My Name is Amber, I am a 36 year old homeschooling mother of 4. On June 10th my second oldest Jacob (10) was diagnosed with Type 1. It came as a surprise. We took him in for a eye infection, they thought he looked pale, checked his urine, found sugar, did a glucose test and he was 697 (A1C 11.8)
Tomorrow will be 4 weeks since our diagnosis. (I think of it as our diagnosis, not to sound selfish but right now it has changed my life almost as much as it has changed his) We live in the Midwest, so we have been going to children's mercy for our education and they have been great.
Jacob is handling everything very well but every couple of days he breaks down, does not want another shot, hates diabetes, wants his life back. I just hold him, try to reassure him that it is OK to feel this way, tell him he how proud we are of him. Then he gets up and goes on and I feel dead inside.
I feel a little crazy. I get frustrated when people act like it is no big deal but If people try to understand I get frustrated because they can't. I think I should be in a mental ward :-)
I am grateful that Jacob's diagnosis came when it did, he was never really sick. Things could have gone so much worse. At the same time I am heartbroken. I am trying to focus on being grateful but
some days are better than others. Maybe I need to grieve? How do you grieve?
You are grieving and you are entitled to grieve. David was 10 when he was diagnosed in Nov 2003. We were in the same boat as you back then. All I can tell you, is that it does, get easier. It will get more manageable for you, and Jacob will adjust to the needles and the finger pokes and the food weighing and so on. It is sad, in that it takes away so much of a 10 year olds, every day, independence. A year from now, you will look back and realize that you both struggled through this, but you managed, and at some point it all becomes less frustrating and more of a daily routine.
You have found a great site to communicate with other parents in finding tudiabetes. Vent whenever you need to. We are here for you, and for Jacob, and we will listen.
Hi Amber,
My son was diagnosed last July at the age of 10. You absolutely need to grieve. Where we are today, almost a year later, is a very different place though. Our lives are very close to normal. Today my son is going to Hollywood (an hour away) to go bowling with his summertime day-camp and I know that he can take great care of himself . This is truly proof for me that we have our lives back.
You will realize that nobody outside understands how much care goes into caring for diabetes and rather than get frustrated, you’ll just start educating everyone around you.
This is a great site for learning and meeting others. We also just got back from diabetes camp. I encourage you to find one near you and look into going. It’s a truly amazing experience.
Good luck to all of you.
I just want to add one thing to the great posts already here…Diabetes is a FAMILY disease. Don’t ever feel bad or guilty because you feel your life is changing too. Your life has absolutely changed. Not to minimize what our kids go through, but sometimes I think it’s harder on us at times than it is on them. We are grieving for our children. We would take this away from them if we could. We struggle with guilt. We are constantly fearful that something will happen to them… My daughter was diagnosed last year, and I promise you it has gotten better. We have found our “new normal.” But, I will be honest and tell you I still grieve. I had a great cry last night because of the struggles she has. I still cry, but it’s not everyday or even once a week anymore. Also realize that your other children will feel the stress of this horrible disease at times. The best way I handle it is just one day at a time. Good luck to you and your family.
We have all experienced what you have been going through. Our daughter was diagnosed on Sept 30 of last year and we had no idea how our lives much our lives were about to change. Part of the grieving process is to express your feelings to caring individuals who understand that their role is to listen, share comfort and realize that they do not have a magic wand to wave. Here is a community that welcomes you and is there to support you.
As others have said, you will come to a place of a new normal. Diabetes will always be time consuming but it will not always be all consuming.
My 11 year old daughter was diagnosed 8 months ago. It does get easier, I promise. I still grieve at times. I still get angry at times. It is normal. I found that I didn’t cry and really grieve until about 3 months later. I didn’t have time. We had so much to learn that I really didn’t think poor us.
Does your son know anyone near his age who has type 1? One of the first things that I did was to join a local support group for parents of kids with type 1. We have met a number of strong kids with type 1 and it has given my daughter the ability to talk to someone who is going through the same thing that she is.
We are hoping to find a support group around here. We do not know anyone with type 1, tons of folks with type 2. He is a really social guy and I think he would really respond to a group.
There is a D camp about 1 1/2 hours away in two weeks, we just found out about it on Friday. I don’t think we will have enough time to get the funds together but we will make sure he can go next year.
I think I was handling things better when we first found out. I think you are right Ursela, we were just too busy to let it all sink in…
Amber - Everything you say and everything the repliers say is true. Our 10 year old daughter was diagnosed almost 8 months ago (now there is progress - I had to count how long it had been rather than just knowing). It comes in baby steps I suppose. At my daugter’s 1 month post-diagnosis check-up, the endo said to us -" you are grieving and it is okay to grieve and studies show the grieving period lasts a year and in my experience it is closer to two years". Not what I wanted to hear at the time but it was a relief to know the sadness was not a personal flaw. If i had one piece of advice to give you it is to find a therapist for your son. Our daughter saw a therapist once a week then once every other week for 5 or 6 months total. It really helped her to have a professional to talk to and it helped me to hear when her therapist said that Mikayla had come to a healthy outlook about it. Hang in there and know you’re not walking this path alone. - Kristi
You and your son need to grieve, get mad a D and then get knowledge! It is scary but the more my son and I know (yes i call it our diabetes at least until he can handle it on his own) the more comfortable we are with D. Just knowing that this is managable and as long as you and your son are in the drivers seat not life threatening should help. I would sugest looking into pumping for him, it helped us a TON! and just remember you need to control you D… don’t let it control you!
Best of luck and let me know if there is any thing you and your son need!
Hi Amber
Im 36 years old and my son was diagnosed in DKA at the age of 18 months in FEB 6 2005. ( never will forget that date). Talk about a shock it took 3 visits to the drs before I screamed something is not right, they kept telling me it was a stomach virus… ANYWAY trust me you will always have a spot in your heart that is for grieving but you will also forget what it was like not to deal with diabetes one day and it will be be the not norm norm… I was almost at that point in 2008 when I thought Ok i can do this because all along he was doing it as if he was suppose to be diabetic. He can not remember life without needles. When he asked me why god gave him diabetes, without getting into the entire discussion with him about was it god or not , I tell him he has diabetes because he is strong enough to handle it … that works for him… ANYWHOO in 2008 … after testing my daughter since 2005 in her sleep every 6 months with a prefect reading of 77 :)… she started to act strange peeing and drinking constantly (dranka whole case of gatorade in 2 houes which was when I knew something was wrong) and I took her sugar on SUNDAY JAN 11 2008 and the meter read HI… so off we went … now that was the shock of my life… even with my son and all the stuff we been through I thought for some reason my daughter was not going to be diagnosed. I tested just because and all the nubmers were alwasy good and I got real comfortable with the fact that it was just my son… nope Im a mother of 2 TYPE1 diabetics ages 7 and 12 Both on Lantus and Novolog … neither want a pump yet… so just to tell you dont think about it as grieving or there is a time limit… its just a part of being a mom with a child who has diabetes… Not many can relate and everyone who does relate has a different way of dealing… we just have to all help each other out and hold each other up as we need it …
WOW GG2!
I have been checking my other kids periodically, I even did it before our diagnosis. I don’t know why? Maybe because we have a family history of type 2? Who knows… I keep saying to myself, Jacob was fine at Christmas. I check the kids yesterday and my #3 (he is 6) was 142 two hours after eating, so now a small part of me is thinking is he going to be next… Logically I tell myself don’t borrow trouble, but what if…
I have a friend who is encouraging me to try a vitamin regiment to help keep Jacob’s pancreas going as long as it can… one of the vitamins contains niacin and both novolog and lantus says not to mix them with niacin…
A part of me is on information overload and I don’t know that I can take in anymore information? Another part of me thinks, if it could help him? Another wonders if it is worth it, if it did work? Another thinks the hospital is doing a drug trail, if I am going to experiment with him why not try that?
Anyone have any experience with vitamins?
I have always been leery about medications/ even vitamins… but obviously that is changing to some extent
I have tried everything I think but then again I never heard of niciam with it… I have done all the herbs. I used to sprinkle caynne peper in my sons pb sandwiches… lol he never noticed … and green tea i brew my self … but nothing has really made a difference but a good diet to be honest… lots of fruit and veggies I try… lots of water I push… all god made foods LOL but honestly I stopped trying and focused more on their emotional strength . My daughter has a much harder time now then my son… she is 12, going on 25… and EVERYTHING REVOLVES around DIABETES is her cry… and I told her YUP it does. My son could care less at this point I mean he goes with the flow… askes her DID YOU TAKE UR SUGAR BEFORE YOU ATE or DOES MOM KNOW. he is like her angel LOL
I wouldn’t give any supplements, especially if your insulin instructions says not to. It probably means that it interacts with the medication (making it more potent or less potent). There is research that says that supplements don’t do any good anyways. You just end up dumping them out of your body and they never even enter your blood stream. Whether or not you believe any of the research, I would follow the directions for the medicine.
Do you have an endocrinologist? I would call them and see if there are any trials going on that is trying to preserve pancreatic function. The one that I know of is no longer accepting patients. They do however test siblings and parents for the antibodies that may trigger type 1. It is Trialnet. Their link is as follows: http://www.diabetestrialnet.org/index.htm. If your children test positive, they may put them into a trial that attempts to stop the trigger.
That is nice that he takes care of her. My oldest is a girl, she is soon to be 13. She cares about her 10 year old brother, was worried, wanted to make sure he was going to live and now she is back to threatening to kill him and his younger brothers on a regular basis.
Thank you Ursela. Right now we have about as much as we can handle, I don’t want to think about anything else. Some times the more passionate ones make me feel guilty for not trying (I know that is not their intent, I am just hyper sensitive at the moment)
I need someone to say, it is ok to not do it
Seriously, this may sound crazy to you right now… I was looking for trials to ‘save pancreatic function’ but my DD was too young for the only one I could find at the time. As it turns out, once her pancreas did quit spurting insulin randomly our lives got much better. We’re able to control her glucoses much better and she’s not suffering from hypoglycemic reaction after hypoglycemic reaction all day long with the fright and lethargia that accompany it. I’m also much more relaxed when she’s not right with me and not laying awake at night listening for the least little change in her breathing and flying up the stairs to poke her poor little fingers again.
