Today I have asked for my wife's views on living with 2 T1D's. Her perspective from living just with me compared to now that she has a daughter with it and the responsibility to keep her alive is ours.
I knew Gareth for years before we got together. I at first did not even know he has T1d. It was only when on one night I was babysitting Ella and Lucy (his daughters from a previous marriage) when I noticed these strange vial things in his fridge. On closer inspection I found that they were insulin and that the strange thing he wore on his pants was in fact not a pager after all! My first experience with his T1d was a few weeks after we got together. He always managed his diabetes on his own, never really discussed it, he just did it. But on this one occasion, gareth got gastro. He turned not only into the exorcist but a zombie. He was passing out and in between consciousness, he told me he needed sugar and quick! I remember running down the stairs and grabbing cordial as I knew he couldn't stomach anything solid so I would give this a go. It went down and it came straight back up. I was terrified and even though he mumbled he didn't want to go to hospital, I managed to limp him to the car and to emergency. Which luckily, was a 2 minute drive away. I knew nothing of the glucagon injection, nothing. It was frightening and luckily never happened again. Gareth continued to look after his diabetes himself and was always well controlled so very rarely ever needed my help except for grabbing the jelly beans every now and then or by me telling him his breath smelt sweet, could he be high?
When I fell pregnant with Shiloh I think I may have thought about her getting T1d once, maybe twice. Gareth was the only one in his family with it, and Ella and Lucy didn't have it so why would my baby get it, right?
Shiloh came into the world in a less than glamouros way. She was stuck, and even though she was only 2cm away, cutting, forceps and vacuum failed. So she was born by emergency c-section after both our hearts were not beating correctly. She was a happy baby but earned her frequent flyer points at the doctors. She first got severe jaundice. The doctors said this was from the trauma to her head at birth (forceps and vacuum). She then got a very rare eye infection which took a lot to treat and was again caused by birth. At 3 weeks old I noticed her stools resembled that of a lactose intolerant. I worked in child care for many years so knew what it looked like. The doctors kept brushing it off. Kept saying it was colic. But her pain got worse. From birth she very rarely slept. As a newborn she would sleep 20 minutes and sometimes that was for the whole day. At night she would wake every half hour. Shiloh also got terrible eczema. I put her on soy formula and the pains stopped. Finally the doctors agreed that she was lactose intollerant. However the sleeping pattern continued, the eczema slowly improved. Shiloh also suffered a lot from colds, ear infections. So much that this helped us to decide to move to sunny Queensland. Where in fact her health improved until she was 2 and a half years old.
At the end of August 2013, I noticed that shiloh's eyes were more darker than usual (she always was a little darker under the eyes) she was grizzly, hard to reason with and her appetite which usually resembled that of a sparrow, increased dramatically. So did all the cups of water she was scoffing. I mentioned this to family and friends, as by now T1d was slightly in the back of my mind. They all said she was probably growing which I agreed once I had spoken to gareth and he thought the same thing. I now know he did not want to believe it was T1d and found it easier to pretend it was something different. However, on September 4th we went out shopping and to lunch with my sister in law who had just flown in from Melbourne. Shiloh was sweaty and demanding more and more drinks of water. I mentioned t1d to gareth at lunch. Who agreed to test her once we got home. By then the wet nappies had started. Every 10 minutes we were going through a saturated nappy!! I held her while he tested her. And we got the answer we were dreading, "HI".
The look on Gareth's face said it all. He rushed to wash her hands and re test while I sat staring at the floor. All I could think was "no it can't be, she must have sugar on her fingers" but the re test was again read, "HI".
We rushed to our GP, just in case our tester was broken. Please god let the tester be broken. The doctor looked at us and she said "rush her straight to emergency, I think you are right. I think she is type 1". We cried all the way to the royal children's. I sat in the back with my little girl. Holding her hand, kissing her, telling her she would be ok. It would all be ok. And all she did was wipe my tears away and tell me not to cry. My heart was beyond broken. Here was my little girl, sick, exhausted, feeling so poorly but all she cared about was me and her daddy crying. And I swore right then, that I would fight this disease with my last breath. I stopped crying, I would not let it break me today or any other day! We walked into the hospital while we all held her down so they could take blood and put a drip in. She was so upset she slapped my face and I wanted to break down, I wanted to scream and cry, but I didn't. I had to stay strong in front of her and I did. I was her warrior now. She had to see my brave face. The doctors confirmed what we had already accepted. Our beautiful baby had T1d. An autoimmune disease that she would have forever unless a cure was found. I remember smiling and telling her she was just like daddy and then I would go to the toilets and sit on the floor, rocking and crying.
The injections were the hardest. We had an amazing diabetic educator, Karen shann, who to this day remains our saving grace. But the injections for a fussy eating toddler were crazy. She would get hungry but could not eat anything else as she had already eaten her max carb ratio until the next injection. She would want a bottle of milk before bed but the nurses would say no. Shiloh always had milk to go to sleep!!! This created so much more stress and on the 2 nd day of diagnosis, Karen worked with the wonderful people at Medtronic and Shiloh got an insulin pump! God bless the pump!! Shiloh took to the pump like a pro. She matched her daddy and she was happy.
I noticed too that as soon as Shiloh had insulin, she instantly looked better than she did in a long time. She also slept all night!!!! Which she never ever did before diagnosis. She was also not as angry as she used to be and so much happier in herself. We have often discussed with our diabetic team that perhaps, Shiloh was pre diabetic. And I believe this to be the case. What other kid would fail sleep school?
Shiloh has excepted T1d better than all of us, including the doctors, could ever have imagined.
But have I?
Well.......... I soldiered on. At first I tested her 15-20 times a day. I panicked at every moment. It was mummy against this T1d during the day by herself while daddy works. I had, and still do, have so much to learn. It's never ending learning with T1d. But i learnt to ease up. and I stay strong, but there are those days. Those days Shiloh gets too high and I blame myself for not bolusing enough. For giving her that treat. It's my fault. MY FAULT.
It's my fault Shiloh went to low. I over corrected. God I could have killed her!
Its my fault she cries at set chances. It should have been me! give this disease to me, not my little baby!!!! I understood for the first time, what Gareth was dealing with. somedays my mind just cant take anymore information or frustration and i just snap!!
Most nights I admit, I wake in the early hours and as Shiloh has slept with us since diagnosis (a mummy coping mechanism) I rest with my hand on her belly to make sure she is breathing. I then watch for Gareth's breath for now I have the understanding I also have the fear of what can happen to him as well.
Sometimes I cry. I cry alot. For all the difficulties my little girl is going to have to face with T1d.
Kindergarten, school, sports, illnesses, health problems etc. and what will happen when it's no longer up to mummy and daddy to keep her alive? When she is responsible for it herself? Will she rebel against it? Oh god, the thought of this brings many tears now. And as I write this, in the bath on this cold Sunday evening I can hear her begging and crying to her dad for no 1,2,3 (this is what she calls set changes). And my heart cries for our beautiful, strong, baby girl.
But then I think, that's just it!! Shiloh is strong!!! She is healthy besides her pancreas. My little girl is a force to be reckond with. And she learnt from us. Her warriors! We will fight T1d until our last breaths. Together we will not let this beat us!!!
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