Learning to Parent My Child, Not His Diagnosis

Image via Rachel Engel

After 90 days in the hospital, we were finally home with our baby. He was now outfitted with a feeding tube port in his belly, and his stomach and chest were covered in scars as a result of several surgeries, including a long one in the center of his body from his open heart surgery. He was healed, he was home; the ordeal was over.

And I was positively scared of him.

Beyond scared. I was intimidated. Parents of special needs babies aren't given a crash course on what to do and how to handle things. Just like any other baby, once they are stable, the hospital hands them over to the parents, like, “Here, don't screw it up.” And for my little guy, who'd had thousands of people helping him survive for the last three months, how was I supposed to keep him happy? Or healthy? Or alive?

During those months in the hospital, I, of course, loved on my little guy. I snuggled and rocked him at night, and worried and cried over him, and fought for him to be made a priority. I did everything I was supposed to be doing for my sick baby — except attaching to him. There was love there, surely, but it wasn't the usual “I adore this child because he is mine, and for no other reason.” That attachment didn't have a chance to form because I immediately launched into my “This is my sick child, and I must be strong for him and do what I can to help him.” A fierce, fierce mama bear came out of me, but the soft mothering part in me lay dormant. 

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And so those first few weeks that we were finally home carried on much the same as they did in the hospital. I made sure he was getting his medicine on a strict schedule, and his feeds were always exactly three hours apart. I did physical therapy exercises to work on his strength like clockwork and stimulated his mouth, per his speech therapist's request, to keep the nerves aware and ready for the day he might be able to eat orally again. But, I was so laser focused on doing everything the hospital did, knowing that what they had done kept him alive, that I completely forgot he was a baby.

He wasn't his diagnoses, or his disabilities, or his medical equipment. He was Jackson.

Our Jackson.

Our Jackson is 8 months old and becomes almost giddy when he sees me or his daddy.
He stares in awe at his big sister.
He has discovered a love of eating his toes and is really starting to appreciate what a valuable tool his left hand is.
He loves over-exaggerated kissing sounds, and his tummy is extra ticklish.
His tiny smile sits on his face for most of the day, with just the hint of a dimple in his left cheek.
He just learned how to say “mama” and “dada,” among other babbling sounds.
He is a very happy baby. 

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It took me a long time to see these things about my son first and his mile-long list of medical problems second. I didn't intentionally hold him at arm's length, but I was subconsciously seeing his disabilities instead of his face. He was a baby we had brought home from the hospital, and I was to care for him.


Oh, I loved him and kissed on him, of course. But I cried. A lot. And when I looked at him, it was with eyes of sympathy and heartache instead of adoration and joy. All I was seeing were his limitations, not his potential to cope with or overcome them.

Then, as time went on, and his smiles became deeper, and I began to relax a little bit and enjoy his company, things felt more normal. I slowly began to let myself relish the joy of having two children. How fun they were! How fascinated Jackson was by his big sister, and how I loved watching them interact. Eventually, I would glance up at the clock, and think, “Crap! It's 12:30, he was supposed to get his second feed at noon!” 

Ahh, there's my true parenting skills at work. Too involved in playing with my kids to remember basic necessities. 

What do you think?

Learning to Parent My Child, Not His Diagnosis

Rachel is a stay-at-home-mom to her 4-year-old daughter, Sydney, and her 18-month-old son, Jackson. Her writing can be found all over the web, mostly detailing her own parenting struggles and triumphs, as well as her life as the military spouse of an active-duty airman. She also writes about her life as as a special needs parent on her blog, Tales From the Plastic Crib, and spends an unnecessary amount of time on Twitter. ... More

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1 comment

  1. Karin Lombardo says:

    Hi Rachel, I love your article while I was viewing your link. Really inspiring. This small piece of article can inspire to every mom. I work with Pocket full of feeling that has brought an amazing ways for your child development. It also teaches how to adapt the child’s behavior in a positive way. Thanks for great ideas.


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