Tuesday, January 31, 2012

Bringing Home Diabetes

Following is a reposting of the 2nd part of our diagnosis journey. As I look back over those early, traumatic months it brings up many feelings. Though this particular writing reminds me of anger and sorrow, it also reminds me of the strength we can draw from each other when its least expected.

I left off our Diabetes story at the point Nikki was released from the hospital. We get home and are a feeling a mixture of relief in just being back in our own house and complete fear that we won’t be able to take care of Nikki and the worst will happen.

Of course, there was our other daughter, Amber, to consider as well. One thing that can and often does happen, is that the chronic illness of one child can completely over shadow the needs and even the existence of your healthy child(ren). I will touch more on that in future writings, but I would like to say that Amber is another of my heroes.

There is so much involved in the day to day living of life with diabetes that I won’t try to go overboard in details. Instead I want to touch on a few milestones. For this posting, the milestone is acceptance.

I mentioned in the first writing Nikki’s anger toward me. That is sort of putting it mildly. I would say that in her 5 year old mind she bordered on hating me, at the time. Of course, I didn't blame her. Her anger at having Diabetes was totally directed at her mommy. She was not capable, at such a young age, to identify her feelings and/or give a voice to them; so they naturally came out as anger directed at the person who she thought could fix everything, mommy. The outbursts were frequent and increased in violence. The final outburst came about a month after her diagnosis, during a trip to Kroger.

We had finished our grocery shopping; Amber was at home with Daddy so it was just Nikki and I. She decided, for no particular reason (and I believe there really wasn’t one) that she was not going to get in the car with me to go home (I think she felt so out of control that she was trying to control whatever she could, namely me). Up until that point, I will admit that I indulged her anger toward me because I felt so guilty that she had this thing to deal with; so I overcompensated in inappropriate ways. Anyway, she stopped about 8 feet from our car and said “I’m not going home”. I told her, most likely in a very sappy tone of voice, that we needed to get home because she had to eat. Looking back now, I believe that comment was the trigger for her almost instant and complete emotional meltdown.

She started trying to kick me. A light bulb went on in my head and I realized that I was losing control of my 5 year old. It suddenly occurred to me that having diabetes was no excuse for public temper tantrums. I picked her up. Those of you who have ever had to pick up a 5 year old in the midst of a temper tantrum, have an inkling of the strenghth they can have; combine that strength with an overwhelming anger and terror at not really knowing why your parents are constantly sticking you with needles, making you eat when you don’t want to, not letting you eat when you do want to, etc. etc. and you get a minature Incredible Hulk.

People stopped and stared at us; most likely convinced that I was (a) kidnapping an unwilling victim or (b) a terrible mother; at that point I didn’t care. My only objective was trying to get this little person into the car. I finally succeeded, and then it took another almost half hour to get her into the car seat. I backed out of the parking spot and began the short drive home. About halfway there Nikki managed to get herself out of the carseat and was attempting to get out of the MOVING car. I just kept going. I drove the last 2 mintues to the house with one hand on the steering wheel and one and on the door lock in the back seat, with Nikki biting my hand, and I don’t mean a nip, my hand was bleeding.

I get her home and by then yes I was fussing at her; we get inside and I just collapsed on the kitchen floor in tears. I began sobbing, really sobbing and she suddenly stopped being angry at me and just looked. After a couple of minutes I felt her little hand on my head. I looked up at her and it was in that moment we reconnected .... through our tears. We continued crying and holding on to each other. I think it was then that Nikki realized I hated what was happening to her as much as she did. Obviously, a 5 year doesn’t process information in that way but that was the jist of what she understood in that pocket of time.

What I learned from all of that is this: You have to be strong for your kids. To me that meant -- at the beginning of her diagnosis -- not falling apart before, during or after a crisis. You don’t want your kids thinking about how mom will act once the crisis is over, that will only add to their stress. So I kept it all in. The message Nikki got from me was that I was okay with her having diabetes. She thought it didn’t matter to me. Showing and sharing our feelings with our children is a good thing, when done appropriately. They need us to be human. They need us to say "I'm sorry" when we screw up, or when they are hurting. Sometimes they even need to see us cry. Sometimes they need us to cry with them. Nikki never had another outburst after that day.

Saturday, January 28, 2012

A Gluten Free Feast

Today we celebrated my mother-in-law's 78th birthday with a family dinner. This was the first BIG 'feast' type meal we've hosted since Nikki's Celiac diagnosis. It was delicious and stress free. We had homemade mac & cheese, mashed potatoes, veggies, olives, and ham. Nikki cooked all the desserts -- chocolate chip cookies and brownies. Every bit of it was gluten free and amazingly tasty. It's a good feeling to know that neither T1 or Celiac has defeated our treasured family feasts; or the spirit of my wonderful daughter. Her blood sugar was 139 before lunch. As of this evening (and after a few too many chocolate chip cookies) she is 166.....not too bad.

Here's looking forward to a thousand more gluten free and blood sugar friendly family feasts.

Monday, January 23, 2012

In the Beginning

Nikki the year of her T1 diagnosis: Age 5

Nikki approximately 9 years later: Still Smiling

I've been going back over some old blogs and, because Nikki's 9 year 'Live-a-betes' anniversary is just around the corner, I thought it would be a good idea to share the beginning of our journey with friends and family who may not be aware of the events that took place in the early weeks of our life with diabetes.

This blog is a reposting. It describes the first part of our life with T1.....the diagnosis.

Diabetes Journey: Part 1

It was a busy afternoon in April 2003. I had both my girls: Amber age 9 and Nikki who had just turned 5, in the back seat of the car. We were on our way home from a trip to the mall when Nikki announced “mommy that pointy thing is hurting my stomach”. I literally felt exasperated; Nikki complained constantly about her tummy hurting, we had done everything we could to figure out why and it always made me feel helpless when she fussed about it. I said “Nikki your tummy always hurts honey; I don’t know what else I can do”. My sweet little girl accepted that answer and complained no further.

About an hour after we got home, I had fed the girls lunch and was busy with this and that around the house. The girls were playing downstairs. I went to check on them and found my baby Nikki on the floor, sitting up, leaning against the couch with her hand on her chin, sound asleep. I remember thinking “isn’t she so beautiful and sweet”; and I went and got my camera to take a picture.

A day or so later, April 5 to be exact, I had just finished placing dinner on the table and my Nikki immediately reached for her drink first. I said “Nikki Marie you have to stop drinking all your meals, you can’t have another drink until you eat something”. Her little face fell; Nikki doesn’t like to be scolded and is very compliant, so she complied. She ate but continued to ask for drinks throughout the night, her favorite Gatorade. That morning I bought a new gallon of Gatorade thinking it would last quite a while. By the next morning, April 6, 2003, I realized it was all but gone, that’s when I instinctively knew something was very wrong.

I called one of our closest friends, who also happened to be our family doctor, and told him what had been going on. He told me to bring her in right away. I loaded up Nikki and Amber and off we went. On the way, I phoned Bryan who was traveling for work about 4 hours away and told him I was taking her to the doctor. He said “just call me and let me know what Troy says”. The three of us sat in the examination room, unknowingly waiting for our lives to change forever. Troy came in listened to me explain what her symptoms were and told me we would have to check her blood sugar via a finger stick. My niece Brittany, who was an intricate part of our lives, had Type 1 Diabetes so we were all very familiar with “finger pokes”. Nikki protested but managed to make it through what would be the first of a million finger pokes.

Troy left the room and returned a few minutes later with tears in his eyes. He looked at me, put his hand on my shoulder and said the words I dreaded “Sheri her blood sugar is 545, Nikki has diabetes”.

There is no way to describe shock, so I won’t try. A million things went through my mind and then my mind went blank. I didn’t have time to indulge, I needed to fix this and I needed to know what the next step was. Troy said to me “get your running shoes on, I want you to go home, pack her a suitcase and head directly to Cincinnati Children’s Hospital”. I shook my head yes, gathered my precious girls and began this new journey.

The first stop on the journey was to call my husband. “Nikki has diabetes”. I don’t remember much more of the conversation except him turning the car around as we spoke saying that he was on his way home, he would come directly to the hospital; he was still about 4 hours away. In the meantime I have 2 very quiet, very young little girls trying to figure out what was happening. I tried my best to briefly explain what was happening and told Nikki that she was like Brittany, she had diabetes and now we were going to the hospital to get her medicine and learn all we can about how to take care of her. At that point, she simply didn’t understand. Like many children with diabetes, Brittany never really complained about her diabetes, so the girls really didn’t get how big this disease is. I called my mother to tell her that another one of her grandchildren had diabetes. She was very quiet and I really only remember telling her I would call her later once I knew more. She lives about 1-1/2 away from me. The next 5 days were a blur and full of more doctors, dieticians and diabetes social workers than I can remember. Instead I will touch on few events that are very clear to me during that time.

The first would be Nikki’s slow realization that her life now consisted of daily interactions with needles; I remember the way her cry sounded. I remember how helpless I suddenly realized I was and how useless to her I thought I was going to be. More on this later.

The second thing I remember is my mother walking into the emergency room. I didn’t know she was coming. As I said, we live an hour and a half away and by the time she was able to arrive it was dark and the hospital is located in a rather scary part of downtown Cincinnati. But there she was, as brokenhearted as I was.

The third thing I remember is my husband walking into the room and the overwhelming relief I felt that we were all together, the 4 of us. The following days consisted of IV’s, shots, learning to eat and when to eat, silent grief and Nikki’s anger. Nikki was mad at me, her mommy, because I was letting this happen and I wasn’t fixing it. I agreed with her. Finally, we were released to go home. Now the journey really begins. Diabetes affected not only Nikki, but our other child waiting at home. She was trying to figure out where she fit in the family dynamics now that this new, unwelcome ‘thing’ had arrived to plant itself firmly in the middle of our lives, forever.

To be continued…….

Celiac Disease

Sooooo....I mentioned in my last post that Nikki had a newly diagnosed condition related to T1. A couple of months ago she was diagnosed with Celiac Disease. She was seriously malnourished and felt like she was exhausted all the time. For those of you who may not know, Celiac is an allergy to wheat, oat, rye and barley. So now, she is faced with the fact that food is, once again, her enemy (so-to-speak).

Believe it or not, Nikki didn't bat an eye. When I asked her how she felt about this new diagnosis she said she was a little relieved to have an answer as to why she felt so bad all time and why her blood sugar levels were all over the place. She also said to me "mom, what good will it do me to get upset and feel sorry for myself? It won't make this go away any more than it will diabetes". Have I mentioned that I am my daughter's biggest fan? Since our household has gone gluten free, Nikki's energy levels have quadroupled. She no longer suffers from severe and constant, intense stomach pain, her skin color has returned to normal and her blood sugars have evened out.

Nikki is my 'artsy' daughter. She has a love of ballet, music, sketching and....COOKING. Now if that isn't a GOD thing I don't know what is. She has found that being gluten free has meant a whole new world of wonderful recipes and great tasting food and has actually enjoyed learning to cook all over again. But then, that's my Nikki Mouse for you. I must also add that big sister Amber has been her constant champion and won't eat anything that Nikki can't eat, because she doesn't want to make her little sister feel bad. Additionally, my nephew (we think of him as our son) was home for a visit over the holidays. He was at Meijer (great place for gluten free food) picking up some food for me and went out of his way to find the store manager and thank him for selling gluten free food "for my little sister".

GOD is good .... All the time.

All for now,