When my son was a little boy he got a terrible case of food poisoning after eating old ice cream at his Grandma Moder's house. In all my years I've never seen a child vomit so much and he ended up having to be admitted to St. Louis Children's Hospital for several days. It was my first experience having one of my children in the hospital but my most clear memory of the entire stay had nothing to do with my family at all.
It's funny how our memory can take snapshots of moments and replay them over and over throughout your life. It's like your subconscious knows that this moment will need to be remembered so it burns the image into your brain. In our case the image that was burned was that of an exhausted and obviously distraught mother and a very sick teenage girl huddled around something with another woman who was obviously a hospital employee.
I couldn't hear what they were saying but I was literally stopped in my tracks when I saw the mother. The look of total despair and being overwhelmed were so evident on this poor woman that it was all I could do to stop myself from walking up and offering to hold her while she cried.
When the nurse I was walking with realized I was no longer beside her she came back and looked at the family with me and said, "I feel so bad for that family, their daughter was diagnosed with Juvenile Diabetes last night and they're going through our training for diabetic families."
Little did I know that only a few years later I would become that mother and know first hand the devastation she was feeling. I would also look as overwhelmed, exhausted and lost as she did.
When your child is diagnosed with Type 1 (Juvenile) Diabetes your entire life changes in an instant and from that moment on you live in survival mode. The thing I remember most from our "Diabetic Boot Camp" 3 day training session in the hospital is Brandi and I sitting down with the diabetes educator and being told that Brandi could eat anything she wanted - in MODERATION - but that we would have to become experts at reading nutrition labels, determining the number of carbs she was eating, then doing the math to figure out exactly how much insulin we would need to inject to cover the carbs consumed. Thank God I had always been good at math, because it can get really complicated to figure the dose out at times.
Survival mode becomes your new normal when your child has diabetes. You never really get use to it, but you go on...because going back to your old life isn't an option.
Unfortunately for some of us there's another level beyond survival mode...I refer to it as "Drowning Mode". Our family went into drowning mode four years ago when Brandi's body no longer responded to her daily insulin injections the way it should and she became so sick I knew she was going to die.
There is nothing worse...absolutely NOTHING...then looking at your child and seeing the life fading from them. I know many of you are nodding your heads and saying, "I know, it's terrible" but trust me, you have NO idea what it's actually like until you live it.
We were lucky because eventually her doctor figured out why she had become resistant to insulin...complete adrenal failure... and although she was now able to take daily medications to keep the adrenal failure from killing her, we now had something much worse than diabetes to deal with, we had insulin resistant diabetes!
So for four years we've been in drowning mode where our lives have been nothing but a continual circle of dangerously high blood sugar levels, astronomical levels of insulin injections, DKA, more hospitalizations than I can count, seizures, comas, weight loss (Brandi...not me), doctors appointments, MORE doctors appointments, calls to 9-1-1 when she was too critical to be taken to the hospital by car, days of no sleep, vomiting...lots of vomiting due to high blood sugar, research for new treatments, being told Brandi needed a pancreas transplant, never ending fundraising for a transplant, hospital bills, medication bills, doctor bills...did I mention no sleep....oh yeah, working 80 - 100 hours a week to pay for all the above while trying to provide a good stable home environment for a toddler.
We weren't surviving...we were drowning, plain and simple. No matter how hard we worked, no matter what we did it was never enough, Brandi wasn't getting better - she was actually getting much worse.
In hindsight it seems like things came to a breaking point for our family in March of this year during one of Brandi's multiple hospitalizations. Blood work showed that Brandi was severely malnourished....we're talking a reading of ZERO on the test, something that none of her doctors had ever seen before. Her endo described the reading as that of a starving Ethiopian child just hours before they die. Yep...THAT got our attention.
So now they had to figure out exactly none of the food Brandi was eating was providing the nourishment it should, and we prayed...and we asked EVERYBODY to pray for her. We received a miracle (there's really no other explanation for it) and Brandi's levels started going up again...but she still was a very sick young woman.
And then, in August our family received a miracle in the form of a diabetic alert dog named Hope. The moment Hope met Brandi for the first time she alerted to a high blood sugar - another picture that is burned into my brain...that first alert.
Life has changed a lot since Hope came to our home. Brandi's blood sugar levels are still all over the place (and due to an additional seizure medication we now deal with a lot of lows as well as highs) but Hope catches almost all of them. Hope alerts all the time, she alerts to Brandi, she's alerted to Bella (who was 200, which is above the 180 Hope alerts to for a high, but still within limits for a child of her age) and recently it was pointed out that Hope has been alerting to ME. Okay, the truth is that Brandi's been telling me that for weeks, but I blew off the notion because I'm not diabetic. I finally listened when our trainer Dana pointed out the same thing during lunch one day and told me to check my blood sugar, which was 111 only 1 point above Hope's alert level of 110 - BUT I had just eaten so obviously my level had been below 110 when she had been alerting. I was encouraged to check each time Hope alerted to me (which I have) and she's been right every time, with my blood sugars ranging between 80-100 at each check.
The other day Hope alerted to Brandi during a training session and Brandi told Dana that she knew she was really high, so I immediately felt the panic of how high? 500? 600? Too high to register?
The glucometer showed 256...definitely high, but not "drowning mode" high.
I think it was that moment that I realized we were no longer in drowning mode and really hadn't been since we got Hope. Not one hospitalization since her arrival...not one bout of DKA.
So now I am deeming our family firmly back in "Survival Mode" and I must admit it feels great to merely be surviving again. I feel like I can breathe and am actually starting to enjoy life again...something I haven't done in years.
Besides the obvious joys of seeing Brandi more healthy, there's the added bonus of "me" time. I forgot what it was like to take an hour a day simply for myself, but I do it now without guilt. I use the time to walk, which is not only making me physically healthier, but improving my emotional health as well. I'm learning to relax...I'm not petrified at the thought of going to work and coming home to a dead daughter, which means I can give people calling in with emergencies 100% of my attention.
I would love to live a "normal" life again, but I know it's never going to happen...so for now I'm content to be back in survival mode, counting carbs and watching my D-Child the way every other D-Mom and Dad does.
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