your local hospital, school, restaurant, etc is at the bottom. I have no connection to
the program--I just know how very essential it is!)
(If you've followed my blog, you know that this trip was extraordinary in more ways than one. I'm beyond joyful--and grateful---to have been able to live this experience through him.)
As someone with nonceliac gluten sensitivity, he was even fed safely on the ship! (unlike five years earlier, when he spent a month in the hospital and rehab. Frightening!)
This mom was thrilled with each and every picture and each story he shared along the way.
That particular night of the camping trip just happened to be the fifth anniversary of a date that will forever bring me strong emotions--the exact anniversary of "that" date. Thankfully, some of the emotions I am now privileged with include gratitude (beyond any I've ever experienced). Michael woke in his sleeping bag on that icy continent at almost the exact same time that the police rang my doorbell on that very morning exactly five years earlier, telling me my son was in an auto accident.
My Son (Inspirational Journey Through Recovery From a Traumatic Brain Injury)
We were ultimately blessed--- truly, truly blessed with a miraculous recovery.
His recovery wasn't expected at first, from his doctors, anyway. As a mom, I knew.
We were blessed with many, many prayers, with angels, with phenomenal nurses and techs and surgeons, and first responders.
We were blessed.
But through all he (we) went through, tell me this: WHY is it that many hospitals and medical facilities (not all, but MANY) lack the ability and education to appropriately feed their patients with special diets? He was fed safely and appropriately on that ship----but in the hospital and rehab?....nope! This diet isn't a way he chooses to eat; it's medically required (as someone with non-celiac gluten sensitivity). *OK, yes, he could choose to NOT follow the diet, but he likes feeling well.
Michael was unable to eat real food for several days after the accident (due to his physical state, not due to his diet, of course). One of the first meals they brought him, once he could eat (clear broth) was removed when I asked if it was gluten free. I had remind them of his special diet requirement, more than once, prior to him being able to eat real food. This isn't something that should require strict supervision by a family member. If I wasn't there, he would have eaten that soup. He was also recovering from a severe brain injury---so no, he wasn't about to question, or even care or think about, his food.
So---what did they bring to replace this broth (that smelled so good to my son)? NOTHING!
And I surely wasn't going home at this point to cook....
Mistakes were made later in rehab (which I'll share more about later).
This was a battle and this is a FRIGHTENING reality!!
My son isn't one of those who vomits with gluten (although many do). He doesn't get the big D or get an upset stomach with gluten (although many do). But gluten does make him feel miserable. It also gives him canker sores. And with what he was going through, he surely didn't need one single thing more to add to his misery; he didn't need anything else that needed to heal. It is crazy to think that they don't take this seriously. Crazy!--and frightening!
What if he was one to get the big D or to vomit? With a severely broken jaw, broken ribs, a major injury to his backside (that thankfully did not include his spine) and a severe traumatic brain injury, this would have been catastrophic! They would have had to peel me off someone. But surely this has happened to others. We generally aren't in the hospital because we feel amazing. But I hear horror stories all the time from others (who need to follow a gluten-free diet) who are given regular crackers upon waking from anesthesia, or brought dinner platters with bread or breakfast with a muffin. . . Gluten-free education, in facilities where we should absolutely expect nothing less than complete safety, is lacking in a major way----and it terrifies me!
CHANGE is NEEDED!
When my son came home, a month after the accident, we rejoiced; it was a happy, happy time---of course! Beyond happy! I could have left well enough alone (with the rehab), but I didn't. I could have taken legal action, but I didn't. What I did do, though, was write a letter to the rehab facility. Weeks later I received a call. I was given an apology and I was told they held a meeting and they made changes. I thanked the caller but I was told I shouldn't have to thank him for changing something that should have already been in place. And he was right!
So you see, one person can make a difference. Please, if you have an experience at a hospital that is less than accommodating to your diet requirements----write letters. Explain your experience, your needs, and your expectations. Or better yet, write before you, or a family member, ever needs that hospital.
One person CAN make a difference!
Our experience should not happen to anyone!--- But it does, all the time.