as soon as you were born so I could devote my full time to my lechtige neshama. But the financial stress did not stop us from going to the top specialists and world renowned diagnostic centers.

At ten months old you were diagnosed with a very rare neuromuscular condition. The prognosis was grim. The doctors knew little about this disorder, but knew it was serious. They felt it was their duty to prepare us for the life ahead of us, of challenges and pain.

We were robbed of our dreams as we sat through the appointment, tears streaming down our face. The air was so thick, you could touch it- as word after word tore layer and layer off our heart exposing our deepest pain.

Our house became a revolving door for nurses, therapists, and volunteers. You slowly developed, and at age six started walking. The joy we felt was indescribable. You still had lots of medical issues and we dealt with each one individually, not lumping everything into one big diagnosis. Baruch Hashem, you’ve made amazing progress over the years.

No, your life has not been easy. You’ve had numerous surgeries, and had many, many challenges over the last several years. We’re fully aware of your pain, and although we may not show it, we have shed every tear along with you.

When your classmates make comments, or poke fun at you, they are ripping at my heart as well. When you struggle to get up the stairs, try to catch your breath, or have to miss days on end of school for appointments, those struggles are mine too. I watch you do your therapy and treatments and wish I can trade places with you for a day so you should be pain-free.

We try to be strong around you, but I know to you it seems like we are unfeeling. Trust me; your pain is our pain. You never have questions; your unwavering bitachon is an inspiration to all around you. You’ve taught all of us about acceptance and ahavas Hashem. I don’t need to go to speeches to hear about getting close to Hashem through challenges. All I need to do is watch you breathe as you lay in bed unaware that I am at your door just smiling at my Yakov, my unbelievable nachas and joy. I think back to the neurologist who predicted a life of hardship, and I wish she would meet you. You overcome all obstacles with a smile and tackle each challenge at it arises.

My message to you is one of love. When I demand certain therapies, it’s only because I know it’s best for you. When I put you through tests and procedures, it’s only because I want the best medical care and have your long term health in mind. When I schedule surgery, it’s only after 3-4 medical opinions, and nights of agonizing decisions, consultations with rabbanim, and discussions with other parents of children who have been through this successfully

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