I have to say that I always am thinking about my 3 (non-diabetic) children. They make me stop and realize how strong they are on a daily basis. It is hard being a diabetic, it is hard being a parent to a type 1 diabetic, and I can only imagine how hard it is to be a sibling to a type 1 diabetic. They are strong spirits for sure.
What made me think to write on this subject was last night. When I put the children to bed last night, they were all in their own beds. Kinz (T1D, 11), Jared (non-D, 9), Chloe (non-D, 2), and Mason (non-D, 3 months). They were snuggled in their own beds, in their own rooms…off to dreamland. I got up to check sis (Kinz) at 12, all is well. Everyone in their own bed. She was 80 (wayyyyy toooooo lowwww for night time…so we stay up for a quick correction). Go back down at 1230…all is well. Check at 3, all is well with everyone, BG in great range. One. Happy. Momma. Up at 4 from pump alarming (no worries…just pump letting me know the battery is about to crap out!) so we fix that. A pretty calm night. We like calm nights. The I go to wake the older kids up for school at 6. And what do you know, Jared is at the foot of Kinzie’s bed…sleeping away. Taking watch. Her pump alarming woke him up and after she went back to bed he felt he needed to be with his sister and watch over.
Warms my heart knowing that my son is so aware, that he is so loving, caring and that he takes his job as brother serious. He adores his big sister. He hurts when she hurts. It also saddens me at the same time that it has to be that way. What a huge responsibility. I have told him over and over that I can do it, he doesn’t need to worry; but he does and continues to be ever so vigilant…his sisters keeper. He has never been asked to do what he does…he just does it. Day one home from the hospital he decided that was his role, how he will cope and where he is needed. That boy was only 8 years old, how in tune. I stand in awe of his perseverance, he changes the way I think and act. What a blessing he is. How I got so lucky to be blessed with such great kids, I will never know. They are amazing people.
He is quick to defend and protect. His small actions make such a huge imprint on our hearts. If someone see Kinzie’s pump infusion set and cord on her arm and stare…he jumps to the rescue afraid their stares and actions will hurt his sister. If another child asks why Kinzie is doing what she is doing he steps up and tells them why, and how she has to do what she does because she is a type 1. He knows more about type 1 than most people do, ever. If someone makes a rude comment or jesture…it lights a fury in him (and this being my gentle hearted child, never aggressive). He doesn’t tolerate ignorance, he promotes education and is already being an advocate for his big sister. He does an amazing job. He is an amazing boy.
Chloe, being all of 2, is such a sponge. She loves her big sister and adores everything she does. Chloe gets Kinzie’s disease….and she is just two. She knows what the pump is, the glucometer, blood sugar, carbs, etc. Her vocabulary concerning type 1 just shocks me. She is a brave little girl. When we do set changes for the pump, Chloe has to be involved. When we are counting carbs, cooking, checking blood glucose…Chloe has to be involved. As she watches me change an infusion set, she always responds with “Oh poor Sis-sis. Her medicine will help.” and offers a quick kiss to help Kinzie. She gets at just age two, that sometimes momma has to put her entire attention on Kinzie. Chloe is demanding…but knows when it comes to Sis-sis, if mom is treating her, checking her, or doing what needs to be done, it is necessary and doesn’t demand attention, doesn’t seek attention. She gets it, she is so precious.
Our baby, I am sure has no clue why we do what we do yet. He came into our family like it is now, after we had to redefine everything…this will be all that he ever knows. His attitude is so perfect, I know he came into our family prepared. Knowing our family needs, worries and fears. He is such an awesome blessing. I feel sad that I cannot alway give him my entire attention. I feel sad that he and Chloe sometimes are not center of attention, or that they can tell when mom is upset or Kinzie is worried. I feel sad that at such tender ages, it affects them too. And I feel sad that Kinzie feels like it is her fault at times. No. It isn’t…it is Diabetes fault.
I recognize the sacrifices all my kids have to make, how much they have to grow up and how much they take on every day. Their dedication to Kinzie is so amazing. They are patient, understanding, loving and amazing. Now, I am not saying that they are always like this, but when it comes to Kinz, when it comes to type 1…they get it. They step up to the plate and do what it takes. They are soldiers. When Kinz was in the hospital…I made the decision this was our disease; but I never had to tell them that. I never had to explain. They just knew. They know the needs and they sacrifice.
Being a sibling brings so much responsibility into their lives, compassion, and understanding. And it breaks my heart that they and Kinzie all have to go through this. If only I could solve it all…because that is what we moms do…we fix things. We solve problems, we brainstorm for solutions. Sadly, there isn’t a solution for this. There isn’t a ‘fix-it and forget it’ technique. What I can do is trying to always have in the back of my mind that they are affected too. That they carry the burden too, and that they have to sacrifice so much too. They matter too. I try to make each moment count (and that is hard…I fail often). I try to recognize what they do and let them know I see it and appreciate it and that I think they are special, amazing, intelligent children…such a gift. Because of them I am stronger, because of them I have so much more love, because of them I try harder, because of them I keep an opened mind. Because of them, I continue to fight. I will not stop. Until there is a cure, I will dedicate my life to this disease. Until I take my last breath I will fight for my family.
I also think about what the people around us go through. They know when I worry, they know when she is sick, they know. They know, and refuse to forget. Type 1 hasn’t just affected me. It has affected our entire circle of support. My parents can’t just grab her and go like they use to. We can’t just have eat outs when ever, it has to be planned. My nephews can’t just ask to play in the evening because we are eating dinner, correcting a low/high (and after that I have to shift my focus to homework), our every minute is filled with preoccupation. Her aunt and uncles share my fears and worry like it is their own. They live it with us because they are affected by it. They see it. Her teachers and school have to share my responsibility when she is with them, there isn’t a choice. Kinzie’s best friends carries guilt that Kinzie has diabetes, that Kinzie goes through this (survivors guilt). She calls and checks on Kinzie when she is absent, when we have a doctor appointment, when Kinzie has to go home early from school. What happens to Kinzie rearranges everyone’s life in our circle of support. They, too, carry this with them.
My nephew (12) recently said that if it weren’t for Kinzie, he wouldn’t really care about diabetes because he wouldn’t ever really know about it…it wouldn’t affect him. He said because he loves Kinzie and worries about her and sees her struggles, diabetes has become important to him. He wants to learn more, and does. Because of Kinzie getting diagnosed, it opened an information highway for a young man…because of this he chooses to learn more and do more. His little brother wants to be a scientist when he grows up…he wants to find a cure for diabetes. He wants to help Kinzie. Because of type 1, these young boys think about things bigger than them. Because what they have experienced it has changed the way they think. They have been exposed to so much more than many kids their age do.
Chronic illnesses leave a huge impact on everyone that comes in contact. You can’t know and not care. You cannot witness and not hurt. You cannot walk next to it and not want to carry it. Chronic illnesses change the way you approach life, whether you have the chronic illness, know someone who does, or have seen it from a distance. It is the nature of the disease. Because of type 1 intruding on my family we are forever changed. Good and bad. It brings a new light into our life. We simply cannot ignore it. The circle of support around us knowing isn’t enough. The world needs to know, the world needs to see the complete picture. Invisible disease are met with such ignorance and cold hearts. I urge everyone to educate yourself and those around you. Just because Kinzie doesn’t look sick doesn’t mean she isn’t…diabetes is very much raging war inside her little body. Be aware that EVERYONE around Kinzie (and those with chronic illnesses) are affected, it changes them too. They all share the burdens, struggles, fear, trials and triumphs.