Complete emotional wreck! Tell me this gets easier?

Type 1 and LADA Parents of Children with Type 1 Diabetes
1

Hi,

My 6 year old was diagnosed 4 months ago and it seems the "Honeymoon phase" is coming to an end. I have read all the books, taken all the classes, talk to experts, exhausted myself with as much knowledge as I can...... My problem is I am scared all the time. I put on a game face in front of my son, but I still cry. Worried I will make a mistake. Moms who have been through these times please tell me what helped you get through it?? Will this non-stop worry ever go away?? Any advice would help right now...

2

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.

3

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.

4

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 :-)

5

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

6

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

7

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 ■■■■ happens. If they admit sometimes ■■■■ happens then they become vulnerable to the ■■■■.
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!

8

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

9

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!

10

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.

11

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.

12

My daughter is T1 and diagnosed at 4 yr old and will be 8 in December. We discuss her diabetes all the time and we say we hate it and that it is ICKY(her word) but then I tell her that with a good diet and exercise she will be able to do what ever she wants to do. (and believe me she does) I just spent the last week sitting in a room for five hours a day with another mother of a T1 so that our kids could go to horseback riding camp with 7 other children who's parents dropped them off and went about their day. The worrying NEVER stops. I dont think it gets better either. What I can say is as time goes by you both accept your new normal and you start to see how absolutely resilient and amazing your T1 child is. I never knew until this how strong, brave, smart and just all around amazing my child really was until I saw her on the playground one day playing with a little girl she just met. They were running around and then I am watching them and they both sat down in the sand and my daughter is pointing at her pump and showing the other girl what it was an explaining to her all about Diabetes.

This may help:

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. Did you ever wonder how mothers of diabetic children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a diabetic child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a diabetic child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect -she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a "spoken word". She will consider a "step" ordinary. When her child says "Momma" for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

That always helped me. Just remember one thing through all of the crazieness YOU CAN HANDLE ANYTHING!!!! Just keep your chin up!

13

Thank you!! That was absolutly beautiful!!

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Thank You so much to eveyone who took the time to answer me!! I learned something from every response and am truly grateful to have found a place to vent and have others understand. I also respect the honesty, it did not hurt, it helped. I am so blessed to have a wonderful little boy who accepts and is proud of his diabetes!!

It is also good to learn that I cannot be perfect at this, I can quit beating myself up. Acceptance is a hard thing!! So very glad to be able to talk with people who "get it!!"

Thank you again

15

My daughter was diagnosed almost 5 months ago inher first year of middle school. I , too, am waiting for this to get easier. As she gains more independence from me with her friends, it absolutely breaks my hear to see her "keeping up" with the crowd but working twice as hard. Girls want to stop for pizza? That's a big deal for my daughter, but her friends are carefree and throw back a slice or two. Water park with her day camp? I am a nervous wreck all day and text the camp nurse to remind her to make sure she is checking, eating snakcs. Watching her prick her finger until she bleeds makes me want to scream I am so angry. Sometimes she will flinch and it is all I can do to hold back tears. I will agree with other readers, that this disease has shown me even more how incredible and strong my little girl is - a lot stronger than me!

16

Hi,Just to let you know the honeymoon period may not be over. My daughters often need adjustments when they are growing and then go right back to where we started when they are done their growth spurt. They were diagnosed three years ago and their insulin demands have not changed much. Mostly tweaking here and there. I pray regularily this helps me keep my sanity. You may not be religious but God doesn't care about that. He'll still listen.

17

Where/what is this from? This is beautiful - it made me cry. Thanks for
sharing this.

Mom to Kyle, age 14, T1 d-day 12/6/10.

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Erma bombeck wrote it. It actually was for children with disabilities and I changed a few words to work with Diabetics. I think that I had this one sent to me by someone on this site some time ago. I printed it out and I keep a copy in my wallet and I whip it out when I need a little pick me up. It reminds me that I can handle this even when I don't feel like I can.

19

My 5 year old was diagnosed in December and I am a diabetic myself. I think I obviously bring a different perspective with being a diabetic, both good and bad. It is a lot harder to be a parent of a diabetic than being a diabetic because we are constantly worrying about our child. As a diabetic, you don't dwell on the bad parts of a diabetes as much, there isn't the constant worry like a parent. Every person is different but I hit the point where I could breath normally again about 6 months after diagnosis. I still worry constantly but I feel we hit our new normal around 6 months. However, we overtest our child (which probably isn't good) but that provides us with ease. We get up several times during the night just so we can sleep. And honestly, the best thing we ever did was reach out to other parents of kids with diabetes and become friends with them. Having others that understand what you are going through is so crucial-it is such an invisible disease that most parents don't understand what they can't see it, your child may look completely healthy to them. I don't think your worry will ever go away, my parents still worry and I'm a grown married woman with 2 kids. It does get better though and you will feel settled into your new normal!

20

Curtsmom, we are headed to our 6 month mark in the honeymoon phase. I am in the same mind set as you are. My wife and I are nurses and I find myself trying to cram as much info into my noggin as I can about the disease. So much so that I feel that I am neglecting other areas of my life. As far as what helps get me through the periods of anger/sadness, I go to the old tried and tru method of exercising/meditation. There is alot that we as parents do and that will help our children thrive in this jacked up world. But we need to remember if we dont take care of ourselves now, how can we expect to take care of our children when they need us in the future? The worry wont ever go away as long as I live but I think it will decrease little by little. Keep your head up girl and remember to let the kids be kids. Which is who they are, they just happen to have this disease. My thoughts are with ALL new parents.