Hi everyone, I’ve been reading all these forums on this site and I feel very fortunate that this exists. I really need a good support network of people that understand the emotional roller-coaster of T1D and I hope I can make some good friends here. Here is my story in a nutshell:
About a month ago, I finally got the strength to officially separate from my husband. It took me YEARS to pull the strength to be a single mom to 2 kids. (I have another son that is 4). During this time of separation my career has really taken off and I have a big offer on the table to become the CEO of a multi-million dollar game studio. This is a deal I have been working for 5 months prior. You can imagine how hard I’ve worked and sacrificed to get to this position in a very male dominated industry. It’s definitely is/suppose to be the track that I thought might define my life work.
Then a week before my big meeting, I decided to go on vacation & get my kids checked up at the doctors. Long story short, a benign heart mur-mur snowballed into a 72 hour diagnosis of T1D!! She’s 6. Before I knew what was happening, I was thrown into Diabetes Type 1 education. I had no idea wtf was going on… what I thought was a doctors appt. turned into 3 days of intense Type 1 D school. (They were nothing short of amazing btw, so thankful for the team at Children’s Hospital). Like most people I didn’t know a thing about diabetes beyond “sugars” before the diagnosis. This came out of no where and for the first week I thought ok, we can do this! It will be ok…and it was. The T1D I can manage and it’s a change but I can do this.
Then more bad news…talk to doctors after further ultrasound for her protruded tummy and get the diagnosis back that her liver and kidneys are unusually large for her body and that she might have metabolic issues / possible tumor / rare disease etc. and T1D might be symptom of that (or vice versa). As calm as I remained at the hospital… I could feel strength seeping out of me. We are now in a waiting game for more dr.appts and anyone with a sick child knows how that can be.
Though I’m usually a very strong person, the reality has really set in over the last 2 days that this is NOT GOING AWAY and I think Im mentally falling apart inside. I go through waves of good/bad/good/bad and I’ve been coping in my own way and trying not to burden too many people with my story because I usually end up consoling them not to worry.
I know Im a mom first before anything but I can’t help feel completely overwhelmed and lost because this is so not how “life was suppose to be”! I have always been a very hands-on mom, but this is just scary because I have to be her pancreas too and I don’t see how I can do this without being completely consumed by this disease. She is so beautiful and innocent and loving and so intuitive to her surroundings. She sees me sad sometimes… and she reaches out and tells me I am the best mommy in the world and kisses and hugs me. How can I not just give her my all + more because she is the perfect reminder to just get out of my own head and deal with it… yet it’s easier said than done.
I always felt in control of everything, but now for the first time I actually feel I can’t do this alone :(. I had to obviously talked to her father during this (and we haven’t talked and he didn’t even bother calling the kids during the separation), and he’s been nothing short of an asshole to me this whole time even through this. He has no clue the management it takes to deal with T1D for our daughter and how much support I need so I can be strong for her. Especially with the further bad news… I REALLY needed him so I made a conscious decision to say just say Sorry. I tried so hard to be the bigger person to support him and to try to bridge our differences. I begged him to just stand with me through this and he pretty much told me the same old tune of 'deal with it myself and that I caused all my own pain because I left with the kids so I can live in Canada to be close to my family & friends & work on my career (he lives in Dubai). Not only is he’s not supporting me emotionally through this, he’s making my life a living hell by making me feel intense guilt for not bending to his wishes and making me into the scapegoat to why he’s not here for the kids. Even through all this, he feels validated that his work comes first before us which I would MAYBE understand if he financially supported us fully! But instead he punishes me for being financially capable on my own by making me feel horrible for any money he sends and attributes it to my ‘expensive’ lifestyle like it is my fault that the housing cost in Vancouver are my doing. We’ve gotten to the point during our separation where I just didn’t want to be bothered and rather just cut all ties including financially. In my eyes, I have done more than my share for this family and he’s just so unappreciative because he doesn’t get what HE want. I suggested couples therapy and he then became the guy that said ‘You go to therapy, your the one that needs to be fixed.’ Great… so actually I went to therapy alone for a year and I actually fixed myself so much that I got my life coaching certificate and the insight to leave him.
Anyhow, I have put my 99% of my life on hold to figure out my next steps here and to make sure my daughter has the support she needs. She’s taking this like a champ even though this indeed sucks for her to keep being poked constantly. I feel really lost… alone… and I need some light. I try not to worry… but not going to lie, it’s not easy and every night I cry and I feel no one hears me… and in a way I don’t want them to especially those close to me. My mother, who also helps me with the kids, makes me feel so ashamed that I have a sick daughter and if I show weakness, she has to comment negatively. I do feel my brother/friends are supportive, but I really don’t know how they can help me as it’s such a hands-on disease. Maybe I just need to accept maybe that this is just my new life now. (I read from another mom that it’s like having a new-born again, so that insight was great)
It’s taken me 3 days to write this, so sorry if it’s kinda all over the map. Any advice about moving forward would be nice.