Monday, October 18, 2010

I want you to know something.

There are a few things I want you to know.

I want you to know, when your daughters pump ran out of insulin within the first hour of school last week…I have felt that very same anger and embarrassment that you did.

I want you to know, when your baby wets his bed at night from a high blood sugar…I have felt the same sadness, guilt, and love for my son that you do.

I want you to know, when you forget to bolus your child for dinner, and their bedtime number is 508. I have felt the very same shame and intense regret.

I want you to know, when you take out your daughters set and there is a bleeder, I have felt the same horror and sheer panic that you are experiencing at that same moment.

I want you to know, when your son goes to a friends for a sleep over…I know you have to actively push the worry and anxiety away or you would be camped out in your car outside the house…because I have had to do that too.

I want you to know, when you have had a long night and you see the mountain of bloody test strips and apple juice containers…I have felt that deep sadness you had in your heart. I didn’t want this for my children either.

I want you to know when your child has high blood sugars for DAYS…I know the pure frustration of it all. I know the anger and the helplessness that you are feeling.

I’m tired too.

I want you to know, when there is an extreme low, and your child is sitting with a blank look in front of you, barely able to speak…I have been there. I have felt the confusion, the panic and the deep worry that you have in your heart.

I want you to know that I stand in the doorway to watch my children breath in the morning too.

I want you to know that I worry about my oldest being diagnosed. I know you worry about your non diabetic children too.

I want you to know that I wonder if my children will hate me one day for all I have put them through. And even though they say they don’t blame me…I still worry about it. I know you do too sometimes.

I want you to know; when your child hasn’t been invited to anyone’s house to play…I know it isn’t fair either.

I want you to know, when your child put her set in for the first time on her own, and you thought you would burst from pride…I have felt the exhilaration of that pride too.

I don’t recognize myself in the mirror either.

I want you to know, that even though I have been to too many endo appts to count…I still get a stomach ache days before. I want you to know I am hard on myself too.

I want you to know, when your child calls you from school, and asks to eat a “surprise” birthday cupcake, and you say yes…I have held my breath too, hoping I have guessed the carbs correctly.

I want you to know I check my sugar whenever I have to pee twice in a two hour period. I wonder if you do that too?

When I see a person in the store with a pump, I want to run up and talk to that person too. Okay…I want to hug them too.

I want you to know, when your alarm goes off in the middle of the night and you want to throw your alarm clock out the window…I have been there. I have SO felt that.

I want you to know that when I hear of another child diagnosed, I feel anger towards this disease. It brings back too many memories, and makes my heart completely break in half for this newly diagnosed family. I know you feel that way too.

Remember when you walked around like a zombie with dry food on your shirt, and no makeup on for two days? I did that too!

I want you to know, when my child expresses any anger towards this disease, I feel guilty…almost like it is my fault. Even though I know there is nothing I could have done to stop all this…I wish I could take it away too.

I want you to know that I feel conflicted about all of this too. I hate diabetes. I am bizarrely thankful for diabetes. I know it has brought good into our life…but at the same time, diabetes can still suck it.

I want you to know that I secretly wish for a cure too. And even though I tell everyone I don’t expect one…I do.

I want you to know…when you think you can’t go one more day. When you think you can’t check one more sugar, or give one more shot, or tell your child “no” one more time…I have been in that place. I have had days just like that.

I want you to know that I cry in the shower too sometimes. I cry to sad songs on the radio and spend too many days with cry headaches too.

I want you to know that when I read that a child has passed away from Type 1…my breath is taken away too. I want to scream too. I hold my children closer too.

Our pharmacy is a nightmare too.

I want you to know, that the mom at your son’s school...the one who judges everyone and makes you feel awful…she goes to my boys’ school too.

When emotions run high, or low…or upside down...I want you to know I have felt all the craziness too.

I want you to know after the third diagnosis I went through a deep depression for 8 months. But now I’m on the other side of that. If you are depressed, you will come out on the other side too.

I want you to know, that I started this blog for me…and now I want you to know I write it now just as much for you.

Because more than anything, I want you to know that you are not alone.

I want you to know, that even though we are very different, and even though we may not have been friends otherwise…I worry for you. I care about you. I will always support you.

I want you to know that I will always be here for you.

When you feel alone and like no one understands? I understand. We understand. The Mothers and Fathers and the PWD of the DOC are here for you.

If you think you are alone on this roller coaster of numbers…look at those blog buttons on the side of my blog. Look at that obscenely long blog list I have under the blog buttons. We are there too…puking, screaming, crying, laughing and holding on for dear life.

We may be so different, but our hearts are the same.

You are a parent of a child with diabetes…and I am too.

55 comments:

  1. Crying. I needed that today. Thank you. So good to be reminded that I am not alone.

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  2. awww just wonderful!! just like you always are :)

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  3. Meri, I just love you. Your writing always captures the things I have in my head.

    I love knowing we are not alone.

    Thank you for this post.

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  4. Wow, isn't it crazy that we are all so different but our lives are identical in so many ways. I cried reading this and will share it with other T1 friends... thank you for "getting it" and for letting me know that I am not alone. xoxo

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  5. Stop making me cry... I do not have time for a cry headache today!!!

    This is a beautiful post Meri. I have been reminded lately how blessed I am to have found you all. Not everyone is as lucky.

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  6. Thank you Meri for this today. It's just what I needed to hear. This is a lonely journey sometimes, for us as D-Mommas and our kiddos too. We had a night like this last night - just posted about it. My heart aches today because of it, but I do know that I have troops of woman here to support me and as my favorite quote goes "I can rally."
    Thanks dear friend.

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  7. Thank you Meri -- your writing is beautiful! It's so reassuring to realize we are not alone in this journey. The d-mom blogs are the thing that has kept me sane in the 10 months since my daughter's diagnosis -- thank you thank you thank you -- I am filled with gratitude!

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  8. Reading this felt like a big hug from you to all of us, so this small comment is me hugging you back. Thank you for putting into words what we have all felt. I want YOU to know that coming to know you and your family through your posts has made my diabetes journey an easier one. <3

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  9. Thanks for your beautiful words this morning Meri! I'm so glad that I'm not alone in this journey. Don't forget that neither are you. Yes, I check my sugars when I have to pee more than 2x in an hour too.

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  10. Beautiful post, Meri! You've captured so many of the emotions we all go through! Thank you for being there to ride the emotional roller-coaster with us and for stating it all so well!

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  11. You really have a way with words...you make me cry and feel stronger! Thank you!!

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  12. Thank you, thank you, thank you for this post. My 8yo daughter was daignosed 3 weeks ago and there are times I just feel so lonely. Your words help me to know I am not alone and more importantly ...... not crazy! ;)

    Maybe I will be inspired to start up my blog again. I haven't written since my daughter got sick and was diagnosed. I just don't know what to say.

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  13. OMGsh....the pump alarmed at 2 am -- she isn't going to have enough insulin to make it through the day!!!! Thanks for the reminder.

    So glad I have you on this road. I don't know where I'd be without the DOC.

    Much love, lots of hugs, and a few tears knowing I'm alone in my house, but united in the big picture.

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  14. MUAHHHH!!! I LOVE YOU! Thanks for this big hug-a-roonie through my computer screen Meri. What a wonderfully, beautiful post.

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  15. I haven't said it in a while, but you are AWESOME. I am going to repost this on my site. It's too good not to share. Hope you don't mind.

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  16. I really feel as though you were talking just to me - ABSOLUTELY EVERYTHING you wrote hit home. You are such an eloquent writer, and because of you I don't feel so alone anymore. Thank you!

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  17. Oh Meri... how is it you always know how to speak to my heart. I've been feeling so alone in this the last few weeks and I needed the reminder that I'm not. Thanks friend, what would we do without you?

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  18. I don't think anybody can understand all of what you posted unless they too were parents of CWD. Thank you. Now if only I could get my hubby to allow himself to feel these feelings, too...there is such guilt still for him with being the parent with diabetes feeling like it is his fault for Isaac's d.
    ((Hugs)) and thanks a million. I hope you know how much you mean to me and how many of your posts and comments have helped me not get too wrapped up in depression or feeling too overwhelmed.

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  19. Wow. Amazing. True. Touching.

    Just what I needed to read today.

    ((hugs))

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  20. Just read for the second time today and cried just as much. What a beautiful reminder of the amazing comradery we have found.

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  21. after reading this, I'm not sure I will ever feel alone again...what a great post, thank you so much!

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  22. All so true, from the shower tears to the alarm clock, to the mirror (perfect, who is that??), to the "I can make it one more day"...all of it very well expressed.
    And it is nice to know we all have each other since we unfortunately have this common bond! Thankful for all D moms...that have become friends, for that...I don't feel so alone and it does make the days a little easier.
    Blessings, kim

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  23. Meri, I love you! Somehow you always know what I need to hear...today this is what I needed to hear. I hate that we understand each other...and I LOVE IT! I'm sad that so many others go through the same things and have the same feelings all because of D. But I am so thankful to be going through it with wonderful peeps like you :)

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  24. Thank you...I so desperately needed to hear every single thing you said...the highs are killing me right now. The lows are scaring the hell out of me and the story of the 13 year old boy who just didn't wake up last week is paralyzing me more than I ever thought I could be paralyzed. Thank you.

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  25. Thank you for sharing all those feelings and helping me not feel so alone.

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  26. :)

    Awesomeness, Meri. This needs to be handed out to every PoCWD, everywhere, because there's always SOMEONE feeling alone....and there's always going to be someone who's already been there and knows just how it feels.

    Hugs!!

    word verification: ovanis
    I am giving you a standing ovanis for this post! ;)

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  27. Meri,
    Thanks for posting this. It brought tears to my eyes. Sometimes it's so intimidating, so overwhelming, so scary...but knowing that others are living this life too makes it so much better.
    Stacy

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  28. Bawling. Thanks. Needed a release. Love you.

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  29. "Same."

    And "suck it" made me smile. :) For some reason saying that always helps me.

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  30. i just want to say how great this blog is.. i am a 21 year old t1 diabetic.i have had this disease for 14 and a half years and sometimes everyday can seem like day 1 all over again.. i just want to let all the parents know that your children will come out of this disease stronger than they went in.. they will succeed as i have....

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  31. I printed off your blog and took it to work today - just to give the ladies I work with a glimpse (a perfect look) into why I cringe when I see the school calling me.

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  32. And I want you to know that I am continually blown away by the awesomeness of parents of children with diabetes - present company included!
    HUGS
    kelly k

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  33. Thank you for this. Thank you for caring, for understanding, for your compassion, and for putting it all into words. Reading this feels like the big hug that I so often need. Hugs back to you.

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  34. Thanks...such a little word, but I hope you understand the sincere emotion behind it.

    Just last night I had a break down (doesn't happen often). I told my husband how sad I was for our son and all that he would be expected to endure during his lifetime. I told him how angry I was that no one "gets it." Not our closest friends, not our dearest family members. They don't live it and so I hate that they don't understand this HUGE chunk of my life. And they never truly will. Thank you for reminding me that while they won't and can't "get it." There are others out there who can.

    Thank you for opening your heart and life to all of us. It helps my troubled heart so much. Thank you for educating others and for championing "our" cause!

    Thanks.

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  35. Hi Meri,

    I'm friends with Kim Duckworth. She told me about your blog. My name is Jennifer and I'm married with three kids. My oldest son was diagnosed on Labor Day last month. He's twelve--which is a huge blessing.

    I've been thrown hard and fast into this life and I already understand most of the special language of a diabetic family. We're creating some sign language as well so that I don't have to yell, "Nick, check your blood" across the room at youth group or soccer practice or at a school dance :) Instead I can just signal him.

    Anyway, he's in honeymoon right now. It's such a teaser. I have no idea how long it will last.

    I'm enjoying your blog. I can't imagine going through this with younger kids. Nick has been giving himself his own shots, counting his carbs and calculating his dosage since we got home from Oakland Children's. I just supervise him and I take over when he wants a break.

    You're right that there are good things that go along with diabetes. I feel that every day with him is a gift even more than I used to. I also feel content when his numbers are good and quite discontent when they're not. It's frustrating. I hate that I check to see if he's breathing at night. It makes me sick.

    The hospital found out that Nick also has Hashimoto's disease (low thyroid). The thing that makes me happy is that Nick is thriving now that he's back in balance. He's "healthier" than he was.

    Anyway, just thought I'd say Hi. Thanks for writing your blog. Jennifer

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  36. ditto and ditto. I so needed this. Love and hugs to you Meri youre so amazing!

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  37. Meri I have been having such a rough, emotional time dealing with D lately and you have no idea how much this post touched me. It's perfect. I cried my eyes out reading it, but it is absolutely perfect. By far one of the best things I have read. Everything you said, I understood. Every single word.

    Lots of love to you. It's hard dealing with this awful disease, but I am SO glad I found you and all the other D Mamas to share everything with.

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  38. I may not be a mom of a diabetic but I am a type 1 diabetic who is about to be a mom and your post really touched me ... thank you for writing this. <3

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  39. Really needed to hear that today Meri. Think I better print that one out and tape it to the fridge! Thanks for the support. D is wearing me out.

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  40. I think I may be the last one to read this and comment, and surely what I have to say has been said before. Nonetheless...thank you for another wonderful post! This sums it up so beautifully and really does make me as though you're right by my side. There is tremendous comfort that comes from knowing I'm not alone and that you and others get it.

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  41. It's just as good the second, third, and fourth read.
    Thanks again.

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  42. I love you so much Meri. You are such a blessing to all of us.

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  43. Wonderful Post Meri....love ya!

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  44. Hiya
    I have followed your blog since searching for info on living with an insulin pump, I have four girls but only one with D.
    These words are wonderful, tears and hope.
    I would love your permission to share this - with full credit- with the mums on a forum in the uk
    Rachael

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  45. I want you to know as a woman who's had diabetes for 23 yrs since I was 9 that I appreciate you for all the hard work you put into your diabetic child(ren) even though it is overwhelming. I can't imagine how worrisome it must be to be a parent in that position. When my 5yrs kept telling me how thirsty she was and had to go to the bathroom so often it took me 5days to get the guts to prick her finger because I thought I'd passed on this horrible disease. But as an adult who had diabetes as a child and seen my mom be that rock I want you to know from the other perspective... the child's perspective looking back... we appreciate you all. I appreciate you coming in at 2am to prick my finger as I slept to make sure I would be ok all night and not slip into a low blood sugar. I appreciate you giving me Apple juice and peanut butter crackers to eat and stayed by my side to make sure I ate them even though I would fall a sleep while eating them. I appreciate you being there as I got older into the teenager years and sometime got frustrated and cried at my disease because I sometimes just wanted to be normal. I appreciate you making sure I had a roll of lifesavers or raisins in my pocket or purse at all times and especially while i was traveling with the band to football games. Thank you for allowing me to have that normalcy even though i know you was worried to death the whole time i was away. even though I sometimes wanted to blame my mom for this disease, I knew in my heart it was not her fault and it wouldn't be fair for her to give up her dream of having children like every other human because "it ran in the family." I appreciate you mom for not letting that fear overcome your life. I appreciate the strength you showed me in dealing with a child with diabetes. I know it's not easy. .. the worry... the guilt. .. But you always seemed strong to me. Even if you felt bad, you never let me see it. You stayed strong in front of me and showed me the strength I needed to have when I got down and sad as an older teenager and adult. I am thinking of my mom who got me through it from 9 years old to now and I'm 32. Even now when I get lazy about taking care of myself (ie putting in my cgms or taking bllod sugars) she comes to my house and makes me sit down and do it with her there. I love you and respect your strength. You all are the strongest moms I'll ever know and I want you all to know from our perspective we appreciate you. I've talked to friends I've met who had diabetes as long as I or close to it and sometimes they lash out at their parents or blame them but that anger is short lived. We all appreciate you! Please know that. Now I'm going to go call my mom and tell her all I've told you!

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  46. How is this the first time I have ever seen this??? Thanks for sharing. And I have been there too....on ALL counts.

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  47. I'm so glad a friend pointed me in your direction. Thank you for expressing the feelings we all have. After 42 years with my T1 child, I still feel all those crazy, conflicted, heart wrenching feelings. Will it ever go away? Not unless there is a cure. My hope is for this generation to not have to live with this as long as we have. Sally

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