To My Dear Friends,
It's not you.... it's me.
I know that sounds like a line. And so often - it DOES mean "It's toally you". But in the world of diabetes - where nothing is as it seems, where what's up is down, what's right is wrong, and what's left is right - it's often the things that make the least sense that are, in fact, the truth.
You see, when diabetes entered our lives, I didn't really get it. I really thought that when we got home from the hospital that sooner or later we could pick up our life where we had dropped it a week earlier. I thought, like everyone else, that we'd get her under control and things would go back to normal.
I mean, I knew it was going to take a little extra. I just had no idea.
I kept waiting for when I could stop checking at night. Waiting for the fear to go away. Waiting for it to start making sense. Waiting for diabetes to stop consuming my every thought.
It's been almost 2 years. I'm still waiting.
At first, it seemed like it WAS back to normal. Sort of. It just hadn't hit me yet.
In some ways, the more time we spend fighting this disease, the harder it becomes.
My grief didn't start right away. Oh, I thought it did. But I was wrong. I'm still working through it. Some days are better than others.
I know you wonder what's going on with me. Why sometimes I'm so distant. Why I don't return calls or emails like I used to. Why I seem like the same person... just a little off. Or maybe you wonder what happened to me? Where I went?
I wonder, too.
It's just that sometimes it's SO HARD.
Sometimes it's so hard to be around people who DON'T live with diabetes. Sometimes it hurts to watch how easy the simplest things are for you. Like feeding your kids. Or having a date night. Or getting together with friends. Or.... well, you name it.
Sometimes I feel like I speak a different language now. One that no one else understands.
Sometimes it's just so difficult for us to do the easiest of things. Excursions take planning and packing. We can't be so spontaneous. We have to consider so many things....
And sometimes I'm just so tired.
I don't mean to pull away from you.
It's just.... I feel so very "high matience". And that makes me feel guilty. I feel guilty that it's hard for us all to get together because we have trouble finding a babysitter. I feel guilty that you have to work around our schedule. I don't like that.... Sometimes I think it's just easier for you to get together without me.
And did I mention that I'm just so tired?
Sometimes I have nothing left to give. At the end of the day, I'm done. There is nothing left in the tank. I have no energy left to talk or email or hang out or anything.
But I know - It's been so long. We used to get together all the time. And now I can't remember the last time... And that makes me feel guilty, too.
Sometimes I feel so empty.
Sometimes I hear you talk about your life... and it just feels so different from mine. It didn't used to be. It makes me wonder what happened to MY life. But now it is so different. And that's hard. It hurts. It stings. I don't like feeling that way.
Sometimes I feel so alone.
And I don't want to be "that" person. You know - the one that makes you feel like you have to walk on eggshells because you might say something wrong. The one who makes you feel sad or uncomfortable.
So I try to hide it. I laugh in the right places. I smile. I say I'm fine.
But you KNOW me. You know that sometimes I'm not fine. And you know why...
But neither of us knows what to do about it.
Please don't give up on me.
What you do does not go unnoticed. And I need you now more than ever before. But sometimes I just can't express it to you.
Thank You
Thank you for keeping after me. Thank you for not letting me pull away. Thank you for being there for me when I have trouble being there for you. Thank you for not letting me fall off the radar. Thank you for offering to help. Thank you for caring. Thank you for checking on us. Thank you for being such a wonderful friend - even when I can't always return the favor. Thank you for putting up with the glazed eyes and the unfocused attention and constant forgetting and the fact that I've been MIA so very often.
All I can offer is this...
I'll keep fighting. I'll keep swimming and I'll keep trying to find myself. Maybe we won't get back to where we were... but maybe our new friendship will be that much better.
You - Just bear with me. And PLEASE- don't take it personally.
Because really -
It's not you. It's me.
But I'm working on it.
You know, last night I was at a family party...and I saw a lot of extended family I don't see very often. Many of them asked about the boys, and I spent most of the night telling them how awesome the boys are and how diabetes isn't much of a big deal. I don't know why I played it down so much! Afterwards I just shook my head at myself...why? Why did I have to tell these people how ok we are? Why did I have to play everything so cool?
ReplyDeleteI've come to the conclusion that I didn't want them to feel sorry for me/us. I couldn't tell them how it really is. I mean, do they even want to know how it really is?
I guess it is something "I" have to work on. I left those people with them thinking diabetes is all unicorns and rainbows. Yeah, I've got issues friend! Your letter is very sweet and speaks from all the hearts of the D mama's that read your blog. It isn't them...you are right. It is so us. It is so me.
WOnderful post Hallie! I am struggling with being around or talking to certain people cause I feel they just dont get it..sadly not many try.
ReplyDelete((hugs)) I get it...
Perfect.
ReplyDeleteI need to find a tissue...because I've wanted to say these things to friends for so long.
Thank, Hallie.
It's SO me.
Wow. Just wow. That was so perfectly said...so many of those things have been swimming in my head. Thank you. ((hugs))
ReplyDeleteI know its me. I don't feel like I "fit" anymore. My life is so much different than it was 2 years ago. I'm too tired to try...
ReplyDeletegreat post Hallie :)
Your posts are so timely, Hailee. You often convey EXACTLY what I'm thinking. I'm sharing this with my D Mums Down Under.
ReplyDeleteBig Love, and I think I saw that it was Sweetpea's birthday over the weekend? Please give her a big hug from us. xxx Kate and D.
Thanks Hallie...I am not good with words and yours just gave words to how I feel. I can do this because I know I am not alone, even when I feel like it most times.
ReplyDeleteAw Hallie...PERFECT POST. This is definitely a "touchy subject" that you handled with grace and you said it all so well.
ReplyDeleteI hated feeling like I should "have it together" within 6 months after Joe's diagnosis, a year after Joe's diagnois...18 months after Joe's diagnosis. It was embarassing to "not be there" physically and emotionally for all of my buddies. I used to be the life of the party...I used to be a strong supporter of those around me...I used to be the one who would listen to those in need...that all stopped on 9/17/06. My life changed. I changed. I lost part of me. My family and friends lost part of me. Luckily...a new me...a slightly crazier...and stronger me...emerged. It has taken time. It has taken great effort. And...I still lose myself in the "D" game now and again...over 4years into this.
LOVE YOU.
Wonderful post...I can really relate. I have been thinking and feeling the exact same thing the last couple of days. I just feel so alone and like I can no longer relate to anyone else (unless they are a parent of a child with diabetes). It's a lonely feeling.
ReplyDeleteWell said, Hallie. I understand how you feel. We've simply accepted that life revolves around Sarah's diabetes. Our social life, our choice to homeschool, where/what we can eat, everything. I just wanted to let you know that you're not alone.
ReplyDeleteGirl, do I understand. : )
ReplyDeleteIt does get better. I remember not ever going out-and I had a bbsitter who gave Mary Claire a bolus for food when she was 57!! (I never asked her back) (she was young, and didn't understand)
Now, we have two reliable babysitters, and my mom can follow good directions. I just post "call me if she's not 81-124" on the note! and I'm totally on the phone the whole time...but it's worth it! : ) It gets better when they can check themselves and use a cell phone too. ; )
I promise it gets better.
Praying for you to find a good babysitter, and enjoy your husband and friends. If you want to head down our way (Arkansas), I'll watch her for you. : ) She'd have fun with our circus! heehee
My Mum is Britsh - and we tend to have a way about us where we don't express our true feelings. I'm luckily not that way - total opposite (I'm a freak). The reason for my comment here - my Mum has never really told me how she found it being my caregiver as an infant. I know she did say - that today there are so many tools that parents have to know exactly what is going on in our bodies as diabetics compared to what we had in the 60's - that it probably is very worrying. I always wonder what it would have been like for her if she'd known other Mum's of diabetic children - but she was all alone.
ReplyDeleteIt's so good that the D-OC is around - that we're able to touch base with others that "get it". Hang in there - with time and the way you do things now for your Princess - she will thank you for all of what you've done.
I thank my Mum and all of you great D-Mum's out there and am giving you a ((( virtual hug ))) (though I know in reality my Mum would be going "ugh" at this display of affection ).
Hallie-
ReplyDeleteHUGS to you! I don't have a child with D, but being PWD I still understand what you mean. Thank you for your honesty. I think it's so much easier to hide the pain we go through everyday. I know it sounds obnoxious, but things will get better, the longer she has D. It will still be hard, but because of all you have done, she will grow into a very capable adult. You are wonderful. My prayers are with you! Thanks for being my D Mama Friend! :)
Perfect. SO perfect.
ReplyDeleteIt's me, too.
I have struggled with this issue for quite some time. I know that I have not handled my feelings... and the feelings of my friends with as much grace as I should have.
I love that in the end you thanked your friends for sticking by you. I need to do that too.
Once again, THANK YOU, for putting into words something I've tried to casually portray with my friends. I don't ever know how much they really want to know how my day is going when they ask, even ask how my daughter is doing with it all. I went out to dinner with an old Moms group I used to be apart of and so involved in before D, and now it is so hard to face them. They think it is a big joke that I joined them for dinner when I haven't hardly seen them since "the day" (9/2/09). I spent the entire night holding my tongue unless directly asked how she was doing with diabetes, and even then I kept it at a minimum. Instead, my Mom has reminded me to take the opportunity to inform and educate all of those people out there that have no idea...and let's face it, that's everyone that doesn't have a diabetic child, and even more specifically, a toddler. Everyone that offers to watch my child, is so kind, but it will never work and they will not know how to take care of her without hours of training...and even then, it is only if they care enough to understand how serious this disease is. No one seems to get that we live, day to day! Day to Day, people!! My letter might look something like: "Cut me some slack, people. People, that I used to call friends!!! Sorry, now I'm starting to vent a little.
ReplyDeleteAnyway, thanks for sharing this awesome letter.
I've been wanting to write this letter for awhile now, but never could have said it so perfectly. Thank you for sharing!
ReplyDeleteOh yeah, IT'S TOTALLY ME my friends! I miss the old me too.
ReplyDeleteReally great post Hallie. You said so many things that have been through my mind. Also made me ponder..WHY is it that I tell others how "great" Ally's doing? Is it that how she is doing is a reflection on me? Or is it that I don't want to sound like I'm looking for pity?
I have been struggling with this as well. I'm tired. I'm exhausted. I'm drained. I don't feel like the "me" I know used to be there. I'm more jealous of non-D people and their flexible lifestyle. I have zero sympathy for my friends when they complain about being sick for a few days. And I don't like that person...that tired, jealous person who doesn't feel like my "normal" self. Some days it's easy and no big deal...some days it seems difficult beyond comprehension and it IS a big deal and all I want to do is cry. Thanks for letting us all know we're not alone! You're not alone either! :)
ReplyDeleteHugs Hallie.
ReplyDeleteI think 4 years of this has numbed me a little, but it still is maddening at times.
Know that each and every day we are here with you, and for you.
Thank you SO much for this! I love your blog, but this entry really gets to the heart of the matter when it comes to OUR friends. I often feel guilty because I don't return a message on FB or return a phone call - I never even "got it" myself, so you brought me into a bit of self-realization. My son is 4 years old and was also dx'd almost 2 years ago, so I am truly in the boat with you! But I will keep fighting right along with you...and pray for both of us!
ReplyDeleteHallie, I love this post. Did I write it? : )
ReplyDeleteJust today I was thinking about a friendship that has become very distant. She just doesn't "get" type 1 and.....that makes it hard.....but you understand, huh?
Reading your post--and the subsequent comments--has made me realize that this disease creates parallel lives. I mean, you took the words right out of my mouth. It's amazing. Sad, and yet comforting. I think I need to frequent your blog a little more often than I've been, just to know that I'm definitely not alone....especially when I don't want to burden friends and family.
ReplyDeleteThanks for writing and sharing with us.
This was my first visit to your blog. Thank you for this post. You have said so beautifully things I have been thinking but didn't know how to express.
ReplyDeleteIt's not you, it's D! ;)
ReplyDeleteGreat post, as usual.
(((Hugs))
Hallie, I'm not a D-mom but a very good friend is. She pointed out this post and after reading it, I wanted to thank you for helping non-diabetes folks understand a little better what our friends and families go through on a daily basis. When you use the word 'grieving' it was a real eye-opener... because reading your words, you were describing me too, grieving the death of my sister (2005) and my father (2011). That really is the truth, that you feel empty, guilty, tired, etc. Sometimes those of us without Diabetes in our lives forget the struggle you go through every day and how it affects every aspect of your life and your families' lives... Thank you so much for giving a new perspective to a scary disease. I find that most people think it's not big deal because those suffering through it try to lessen the severity by saying 'oh we're fine, things are good, etc' when in reality it's a very frightening existence. You are all very strong women and I commend each of you!!
ReplyDeleteI couldnt have said it better! Although it is my husband who is diabetic, not my child, I still feel the same. So alone. So drained. So tired mentally and physically. I don't think people understand why I am tired. In fact I know some of my own family don't get it. It is so frustrating! Great post :)
ReplyDeleteHow have I not commented on this post? I know I read it! Ugh.
ReplyDeleteAnyway, AMAZING job, friend. You said what I think all the time. It is definitely ME and not my friends.
I just came across your blog today and I can't seem to pull away. I can relate all to well. Our daughter was diagnosed almost a year ago at the age of 2. We are not on a pump but your diagnosis, letter to friends scariest night of your life ugh! It made me cry reading all of it. Your blog is perfect makes me know we aren't alone. Keep it up! Good luck to you and your beautiful family!
ReplyDelete