size matters

They say that size does matter and while raising this amazing little man of mine I have discovered that to be true.

Raising four healthy, term children I never really gave their growth that much of a thought. Wait, that’s not true. I did obsess and worry a little as a young, inexperienced mother who lacked confidence in her own ability as a competent mother say when a family member would question whether that newborn demanding to be breastfed every two to three hours was getting enough or when they would compare a robust, chunky child to my lanky, scrawny-looking child. I’d worry a little then common sense would prevail because I was a gangly, skinny kid. No. Really. I was. Why wouldn’t my kids take after me? I mean it could happen. Then I would stop obsessing and worrying.

But for Daniel it has always been different. Starting out weighing 1 pound 6 ounces he definitely had to catch up. When he was discharged from the NICU at age 4 months, 40 weeks/full term adjusted age weighing 7 pounds 6 ounces, I was confident that he would catch up to his same aged peers. But it hasn’t been that easy. No, it has been hard…hard for Daniel…hard for me…hard for the whole family. As his medical team obsessed over every single ounce of food he would take and every freaking calorie, I began to really question my ability to be a competent mother who knew how to feed her own child. When GI docs and dietitians began counseling me on how many calories I should stuff my child with and what kind of food I should be feeding him, I did break down thinking I had failed. Common sense and little more knowledge of the anatomy and physiology of the growing preemie than the average parent assured me that I hadn’t failed my child. Still stuffing his tiny body with twice the amount of calories I was consuming daily and taking in the unsolicited advice, comments and questions of well-meaning family, friends, total strangers rubbed away my common sense and professional knowledge base. Size DID matter. A healthy, chunky baby with rolls of chub was a badge proudly worn by a good mother. An undersized, scrawny one who never even made it on the growth charts was an indication that the mother had to be doing something wrong.

I started writing Adventures in Juggling to cope with and come to terms with this. Every day while I daily obsessed over every calorie and the protein to fat to carbohydrate ratio of the tube feedings I gave my son, I would also pour my heart and soul into this blog writing about my frustrations, my obsessions, my tears, my fears…and successes. Daniel did grow. He did eventually learn how to eat by mouth and he did get rid of the gastrostomy tube. It was our happily ever after, but eating still remained a challenge for him and me together.  And although he was growing at his own rate with his own curve that progressed upward, he still has remained head and shoulders below his peers.

He’s 8½ years old and size definitely matters. It matters to his friends. It matters on the playground. It matters to his pediatrician. It matters to Daniel. He’s a big kid. Just ask him. He’ll tell you that he is going to be 9 and he’ll also add that time will pass soon enough where he will be old enough to see a PG13 movie. He knows pretty much all of his friends can ride a two wheeler no problem but his size and lower body strength makes it still a challenge. He sees his closest friend play baseball and football with other friends who tower over him…and ignore him because in their eyes he’s no bigger than his best friend’s 3 year old brother and it frustrates him because he is a big kid too. But size matters. We have worked with his adaptive PE teacher during school finding activities he can enjoy and be successful at. We enrolled him in Tae Kwon Do last fall and he has loved it progressing very quickly from white belt to a junior green belt. Size doesn’t matter in Tae Kwon Do…it’s what’s in his heart and mind that matters…especially when he spars with one of his teachers who towers over him. He was successful and with that he gained confidence, strength and stamina. Who knew he could jog 13 laps at the schools jog/walkathon? He knew, that’s who! This summer he has discovered another sport where size doesn’t matter. His Dad got him his own set of golf clubs and every chance he gets he is out in the backyard putting or begging his Dad to take him to the driving range. His Dad’s heart swells just a little with pride as he grabs his clubs and heads out there with his son.

But size still seems to matter. His pediatrician reminded me of that this last February. Daniel’s growth plate x-rays suggested that it matters as well. Dr. B. referred him to Children’s Hospital Central California‘s endocrinology department for further evaluation. We’ve been down this path before with him but nothing came of it except for monthly blood draws checking his hormone levels and the endocrinologist never deciding if Human Growth Hormone should be considered. I finally grew weary of the time traveled to the specialist in Palo Alto and the monthly torture to find a vein and draw his blood. I asked that specialist to decide if she was going to move forward and treat him or we would move on. We moved on then. But Dr. B. convinced me to consider revisiting this one more time. I agreed and waited for the referral to be processed and for the insurance gods to decide that we could take our child to see the specialist. Of course waiting meant someone somewhere shuffled the paperwork into non-existence and Daniel’s referral was forgotten by us all…well, not by Dr. B. A few phone calls and faxes from her and me last week got the referral in motion and this week we have an appointment for next month to see the Chief of Endocrinology at Children’s.

I admit that I am ambivalent right now about all of this. Yes, size does matter in the life of my son. I’m reminded of this truth every day one way or another. Still I loathe to regress back to that mom who counted every calorie, who obsessed over every ounce gained or lost. I. Don’t. Want. To. Be. Her. Ever. Again. Perhaps I won’t have to. We’ll see in a few weeks. And of course I will be blogging all about it because it’s my therapy.


8 thoughts on “size matters

  1. And I’ll be following it! Your son sounds like an extraordinary little boy. Perhaps partly because he has had to fight harder than everyone else, but probably just because of who he is. My son has just turned seven. Good luck at the appointment next month.

  2. Even through your “therapy blogging” you still come across as upbeat and positive for the future. It gives me hope that someone who has been on such a thrilling roller coaster ride can still smile through it. Children’s Central Cali is awesome. We had a week long stay after my darling daughter was born. I have nothing but great things to say!

  3. I just read a book called “Short” that talks about how silly in the end it is that so many doctors are all about trying to get people to be taller. Sure, I accept that it is important to make sure that people are healthy, and that smaller size isn’t an indication of a different, more serious problem, but worrying about actual size (in which someone would receive growth hormone) just emphasizes that in most people’s eyes, taller is better. Yeah, I’m 5’2″… and THREE QUARTERS! 🙂 Daniel thinks I’m hot, and I’m short, so THERE.

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