How often do you feel down about your child having type 1?
My 4yo has had it for almost 2 years now & I am starting to feel how I felt at the beginning & 6 months into it.
Terrible feeling, when you feel useless & just want to take it all away from them.
@Cloudydays93 hi Claudia, I think any parent that couldn’t cure their kid and had to watch them deal with a disease would feel this way so you are not alone in these feelings. The reality is you can’t cure your child so what’s left is you still have to support them and guide them until they can support themselves.
I think that the important thing is that if you are defeated then they are defeated. If you are feeling helpless then imagine how scary that is to a child. At the same time, if you do not accept defeat, if you find hope and strength and courage despite this diagnosis then you can help set up a future where setbacks, no matter how confusing or frightening, can be dealt with and is absolutely not the end of their life. Isn’t that what we are supposed to do?
I am not saying it’s easy. I can assure you it is not.
The only other thing I can say is that doing something… anything… is better than nothing. A JDRF walk or ride for a cure, or any diabetes benefit of any kind and any scale - can connect you physically and emotionally to “progress” as in progress for better care or a cure for diabetes and that feeling can make all the difference in the world.
You are not alone.
@Cloudydays93 I am totally with you. There are good days where we are in our routine and things run smoothly… but then there are the hard days. My son is 6yo and was diagnosed about 1.5 years ago. On the harder days, it is exhausting and frustrating and I wish I could take it away from him and give it to myself all the time. This age is so hard because there are so many more factors that play into their bloods sugars. Same thing two days in a row with completely opposite outcomes. Do you know anyone else who has a child with T1? I do not which I think causes the stress to be worse. No one who really understands what our 24/7 looks like.
Hi @Cloudydays93. I’m the child here, not the parent. I was diagnosed at age 3, and am now pushing 60 and doing well.
I am extremely independent, and I’m sure developing diabetes at such a young age contributed to some degree, We didn’t have BG meters back then😱, much less CGMS and other tools that are common no, so I had to learn to read my body and recognize what we now know are signs of low and high blood sugar. I got used to certain regimens, regular doctor visits and tests, and got accustomed to needles at a very early age - I can go to a lab, roll up my sleeve, and chat with the tech or read a book without batting an eye as they draw my blood. Others may look at me now as I do a finger stick or give myself a bolus with my pump (or took a shot in the past) and say “You poor thing - how do you do it?” (people have) - but for me that’s my normal. The things I do have long been as much a part of my routine as brushing my teeth, since they’re pretty much all I’ve even known. looking back I do wish I had incorporated certain practices in earlier: I know people who religiously incorporate physical activity into their daily program, whereas for me it is more of a struggle than a natural thing. So I would suggest you use their youth to reinforce good practices. Not that my parents didn’t try, but I just didn’t keep up with what I was taught.
There are diabetes camps that help kids learn to manage at levels appropriate for their age and maturity, while having fun in the process. Parents can get some “hands off” time knowing their child is being cared for by professionals, and of whom my have diabetes themselves.
Hope that helps.
Hi Claudia - I too have down days, what parent doesn’t want their kid to be healthy and happy all the time. Some days are harder than others and you can feel alone and scared but you still you need to be the positive when it comes to your kid. My son was diagnosed in May of 2017, and I remember how scared I was and how I wanted to take it away. I still am scared, I still want to take it away. You are not alone! It is only recently that I have reached out and told anyone about it, and when I did it really helped. I was directed to several facebook sites and web posting about other families dealing with the same struggles and it helped me knowing that I am not alone and that others are thriving with this horrible disease. I also find prayer helps, God loves our kids more than we do and he will walk with us through this. Keep reaching out, keep supporting the research in any way you can and know that our kids only see it as a burden if we make them think it is. Hugs.
Hi Claudia and friends. My son is 15 and was diagnosed 9 months ago. Overall, he has done exceptionally well and I’m so grateful that he is old enough to understand as much as one can with T1. Diagnosis started with DKA and PICU as most do and I felt so overwhelmed and like I wasn’t able to process it all even though I’m a nurse. My husband and I grieved terribly when Jules got home from the hospital when we settled in to the reality of our son’s life…his WHOLE life. I do really well when things go well but every once in a while I have a day when I feel as if I’m back to day one and it’s just all-out uncontrollable grief. I asked a friend who is a T1 mom if this is normal and she replied, “I don’t know if it’s normal but I’m there.” Sometimes I feel guilty for feeling this way because I’m a NICU nurse and I know parents who would give anything for their child’s diagnosis to be treatable or even for their child to be alive. I’m also so grateful that Jules was diagnosed at a later age and not so young as yours. Teens certainly bring challenges, but I pray for you younger moms because I just can’t imagine how much more challenging your T1 Life is with little ones.
As a Christian my faith is in God and I know He loves us and He has a plan, and as the scripture says He is working all this together for our good and for His glory. I have seen this play out in my life pre-T1 and so I gain strength and peace from that. This diagnosis has drawn me closer to God because on the toughest days I have nothing left. I recently heard a pastor say to never despise anything that drags you to the feet of Jesus.
Since T1, I have a new compassion and love for my patients and their families, and in general see hurting people differently even when they are very different from me. I also seem to enjoy the special moments in life more and am more focused on cultivating relationships than on the more temporal and negative things in life. These are good changes in me since T1, and if this all doesn’t change us for the better then what’s the point?
Let yourself grieve on the bad days because it just shows you love your child deeply—let it out. It’s normal to grieve and fear and wish it away. On the good days, press on and try to let this whole thing change you for the better. Our children are going to be stronger for this too. They already are.
Blessings and prayers.
Mollie @mollie1, I appreciate you frustration, but not the grief, of your son now having autoimmune diabetes - and you, as a nurse, know it is not because of anything that he did or didn’t do in his lifetime. Keep in mind, that diabetes should not prevent your son from living a full, active and rewarding life and that living with diabetes may actually be a blessing.
I too am a strong believer in God and know and accept that I will not be burdened by any trial for which He does not give me strength. My diabetes began at the same age as your son’s and there is nothing in this world that I haven’t been able to accomplish with effort and perseverance and and I’ve out-lived and done more than many of my contemporaries. Oh, I’m in my seventh decade living with the blessing of autoimmune diabetes.
Hi Claudia, I was diagnosed in 1945, when I was 6. My Mom had the same wishes that you do. She did not know anything about diabetes except that I was not supposed to eat sugar. Our doctor also knew very little about this disease. There was no way of testing blood sugar at home, the insulin came from the bodies of animals, and there were none of the present day devices for having good diabetes management. I not only survived, I am a healthy type 1 diabetic for 74 years now.
With the knowledge that we now have about diabetes, and the wonderful devices that are available, good diabetes management is so much easier. Take it one day at a time, and work with your child, with a smile and an encouraging manner.
With your help, your child will be healthy, and have a long happy life with diabetes.
I feel the same way these days, it’s like an emotional roller coaster. My daughter was diagnosed a year ago at age 10, and it was so devastating and stressful. It’s been a long year! It’s honestly an emotional roller-coaster. Some days I feel like ‘we got this’, and then other’s are just so stressful. I know my daughter can have a great life and do whatever she wants, but some days I have a tough time coping with it all.
Everyday I cry. I cry I am angry I am depressed… I could go on and on my baby is 8 we have been Dx since 1/2018. I feel shitty daily. I have been in medical field for years, both mom and sister are psych nurses and we didn’t catch it!! She is not overweight doesn’t over eat stays active ( competitive swimming, and dance as well as gymnastics) I am depressed I have days I don’t get out of bed only for her. She has anxiety and anger issues because of it and I can’t make it better. I have lost myself and I’m afraid I won’t come back…
I am not alone after reading comments. It is a mother’s job unless otherwise !! So overwhelming and I still can’t see the light at the end of the tunnel