It has been way too long since I’ve posted here. I’ve written one too many posts in my head that never made it here. Racing thoughts, good ideas, great learning moments…just not enough hours in the day.
So I’m a little surprised that I’ve carved out this time today but I was prompted to write after reading a post by Moira McCarthy Stanford. It just stirred something in me, in a way that was unexpected.
As Logan approaches his birthday and we move into double digits all I can think about is how his body will change, how hormones will come into play and how I’m doing my best not to think about the challenges we will face with his T1D care. I’m also thinking, “We’ve got this, but some days it just sucks”.
I struggle sometimes to even consider venting about our life with T1D as I have too many friends that grieve the loss of their children because of cancer. As I type this I’m thinking of a friend who is praying that her daughter doesn’t have any seizures today while having her wisdom teeth removed. A life with epilepsy.
I am also thinking of a friend that prays every second of the day that they will get the ‘call’ and that her daughter will get a new heart. A life filled with hope and prayer, that someone’s loss will give life, a life filled with gratitude and grace.
Many of us walk this path together, sharing fears, praying for cures, finding balance. So if I encourage my friends to express how they feel, to move through it, even when it’s uncomfortable, to say it out loud and know that it doesn’t define them, then I need to allow myself that same space and opportunity.
Of course I feel blessed that we are given tools and medications that can help us manage Logan’s T1D, but it is not to be forgotten that it is not a cure and a cure is what we really need.
I can only hope that everyone has someone in their life that they connect with, someone that they can just let it all out and say “You know what, this really sucks, I hate it” and not feel judged or looked upon as if they are losing ground or focus. Sometimes you just need to say it out loud, and I hope you do. It feels pretty good when the timing is right.
We all have our days, whatever our challenges but today I realized, in a different way, that I am connected to a world that too many of us know. The world of Type 1 Diabetes. I read Moira’s post, http://despitediabetes.com/the-truth-the-one-were-i-say-suckity-suck-suck-more-than-once/#comment-18456, a D-Mom warrior in the highest regards, and it made me laugh, cry and cry a little bit more. Albeit I’m pms-ing, hopped up on Easter candy, considering a third cup of coffee and home bound with a very bummed out daughter that was sick for her entire Spring break and is home again today.
Even without the perfect storm this post would have made me cry. It hit home. It knocked at my back door when I was expecting a knock at the front door.
We do our best to teach Logan to move on, not to get stuck in ‘it’, that he can handle this, we can handle it, he can do anything he wants to, and he can, he will and we will. I have no doubt about it.
I know that we are somewhat on the right path as he recently described his life with T1D as “happy”. I kid you not, “happy”. I of course had a few choice words, but when he was asked to participate in a JDRF event, they asked him to give them one word that describes his life with T1D and he said “happy”.
I love him. I love that he feels this way, that even on the hard days he feels “happy”. But I must admit, sometimes it feels like we are putting on a play, getting applause for a job well done and then going behind the curtain, celebrating, exhausted but thrilled that we pulled it off and quietly wishing that the audience could see everything that took place in order to orchestrate this “play” we call a day in the life with diabetes.
I agree with Moira, T1D does suck, it can be managed, but it’s nothing like a cure…and I have to agree with her friend, I think on any given day the color of your underwear will have some affect on your numbers. Heck, when Logan’s hair stands straight up I think “Oh great, his numbers will be off today”, that’s how unpredictable and fickle it can be.
So thank you Moira, and thank you readers, for sitting with me in this moment and giving me some space to say “it sucks”, without judgement, without pity…just some breathing room to say it out loud.
Now, back to business, one sick kiddo at home, and a call from the health room letting me know that my D-child is not feeling well. So we move on, we are strong, we are positive, we are confident and we are almost out of Easter candy.
We care and that’s why we are vulnerable. Sometimes we just need to vent so we can remember why we are so determined and committed to this path to find a cure, not only for T1D, but for all, because we all have days like this, we all cry, scream and yell ‘It suck’s’ and regardless of our challenges, we are in this together.