I don\'t know what just happened to my life! Help me

Parents
#1

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. :frowning: 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.

#2

I’m not a parent but I saw this and had to chip in :slight_smile:

My mom was a single parent of 2 when I was diagnosed at 6 (my brother was 11) and my dad was the same, completely uninvolved and unsupportive. He lived on the mainland and we lived on the island, so he had to take a ferry to come see us, what a hardship for him! He came for one quick visit while I was in the hospital for 2 weeks after being diganosed and never came back for the training my mom set-up so he could have me on weekends, etc. Needless to say, I only went to his house once in the mainland for a few hours (while mom was visiting a dying friend and there was no one else on the mainland to watch us) and my 12year old brother was the one giving me shots, testing my bloodsugar, etc.

It’s going to be hard but what I can say from having watched my mom over the years it would be harder to have someone whose unsupportative and only thinks of themselves around. You need to take care of yourself and your kids, you don’t need to be worrying about whether he knows how to take care of her if she has a low, if she needs insulin, etc if you aren’t around.

And things will get better, right now you’re learning about everything and it’s overwhelming which is more than understandable. You’ll find out quick who is supportive and those are the people you need to surround yourself with more than ever now. Not everyone will totally understand what you’re going through, but the fact they are there and willing to listen, etc is what’s important.

And don’t let anyone make YOU feel bad for your daughter’s illness, especially your own mother. It’s not your fault, it’s not your daughter’s fault, it’s no one’s fault.

This experience will only show you how strong you are and how strong your kids are/will be. You might not feel that way right now but you are strong. :slight_smile:

#3

First, I am sorry to hear about all of your troubles with your family and your daughter being sick. Hopefully everything turns out okay for her.

I will start by saying that I’m not a parent–I’m a 30 year old who’s had T1D for 29 years. I do not know how to care for someone else, but I do know what it’s like to be a young kid with T1. So, I will say this much–let your daughter help you as much as she is able to. I know she is young and you may have to keep checking on her, but teach her as early as possible to check her own blood sugar, give her own injections, and draw up her own insulin. (I know I was able to do these basics by the time I was 7 personally, but do what’s best for your daughter). I see many parents posting that they do everything D-wise for their kids because they feel the kids will have to do for the rest of their lives and want to hold that burden for them as long as possible. In my opinion, make her independent as early as possible and not depend on you for the basics. Maybe that will help you feel less overwhelmed. As time goes by, you can also help her to understand how to treat the numbers on the meter (what to eat when she is low, how much insulin to take if she is too high, how to count carbs for herself, etc.)

Also, do your parents or other babysitters understand how to care for her? It may help if you can get a break overnight or for a weekend. Just an idea.

#4

Thank you girls for reading and giving such great advice to my perhaps overly emotional and dramatic snapshot of my situation. You both are absolutely right and the more I meet people with T1D, the more in awe I am about everyone’s strength in this. Today was a much better day than the others as my daughter’s blood sugars were perfect the whole day for the first time in a month! I have been thinking deeply about mindset and how I have to really grow up and stop being so selfish when it comes to my kids because a career means nothing without them. The timing isn’t so great, but sigh… c’est la vie?

Natrie, Im so sorry to hear about your mom’s struggles as well and she obviously did a great job raising you. How old were you guys when you started to manage your own diabetes? Is there any advice you can give to better parent T1D? Did your mom ever date someone new and were they helpful with your diabetes management or was that just way too intrusive for you?

#5

One other tip I just thought of–look into a local diabetes camp in your area. I went every summer for 13 years (one week each summer) and it was some of the best times of my childhood! It gives the kids a chance to meet other T1D kids and it’s a big educational experience while having fun. I first went when I was 7 and that’s where I learned to draw up my own syringes (prior to that I was giving my own injections but my parents had to prepare the syringes for me). Camp was also the first place I saw a pump and was even allowed to wear one for a few days to try it out (No insulin in it–just saline for the trial). The med staff helps to educate the kids on how to calculate insulin doses too. I make is sound all educational and technical, but all of this occurs while doing “normal” summer camp activities–cannoeing, swimming, games, etc. The ADA runs camps all over the country, but there may be more in your area if you search online. Plus, you can meet other parents in the area.

#6

JDRF also offers a mentorship program where you’d get matched up to a family who has a child with Diabetes. My mom went through that program when I was diagnosed and that helped her to have another parent to talk to, someone she knew she could trust to babysit me, etc. I also made a lifelong friend with the daughter, who went to my elementary school and is only a year or so older than me. :slight_smile: It will be good for your daughter to see she’s not alone in this either and there are other kids like her :slight_smile:

I never went to camp (I was too shy) but I’ve heard it’s a great option as well. I might wait until next summer though, as it might be a bit much to be thrown into all at once :slight_smile:

#7

Hi Astrogurl, my 15 year old daughter was diagnosed 5 weeks ago. I have been a single mom since she was 2. I am self- employed in a business that allows me to be a stay at home mom. I bought a home all by myself. I work an insane amount of hours per week, but we are making it. Her father pays very little child support and does not participate in her life, though they do text every day and she knows that he loves her. When we were in the hospital with her new diagnosis, he came by for about an hour to visit her, on his way to a wedding. That was it. I know that taking care of her is on my shoulders completely. She learned to do everything herself and I am so proud of her. The girl that almost fainted getting a flu shot is doing her own injections and calculating her carb to insulin ratio by herself with me as back up. Since she is in the honeymoon period, there are many lows and she cannot really be left alone. We just have to adjust our lives and go on. In today’s world, there are so many opportunities for one to be an entrepreneur. Perhaps leaving the corporate world behind would not be such a bad thing. I treasure the time that I was able to spend with my daughter working at home. She has always been a part of my business, going to meetings with clients, whatever. We are closer because of it. Regarding her father, I expect nothing from him. That way, I am never disappointed. I am bummed that my daughter has T1D, I wish that it was me instead. It is a huge thing that has changed our lives, but we are adjusting and moving forward. She will return to high school in three weeks, a new diabetic and I will be there to help her though it. Life is about family. Jobs come and go. Your kids are all that really matters. When our time is up in this world, there is only one thing that we get to take with us: Love. Nothing else matters, not money, jobs or how hard we worked. Just let your disappointment with you husband and everything go, and carry on. That’s what we are doing. So far, so good.