This post might not make me the most popular woman on the internet, its definitely not going to make me mom of the year. And I hope that one day when Toby is 6'2, 200 lbs of muscle, we can both read this, me sitting on his lap, and laugh at my sweet niaivity. But c'mon, I can't possibly be the only mother in the world who has doubts? Maybe I'm the only one who says them, but I know I'm not the only one who thinks them.....right???
In these photos from this week, I can't help but think Toby looks like a little doll.
With all of Toby's diagnoses still unknown, my mind ventures to the future, thinking about all the possibilities for my boy. He can be a doctor, a lawyer, a teacher. He can be a boilermaker, like his father, and fit perfectly inside big power plant furnaces without a hitch. But, I fear my son will never be a basketball player, even though it's one of his favorite activities now - Daddy lifting him up to dunk in the toddler net.
Like in all of my reflections, there's this devil on my shoulder asking - what if he continues to not grow? I hesitate because he loves firetrucks and hoses. When he's an adult, what if a fire hose weighs more than he does? What kind of mom would I be if I encouraged my son to be something I fear he won't ever be able to do? Are there world famous chef's that aren't allowed to taste their own recipes or the food served in their restaurants?? (Maybe he'll start his own GF chain?!?). Stepping outside of my own circumstances... What if your child aspires to be an opera singer, and can't for the life of them stay in tune. Do you keep up the positivity knowing they weren't born with a singing gene? What if they fail math every year, but dream of being a chemist when they grow up - Is it in our job description to push them to work harder at something that just doesn't come naturally, or do we instead find all of the characteristics they excel in, and promote a lifestyle suited to their strengths.
When is the line drawn between advocating and pushing for dreams to come true, and setting your child up for a crushing blow?
I know what your thinking, and trust me, I'm thinking it too. He's 2. He's not thinking farther past the 8:30 pm episode of Bubble Guppies much less his career path in life. So why do I fret about this already? Why can't my mind be as innocent as his, mesmerized by bubbles and balloons and bath time. It's only natural for parents to be protective, and with that nurturing and loving. I wonder if I'm doing my tiny boy an injustice or a favor by leading him to believe that in reality, there are just some careers and hobbies requiring certain physical capabilities that someone who has a growth problem might not be very successful at. I'd like to believe the latter, but like all of my thoughts these days, it's inter-weaved with doubt.
Updates
This week we celebrated a milestone. Toby turned 2!!
We had a little family celebration the night of his actual birthday with this store bought GF cake from whole foods. It tasted like cardboard and shortening with sprinkles on top. So I thought for his big party that weekend, I would attempt my own cookie/ice cream cake. It turned out muuuuuuch better, and I think even the glutenous members of the family thoroughly enjoyed it.
Some happiness from this week, in 77 degree weather on a sunny Sunday:
Learning to blow bubbles
Opening his lovely presents
Lovins from Issy....
Very First Easter Egg Hunt!!
Unfortunately with all the happiness, we also had another doctor appointment thrown in between our celebrations. We didn't gain any weight, again. To put things in perspective, this visit marks 10 months in a row with no growth - almost an entire year - almost half of his entire life. This doctor appointment, unlike any before, ended with a high-five from Toby. We had no shots and no sticks! What a great birthday present indeed!
I had spent part of this week looking up Toby's recent test results that had come into our My Chart Inbasket - an online service we use to view our medical record at Children's. Why I thought it would be a good idea to look at them, I have no idea. I think I was hoping that everything would be normal and I could sleep easy, but they weren't. And I should have known better.
I stopped taking notes when I got to my 5th abnormal result. This one, showing signs that Toby could have sarcoma, Hodgkin s Disease, Leukemia, and other unspecified inflammatory conditions according to internet research. What the hell was I thinking?!? You would think I would have learned my lesson by now, but my desire for Toby to be "normal" is so strong, it turns my rational thoughts to mush. At our office visit, I tried my best to explain my findings to his pediatrician. He was not the one that ordered the tests, and assured me that he would get the findings from the immunologist as soon as he had time to review the results, following with - "I could have told you they would be abnormal!" Duh. These findings could all be related to his most recent diagnosis of Celiac Disease, so why would my untrained eye be granted privilege to view such destructive info. One can only wonder. We are still waiting for our visits on April 30th - we have three of them scheduled. First stop is GI, then nutrition, followed by Hem/Onc. Prayers for our little man, for his comfort and good results. After those appointments, we meet with a Geneticist the first week of May. I can't say we aren't doing everything possible to find out what's wrong.
Until Then...
Until Toby is old enough to understand - he will feel like he can conquer the world as he conquers the stairs. Until that day when I have to sit my son down and proclaim example after example of every quality and feat he excels at, he will think he can do no wrong. But, there will be a day, shadowed in a gray cast of worry and sadness, that I will inevitably console him because he is not big enough to do something. Anything. I know it. And until then, I will be praying that I will be enlightened as to the words I will use to explain what a blessing this all is. That since he was a baby boy, he's been the one of strongest men I know. That if all the other boys had half the amount of courage and perseverance as he does, the world would be full of brave warriors and no sadness or bullying. After all, he may be small, but he's still the man :).
Thank you for listening,
Lindsey
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