1233986_877190422309191_7949157402428211263_nOur daughter comes home from camp today. She has been missed, and we are looking forward to seeing her today, and hearing all about her wonderful adventures, amazing experiences, and new friends. But can I be honest?

We needed a week away too. I know that sounds horrible and I feel awful . We are not looking forward to diabetes coming back. For truly the first time in 4 years, we have managed to take a break from caring for a child with diabetes. Yes, she has been at camp twice before, but for those trips, we were worried about her well being, would she make friends, would they be able to manage her BS, etc. This year, we know she is having fun. We trust that she is in expert hands. And we know she already has friends there.

So we made a decision to take a week off ourselves. Now let me be honest. Writing this post scares me. I have no idea what the reaction will be. And this post isn’t really about the person with diabetes, who can NEVER take a day off, an hour off, from her disease. This post is about the caregivers. A little self serving, and as I think about this post, I can’t help but feel extremely selfish. But I try really hard to keep this blog honest. Real. And occasionally raw. So here we are.

I was asked prior to our daughter going off to camp if I was going to send her with her CGM, and with our CGM in the Cloud set-up. The answer was no. She is in capable hands at camp. And that camp has an effective diabetes management system in place. Monitoring her BS from miles away, when there is nothing I can do to affect the outcome is hard. Stressful. There is no one to call to say she is running high. No one to ask to give her a juice box. My wife and I decided that we too needed a vacation. Her CGM has been sitting on our dining room table for the last week. No alarms at 2am. No vibrations while I am at work at noon. No trends to follow or data to dissect. I am pretty sure there was quite a bit of data overload also causing a lot of stress. Diabetes management is a 24/7/365 job. There is no time off, and as soon as you slack off a little, it bites you in the ass. As soon as we pick her up today, we will be putting it right back on. It is an amazing tool and resource. But honestly? It was nice getting a break.

You see, this is different than sending her to Grandma’s for the night while my wife and I go on a date night. Because in that scenario, we are still checking in every hour or so. Even more if there is an issue. Or we are watching our pebble watches for BS trends, and calling with suggestions. At the very least, the conversation over dinner is dominated by concerns about how they are doing with managing diabetes. “How’s you steak? Do you think she added the carbs correctly for her snack?”

But at camp? Surrounded by diabetes professionals, adult and teen type 1’s? There is no safer place on earth for her. So those conversations haven’t been happening this week.

We also have a non diabetic child. Every year, for 1 week (this sounds really awful that this is the way it has to be) we celebrate him. Doing things he loves to do, at his pace, on his schedule. Things like going out for frozen yogurt. And while we do that with our daughter also, the experience is slightly different in that we have no restrictions on the type or amount of toppings he can have. You see, we have to measure out everything my daughter eats. We have to weigh the yogurt. We have to add in carbs from the toppings. And there are certain toppings that we completely avoid do t experience and issues with blood sugar. So we tell both kids they can’t have gummy worms or sour patch kids or a few other things. But when it’s just our son, he can have them all. (He still doesn’t, but it’s nice to tell him he can). We took him to the movies, and instead of our normal routine of packing our own snacks and bringing them, we actually let him get popcorn and candy at the theater (for the very first time ever). We left our dogs home for most everything we did this week.We made a very conscious effort to let him know he was our sole focus. That this week was truly just his. No dogs to distract or pull us away from him. Just him.

You see, the funny thing that most people don’t realize about this disease is just how much it infiltrates every single aspect of your day. Every decision that is made. How regimented life becomes, and how little spontaneity is allowed. There is an innocence lost in childhood. Both for the child, and the parent that would love to do amazing things on a whim for their kids. Yes, we still do lots of things, and we work VERY hard to make sure that our daughter grows up with a wonderful childhood full of fantastic experiences, but it truly is that. Very hard work filled with lots of preplanning. Every decision from what we are going to eat to selecting the proper movie time to preplanning the kit we need to take every time we walk out the door to closely monitoring all physical activity is a tremendous amount of work. Even if she is playing outside in the back yard, in this summer heat, someone still needs to keep 1 eye on her. We have alarms going off at midnight and 3am every night, and that is in-between a dog alerting or a CGM alarm. This disease is relentless, and it truly affects the whole family. My wife and I are completely suited for the task. And you will never hear a complaint from us (unless you too are an understanding Type 1 parent), but needless to say, we purposely took this week off. For our own sanity.

We even gave the labs a much needed break. While i continue to run and exercise with them, we only truly did 2 obedience sessions with them, and 2 scent sessions. They seemed to need the break too. They are ready for her to come home now, the break was nice, but they truly miss their girl.

While we can’t make up for 4 years of missing sleep, we did place a concerted effort on getting rest. In bed every night by 10. On running mornings I get up at 4:40, and on regular work days I get up at 5:45. All though I still woke up a couple of times sac night out of habit, I was able to go right back to sleep. I have been trying to do things that allow m wife to stay in bed a little longer, but she too has woken up often.

I am on vacation this week. We have lots of local day trips planned with the family. Essentially, I got a week off from diabetes management, and now I get a week off from work responsibilities and time to reconnect with the family. And yes, diabetes. As a parent of a special needs child, I understand the relentless commitment we have to make sure our child is healthy. Well cared for. Treated fairly. And being their advocate. I also understand how important it is that the care giver also gets a chance to breath. When that care giver is a parent, there really is no time off. Ever. So if you have an opportunity to send your child to a specialized situation, like a diabetic children’s camp, I highly recommend you do everything you can to make it happen. It serves as an amazing experience for the child to be surrounded by people just like them. But it also gives you a chance to come up for air.

It’s been a good week for our daughter. She looks forward to camp all year long. And it’s been a good week for her support crew. We got a vacation. We were able to rest. And now we are ready to kick diabetes ass again for another year. Or until someone finds that cure.

Next time you see a parent of a special needs child, understand that the job they do does not allow any time off. It is relentless. And often times, they are the only expert in their field. There are no sick days or vacation time, no back up or substitute that can step in. Offer up a hug, offer up a cooked meal, or a house cleaning. Or a cup of coffee and an ear. We all need it sometime.

Rested and back to the grind. Thanks for listening, and now back to your regularly scheduled program.

Team Blackdogsrule

 

http://www.overshopping.com

Related Posts Plugin for WordPress, Blogger...

17 Comments

  1. Spot On! I love reading your blog. You bring all the good, bad and ugly out in the open and I commend you for that. Caregivers need a break too, I am a wife of a Type 1, I am the daughter of a stroke victim, I am a MS patient. I understand the caregiver life, it is relentless. Thank you for all you do for all of us. I am sure some will tell you how wrong you are, but I for one think you and your family are doing an amazing job and sometimes you do have to recharge and take a break. God Bless.

  2. Yes, yes, and yes. My brother was an innocent bystander of my heart problems our entire childhood. His whole world revolved around “Crystal cannot do that.” His whole world revolved around which relative he would stay with next or if he would be able to stay at a friend’s house. There was rarely time for him. And my poor parents? I cannot even imagine.

  3. Shannon Gilbert

    I love that you wrote this post. I love your honesty – that you are saying out loud what we are scared to say for fear of judgement. Thank you.

  4. Jean Bonifacio

    Dude! I say this every summer my dd goes to Camp Sweeney for 3 weeks. But not only is it a break for me it’s also a much needed break for them. 3 weeks free of mom asking if she checked her BS, did she dose for that, blah blah blah. I was ashamed after thinking I loved the break after the 1st year but by the 2nd year, screw it. I don’t care how I come off. We all need a break and I thank god it’s there. Bless you for writing this. There’s a lot of judgmental people that need to read this. Give your child a hug and get back into the prick of things. Until next year…we got this. Diabetes SUCKS!

  5. Beautifully written, and you have nothing to fear! You sound like angels to me! I am a type 1 and a dog lover to boot! My daughter has been sick with a challenging autoimmune disease as well for the last year, and while she is old enough to handle her day-to-day maintenance, I worry constantly nonetheless. Keep up the great work!!! I now am going to read your other posts!!!

  6. This! So, so much this! I actually have a draft I am working on, talking about what a relief it was when our daughter was in a Diabetes day camp. Next year she is going to a sleep-away Diabetes camp and we cannot wait. These are the only true breaks. We haven’t gone out much because sometimes what’s the point if we are going to get interrupted every hour or couple of hours with questions and concerns, have to troubleshoot, etc.

  7. My first reaction upon reading: is it possible to get a 2nd camp week?

  8. How brave of you to speak the truth. D parents everywhere understand. What a well deserved break!

  9. I am sending my daughter to camp Kaiser in September. I tell people it is because she needs to learn her own independence (which she does) but the truth is I needed too. I can’t tell people that I need it too they just don’t understand if you’re not from Our t1 world. I can’t even tell her dad because he doesn’t understand and say that I was being selfish. We do live together but I am the primary caregiver because he has his own idea of how to deal with thing (high/lows and nights) and trust me when I say they are not good (even my daughter would tell you that. ) Thank you for all your post I love reading them and sometimes I use them to try to explain to people my world. Or should I say our our world of t1d kids and caregivers

  10. Laurie Farrell

    So glad I’ve found your blog~

  11. We need to all be understanding of any parent, wife, husband, father, mother, etc. that is taking care of a loved one with any disease or handicap. The Caregivers need their rest from the ‘job’ every once in a while and without guilt. I’m not in this situation, but friends are I’m happy when they take the time to take care of themselves as well, even if that means leaving the ‘job’ for a little bit. It’s healthy.

  12. I agree with whatever you guys decide is right for you. Until I have walked in your shoes…

  13. I had the same experience this year. My daughter went to a diabetes camp for the first time–two years after diagnosis. I did enjoy the break, but I have to tell you, I had a very strong emotional response when the realization hit me that it is truly HER burden, not mine. My daughter is entering high school, and in 4 short years will be leaving home for college. At that point, I will no longer be the one in the trenches. I will still be in there, of course, but in the periphery. It was this small break that gave me this perspective. I was devastated when the reality of this set in for me: its really hers–100%–forever. And soon (relative to a lifetime), the full impact of this burden will fall pretty much exclusively on her. I get to be done. She doesn’t, ever. This kills me. (Sorry to be such a downer, but this is my truth, and it hurts).

  14. Deirdre Wilson

    You are spot on, last year we sent Nicole for 6 straight weeks (her choice). The campers are her family and forever friends.

  15. Love this!!!! So very very true!!

Speak!