Everyone has "something"

Jan 7, 2006 my daughter Sophia was born. Perfect in my eyes. A girl came to my room and asked if I wanted my new baby to participate in a study (TEDDY) to see if she carried the gene for Type 1 diabetes. I consented and then never thought about it again until I got the results that were negative. Just what I thought it would be.

4 1/2 yrs later after our usual summer vacation Sophia started drinking and peeing excessively. Being an RN I knew immediately what was wrong. At first I tried to rationalize that it was summer so of course she was going to drink more thus pee more. I quickly made an appointment with her pediatrician and the day we went my husband said “don’t worry about it. you don’t know what is wrong.” I just shook my head “no” and cried. Although I knew what the pediatrician was going to tell me, it was devastating to here it come out of her mouth “Sophia has type 1 diabetes and must go to the Barbara Davis Center immediately”. I cried and cried. Sophia said “it’s okay mommy, I feel fine”. Now when we go to her pediatrician’s office she says “this is where they told me I had diabetes and you cried” :frowning:

We immediately went to BDC and it was all a whirlwind and Sophia could not understand why she had to have a shot vs a medication she could take in her mouth. Sophia’s blood sugar was brought under control in one dose of fast acting insulin and a dose of long acting so they sent us home and told us to come back on Monday morning. Myself, husband, and 3yr old son were tested that day for the autoantibodies and I was negative, my husband has two, and my son has one. It was a very difficult few weeks w/ Sophia trying to get used to shots and begging the parent who was not giving the shot to save her from the other :frowning: Eventually it started to get better. Sophia would say “I wish my name wasn’t Sophia so I wouldn’t have diabetes” and “when will I get better”. My approach was to be completely honest with her about her disease and the fact that she will always have diabetes and if she does not take insulin she will die.

She is now 5 and can tell you what a normal pancreas does and what insulin does in a normal person vs what her pancreas does and why she must take insulin from a shot. It has seemed to make it easier on her in some weird way that she doesn’t have to wonder when it will end. It’s just how her life will be. She will still say “I wish I didn’t have diabetes” and I say “I wish you didn’t have it too. Everyone who has diabetes wishes they didn’t have it and everyone who loves someone with diabetes wishes they didn’t have it”. One time she was wishing this wish and I said “you know, there is nothing we can do to change you having diabetes so we have two choices to make. We can be sad and stay in our room and cry all the time or we can be strong and learn to take care of your diabetes, be happy, and have lots of fun”. She chose the latter. Such a smart AND strong little girl :slight_smile: She often questions “what is wrong with that person” when we see someone out in the community with a disability or an advertisement/poster of someone with an illness and I tell her “that person has…see, everyone has something. You have diabetes. Not all of us know what we have yet but we all have something” and she is beginning to develop the sense that we are all the same and we all have "something’.

In less than three months of diagnosis we celebrated Christmas, Sophia started the Omnipod pump, and had her tonsils and adenoids removed all in the same week!! And what an experience that was. Being a newly diagnosed type 1 and new on the pump her doctor’s wanted her to spend the night at the hospital. Not sure why because we managed everything ourselves. The staff kept trying to give Sophia regular Sprite slushies and we had to consistently remind them that she was diabetic. When we first arrived to the floor and I requested a Sprite Zero the nurse said “why” and I told her and she said “we don’t have that here. didn’t you bring your own?”. Gee, I didn’t know that The Children’s Hospital of Denver would not be equipped to care for a diabetic child and I had to pack our own food for our stay there. My husband called down to the cafeteria and they sent some up…

Two weeks later we celebrated her 5th birthday with a bounce house party. Things are starting to settle down a little now and today she is at her first overnight at her Uncle Rob and Uncle Shad’s house. She seems to not dwell so much on this disease but knows the routine, what she has to do to stay healthy, is eager to show others/strangers how she checks her blood sugar and where her pump is, and it’s just a way of life now. I still have days when I secretly cry for her, me, and my husband and son who may develop diabetes but she is a strong little ray of sunshine and I love her :slight_smile:

Sophia is very fortunate to have a mom who’s straight with her & has instilled a can-do philosophy. Wish we all had received the “either sit in your room & cry, or be strong, live life & have fun” talk. You’re wonderful!

Hugs to your sunshine.

What a sweet story about a sweet girl with a fabulous family!!!

Sophia is a strong little young lady who is developing tremendous capability. Good job MOM!!!

Very sad when children develop any chronic illness, so unfair. These kids are strong and remarkably resilient; we could learn a few lessons from them. Sophie is adjusting remarkably well and I know it takes great effort to get through the first few years arter diagnosis. Things will get easier with time. I would not worry too much about you, your husband and other son getting Type 1. It is possible for a family to have more than one chlld diagnosed, but it is relatively rare. You are doing a great job with your little one.

Your blog and the strenth of that little girl just made my day! I took Type 1 at 10 (not near as young as her) When I had my 1st daughter 15 years later I prayed so hard for both her and her sister to be “normal” well 11 years later my oldest took Type 1 at 11 and yes I done the same as you and tried to blame it on the season didn’t work. The 1st thing I told the dr in the Er was to check her bs. Yep hit it right off the bat she was 345 I think. She was hospitalized and was put on insulin shots (pen at that time) God how I cried about passing this on to another generation now she’s a pumper who has given me 3 g-kids. She does well now. That sweet child will surprise you at the fight she has in her! It’s a way of life for her now and to her (like it is to me and my daughter) you just do the routine. I took Type 1 in 73 b/f there were bs machines out there. My daughter took it 26 years later when bs machines were out there and there was more of an understanding about Type 1. Sinceshe had watched her mom do this for years she knew how to do it. She looked at me one day about 2 years ago after I had told her how much I blamed myself for her getting Diabetes and told me “momma it wasn’t your falt I got diabetes” music to this mom’s ears. She’s now a CNA at a nursing home mom of 3 kids oh and did I mention she was born missing her left hand? She was. She does this mom proud just like Sophie will do for you!

Your Sophia will be full of empathy and compassions for others. You can be proud of your little girl!

She is a ray of sunshine for all of us. With her spirit she will do fine throughout life. You are lucky parents to have her.

“Everyone has something” is also a phrase repeated very often in our house right along with “Diabetes is a challenge, not an excuse.”

She sure is a doll, I can picture her being so stronge:) what a exam[le to her Dad who thought nothing was to worry about. And who may get Diabetes some day. I hope and pray neither your husband or son do get it. I pray your little precious daughter stays strong to get through her teen yrs. She sure has good support and I am sure she will be fine, always:) and it is true there is NO perfect person, either already stricken with something, or in the waiting. Life can be a challenge, we all choose how to deal with it:)
I have had it so long, some times when people say they hate it, or are giving up, I think your daughter can be a example to them:) Bless her little life with Happiness:) Debbie

Eric was only 18 months when he was diagnosed, so he doesn’t remember any of it. But his big brother (who was going on 4 at the time) sure does.

Thank you for sharing this. “Everyone has something” is now a centering mantra for me in times I feel overwhelmed by my diabetes. I’ll remember courageous Sophia every time I rely upon the phrase.

I really enjoyed your testimony. I don’t feel so alone.
Very touching. Thanks!