Sunday, February 3, 2013

Family ties.


My heart is heavy, though it survives the weight of grief I carry by pumping love furiously through its arteries and veins.

I know it isn't my responsibility to carry the weight of my friends journeys, but it weighs on me regardless.

Because even though we are not blood relatives, we are spirit relatives, and we are bound by very real family ties.

I belong to a coffee group.

I don't drink coffee.

But just the same, I "belong."  It is my home away from home.  My safe place where the women nod, and smile, and hug, and just understand.

"Group" is such a big word. 

We are only three.

April, Susan and myself.

I, of course, have three boys with Type 1 diabetes.  Susan has two boys with Type 1 Diabetes.  April used to have one boy with Type 1 Diabetes...but as of a couple days ago, she now has one boy, and one girl with Type 1 Diabetes.

How did we find each other?  It has only been a few years, and it is all fuzzy in our minds.  So fuzzy it feels as if the fates just flung us together into that small intimate coffee shop years ago.  We knew we were meant to be friends.  This week only solidified our solidarity.

As Susan and I took the trip into the city to bring the coffee to April while her daughter was in the hospital, the weight of the moment was sure.  Three mothers in the same town with multiple children fighting this crappy disease...it is surreal. But as we walked into that hospital room we quickly saw the transformation had already taken place...her daughter was a warrior.  April's little girl greeted us with a giant, sincere, brilliant smile. 

How is it that our children are so much stronger than we are?

This tender experience only magnified my emotions as I met with another friend, this one who has diabetes herself, for breakfast the next morning.  Sarah and I met online and later found that we live practically across the street from each other.  We get together as often as we can and chat for hours and hours.  It is so easy to talk to her.  She is in the truest sense of the word my sister.  I shudder to think that without diabetes I never would have met this valiant soul.  She is one of my biggest cheerleaders, and when she encourages me, I feel stronger emotionally, spiritually and physically.  Seeing her work her way through the complicated mire of diabetes, and still keep a beautiful smile on her face, gives me all the confirmation I need to know that April's daughter is going to be ok.  As are my boys, and Susan's boys.

That same night I was able to meet another D Mom who found me through this blog.  She was in town for the weekend and asked if we could meet up.  As soon as I saw her glowing face I knew I had found another soul mate.  Another sister whose friendship I would cherish forever.  The crazy part is she contacted me because I have helped her through my writing, but as I met with her, she helped me in ways I can't even quantify.  She was animated, and strong, and beautiful and she didn't let anything stop her from grabbing life by the horns.  She went through the process of finding who she was, and was able to give me tips as I journey through the process myself.  Honestly though, just by being herself, just by her living example, I learned volumes.  This glowing mother's son has Type 1 Diabetes.  She has two daughters, and one has tested positive for four of the five markers in the Trial Net study.  She has been told it isn't a matter of "if" her daughter will get diabetes...just "when."

And now to cap off my week, last night I got an email from a family that just returned home from the hospital hours ago.  They have five children, as of this week, now three of them have Type 1.

All these experiences, along with my own D Mom goings on, has left a profound mark on my heart.  My feelings are a heavy, complicated concoction of anger, love, worry and hopefulness. 

My eyebrows are furrowed, my brain a bit swellier.

So much love, and so much hurt. 

Why is this disease so damn invisible to the public's eye?

I read in a recent article that the general population has a 1 in 100 chance of developing Type 1.  One percent doesn't seem like a big deal, but when you are that one...man, it is a freaking big deal.  Because that one's life will be forever different.  That one's mother will not sleep for years and years and years.  That one's family dynamic will change completely.  That one's future will find a new trajectory.  Not a worse one per se...a different one.  People with Type 1 Diabetes CAN do anything.  But diabetes will change who they are.  Not necessarily for the worse, but it will change them none the less as they are forced to walk through the refiners fire.

The examples of love and determination this week echo within my soul.  Diabetes swirls around me in one continuous round, constantly replenished by new diagnoses...new connections. 

I am thankful for the sisters and brothers I have found.  Their stories fuel me.  They inspire me.  They drive me to keep advocating, and teach me that the cure to all our ails right now is love and understanding.

 
 


Well...love, understanding and insulin.
 
The power of same...I am so thankful for it.  Especially at the end of this poignant week.  Going through this journey, even with friends, is not easy.  Going through it alone is cruel.  Our family ties make it our responsibility to find others, to let them know they are not alone.


God bless the Type 1 community.  Let's keep finding each other by casting our net of "same" to all those who can reach it.   


10 comments:

  1. Im so enlightened when I hear your stories Meri! Im happy that they have you, the QUEEN B of D moms, and Im thankful that you have them too. We really are "one" when it comes to Diabetes, and it is suh a beautiful thing!

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  2. Wow - I thought the general risk was 1 in 500. It's amazing to me how many kids are being diagnosed with this disease. And how many are in the same family. I was in shock when I found out my 3 year old had positive autoantibodies. She's now been given a 35 to 50% change in the next 5 years. But really, it's another case of not if but when. You never think it's going to happen to you...and then it does. But on the flip side, I think I would actually miss diabetes if it was gone. I wouldn't miss the disease itself (GOD what I would do to get a solid 8 hours of sleep again!), but the care...and the closeness I have with my daughter because of it. I think because we are faced every day with their mortality, we appreciate them more...we cherish the small moments more. I know I do. And I would miss my T1D friends. I have met the most amazing T1D families and I just LOVE all of the kids. They have offered me more support than some of my own family members.

    It's so weird how something that's so terrible can bring about so many blessings if you just look for them. I'm in Southern California. I sure hope to get the change to meet up with you someday.

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  3. "But diabetes will change who they are. Not necessarily for the worse, but it will change them none the less as they are forced to walk through the refiners fire." T1D for 17 years, female, 29 yrs. old. Could not agree more!! Sometimes I sit and think who I would have been and how my personality would be different if I never got diabetes. Not in a sad way, just reflective. It's impossible to know, but one thing is for sure and that is diabetes changes your life path.

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  4. You reduce me to tears, yet again. I have no idea who I'd be without diabetes, but I do shutter to think of my life without some of my closest friends that I would never have met if it weren't for diabetes. You all teach me what it's like to be strong and brave, when sometimes I just want to be frustrated and sad.
    There are so many times that I just simply think of diabetes and think "All things work together for good...." Sure, diabetes isn't our chosen path. But even in the bad, the good surfaces to the top.
    Thanks for being you Meri! ((((hugs)))

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  5. Meri, this was a beautiful post. Even in the midst of your own anguish, your heart is soooo big for others that are hurting. I would definitely say that love is one of your spiritual gifts.

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  6. I thank God daily for the DOC, such a weird "thing" that I never knew about - but am ever so grateful for. Same.

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  7. Connection with other D-parents and good friendships are what keep us refueled. I HATE hearing that other families have more than one T1D child. It sucks, and it's not fair. I have two, my "babies", my identical twins. Just waiting for the other shoe to fall. Reading your stories mentioned in this blog remind me I'm not alone, and there's always someone who has it worse.
    Rhonda
    twotoosweet.blogspot.com

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  8. I recently found your blog, Meri, and oh do I connect! I think we would be fast friends. I so look forward to your words. :o) I have 4 darlings, ages 13-18. 2 are Type 1. (boy there are more and more of us, huh?!) The other 2 are taking part in the Family History study. So far, no autantibodies. My oldest T1 is taking part in the STEPS study for teens managing diabetes. When the adorable woman came to interview us for the study, she shared her story and also shared that she has not met a family with more than 1 diabetic whose mother does not have thyroid issues - specifically - Hashimoto's thyroiditis. This type of thyroid disease means the immune system attacks your thyroid gland. The resulting inflammation often leads to an underactive thyroid gland (hypothyroidism). I suppose it shouldn't be shocking because like Diabetes, Hashimoto's is an autoimmune problem. But just curious, how many of you out there with more than one diabetic also have hypothyroidism?

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  9. So glad i found you this morning...my 17yo soon just got home from work with 434bs. Yep, I'm gonna check on him all thru the nite just like when he was an infant, just like we all do. Thank you all for sharing your strength....I'm gonna need it tonite

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