Replies to This Discussion

Permalink Reply by Tonya H on July 18, 2012 at 4:20pm

We are almost 4 years into our D-life, and while I find that I am less stressed-out about it, I still worry... all the time. Sadly, the worry never goes away. I wish I had better news about that. Constant worry just goes with the territory, unfortunately.

Our daughter was diagnosed a month before her 2nd b-day, and she will turn 6 in October. The thing I learned over time, is that there is no such thing as "figuring out diabetes." There is no perfect solution. It is constantly changing and unpredictable. All we can do is try our best, every day. I also found that it is very helpful to treat the BG numbers and the A1c results simply as DATA, not a judgment. This disease is already hard enough without us being hard on ourselves, too.

I find that once I removed the emotional baggage from the numbers, life was a little more bearable. At first, I used to beat myself up about every high or low number, wondering what I was doing wrong, and why I couldn't figure this out. Truth is, sometimes there is no figuring out "why." So, I try to remember that they are only numbers, which inform us how to proceed, until the next bg check. They are not a report card.

It never gets "easy", but you can adjust the way you react to it and approach it.
Anyway, just wanted to share. Hope this will help. We are here for you.

Permalink Reply by HomeSchoolMom on July 18, 2012 at 5:16pm

Hi Curtsmom! My 9yo daughter was diagnosed seven months ago, so I can appreciate the rawness of it all still! I know everyone has their own path with this...so I can only tell you my experience. I have type2 for ten years now, so I was already a believer in the low carb way of eating. I put my daughter on Dr. Bernstein's diabetes diet as soon as she came home from the hospital. We do multiple daily shots, which because of the low carb diet, she now only takes 1.5 units of Levemire a night, and does not need pre-meal insulin. We experience no highs, and very few lows below 70. I know people are skeptical of the low carb way....but it WORKS! We are supervised by a Naturopath.

Permalink Reply by daneenm on July 18, 2012 at 5:32pm

CurtsMom,

Yes, day to day living will become easier, as some things will just become second nature to your family. It is very hard to fight the 'worried all the time' mode...or at least it was for me. You are so early in the process still though that everything is still overwhelming.

I agree with Tonya about seeing BGs and A1Cs as just data. As a Type A gal, I was totally frustrated by my inability to replicate the work of my son's pancreas (he was 20 months at dx). It took me years but I think I am mostly out of that line of thinking. The human body is a complex machine and you can never know all factors at play.

I would also suggest that you remember this is a marathon, not a sprint. The things that you decide for your son's care need to be things that he can live with his whole life, or until a cure is found. So, in my family this means that we have taught our son that everything is OK to eat in moderation. Our theory is that deprivation is not sustainable, he will just find a way to sneak what he wants or gorge on it when he does get it. So, we try to focus on a healthy diet with occasional treats, just like we did pre-T1D.

Lastly, I would suggest that you hook up with a play group, or camp, with children his age and parents who are willing to share experiences. It is really helpful to see folks who have been at this a bit longer than you have and see that most of the time they do not let T1D rule their lives, they just deal with what they need to and go on with business as usual.

Hang in. For me, the first year was the worst in terms of my mental adjustment (my son was all adjusted in the first month). Now that we are approaching Middle School, I am trying not to let the fear creep back in :-)

Permalink Reply by Isaac's Mom on October 11, 2012 at 9:12am

Great Post!!! I stongly believe in Moderation more than deprivation!! My son is 6 and was starting to sneak food at around 5 years old, so i had a talk with him, that he can eat anything just to please let me know and we can cover it with insulin. And yes the 1st year is DEFINITELY THE TOUGHEST! I still break down about 1 time a month and its been 3 years since my son's dx.

Permalink Reply by Jacob's mom on July 18, 2012 at 5:32pm

hi curts mom, i feel your pain. it has been almost 4 years for my son he was diag at 10 and he has always been very responsible so that is a big help, i still handle most of his care however, he has forever to handle this so i spoil him a bit now. but anyways i would say the worry stays but it does get easier. acceptance is key and confidence in your ability to handle this no matter what. there will be really tough days and easy ones ( just like with anything else). some advise would be to keep very good records they help you see trends like what worked for what dinner with such and such bs and this dose on a given night. i am always looking back, even though my son is now on a pump i keep a log. i suspect your son is on lantus and novolog? keep them in totally separate parts of the fridge so you will never wonder if you gave the wrong one ( yes i did it novolog instead of lantus he had a feast and i felt bad, we all make mistakes and judgements can vary if your husband is part of the team try not to judge! you are not alone in this, i would treat you son just the way you always did, he is a kid within reason i would not restrict his diet, he can make that decision when he wants to as an adult. my son has icecream most nights the fat keeps his bs stable at night. this was a wild response my thoughts are on so many things i would like to say but we are all here for you, this is a great site for support and info, because people not touched by D have no clue what is involved and you can end up feeling alone. hang in there, do your best you have the tools and focus on all the wonderful qualities in your son, chances are he is taking this like a trooper, following your lead and trusting that you will care for him always. other than that he just wants to be a kid, let his trusting free spirit inspire you. sending you peace and acceptance. life is full of suffering but once we learn to process that, there is only this moment and love. ( i am a yoga teacher it seeps into everything!) best wishes! amy

Permalink Reply by Patti on July 18, 2012 at 7:15pm

Hi!

It is totally normal to feel the way you do - the worry never totally goes away, but as your son gets older and more independent it definitely lessens. We have two boys that are T1, 14 and 17 and have been at this for about 4 years. I try to just take it one day at a time, each day brings a different challenge to deal with. You will be surprised at how, one day, very soon, this will all be second nature to you and dealing with the ups and downs of diabetes is just normal.

Currently I am just trying to deal with adolescence and a freshly minted driver!

If you can find other type 1 parents in your community, it will be a big help as well. It is very important to have emotional support with this.

Best of luck to you!

Patti

Permalink Reply by Momof2t1s on July 18, 2012 at 9:44pm

I am not sure how honest to be in my reply. I hope my honesty doesn't make it worse for you - if so please forgive me - I wish someone had been honest with me.

I am a mom of 2 kids with type 1. My first was dxd when he was only 2 in feb of 2007. I knew nothing of diabetes. We nearly lost our son. People would tell me that it would get easier. It has been over 5 years and it isn't easier. Thus I now tell people "It never gets easier - you get better". That is truth.

My second child was dxd at age 9 in 2009. She is my oldest. People would say "well at least you know what your doing - it should be easier". No it isn't easier - it's harder and I am now twice as angry. And no I don't always know what Im doing. I still make lots of mistakes. I am still scared I will mess up. I still cry. BUT - the crying, the anger, and the frustration are less and less. Sometimes Ill go months without getting sad. Othertimes I get overwhelmed and I hide in my shower (my shower is my friend - water soothes me).
Im glad to hear you are educating yourself with books, classes, experts etc - Im sure that is useful. For me that would be overwhelming. I didn't read a single book about D other than pink panther until the end of our first year with D. That book was "Cheating Destiny". Careful it is an emotional read but worthy it. I now reference "Pumping Insulin" and "Think Like a Pancreas" often. One of my most favorites though is "The Book of Better" - this book really advocates for pumps - and you are fairly early in this journey and maybe aren't ready to consider a pump. We decided around the 4 month mark that we wanted a pump for our 2 year old. Our endo said no so we switched endo's. But if the pump doesn't interest you or your child then their is nothing wrong with MDI. I have met a number of wonderful adult pwd (people with diabetes) that are very successful with multiple daily injections.
The worry will lesson - you will get into the grove of things. Then someone will invite your child for a playmate, or a sleepover, or there will be a field trip and you will worry again - rightfully so. Only do what you are comfortable with. Teach as many as you can and are comfortable with about diabetes and what diabetes management looks like. Don't let anyone bully you - there is no cure for type 1. No amount of cinnamon, tree bark, oregano, or magic fairy farts will take D away. People may try to attach blame to something for your child's D. It is easier for people to believe that you or your child did something wrong and thus D moved in than to admit that sometimes shit happens. If they admit sometimes shit happens then they become vulnerable to the shit.
I think it is important to put on a game face for our kids BUT I think it is equally important for us to be honest with our kids. Tell our kids we hate D too, that D makes us sad and angry, that we get frustrated with D as well. I don't allow my kids to see me at my worst times (in the shower) but I have cried in front of my kids - with my kids. When I put an infusion set (pump thing) on my sugarboy this morning I must have hit a muscle because it hurt him (doesn't happen often) and he cried. I cried with him because it hurts to see him in pain. He dried my tears and said it was ok. That saying and currently a very popular song "What doesn't kill us makes us stronger" that is so very real for us. Diabetes has made me stronger and help build strong and confidant kids.
This is a fantastic place to connect and I am only recently a member. I have not made it over here as often as I would like. Im still getting my feet wet. I am very active on twitter and in the DOC (Diabetes Online Community) - placed like the DOC on Twitter and Tudiabtes have improved my life a bazillion times over. Stay involved - reach out - connect. You are not alone. I hope I have helped and not hurt. HUGS!

Permalink Reply by Isaac's Mom on October 11, 2012 at 9:17am

Great Post! Thank you for sharing this with everyone. I am very much afraid my 1 year old will get diabetes. My 6 year old was dx at 3 /12 and I have read that siblings are at at 70% chance of getting it. I will get to reading and get more informed. But I agree with you, it doesn't get easier, we get better at it.

Nice to meet you
Erika

Permalink Reply by Ray on July 19, 2012 at 12:33am

Heye yeah, it hurts to see your kid inject, but think possitive it s just a condition , there s help being develloped...omnipod...eg, new tech , even transplant...dont read too much...the non stop worry will go away if he s 18 y and goes to uni to become a doctor?..or becomes a rallye driver,laywer or a clown in a circus...
like my son 18 now...keep the faith and have fun.... involve teachers..but keep an open mind, they can over react...some kids like to keep to themselves so then maybe not too much involvement..there s no guidance...follow your instincts...ultimatly he will have to listen to his body... ask him how he feels..but yeah my son says...dose the discussions to the right times and let him talk to others with it in his own age group...hope this helps...Ray

Permalink Reply by Tamra on July 19, 2012 at 4:52am

My six-year-old daughter was diagnosed 14 months ago. She also has autism, so she has never been able to tell me when she feels "off", so it was always a huge guessing game for me. I know how you feel. I spent many days and nights in a complete state of worry and, at times, pure panic over the entire situation. I am meticulous about counting her carbs, making her eat in a set amount of time (hard for her, as she had always been a grazer), and learning the stressors that impact her levels. For us, when the honeymoon phase finally ended, things actually got better. After a year, I finally feel fairly comfortable with the situation. I no longer worry as much about her bottoming out, since the only insulin she gets now is what I give her, not what her pancreas decides to inconsistently give. Personally, I have a great support system. Make sure that you do take the time to cry it out when you need to, as it will give you an emotional outlet that you need right now. This group has helped, as I know I am not alone in my journey. Also, remember that a strong person isn't one that doesn't cry. A strong person stops to cry, then gets up and keeps on going. Prayer is the biggest thing that got me through. I will keep you in my prayers. You are in the hardest stage. This will get easier. It just takes time. Hang in there!

Permalink Reply by Robin on July 19, 2012 at 8:13am

Hi Curtsmom, I am the mom of a wonderful and amazing 4 year old (she will be 5 in Sept!). My daughter was diagnosed Feb 17, 2011 & pumping since June 6, 2011 and all I can say is it sucks! I hate it. I am so sad for her. I still cry and have emotional breakdowns. When I have to change her site and I have to stick a needle in her that stays in all the time...it pisses me off. I think Momof2t1's said it best...It never gets easier - you just get better. It just becomes part of life. His diabetes will become 2nd nature to you as breathing is. There are many late nights (We still test in the middle of the night), there will be times that family plans change because we are having troubles with lows or highs. But we just adjust. This is her life and I have to do the best to care for her until it is her turn, and I have to teach her everything I know so that she is informed and can care for herself when the time comes.

My daughter is pretty amazing though. She is a champ. I know she will be fine and a success in her life and I am glad to be along for the ride! Good luck to you and your family. Our children are so young that I believe there will be a cure in their life time.

Permalink Reply by Hockey Mom on July 19, 2012 at 9:33am

Mine is off to college 5 hours from us in 1 month and 5 days. The worry does not go away!

Although at 18 he does 99% of his care, I'm the one that keeps everything he needs stocked (Pods, Test Strips, Wipes, Insulin, Gatorades for Hockey lows, Snacks for nighttime lows, etc, etc. etc). It is a lot for one to take on in addition to adjusting to college life.

I also check that he has Temped his Basal after hockey to prevet nightitme lows and still get up to check on him after a game - not really setting the alarm anymore but if I'm up just checking that he is not sweaty and low looking. He has decided to play hockey at college and had 3 lows the first day back on the ice this Summer. (I was not as worried before he made that decision.)

All I can do is be at peace that he has the best equipment, the best doctors, the best training, the most supportive parents and have faith that he follows through and pray that there are supportive people around him to help if need be.

Be good to yourself - you may be overtired. My worst days came at about 4 months when I started to grasp that this was forever and asked how were we ever going to survive? But we did and now we have a new normal.

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