Embracing Life & the Child with the Disease

Giving Myself Permission

Vs. 4-5 is where I will focus, but this pic of the four girls reminded me of the three that I write about today.

I love my life.  I have a good marriage, three wonderful boys, I live in a nice house, Jason has a good job . . . I have much to be thankful for.  MUCH.

And regarding d . . . we are one year, five months and four weeks exactly into our journey.  We have come a looooong way.  A very long way. 

And I am thankful . . . and it’s not even Thursday!  LOL.  But I am thankful for so many things.  

But last week, out of the blue, I hit a brick wall.  It was the first full week out of school.  I was so excited for the year to be over and have my boys home and sleep in until 8a and to swim and bike ride and stay up late . . . and I (we) did ALL of that. 

And his numbers went sky high.   Stubbornly high.  Struggling to get them under 250 high (but not ever any ketones).  I just could not get it under control.  And by Thursday, I hit my breaking point.  And I fell apart emotionally.  By Friday, I couldn’t do anything without weeping. 

Remember after having a baby, ladies, how the emotions from horomones flooded in and it didn’t matter what you did, what people said, how good the baby was, or how hard you tried you could not get control of the tears?  They were just were an endless stream.  So much so, I was sure I would literally die of dehydration.  I remember very distinctly after Ethan was born, I was weepy after all three, but probably the worst after Ethan, that my mom came over before Jason left for work his first day back after we brought Ethan home.  I was lying on the couch with Ethan sleeping when Jason kissed me bye.  So young and so green as a momma, I was terrified for him to leave, even with my mom there.  When the door closed, the waterworks came and just did not stop.  I held my breath trying to make it stop.  And I remember my mom sitting in the gliding rocker in the living room said, “Don’t fight it, Amy.  Just let it out.  The more you try to control it, the worse it’s going to be.” 

She did two things for me in that moment.  She told me that it was normal, that my body needed this release.  And she gave me permission to be emotional so I could get through it and not just get stuck fighting what was the natural course of my body, my mind and my emotions. 

The thought crossed my mind on Friday as I talked to my mom about it again.  But there was no new baby causing the hormonal gush of emotion, no new devastating news, no real anxiety to speak of that had me weighed down.  Like I said in the opening lines, I have a good life. I have been so blessed.  So why the inability to control the tears? To not be able to beat the saddness? 

And what I kept going back to was Ryan’s stubborn highs.   And I would think about d and just weep.  With every beep of the meter, with every correction given, with every snack he asked for . . . I just wept.  Why am I here?  I’m, again, one year, five months and four weeks into this dx.  GET A GRIP, AMY!!!

I so needed to reach out to my support group.  My confidantes in this journey.  My same-sames.  And I couldn’t.  And I backed away trying to work through the emotion alone. 

I just kept thinking . . . I’m not supposed to be here.  Move on. 

And I have tried to stay so positive and encourage others and see the bright side (not to be fake, just to cope and focus on the good), I was embarrassed to cry out for help because all I could see was the bad, the sad, the hard. 

So I just started reading blogs.  And I went to Meri (I’m already tearing up).  And I read, “Your story MEANS something.” And at that moment, I didn’t feel my story did.  And I reacalled a previous post where she encouraged people to write when they are down, to write the uglies to work through it.  And I couldn’t write.  It’s easier for me to write when I’m on the mountain than it is to write when the valley is deepest.  And in my weepy mess, barely able to read the white screen to type, I messaged who I call my “big sister in d”, Meri (not because we are that close, but just because she is further down the road, because three of her four beautiful boys have Type 1 diabetes, and just because it’s Meri) and just told her exactly where I was . . . in that dark place where all spirals out of control.  And for those who know Meri, her response was quick and her words were wise and her heart was real and she reached out so far that I could almost feel the embrace of her hug.  She said all those things that I may have said to someone else but in the moment, didn’t believe for myself.  And she sent me love.

And then I read again the comment from my Singapore-living, British friend, Kerry, who made on my Thankful Thursday post.  I kept reading over and over, “Your family is one of the most well-adjusted families with diabetes that I know.”  And she thanked me for my friendship.  And I thought, “well-adjusted”?  I’m a weepy mess over here!  Well-adjusted?!?!?  I wanted to be.  But would a family well-adjusted to diabetes have a d-momma such a mess nearly 18 months into the journey?  I should be well-passed this!   Kerry is the friendship that I am thankful for.  The Cracknell’s are the well-adjusted family.  I don’t even measure up.  She has been my rock at times, at many times.  As much as what she said should have made me feel good, it made me feel afraid.  Afraid to be honest . . . but I mustered up the courage, because she asked . . . and she was there. 

Saturday was better.  I was exhausted because Friday morning I made some MAJOR basal changes and I had to check that night, often.  But numbers were better, much better.  We went from averaging over 200 to averaging 128 on Saturday.  And it continued on Sunday with average of 120 . . . and both of those days, minimal lows (once at a birthday party while bouncing in a bounce-house in over 100 degree weather, but it wasn’t scary and Ryan enjoyed the candy!).  We even did okay with pizza on Sunday night.  Monday’s average was in the 120s as well.  (I know what you are saying, the bottom will drop out soon enough, but I’m reveling in it now!)

But the kicker was Sunday night.  I was sitting ready for the Mavs to take the floor for Finals Game 6 and had just posted in my status, “Ok, Mavs, let’s get this done TONIGHT.”  They were up 3-2 in the series with the Heat (in case you are not an NBA fan).  I have never in my life watched a more stinkin’ nail-biting series in any sport in my life.  The only time the Mavs seemed to get things going was if they were down by double-digits in the fourth!  Sheesh!!  Stress I do not need.  And not to mention the announcers for the games should have been sporting their Bosh, Wade and James jerseys while sitting live through each game. UGH.  Double UGH.

AnYwhOO . . . I was talking about Sunday night.   Less than 30 minutes after posting that status, my phone rang.   And for the first time, I got a phone call from Reyna.  She’s a fellow-blogger too and has a T1er that’s a year older than Ryan.  We exchanged numbers a while back but never used them, not even to text.  Always conversing via blog comments or facebook.  Joe’s dx was over four and a half years ago.  I love her and Beta Buddies.  She writes so real, so matter-of-fact.  So humorous. So colorful!  She moves me at times.  She makes me laugh outloud!  One of the funniest things I ever read was about her dog.  I STILL go back and read that November post about Oscar the Mini Schnauzer getting in trouble for the scene he made that looked like the “murder of a squirrel wearing a diaper” and the “bedroom would be illuminated like a Rockefeller Christmas tree if a forensic team doused Luminol on the mess.”  Ohhhh, it still has me in stitches!  She, on more than one occasion as well, has picked me up from a face-plant on the concrete of diabetes.  I’ve heard her voice from her vlogging.  I laughed myself off my chair at one and cried like a baby in another.  I.heart.her. 

It was literally a breath of fresh air to talk to her.  I was able to be honest.  Honest about what had gotten me down.  I was truthful for the first time with a d-mom about the JDRF Walk this year and about not walking and why (talk about feeling naked saying that outloud!).  But we talked about the grief and the 24/7 care of diabetes.  How there is no break, no vacation from it.  She said something that I wish I had written down (I actually did look for a pen but none in sight) she said something like she was at times just one-string-of-high-numbers away from spiraling into that dark abyss of overwhelmingness and depression. THAT’S EXACTLY WHERE I HAD BEEN.  Where I was crawling out of.   And the comfort of hearing those words . . . to know it wasn’t just something broken in me, but that it was normal, and it was okay.  I stood there glassy-eyed as I listened to my Vermont friend share with me where she was 18 months in. 

And then we laughed.  A lot.  And it was therapy. 

And today, I have thought over what transpired over the weekend.  My swapped messages with Meri.  The comments exchanged with Kerry.  My phone conversation with Reyna.  And I went back to that time in 1999 lying on the couch weeping in my mom’s presence and her words of not fighting what is normal, natural and real. 

He was 55 and waiting for his sugar to come up. He was okay with the rest, but this just made me sad. 😦

And I gave myself permission to grieve the life we will never be able to live again.  To grieve not being able to just go to the pool and swim without worrying about the pod being knocked off or the sugar dropping too low.  To grieve going to a birthday party and just letting him eat cake and candy without guestimating carbs in every bite.  To grieve going to sleep without having a number or pizza that is bound to catch up at 1am swirling around in my head.  To grieve the fact that I just can’t let Ryan go over a friend’s house this summer for a play date alone without having to find another mom willing to take on the responsibility of a diabetic child.  To grieve because of the constant, hard, relentless care of a high maintenance disease.  To grieve the fact that, barring a miracle of a cure, he will live with for the rest of his life (and that grieves me to the core). 

And I gave myself permission to be sad when it’s simply what I need to do to get through it.  To tell myself that it’s okay to cry and there’s no reason to be ashamed or embarrassed.  

And it was almost like once I gave myself permission, I was able to move passed it.

So I tell you, my d-readers, don’t be hard on yourself.  Give yourself permission to cry.  It’s like a cleansing, a washing of sorts.  And if we allow it, it can be renewing.  It can be strengthening.  It’s part of the process . . . even 1 year, five months and four weeks down the road.


Comments on: "Giving Myself Permission" (8)

  1. Thank you!! Thank you!! Thank you so much for writing this! So many people need to hear that it takes TIME to get through things like this. Our children didn’t skin their knees for crying out loud! They have a chonic “every day, every hour” illness. I don’t know why we feel like we should be well adjusted 1 year in, or even 5 years in…or even like me, 13 years in. I still have my days when I need to grieve. Our bodies NEED the release. Thank you for sharing your story. I KNEW it needed to be heard!

    Hugs to you my dear friend! We can do this, one day at a time. One emotion at a time. ❤

  2. Your post is amazing and you are so strong. Diabetes does suck but having D friends make the journey that much better. One week ago today I lost it. We have been dx for 3.5 yrs and just came off of a fever from the weekend. Numbers were high and nothing we did brought them down. Last Tuesday I cried for 45 minutes at our church while S enjoyed her time at VBS. The whole experience was so overwhelming I actually wrote my first blog. We made some more changes and things started to get better. But my mom too let my just wail to her and if it weren’t for my 3 closest D momma’s I would have never made it. Although this was no fun experience for you it is comforting to know we are not alone. I even texted my school nurse and told her to be glad school ended when it did or else she would have had to be a part of all of it as well 🙂

  3. Hugs, hugs and more hugs to you, my friend! You are SO right. We shouldn’t resist or resent the emotions. We should work through them. This was such an important post. I think many readers will be able to relate and will feel so much better, knowing they’re not alone, knowing that another D mama worked through it, knowing that it’s all part of this D life. More hugs and lots of love to you!!!!

  4. Well, first off … I love you. We are all sisters in this. Your transparency and “real-ness” will provide your readers comfort Amy. I wish, I would have come out and wrote a post exactly like this. I don’t think I have ever once mentioned me crying…boy howdy have I. You are an inspiration to us all…and I am so glad that we had that conversation. You were just as wonderful as I imagined. xo.


  5. This is exactly what I needed, Amy, THANK YOU! In fact, I am finally letting my tears go. I have felt the heaviness of D weighing on me since I got back from my trip. It’s like having that six day break made getting back to it harder. Being able to not think about timing and carbs and activity was grand, but it made stepping back into that reality a huge slap in the face. We are just over a year into D and there are times when I feel like I have it totally under control and there are other days that I feel trampled to bits.
    Thank you for sharing, for being honest, for reminding all of us that there will always be those times that D overwhelms us and it’s OK…better to cry and move on then try to put on a happy face and stay miserable!
    Massively big hugs!!!

  6. Amy, see – this is exactly why you ARE well-adjusted (and you, Meri!)….you have given yourself permission to cry and grieve, and express your feelings. Whether you express those feelings privately to close friends/family, in a blog, on FB, in letters, in a diary….whatever – you’re working through them, picking yourself up and moving on. The title of your blog says it all. And there will be more times of grief, and grief about other things, I’m sure, but you’re always able to work through it. I love the way that your positive nature, your strength and your sense of family, and your love, shines through even in a blog where you’re expressing grief. I don’t think you wrote this because you are wallowing in that grief. You wrote this because you want to move on, to work through your feelings and rise up stronger, and also to help other people work through their own feelings and let them know it’s OK to cry sometimes. That’s why I think you’re well-adjusted. That’s why I often turn to YOUR blog when I’m feeling down, because it never fails to make me think, lift my spirits and remind me that things aren’t so bad! Thank you for being so open and honest, and sharing this. (((HUGS)))

  7. Oh, Sweet Amy. I wish I had known you had hit a wall. I’m sorry I’ve been lost in my own world for the past couple weeks. I remember hitting a wall last summer…around the time I found you.

    You’re doing a great job. The emotional journey is just as real as every number you see on the meter. Be gentle with yourself during times like these. 99.9% of the time, we put our game faces on and just do it.

    Those numbers don’t define the amazing mother you are. They don’t define the awesome home you’ve made for your family. Don’t let them get inside your head and tell you things that aren’t true.

    You have a beautiful family. Look at their smiles…

    Those are the best indicators of how well you’re doing, my friend.

  8. Hi Amy – I am not a D-mom, but I found your website through my friend Alison – she often posts on “thankful thursdays” and I asked her where she got the idea. She pointed me in your direction. What a beautiful and inspirational blog you’ve got here. I truly, truly do not know how you D moms do it? Anyway, I hope it is ok if I steal your “thankful thursdays” idea. I’ve been trying to figure out what day of the week to post my blog http://10000gifts.blogspot.com/ to facebook and it is ALL about being thankful. Have you heard of the book http://onethousandgifts.com/tag/1000-gifts? It is incredible and life changing. Ok, I’ll stop rambling – thanks for the “thankful thursdays” idea! I could see that spreading like wild fire on facebook 🙂

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