Story from a GSID Parent
I want to let you all in on a little secret: I do not, DO NOT have my act together. Not even a little bit.
The bills are in a pile on the corner of the dining room table unpaid, unfiled, and untouched. My six-week grocery plan has expired. I was supposed to go grocery shopping last weekend, and I have not one clue what I will be feeding my family tomorrow. Not one. There are no clean towels – and I own many, many towels. I am tired. I am exhausted. Why? Well, I’ll tell you.
My son was diagnosed with a rare genetic disease that does not allow him to properly digest sugars or starches – the kind you find in normal, healthy, everyday foods like fruits, vegetables, and grains. It comes with lots of big words like genetic sucrose-isomaltase deficiency. It comes with far-flung support groups. It comes with a specialized and highly restrictive diet. It comes with knowing that nearly all over-the-counter medicines are off limits because they are formulated with sugars and starches, which may not be on the label.
It comes with piles of papers and information, so much that I had to make a binder to sort it all out. It comes with clinical trials, hours on the phone with doctors, insurance, care coordinators, and peer coaches. It comes with frustration, anger and tears. And guilt. Guilt because my kid is bright and cheerful when I’m not. Guilt because we are about to have another baby who may be at risk for the same disease. Guilt because before I know it, my focus will be divided; and I will not have the time or brain cells to deal with this deficiency the way my son deserves.
And I’m so angry I want to yell at everyone. At my sweet dog for following me everywhere because she is worried. At my husband for like, whatever. At the excellent doctors who found this condition. At my son for refusing to sleep or nap and wanting to do nothing all day but snuggle and read books. I want to scream at the know-it-alls on Facebook who keep posting pseudo-scientific articles about how you can cure allergies and food sensitivities by just eating right and exercising.
I see myself calmly explaining my son’s diagnosis, not because I feel calm, but because someone asks me about it when he is standing right there and I want him to feel normal. I do not want him to see the panic I feel, the crush of anxiety when I think about all the phone calls that I need to make, the fights I need to gear up for, the future I have to prepare him for, and the dinner I need to plan.
I have not written about the months of gas pains; sleepless nights of moaning and inconsolable crying; days spent with a toddler refusing to get out of bed because he hurts; endless doctor appointments; or the foul-smelling, malabsorbed, fermented, liquid bowel movements we have been dealing with because I do not want to dwell on it. I have not written about these things because life is so much more.
I am not writing this for sympathy. Or support. Or compliments. I am writing because I want others to know what living with a child with GSID can be like and the frustrations it can cause. I am not particularly equipped to handle this challenge, any more so than any other parent who receives similar news.
But what I have not written about is how much support is available, how family and friends rally round, how your healthcare team helps you out, how life eventually becomes easier as you and your family and your child learn to cope and thrive. Believe me, it’s not a piece of cake – not by a long shot. But you will survive. Hour by hour. Day by day.
I have to tell you. There was this moment last night. Kiddo was freaking out because he was sick, and he only wanted to eat pears. I was freaking out because I could not give him pears. The hubster looked up from fixing dinner to see what the ruckus was and sliced his finger. It was like the clock struck meltdown, and for a minute we all just caved. Then we got our act together and got on with living. Not the perfect moment, but not all bad either.