Sunday, March 13, 2011

Support Me.

This has been a hard week. D was just not cooperating. Honestly I think Justice spent 15 out of 24hrs low, or constantly dropping for almost 5 days straight. It would take hours to get him out of the 70s, or even 60s and at the end of the night hitting high 200s, and then plummeting again in the morning.

He was drained, tired, angry, dizzy, having awful headaches, and I was exhausted and heartbroken seeing my baby having such a hard week.

Let me first say there is NO easy, or perfect or care free day with D. Yes sometimes there are days where sugars are great, and you feel good, but do you have any idea how much work that takes? You still have to check your sugar 10 to 15x a day, still have to count carbs, weigh food, insert infusion sites, and Dexcom sensors, still have to worry about the what if of it all.

There is no day without D. Period.

Sadly the tools we have while we are beyond grateful for them, are still crude and not always perfect. Meters are off, sensors don't work, pump sites fail, insulin goes bad. But there is one thing that we need that will always work. Always make our days a little easier, and give us something to smile about.

Your support.

I don't pretend that this disease is easy to understand, hell before Justice got diagnosed I understood it only half as well I do now only because my grandmother is a type 1. But otherwise I would be clueless.

But that's just it. I don't expect you to know what a basal is, or a bolus. Or understand how pasta can be demonic, or why Justice running outside for only 15 minutes now has as him balled up on the couch lifeless.

I don't expect you to have the technical talk with me, I may have with some other D moms. But I don't need you for that.


I need you to hold me up.
I need you to let me know you're there to listen.
I need you to hug me when I'm crying.
I need you to offer to grab a juice box.
I need you to text me that you're there if I need you.
I need you to offer to come over and help me since I haven't slept in a week.
I need you to let me vent.
I need you to not tell me how strong my son is.
I need you to not tell me how strong I am.
I need you to not brush off the events of my day by saying "it will be ok".
I need you to understand the seriousness of this disease, even if not the ins and outs.
I need you to understand I don't sleep for fear of losing my son.
I need you to understand my life is not all rainbows and fairies.
I need you to understand every day, 24/7/365 I must pierce my sons skin, see his blood, and administer life saving medicine.

I need you to support me.

I need you to support my son.

I need you to support my cause.

I need you to be there, like you were before this disease entered our lives.

I am beyond grateful have gained members of the D.O.C as my friends, family and support system. A group of people I'd be lost without and probably not as great a pancreas as I am. But that in no way means I don't need those who have been there since B.D (Before Diabetes).

I need to know we are still friends. We are still family. We are still each others backbones, no matter how much more complicated things have gotten these last 2 1/2 years.

I fear everyday a sugar will take my sons life, or his eyes in 20 years. Every day is a battle and one that I cannot afford to lose. One I will NOT lose.

I am scared. I am tired. I am exhausted. I yearn for the days before...

My life has changed. Justice's life has changed. In more ways than one, but that doesn't mean our need for you has.

If you ever doubted that, this is your letter of confirmation.

So when you see a facebook post about how bad our day was, or you notice I haven't tweeted in a week, call me, text me, email me. Reach out and ask if things are ok.

Cause honestly, by you doing that, they will be better than they were 5 minutes before.

Support Me. Please.





16 comments:

Penny said...

Great post Lexi. Love ya.

Reyna said...

WOW. You BD friends will definitely hear this loud and clear Lexi. It was written well and it was from the heart. Funny how I was just talking to an old nursing buddy of mine this w/e. We used to be BEST Friends. Our friendship started to fad just a bit before "D" entered Joe's life..but since...it has faded even more. I hate things being belittled, my lack of sleep being belittled, and her general lack of understanding or willingness to acknowledge that this is a hard life.

This post hit home for me...more so than you know.

Love you.

And...sorry on the lows. Is it an absorption issue? Or and around the clock issue?

Nikki of Our Diabetic Warrior said...

Hi Lexi,
I'm only asking this because of our own exerience, but has Justice been tested for celiac? I'm asking because celiac disease can cause malabsorption and cause lows. The body doesn't absorb the food correctly so the insulin ends up being too much. Celiac is also common with type 1 diabetes. Just a thought....

Please know that you and Justice are in my thoughts and prayers.

Joanne said...

This is a letter that should be read by all who have friend's with a CWD. You captured so perfectly how I think we all feel. HUGS! Hope things start to even out soon.

Misty said...

I'm so sorry that D was misbehaving more than usual for you last week. I absolutely love your letter! One of the reasons that I love reading your blog is because of your pure honesty. You did an amazing job of letting family and friends (the BD ones!) know how much you still love them and that you NEED them! Really nice job!

Jen said...

Sorry you guys had such a crappy week :( We had one too for slightly different but D related for sure. I love your letter..it sums it up perfectly. I was just thinking yesterday about hoq I was feeling lonely this past week..just alone in dealing with being a mama and pancreas to boot. I don't know what I would do without you and the rest of the DOC but sometimes I just want the comfort of friends that are right here..

Lora said...

Well said girl!! I want to print this out and pass it around to a few people.

Toucan Scraps said...

I'm here

Renata said...

I hate being disappointed by friends. I feel you hun...sometimes you just have to let go and focus on others. For me it's been easier than spending time asking "why".

One day you will mee that good pal that get's it all and even when they don't, they are still there. (still waiting for mine!)

Shannon@ The New Normal Life said...

sorry you had a rough week! This post was beautiful and very well written! Huge hugs to you!

Wendy said...

(((Hugs)))

Thinking of you, my friend.

Anonymous said...

Parents of children with a chronically ill child will understand your post. Others.... not so much. After five plus years, I have come to this conclusion. No way to understand it unless you have lived with it. There are many who do want to help, and those are the ones who will send you herbal remedies, nutritional remedies. These remedies will not help Type 1, but you have touched their heart and these remedies are their way of trying to help "solve" a problem that cannot be easily solved. Sorry you and Justice have had such a very rough week, lows are so scarey. Get his thyroid T3 and T4 levels rechecked. We had extreme highs than 50 percent reduction in basals with lows just before she was diagnosed with Hashimotos. Hypothyroid problems are very common in the Type 1 population. You will get to the bottom of these lows. P.S. there is a stomache bug going around.

Heidi / D-Tales said...

Sorry to hear about your week. ((HUGS)) to you and Justice!

There are few people in my life who need to read this post. It's such a GREAT post. I hope your friends and family read this and start giving you the support you need.

Denise said...

((hugs!))
I so know what you mean about still needing our friends from BD...too bad they seem to disappear. D is so hard to understand unless you live it.

Barbara said...

Beautiful post, Alexis. We in the DOC have got your back. ((HUGS))

Barb

P.S. And might I say you have beautiful children!

Anonymous said...

How I understand you...
My daughter is type 1 since she was 8 ( now 11) and I don't have anyone to talk about my fears...my pain... here people always try to hide the diesease...
So, I use to cry alone at night in my bed...
Anyway...I am here to support you!!!

laurindamatos@sapo.pt

Laurinda Matos - Portugal

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