Discussion in 'Parents of Children with Type 1' started by Mom2Quinn, May 16, 2012.
Just to clarify, are you doing 20+ fingersticks on your son or your patients?
I may be in the minority, but the "it could be worse" line actually DOES comfort me...and I use it on myself as well. Yes, D stinks, and I would do anything to take it away from my son. That he has this is not fair. But, once I watched a documentary on the history of insulin, and saw how people with D suffered before insulin....I was streaming tears of gratitude for insulin and all the other technology we have now to manage our kids' D. I hope this doesn't come across as harsh or unfeeling (even though it's not something we don't all know)...but without insulin, my son would not be here. I am eternally grateful that he has a condition that can be managed so that he can have a normal life...that he can have a life at all.
Even when my son was dx, we saw the sweet little ones around the hospital with no hair. Selfishly, my initial sadness and empathy for them was replaced with the thought that "at least they have the chance for a cure." Please remember, I was still in the initial stages of shock at the time. In almost the next breath, I realized my son had something I would not "trade." We would manage this...he would have a long, happy life...there would be minor discomfort...but hopefully no major suffering in his childhood. I told myself...it could be worse.
I know, in the beginning, these thoughts may be of little comfort..and, as you said, actually cause you pain. The simple fact that you are dealing with this dx is awful...and I don't mean to diminish it. But perhaps one day these thoughts will be a comfort to you. I do try to count my blessings when I am down, and always add in that "it could be worse.":cwds:
I am at this stage -- it could have been worse. My son was was dx'd in October of 1997.
To the OP, you are at the stage where this is the worst thing in your life right now.
Diabetes will fall into the background as soon as everyone starts to do what they did before diabetes.
Be patient with yourself and allow yourself to move from one stage to another. It takes time.
OP "Mom2quinn," I see you added this as your signature. Take a look at my signature. Yep we've got AS, ADHD, maybe OCD, anxiety, blah blah blah at my house too. Like me your first born has AS and your second has D. Well let me tell you, D is not as "bad" as AS, imo. When you hear it could be worse, believe me, it already is. D will eventaully fade into the background and not affect your kid's potential the way AS does. I find that more of my energy and worry is taken up by AS than by D. And I'm almost ashamed to say that when my darling little 4 yr old dd was dx'd with D, my one good thought was, "Thank God it's not my son!" I woulnd't wish this on my beatiful daighter, but my son who already had AS/ADHD and anxiety and was generally wound tight would have fallen apart. My duaghter took it all in stride.
If you are dealing and have been dealing with AS in a 13 yr old, believe me you will be fine. This is just my experience, but frankly, D is a breeze compared to even mild AS. You can do this.
I don't have a child with Asperger's, but I feel this way often about my older son....thank God it wasn't him. Just because of his personality and the way he looks at life...D would be much harder for him. My Daniel (with D) is sunny, upbeat, and gets over things quickly. D stinks, but he gets past it. My older son is a "dweller" and he would be bemoaning his fate on a pretty regular basis!!
Denise, I actually thought the same thing, I can only imagine my first born taking his sugar, me asking what was it, and him shrugging "I don't know." then forgetting wether or not he had taken his insulin, lol. If one of my kids had to get dm, my Quinn is the most able. I think the hardest part of my older sons Aspergers is that no one understands what it is.
Just my patients, lol!
It does get better, just as the others have said....it just takes time.
I remember when people would say to me, that there is worse, and at least it's manageable, and I would be so angry at people for saying these things to me because they had NO IDEA what I was going through and how I felt!!! This was my child and they just didn't understand!
Right now you need to be angry, you need to be sad that this happened to your child, it is natural reaction to a chronic illness.
Just take one day, one test, one shot, one meal at a time, and things will get better!
For me, diabetes is a part of who my son is, it doesn't define him anymore than the color of his eyes, it's just a part of who he is and managing his diabetes is just a part of our daily routine, it doesn't make our days any better or any worse, it just is.
I think the first year was the hardest and most overwhelming and then as time passes you just take each new obstacle as they come and deal with it.
I second this advice..... There were MANY a night when I would bawl into my pillow at night. It is important to maintain a brave face and a positive attitude in front of your child. It DOES get better. I promise! :cwds:
My oldest has Autism and when my 2nd born was diagnosed with D, and I too had the "thank goodness it's not my oldest" thoughts. There is no way he could have handled it. My 2nd born is taking it all in stride.
We are still in the early days since diagnosis, just about 6 weeks out. I hate D already, but the "it could be worse" thoughts actually help me too. Kind of like with autism (for my son), we can manage it for the most part, and while it makes me even more exhausted than I already was, I'm grateful it's not something that is requiring major hospitalizations or insane drugs.
But there are definitely moments that I fall apart and can't believe my son has to deal with this for the rest of his life. It's a hard road, even with it's manageablility (my tired brain is making up words, rather than finding the correct one).
Focus on managing D today. Tomorrow will almost certainly look different, so just take it a day at a time. That is helping me a lot.
My son saw me cry when I heard that a friend of mine son was diagnosed with diabetes. He said to me "Mom, why didn't you cry when I was diagnosed?" It was years later, so I responded with "Tyler, of course I cried!! I cried every time I walked out of your hospital room, and remember how a friend or family member would come and stay with you while I ran home for an hour to take a shower, well I cried the entire time I was gone!" He looked at me, and told me that I covered it up well, and he never once knew I was upset and that's why he never got upset because he figured it I was okay with him having diabetes, then he would be okay and shouldn't get upset.
To be honest, I've blocked out the first 6 months or say after dx. My second was born 3 weeks after Ella's dx, and I was so overwhelmed and upset. I was also working the night shift and getting 4 hours of sleep a night at most. We knew NOTHING about diabetes and it was trying. I grieved hard for that first year...and I grieved when she was diagnosed with food allergies...and with Evan's Syndrome...and with celiac. It's a natural part of chronic illness.
My DD was diagnosed at 2 1/2, and will be 11 next month. Diabetes can be a challenge, but like others have said is just a part of my daughter, not unlike her green eyes and her creativity and the fact that she has 5 little siblings. I've also found while D is not something we wanted and something that can be a pain in the butt sometimes, she's learned a lot from it and I think she's a more compassionate, patient person than she would've been without D.
I also agree with whoever mentioned the differences between D and AS, although I'm coming at it from the other way. My daughter was diagnosed with D 8 years ago, and my 6 y/o was very recently diagnosed with bipolar disorder. Different struggles, but I can see that BP will affect Nick's life in a negative light more than diabetes has.
Welcome to the club, but I'm sorry you're here!
Oh bless your heart dear:cwds: My son is also 11 and was diagnosed at age 3. I remember that kicked in the stomach feeling And the feeling that it just wasnt fair and I just wasnt going to be able to handle this cr**. And yes, lots of tears and worry over every blessed little thing.
So in answer to your question. YES! oh yes I promise! It does get much better and much easier. And I know youre shaking your head in disbelief but your life will get back to normal. It will be normal for your family, maybe not for others around you. But it will be normal and good some days, other days will suck. Kinda like before diagnosis. And youre going to be in awe of your child He is and always will be your hero now. He will be able to poke his finger, add up carbs, take his shot, eat his food and then go play ball or video games or to hang out with friends. All without missing a beat! My son Steven is interested in so many things these days. He looooooves Minecraft!! Its a game on the computer. And he makes awesome things out of Ducttape. He likes playing basketball and watching his favorite shows like Mythbusters. The diabetes is like music playing in the backround. We know its there and has to be paid attention to but doesnt usually get intrusive. If your boy is interested in sports of any type let me know and I can show you the list of famous athletes, actors, musicians, etc who have type 1 diabetes
I agree the parents reactions have significant impact on how our children see things. I have been very careful to keep it away from my other children & have also been crying in the shower & when I'm alone in the car. Thanks for the advice
I'm so sorry for your son's dx. It gets better over time. Even now, 7 years later, I teared up reading your post because some days the helpless/angry feelings come rushing back. It's a frustrating thing, managing D, but the key is that we do manage and our kids are thriving and healthy and happy! My son was dx at 10 months and the first weeks/months after dx I kept looking for "success" stories for kids/adults with D that have grown up normally and done amazing things. Those stories made me feel better - made me realize that my son has a great chance of a normal, happy life without D holding him back from doing anything. I was still angry at it and at the world for a while (and sometimes still am). Put a lot in perspective for me when 3 years after Andy's dx, my 4 year old nephew was dx with brain cancer and endured a painful/difficult battle for 15 months before he died. Awful stuff. For the first time in my life, I was grateful Andy had "only" diabetes. Re-enforced for me that there is no answer to the quetion "why". Gave me a different set of things to be angry about, but made me so thankful for the ability to manage D and the bright future available to my son. It does get better but it's okay to be angry about it too. As time passes, you'll see lots of happy moments shared on this website too. hang in there - it does get better!
Hi Quinn's Mom,
Let me welcome you to this site, though I wish you didn't have to be here! Ali's diagnosis date 2nd anniversary is almost here and it does, for the most part, get easier.
I still have moments where I am angry, sad, devestated and any number of emotions. I have found that being part of the Diabetes community has really helped. Making friends with other parents of kids with T1D has provided me with the resources needed to feel less alone in the world. Also, having contacts with the local JDRF chapter, with people at our Endo clinic, sites like this, they all add up to a sense of family.
Your post caught my eye as I had just blogged about the same theme: http://naturallysweett1.blogspot.ca/
Just wanted to add a note of support. I have one daughter who has had T1 for 13 years, and another for 4.5. Most days are good, but honestly some days are still bad. there are still days after so many years that I cry, but not like those first few days with my middle daughters diagnosis. I was 9 months pregnant with my youngest, and that's the only thing that kept me from really losing it. However, when that perfect baby was diagnosed 8 years later, I REALLY fell apart. I screamed, I cried, I got REALLY mad at God. It wasn't fair to have 2 kids to deal with. then we've had more autoimmune diseases heaped on with the youngest, hashimotos, CRPS, ....but we just keep hanging on.
It really does get better, but that is just because you will get better at dealing with it and so will your child. Howeever, I HATE it when people say, it could be worse. the reality is that there are some days that it really can't get much worse. I've seen it with my girls, and I hope a parent never has to see that. The fact is 95% of cancers are curable, 0% of T1 diabetes is. I have a very good friend who has had cancer (stage 4 ovarian, mulitple sugeries, multiple treatmentsm in remission now), MS, and type 1. she told me and my oldest teenage daughter who is struggling with dealing with the every day groundhog day nature of this disease, that of the 3, if she could choose to be cured of any it would be diabetes.
this is not from a parent caring for a child, it's coming from someone who has lived with it, and much more for most of her life.
don't trivialize your pain, or your child's pain. It really does get better, but that doesn't mean it's not hard. Blessings to you and your child!
It's definately not easy, and even after 18 months, we still go through our angry period of really hating diabetes. But what I tell myself and my daughter when we're really struggling is that it could be worse. She could have parents who didn't love her enough to go through the sleepless nights and endless worrying. Maybe I am wrong for having that attitude, but for us it's true. She and I are a team, every decision that has been made for her care has been made together. There are days when I curse the fact that we have to consider what her numbers have looked like before I can say go have that bowl of ice cream or whatever. But then there are days when I watch her make a good choice knowing what that bowl of ice cream will do to her, or say that diabetes has made her stronger and braver than she ever thought she could be. It's the small victories that we celebrate and the minor setbacks that we don't let hold us back.
Look for PM
I have sent you a PM pr personal message through that part of this site because I have included phone numbers and other contact information. Look in the upper right part of the screen after you log in and you should see that you have a message waiting. It is very helpful to have the support of other parents. We cannot take away what you are feeling right now yet we share in this journey and have walked it. The only way through is just that, to go forward, heading straight on. You will not go alone. Please feel free to contact me night or day.
Hi. We are fairly new to all this too, about 5 months in. I really don't remember the first few weeks very much. I think I was in shock or something. It has definitely been easier as time goes by and I can only hope that continues. When Zak was diagnosed with his autism I just tried to get through each day one at a time and I find myself reverting back to that coping strategy with the diabetes too. Today was pretty good. Hopefully tomorrow will be too.
Hang in there. And don't forget to take care of yourself to. I am notorious for never stopping to think about myself until I end up with a horrific migraine or something like that.
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