our story (kind of long) - Mothering Forums

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#1 of 9 Old 12-16-2006, 02:25 AM - Thread Starter
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My husband has had Type 1 Diabetes since he was 14 (he's 30 now.) He's never had a very good attitude about it. He does not go to the doctor. He does exercise, he is very active and has a physically demanding job. He eats healthy. He hates doctors ... (I am not so fond of them myself) ... he is on a two shot a day program. Shows how long it's been since he seen an endo. He tests his sugar ... NEVER. I think it has been at least 6 or 7 YEARS since he has tested his sugar. He did go ONE time to the doctor for something else and the doctor did some tests while he had him there, and they all came back with good results (he says). He is a wonderful man in so many ways. His diabetes has always been a very sensitive issue for him. I have always been concerned for him and in the early years of our marriage encouraged ... nagged ... fought for him to take a more active role in managing his diabetes. It took a while but I learned that I couldn't force him, and as much as I wanted him to, he didn't.

Fast forward a few years and except for the every so often trip to the pharmacy for his insulin and a VERY infrequent "hon, I need some sugar" it just kind of faded into the background, and after a while I let it.

Fast forward a few more years and our denial was forever shattered.

Our beautiful firstborn son was diagnosed with this wretched and horrible disease. I was hit full force with all its horrors as I endured the heartbreak of his diagnosis. I have never faced anything like this before, and I have had a very hard life. My life has been forever changed and the resentments I had built up against my husband are being chipped away now that I have glimpsed the inner world he is trying so desperately to run away from. The view is so different from the inside out. I see now that some of the things I said to him were not helpful and caused him pain, because I didn't know better. Things that well meaning individuals say to me now, that make me hurt inside even though they are trying to make me feel better.

I feel as though I can hardly stand up. The weight of this is just too heavy and I cry everyday. But somehow I am ... one foot in front of the other. I have three other children and one of them is an infant, I don't have time to fall apart, although that is what I really want to do. I am so overwhelmed with all the emotions. Fear, anger, sadness like a pendulum. I feel broken and vulnerable. And I live in constant fear that my other children will get it. I have a phobia of needles and this really wigs me out. I even have an irrational fear that I will get it.

My husband is so far holding on, but he is strung tight. There has been a few times that he has been able to open up a little, and it was incredibly beneficial, but most of the time he's got that *deer stuck in the headlights* look. He's been drinking here and there (me too), a sure sign that he's stressed, but more than anything he looks scared. He feels like it is his fault. He is afraid that as Todd gets older and understands the greater implications of the disease, that our son will blame him and hate him. It is hard because when I cry he blames himself too even though we have had many conversations about this, he can't seem to shake this assumption of responsibility.

Our son Todd is 8. He is taking this really hard. He has been changed. His carefree innocence is gone. He gets so tired of it and grows weary. The needles and all the blood sticks are really taking their toll on him, and once he said he wishes he didn't have to live. I understand how he feels.:But he has his good days too and he says he still wants to play football for Notre Dame. I know this could be easier if his father could lead him through this better, but he is so lost himself. It has made things harder for me because I am the one that has to have him test and take his insulin. He doesn't understand why he has to test and daddy doesn't and why he has to take more shots.This has been so hard for him. He really had been so cushioned from lifes hardships, he really didn't see this coming ... none of us did. (Although I did have a premonition a year ago that I promptly forgot about and only remembered in hindsight.)

I am grateful for my other children. They are very young and like children very happy and carefree ... they help us be happy and laugh during a time we so desperately need their lightheartedness.
Wow, this is long ... if you have read this far, thanks for listening.
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#2 of 9 Old 12-16-2006, 02:03 PM
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I am sorry you are all having such a hard time.

I wish I had words of wisdom.

I totally understand the feelings of guilt and worry. It is hard. :
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#3 of 9 Old 12-16-2006, 03:58 PM
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I see from your other post re: your son's dx that all this is SO recent. The feelings you are having now are real and valid, but try to remember they are mainly an initial response to grief, fear, shock, and all the immediate stuff. As other posters have said, it WILL be possible to fit diabetes into your lives. I think that will happen sooner and more easily with support. Is there a parent's group in your area? Maybe sponsored by a local hospital? And also a group for the kids? Not to overstep the limits of politeness, but the air of desperation in your post scares me. Your son must be picking up on that, and is learning to see Diabetes as hugely devastating, rather than just one facet of life that has changed.

I agree with you that Dad would be the ideal guide for your son in his journey through this disease. Perhaps this will be the wake up call your Dh needs - to face his own condition as he supports his son. That may take some time, and perhaps he needs a support system to manage that.

Please look for local help in dealing with this. If there are no group supports available, I would even recommend individual and family therapy. For each of you in your own ways, this is a life-changing experience. But you may need some help at first to see how to make it as positive as possible.

I wish you and your family all the best

Rhu - mother,grandmother,daughter,sister,friend-foster,adoptive,and biological;not necessarily in that order. Some of it's magic, some of it's tragic, but I had a good life all the way (Jimmy Buffet)

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#4 of 9 Old 12-16-2006, 04:15 PM
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Are there other children with diabetes that your son could meet to see that this is not a diagnosis that means he needs to give up his dreams? It might be helpful for you as well, since your experience thus far of diabetes is with a dh who does not acknowledge or properly care for his condition. I know there are camp-type things for kids to go to, one in particular I know of is open to the whole family.

A diagnosis that means lifelong maintenance and attention can be so very frightening, and I understand the panic you feel. My dd has a transplant, so we (and she, as she gets older) need to always be aware of her meds, her physical needs, etc. But even at five years old, she has already benefitted greatly from meeting other kids who have transplants and take the same meds.
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#5 of 9 Old 12-17-2006, 03:09 AM - Thread Starter
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Thank you all for your warm and encouraging responses. They REALLY REALLY helped.

Today has been better, I feel stronger and more capable. Yesterday was just a really hard day. I think I needed to bottom out. Hubby is still not doing too well I'm afraid. I think maybe he will do better if he sees me doing better, so I am trying really hard to have a good attitude about this. I know from experience how God uses our trials to mold us and make us more beautiful. I just wish he knew that too.

I am Catholic and I have been very drawn to the Blessed Mother. I know that I have a unique opportunity to see through new eyes how intensely she must have suffered at the foot of the cross, and I pray for that same grace. I want to be like her, a source of strength and consolation to my son in his time of need. Can I say that here?

I find this especially difficult because of my past history of child SA. Although I have come a long way on my healing journey, this experience has been very triggering for me in more ways than one. A sense of being violated, my emotional safety feels compromised. And it is difficult for me to insist (even though I do) that he tests and takes his insulin even when he doesn't want to. The whole force thing. I take the time, no matter how long it takes, to get him to consent and agree to do it. It is emotionally exhausting and time consuming. But little by little it is getting better.

I am planning to send him to camp this summer. He seems very excited about the idea and so am I.

We went to the support group at our local hospital, but it is difficult because I distrust the diabetes educator that runs it (long story.) But I can ignore her, my son seemed to like it and said he wants to go back. So we will.

Thank you all so much for your much needed support and compassion.

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#6 of 9 Old 12-17-2006, 03:46 AM
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Just sending hugs your way.

My dd has inherited her issues (we are pretty sure) from my dh and his side of the family. No official dx of them because it was in India in the 70's. But all the same symptoms and behaviors. My dh has been the most emotionally uninvolved person when it comes to being educated and proactive about managing dd's health issues. It has been very hard to shoulder the whole burden and to try to smile and be strong for both my children and make life as normal as possible for them. So I can relate a lot to your feelings about your dh.

It's so hard as a parent to have a child who has health issues and not be able to make them all better. My child is just starting to realize she's different, and it makes me sad. I have had to sometimes be the mean mommy to make sure her health needs are taken care of, and it hurt my bond with her in the beginning. I try very hard to have areas in our life together that are far removed from the health issues. They are the safe areas where we are allowed to relax and just play together and have fun.

7yo: "Mom,I know which man is on a quarter and which on is on a nickel. They both have ponytails, but one man has a collar and the other man is naked. The naked man was our first president."
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#7 of 9 Old 12-18-2006, 12:25 AM
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I just wanted to add that my dad has Type I diabetes and was dxed when he was 15...he has had some bumps along the way, but today he is a very healthy 67-year-old who has never let diabetes stop him from doing anything he wanted to do. He's a really accomplished guy and now, a proud grandpa. It's a terrible disease, to be sure, but it's also one he can live with, and all the technology today makes it MUCH easier to live with (and live long!) than in years past.
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#8 of 9 Old 12-18-2006, 04:47 PM
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I don't have any advice...I just wanted you to know I read this and I'm sorry. Also, though our issues are very different (autism spectrum) some of what you express I remember feeling when we first got our diagnosis. Your emotions are so raw right now. I really belive this will always be a big part of your and his life but it won't feel as all-enveloping as it does now. You will notice and enjoy things again. It takes time. Also, as a teacher I know that when kids get the pumps (if your son would be a candidate for that) life gets much, much easier (and healthier). He'll adjust too. And I don't think he'll resent the inheritance. We all inherit things--rotten and great--and yet we love our parents! (I got some doozy's and Andrew's issues were certainly genetic too and I bet your hubby doesn't blame his parents if he were open enough to talk about it with you).

Rachelle, mommy to 8 year old boys! 

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#9 of 9 Old 12-19-2006, 02:54 AM - Thread Starter
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I just wanted to thank everyone again, and give an update. We are all doing much better. I think we all needed to bottom out before we could come up for air.

I feel so much better. I can't express how much posting here and lurking around all you understanding mammas has helped me. I feel renewed and hopeful.

Hubby is doing better too. He is even testing at dinnertime with Todd now, and has expressed interest in reevaluating his regimen. I think he's noticing that Todd is eating better than himself. Hee-hee.

Todd is happier too. Although it stinks that it has to be this way, he enjoys the special time with daddy, and I know daddy being around to help him is comforting to him. He doesn't feel so alone.

We decided to get him a puppy and are considering having it trained to be a service dog to warn of hypoglycemia. Like any eight yr old boy he is going crazy at the thought of a puppy.

Last night I came in from the grocery store and he started putting them all away for me (without being asked) and he was singing. When I asked him what was up, he said I'm just really happy.

I am so grateful and relieved.

Thanks agin everyone. You have no idea how much you have helped me and how much it has meant for my family. Being the heart of the home, I set the vibe. You all strengthened me and my whole family is feeling the effects of it. Every one of you please go to sleep tonight knowing that you helped my family TREMENDOUSLY!!

I cannot thank you enough.
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