Thursday, March 8, 2012

What no one will tell you in the beginning

I'm not gonna lie to you. I won't sugar coat it. I am going to lay it all out on the line for you. Not in an attempt to scare you or give you nightmares...but rather in an attempt to prepare you...to help you...to shine the light on it all for you because I really wish that someone had been there to shine the light for me and be honest from the get go. So, if you are not a fan of the truth or blatant honesty...then please read no further.
This life with diabetes is hard. It will always be hard. It will never be how it once was. The way that you lived your life before diagnosis will never be again. Those days of carefree easy freedom are gone. The days of having your biggest worry be whether or not your child behaved at school are but a mere memory now. You will long for those days. You will bargain to get them back. You will pray for them to return. You will cry. You will cry. You will cry. You will never have a decent full nights worry free sleep again. It just will not happen. Do NOT believe the doctors when they tell you that you do not need to check your child's blood sugar overnight. You will never kiss your child goodbye as you drop them off at school, daycare, etc the same way again. You will linger with that parting hug just a bit longer...holding them...staring in their eyes to search for any signs of impending low blood sugars once you are gone. You will never look at activity or physical exercise the same way again. You won't see it as a "good way to burn off some of their never ending energy"...but rather as falling blood sugar numbers and "how long have they been running around? Do they look pale? Where did I put that juicebox? You will never look at food the same way again. It will no longer be about quickly grabbing dinner on the way home...or skipping lunch because you are out busy running errands. It will be about pre-planning, measuring carbs, giving insulin at the proper point in time to combat high blood sugars, making sure the restaurant has nutrition guides to help you determing carb counts, and guessing...always guessing. Life will never be about the black and white obvious clear cut answer anymore. There is no book or manual out there that you can reference to get a specific answer to your detailed questions. There are only guesses...some guesses are more educated than others...but they are all still guesses. You will learn that doctors, nurses, and all other members of the medical field do NOT know as much as you once though they did. You will learn that over time, you will probably know the ins and outs of diabetes management better than they do honestly. You will learn that diabetes doesn't play fair. It doesn't follow any rules but it's own. You will learn that what works one day, may or may not work the next day. You will learn that nothing is for certain. You will learn how to plan for the worst case scenario...all the while knowing that you really have no idea how you will react if that scenario ever actually comes to be. You will learn that you and your child will be judged. You will encounter ignorance. You will encounter rudeness...discrimination. You will learn that you have to choose how you react to that ignorance...you can either get angry and stoop to their level in response....or you can get angry and educate them instead..advocate for your child instead. You will feel like a broken record...repeating the same few lines over and over again to the ignorant masses. My child did not get diabetes from eating too much sugar. My child can not be cured just by not feeding them foods with sugar in it anymore. My child CAN eat anything. My child CAN do anything. No she will not grow out of it. You will be sad. You will cry. You will cry. You will cry. You will feel what true exhaustion feels like. You will be jealous of parents who have children that are not type 1 diabetic. You will feel like you can't relate to those parents or friends anymore. You will find out who your true friends are. You will find out who will be there for you in your time of need. You will find out who actually cares and who could really care less. You will feel like you just...can't....do...this...anymore.........................

but you can.

You will learn that no matter what life throws at you, you and your child CAN DO THIS. You will find out that you are a lot stronger than you ever thought you were. You will see that your child is stronger and more brave than most adults. You will see that while yes this life is hard.....it does get easier. You will find comfort and solace in the familiar...the routine. You will gain confidence as the days go by. That is where you will find things a tad bit easier....in the confidence you gain. You will find comfort in others. You will feel a connection...a bond with other parents going through this same thing. You will gain a new family in them. You will find yourself wanting to help them...going out of your way to help them...to help their child when they are struggling. You will find yourself crying with them, laughing with them, proud of them. You will feel a connection with your own child that would otherwise never had been possible. You will get to know how their body reacts to things...foods, activity, emotions, stress. You will learn their patterns. Seek out the patterns for they are your key to finding some sanity. You will realize that you CAN do this. Sure there will still be days that pass where you feel like diabetes has knocked you to the ground...flat on your face..beating you, but those days will pass...the sun will come out tomorrow and shine on a new day. You can do this. You will cry, you will smile, you will feel pride, joy, anger, sorrow, jealousy, grief, exhaustion, fear, stress, pain.......you will feel all these things and more...to such an extreme level as well. Please do not ever forget, you can do this....you ARE doing this....you are strong...and you are doing this.

30 comments:

  1. Well put, my friend!
    This totally needs to be on the must read list within the first 24 hours of a new diagnosis. :)

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    1. My son was dx last saturday. Thats all I can Say.

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    3. Karen, This is painfully new in your world...I agree 100% with everything said. My son has been living with type 1 for 5 years now. He was only 2 1/2 when diagnosed. I thought my world had ended. Some days I didn't think I could do it...I promise, focus on the last paragraph...It will get better. You will find your groove, it wont be perfect, but I find if I focus on the positive I handle it better. If I dwell too much on the things I cannot change...I begin to lose it. You can do it and you will find that you have an amazing child who will be different from any other child you know...simply because your childs childhood has changed. You can do it, reach out to others and find your strength through them! You are not alone in this!

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  2. Amen! Amen!! AMEN!!! To EVERY WORD of this... THANK YOU so much for writing and sharing this with us.

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  3. Love the raw honesty in this! It is perfect. And we are family. So thankful to have found this family to help me remember that we can do this!

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  4. Absolutely amazing post! Great job!

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  5. Wow, did you hit the nail on the head. It's been less than 2 years since my daughter's dx, and I am so tired, but I'm learning how to cope. Thanks for expressing it all so well.

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    1. me too. It's never easy but you do learn that life goes on and your kids do adjust to the treatment. My son is basically my hero he deals with finger pricks like it's putting his socks on at this point(almost a year and half after diagnosis).

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  6. I love your blog!!!!!!!!!!!! Thank you for writing that! I share all those thoughts and feelings, both my wife and I do. We know times 2. I really needed to read something like that tonight. Godspeed!

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  7. I love the second part. That's what it's all about - encouraging people with a newly diagnosed kid. Life with diabetes can be hard, and people who are new to it do need to hear that a) they CAN do it, and b) they are not alone.

    I would disagree with much of the first part, though. Too much information, really. Personally I would have been knocked sideways if I'd read this when Isabel was first diagnosed. It worries me that vulnerable Mums will read the first part and maybe not get as far as the second.....and feel like they are going to go under. I know you are being honest about the way YOU feel about it (and I know many others feel the same) but I would suggest one small change - replace 'you WILL...', with 'you MIGHT....'. See, the thing is that not everybody WILL necessarily go through those feelings or even develop them, over time. I didn't, and I know many others who haven't developed them either, or started out with them - either through a conscious decision, or just because that isn't the way they feel about diabetes, or that's just not the way they are as a person.

    Yes, you MIGHT never sleep a full night's sleep again - but then again, you MIGHT decide that if you don't sleep, you can't function properly to look after the family the next day/put in a full day's work the next day/etc. You MIGHT be jealous of parents with children that aren't T1 - but then again, you might not. (I am not - I won't let myself be taken over by diabetes to that extent. Anyway, other parents have other issues to cope with - some are worse than diabetes, and I feel very blessed that our situation is not any worse than it is.) You MIGHT test your child every single night on the advice (or not) of your endo and other D-Mums - but you might not. We don't, and we feel that is perfectly OK. Again, it's a decision that my husband (also T1) and I made that we will NOT let diabetes rule our lives. So it doesn't. But it's OK to do test overnight if that's how you feel, too. It's OK to feel all those things - perfectly OK. Everyone is different in how they deal with their own personal situation.

    I have been judged in the past because I've spoken out and said that, actually, I don't feel like the feelings described in the first part. I've been made to feel as though I'm uncaring and unsupportive of my daughter whereas actually it's just the opposite. I want her to grow up to deal with her diabetes maturely, confidently and with grace. I just deal with things differently. Everybody does. As they say - YDMV (Your Diabetes May Vary). So does the way you deal with it, surely. So, it's not as simple as saying 'You WILL....' etc. Not everybody WILL do/feel all those things. They MIGHT. And if they don't, or if they do, that's OK.

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  8. My first reaction: sobbing at my desk (yes, you're right about the "you will cry")
    My second reaction: you are right - and Kerry C is right too. One of the biggest lessons that I've learned in nearly 5 years of dealing with my 8 year old daughter's diagnosis is that each family needs to call the shots for its own coping strategy. Like Kerry's, my husand is also Type 1 (for 10 years) and this colours our experience. I'm the only one in our small family NOT to have T1D - but I have three other auto-immune disorders so may well end up with T1D too. Diabetes doesn't control our lives, we don't want to talk about it endlessly or spend ages on online forums comparing notes with others. We rarely test in the middle of the night -but maternal instinct (god knows how) sometimes wakes me up to test when she needs it. But we respect those that do get up every night and if that helps them sleep easier the rest of the night, fine. The thing is to find the balance that works best for you and your child and your family. Whatever gets you through it is the key. We are blessed to be smart enough and affluent enough to cope with the endless mental arithmetic and guesswork and are so far unscathed. My heart bleeds for those who are not mentally equipped to cope with its challenges - it's no respecter of intelligence, when it chooses its victims. And whenever we're in hospital - which we have been, occasionally, in a crisis, not always D-related - I am so moved to see the suffering of children with the many much worse things there are to have than diabetes. In all of this, I keep coming back to one of my mantras - there's always some poor person worse off than you. That may not be the most positive take on it, but hey, whatever gets us through another diabetic day, eh?

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  9. Seven years for us this june. Still exhausted! Now 3rd grade and taking state exams at school. I am finding out how mental concentration really does affect blood sugars! Thank you for your blog! Susan, mom of Ben
    (D.O.D JUNE 10, 2005)

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  10. You could not have said it better. My son, Phil, is now 30 years old and has no complications from diabetes -- for all you moms out there. He was diagnosed at 7 months of age with Type 1.

    I was with a counselor last night who promoting her work with a Type 1 mom. The daughter was newly diagnosed. I could not say anything, but was thinking - you have NO idea - NONE. Too bad I did not have this blog post. I was vigilant with my son's diabetes and he grew up to be the same way. So keep on keeping on. You WILL survive, albeit not much sleep, and your children will thrive. And it is true -- I would wake up in the middle of the night with the 'mom vibe" , test, and he was on his way down. So trust yourselves -- especially when you deal with doctors. You KNOW.

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  11. Good post, its like you're in my head.

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  12. You hit the nail on the head. Amen sistah. Amen.

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  13. I always wish I had the presence of mind to tell newbies;

    "You will be Okay."

    Julie Keon writes that about cerebral palsy. http://www.whatiwouldtellyou.com/

    I really doubt any parent know what they are in for when a baby is born. What nobody says is how much it is about the learning and changing we do as parents. When a chronic condition get factored in that learning and changing takes on even more unimagined dimensions.

    I guess sometimes we need to say "You will be Okay" to each other as veterans on the journey.

    You are gonna be Okay. We have you back and know that your have ours.
    http://www.ydmv.net/2012/02/who-best-to-say-you-will-be-okay.html

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  14. Yup. It all rings true with me. Excellent post. And I think most parents could handle this shortly after diagnosis. I think it's worse feeling all those feelings by yourself and not knowing just how normal and common it is to feel them. That's why I reached out to the DOC. I needed to know that this is as big a deal, as scary, as hard, as unfair, as constant, as worrisome, as unbelievable, as heartbreaking as I was feeling. Thank you for this.

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  15. Wow. If anyone has ever wanted to truly understand what it is like to be a parent of a child with type 1 diabetes, they just need to read these words. Written so powerfully from the heart and echoes the thoughts and emotions of this T1 mom perfectly. Thank you for writing what I’ve been feeling, for the last 9 months, but have not been able to put into words!

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  16. So glad you wrote this,love it. My daughter was diagnosed 8months ago. I hated all the new lingo as well Bolus, Basal, ketones, different Insulins (Novolog, Lantus, Levimir, Humalog etc.), Insurance issues, durable medical equipment, copay tiers. It is all so overwhelming.

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  17. thank you for your voice. this is exactly what I wanted to hear and what I hope to share with anyone new or not. thank you. we laugh love and cry with our T1 friends daily. all over the world!

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  18. I love this post.... Yes its a tad scary to read in the start but then so is having a child diagnosed with T1... I, like you, wish I had been told just how awful it was gonna be by someone who had been there as a parent but could then then reassure me that I WOULD cope and find it 'normal' soon enough... That's exactly what you;ve done with your post... I think u can lose sight of things with a diabetic child in the family - its so much stress and negativity on times that its hard to see a way out from the gruelling schedule of it but your post helps me realise that actually - I KICK ASS!!!! and I dont have to b ruled by Diabetes I can fight back!! THANK YOU X

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  19. Here, here! As a fellow MOD (mother of a diabetic) I am with you all the way. Lets never stop talking about this until our children are insulin independent.

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  20. Thank u for writing & sharing such a GREAT post!! I'm so grateful to b living in the second part of this post as the first part was slowly killing me until I got professional help. I needed to understand that for whatever reason our daughter's soul chose to have D. It's part of her journey. I had to accept it. Even more important; I had to forgive D. Forgiveness does not mean liking the situation, but it allowed me to move on w my life....and have a life. Thank u again for the educational post!!

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  21. YUP...100% TRUE the Good and the Bad. Great post my friend.

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  22. What an awesome post. We just celebrated my daughter's 7th anniversary with diabetes, and still I cry, I cry, and I cry sometimes. Just as we get complacent, we have the worst A1C ever. What we fear is the unknown, which is why I think some of the moms who have husbands with type 1 have an easier time than those of us who don't. I think both parts of the post are equally important. It's nice to know others cry, it's nice to know things do get better and easier but that there are still challenges. Thanks for a wonderful read and yes things do get better; Sam is about 600 miles away from me right now on a weekend school trip at age 13. And yes I will always worry.

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  23. Very well written. I was diagnosed at the age of 6 - and luckily I had a great family to help make me aware that diabetes didn't have to stop me from doing ANYTHING I wanted out of life. I actually think it's made me a better person - now as I enter into my 45th year with it - am wondering - what will be my next adventure in life (I really REALLY want to jump out of an airplane with other diabetics - and form a blue circle in the sky ... first I have to get over my fear of jumping out of a plane - I can do it, I can do it ... oh and save up some $$$'s for it).
    FatCatAnna from Diabetes1.org

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  24. What a great read, and so true! Much of the same can be said for adults newly diagnosed with Type 1 Diabetes. Although life has not been, and never will be, the same since my diagnosis just a year ago, I've learned a lot in that time and will not let T1D rule my life! I have 3 daughters (17, 21 & 23) and a 3-year old granddaughter, and I hope & pray they never have to go through this themselves!

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