Take a minute and listen to this song...
The first time I heard this song, I think my breath just caught in my throat. The music is haunting and it speaks to a part of me that is so real and so needed to hear those words.
You are Not Alone.
This song explains perfectly why I blog about our life with diabetes.
I want you to know - You are NOT Alone.
This disease can be so isolating at times.
When Sweets was first diagnosed I felt so alone. No one knew anything about Type 1. No one knew what to do. No one knew how to help.
Who could I turn to? None of my friends or family had ever had to hold their three year old down five times a day to give her shots. There were nights where she would scream and cry and it was so awful... I would be in tears by the time we got her meal shot and Lantus done and I would think, "How am I going to keep doing this?"
One blood sugar test blurred into the next and our nights were spent setting alarms and testing. Our schedule was rigid. And the things that were once easy and normal were no longer.
And no one knew what it was like.
And then she went to preschool and again I felt so isolated. Other parents worried about their kids but no one understood the kind of worry I had. No one understood being "on duty" 24/7/365. No one understood that even the RARE dinner out with my husband was not without phone calls and questions and diabetes on the brain.
She got older and she started to feel it, too. She didn't want to be the only one with diabetes. She didn't want people to see her pump or her cgm. In a school of 500 plus kids, she was the only one.
There were the field trips where I was there tagging along - not simply because I wanted to go but because I HAD to go or she could not. The treats at the farm that other kids scarfed down happily without a care in the world but we had to test first and get insulin.
The classroom parties, the birthday parties, the play dates, the swimming pool .... making it happen for her. Making sure she was doing what she wanted and what everyone else was doing. But it also meant getting out of the pool when you didn't want to because you had to test or reconnect for basal. It meant not eating the pure sugar pixie stix and not just sticking your hand into a bag of chips or a box of goldfish. It meant not carrying around a cup of milk and taking an hour to drink it. It meant waiting to eat until Mom had tested and counted carbs. It meant not really listening while all the other mommies talked because I was watching counting said carbs or watching closely to make sure that the rollerskating fall was just a fall and not a low.
There were the gymnastics lessons where the others mothers talked about their kids and I had nothing to add. Nothing to share. I was too busy watching, keeping an eye on Sweets because she was without the cgm. And their talk of sleepovers and their worries about their girls were just so different than mine.
The parties where the kids start asking to sleepover and no one invites the child with Type 1.
The stories from friends about their vacations and date nights and I have nothing to say because I can't just leave my child with someone. I can't talk about that new movie or that new restaurant because we haven't been there. We haven't done that.
Three years in. And my life is so different now that it was before.
Three years in and I still feel alone.
I still sometimes have nothing to add to a conversation because my reality is just so different. I still struggle to feel like I have something in common with the people from "before" I still feel like we are an island and no one really gets what our lives are like.
I still laugh and smile and pretend everything is ok.
When it's not.
When I've been up all night. When I'm worried that her blood sugar isn't coming down fast enough. Or not going up fast enough. When I'm trying to decide if I need to pull the site or do something else. When I'm counting carbs in my head. When she has ketones. When she's throwing up. When I'm afraid that something minor to practically everyone else is going to send us to the ER.
I tell you all this to tell you that YOU ARE NOT ALONE.
Because even when I FEEL like I'm alone, I'm not. And neither are you.
Even when I feel like I'm just faking it or feel like I am never going to make it.... I know I will. And you will, too
Thank the Lord for the Internet, and blogs, and Facebook and Twitter. Because of that online world, I can connect any time day or night with someone who is living this life, too. Someone who lets me know that I am not alone. Often, many someones!
It's not easy. No one ever said it was.
It gets better. But we all have our moments.
When it hits us. When we want to crumple into a little pile on the floor.
And when that happens, I want you think of this song. I want you to feel those arms around you. And I want you to know that you are not alone.
I can't take it away. I can't change it.
But I can be there and hold your hand and walk beside you.
And I will. Until there is a cure.
** Jamie Grace is an incredible Christian musician just at the start of her career. She is 20 years old and has written most of the music on her cd, One Song At A Time . She is no stranger to feeling alone. She was dx'd with Tourette's Syndrome at the age of 11. She began a group called "Teens with TS" so that no one would feel alone who is struggling Tourette's. Check her out - she is awesome! Sweets and I have both memorized ALL the lyrics and love every single song on her new cd! And we are planning on seeing her in concert this fall (forget Tobymac - we are going for HER!).**
Timely post as I am awake at 2:45 am waiting for Adam's bg to come down....love this community!ReplyDelete
powerful and so very true!ReplyDelete
we forget sometimes that there are hundreds of others out there battling along side us...thanks for the reminder!!
Just want to share something. This song has given me much comfort:The Beatles "Let it be" God bless you and your family.Delete
I felt so alone at first too.ReplyDelete
Not so much anymore. Only because of amazing people like you who were actively blogging and encouraging and inspiring.
I pray I can do the same for others.
(I love Jamie Grace too! I didn't know she had Tourette's Syndrome.)
Thank you so much, Hallie, for sharing your thoughts and feelings with us. It is so comforting to read your posts because it's as if you are speaking the words from my heart, too. Thank you for writing and for assuring us that we are not alone. It is so important. And thank you for introducing me to the music of Jamie Grace - Wow! :)ReplyDelete
Thanks I couldn't have said this better myself.ReplyDelete
Thanks I couldn't have said this better myself.ReplyDelete
My baby girl has been at camp Barton due to return in a few days, I've missed her but at the same time I feel guilty because its been so nice to not constantly have diabetes on the brain.ReplyDelete
I feel alone many a day! Thank you for these powerful words of comfort and support.ReplyDelete
Great song! We are on this journey together!!ReplyDelete
Thanks for sharing the feeling I myself feel every minutes of my life with D.ReplyDelete
Thank you so much for the encouragement! We too feel so alone! We also love Jamie Grace and have her songs memorized!ReplyDelete
Thank you for the encouragement! We too feel so alone and long for friends like us! We also love Jamie Grace and have her songs memorized!ReplyDelete
Absolutely perfect blog post in every way :)ReplyDelete
Thanks for a beautiful post! But after hearing how hard it is to get a babysitter for a diabetic from all the d-mamas online, (I was diagnosed at an age that was never an issue) I really want to find someone to babysit, because, (I don't know, I'm 14) it seems like it would be easier if the babysitter knows what it's like. I don't know, but these posts are making me think :)ReplyDelete
Reading your post is an incredible view that I still do not have a full understanding on. I am a school nurse, not a T1 myself, but care for 10 T1's day in and day out. I have learned so much from them, but their parents as well. Hearing how alone your daughter feels as well as yourself saddens me. Luckily, in the big scheme of things, I can say we have a great support system in our school and community. We are saddened that we have as many T1 that we do, but the support they show each other is amazing. Just a reminder to you all, in my eyes your all heros....your job as a parent is not easy in dealing with a T1 child. I commend you all as I only have to deal with it 8hrs/day and you do it 24hrs!ReplyDelete
I love how you just nail it every time. I love the song (gotta go out and buy it now :P). I love how you can just explain everthing I'm feeling, seeing, doing. And then I love how it's not just me but a whole DOC out there.ReplyDelete
And thank you Hallie for being brave enough to speak the truth. :)