Tuesday, October 22, 2013

Goodbye Sweet Friend

Nothing I say here is going to be adequate enough. I'm still in shock, to be honest. Words fail me.

I don't blog anymore, but right now I feel I need to. I want to. Just this once.

I met Shamae a few years back through the DOC. Our Sunday night chats...those were so special. I was going through a very tough time back then. Not only because of D (Bee had been diagnosed for a few years already when I found the DOC), but because of other personal issues in my life then. Those Sunday night chats really helped get me through some very tough times. Each Sunday night I would hurry to get the kids in bed so I could have some adult D momma time with a group of my very favorite people. We would talk about everything, from our kids to other life issues. We had our inside jokes. We had our special language. We had each other.

Our Sunday night chats became less frequent when Faceboook became more prevalent. But we all still kept in touch. Talking, laughing, supporting each other when needed. We are a very close community and when something happens to one of us, it happens to ALL of us. We are ALL really feeling this loss right now.

You were a beautiful person, Shamae. Inside and out. Things weren't always easy for you with the health issues your girls faced and the health issues you faced. But you were always SO strong. No matter what was going on in your life, you were always there to support others.

Thank you for everything. The laughs, the love, the support. Thank you for being you. You will be missed, my sweet friend.

shamae

Monday, May 13, 2013

Share and Don’t Share



Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?




Dear Dr D,

You have been taking care of Bee for years now. Not quite at the very beginning of her diagnosis 8 years ago, but not too long after. And because we have known you for so long, I feel like I can always talk to you.

I do tell you everything. There is no reason not to. I told you when Bee sent me fake numbers every day for 2 weeks because she just didn't want to check her blood sugar. I told you that I am scared to correct at night for fear of another seizure. I cried in your office, more than once, out of sheer frustration and exhaustion, while I rambled on and on about what I could be doing wrong.

When you download the pump, you see the missed boluses, the uncorrected high-ish night time blood sugars, the crazy check/correct, check/correct, check/correct one after another when I am obsessing about getting it just right.

There isn't a lot I don't tell you. Not only because I know you'll see it anyway, but because I feel comfortable enough telling you when I screw up. And not once have you ever judged. You have only listened, helped and hugged me when I needed it. And you have done the same for Bee. Out of all of her specialists, you are the only one she really talks to.

I know this isn't what this blog post is supposed to be about, but I just wanted to say thank you. Dealing with T1D on a daily basis is very difficult. But I know that no matter what, you will always have our backs.

Friday, January 25, 2013

Can I come back?

It's been a while, I know. I only posted a few times in the last year for important things, but not very often.

Working full time now has me busy. Spending every extra second with my kiddos comes first. But there's still a little "me" time in there somewhere, so I want to come back. I miss blogging, even if I sometimes don't have much to say.

In the past few months we've had an almost 2 week hospital stay for Bee, a visit to CA to see a good friend, a move to a new house, a job change for Scott (Well, sort of. Same company, different/better position) and a few other things going on around here. I'll catch up on all of that in later posts.

So, let's see if I can bring this thing back to life. Let me know if you're reading! If you have a blog, please share. I'd love to read yours too.

Glad you came by! Hope you come back soon.

Tuesday, September 11, 2012

Camp Soaring Eagle and JDRF, You Did It Again!

First, a word from Bee:

Thank you so much for letting me go to camp! It was my second year, and I loved it! I made a lot of new friends and I had so much fun! Going to Camp Soaring Eagle makes me feel like a regular kid with no medical stuff to deal with. I really hope I can go back next year!

(P.S. Thanks Juan for putting the worms on my fishing hook!) ______________________________________________________________

So....there you go! From Bee, in her very own words. She LOVES this camp!

(BTW, Camp Soaring Eagle is funded by very generous donors. This camp is at NO COST to the families and we want to thank the donors for making this possible for Bee and other children with medical needs)



Like she said, she made new friends! 

(She's in the back, straight down the middle)
Look at these happy kids!!!



She had a lot of fun! 


And Juan (pictured) put the worms on the 
hook for her. What could be better? ;) 

 

BUT....Camp Soaring Eagle doesn't only do amazing things for my "extra needs" child. They think siblings are pretty special too.

A while back (when I was taking a blogging break, so that's why you didn't hear about it) Butterfly was invited to attend the Sibling Camper Weekend. At first, she was a bit nervous and wasn't sure she wanted to go. But then she found out one of her best buddies "S" (pictured) was going to go too, so she went.



She had SO much fun! She came back from a weekend away and couldn't stop talking about it. This was just as exciting for me, too, because I wanted Butterfly to feel special. Not that we don't already make her feel that way. It's just that, sometimes I'm afraid she has that middle child syndrome. And when she gets to have this much fun, it makes her feel extra special too.




So, once again, Thank you Camp Soaring Eagle! Thank you JDRF! Thank you to the volunteers who attended this camp to help our kids have a wonderful weekend!




Bee and "O", her camp counselor for the 2nd year in a row. 
He also has T1 and Bee said when she's old enough, 
she wants to volunteer to be a camp counselor too! :)

 


I cant put into words how much it means to us that you all do SO much to make sure these children have a great time. Thank you for making my child "feel like a regular kid" and for making her little sister feel extra special too. Its something they will remember for the rest of their lives.

Saturday, September 8, 2012

For my friend

Sweet Meri,

I started this blog post days ago. I have written, erased and rewritten it a hundred times. I just can't find the words. That's probably because there are no words. Nothing I can say is going to help you feel better. Nothing I can say is going to heal your heart right now. But I want SO badly to try.

Meri, I'm sorry. I'm so very sorry this had to happen. I want to say and do all the right things to help you through this. I have thought and prayed and cried wondering what to do or what to say to help you. But now I realize all I can do is be there for you. Listen when you need to talk. Cry with you when you cry. Get angry when you get angry and hug you (from afar) when you need one.

I'll be there, friend. We will ALL be there for you. Any time. Day or night, we will be there. Because we love you and that's what friends do.


♥ SCL and MTW ♥ 



                   ************************************************************************




For my non DOC friends, Meri is the mother of 4 boys. 3 of her boys have Type 1 Diabetes. Her husband, Ryan, was diagnosed with cancer 6 months ago. He passed away last Sunday, 9/2/2012. Please keep Meri and her boys in your prayers. We have also set up a (second) fundraiser to help Meri and the boys through this difficult time. Meri will still have lots of medical bills to pay as well as diabetes supplies for her boys. So anything you can spare, $1, $5, $10 or more. It all adds up. Please click on the fundraiser below to help this wonderful family. Your kindness during this difficult time is very much appreciated.





Medical Fundaising Made Simple

Monday, August 20, 2012

My Worry

It's been almost 8 years since Bee's T1 diagnosis.

But my worry didn't start then.

It's been over 10 years since she was in the hospital with what we found out after a week and a half in the PICU were PAVM's. Stealing her oxygen, making her weak and, as I was told, may have taken her from us had we waited one more day to bring her in.

But my worry didn't start then.

It's been 12 years since the first time I took her to the ER. Lips blue, gasping for air and coughing from what I now know was asthma (and possibly the early stages of her problems with the PAVM's).

But my worry didn't start then either.

My worry started the day I became a mother. Even with a perfectly healthy son, my worry started then.

You never know what can happen. And as a new mom, you just....worry. What if they get sick? What if something happens while they sleep? What if, what if, what if...

Then the "What if" did happen. We were close to losing our sweet girl, and although my worry had always been there, it was amplified by a million.

There are times when I think about how close we came to losing her. Every morning when I walk in her bedroom to wake her up, I worry that I won't be able to.

There. I said it "out loud". I worry that she won't wake up.

I know we all do it. Parents of perfectly healthy children worry about it occasionally. But I worry EVERY. SINGLE. MORNING. And it's scary.

This week, I am feeling a hundred times more emotional than normal. This week I know a mother who lost her child. Her son was a good friend of my son. He was only 15. I attended his memorial service on Saturday and my heart broke into a million pieces. For his family, for my son, for every parent who ever lost a child.

And it made me mad. Knowing this can happen, it made me angry. And yes, it made me question things.

I don't want to spend my whole life worrying about the "what if's". I've been letting it take over my life. I really have. There are nights when I just can't sleep because I am so scared of something happening. Bee hasn't been to a sleepover at a friends house, because I am too worried something may happen. I worry. A lot. And I feel like I'm wasting precious moments by doing that.

All of my feelings are very valid, I know. But If I worry constantly, like I have been, it's going to take some of the joy away from being a mom to my fabulous kids.

But how do I get past this? How do I stop worrying SO much that it consumes me as much as it has been? It has been going on for SO long now, that I don't know if I will ever stop worrying this much. And really, how much is too much? Is this bordering on crazy?

Maybe talking it out might help? Maybe hearing that others feel this way too? Or that it's normal with what we are dealing with? I don't know.

But I really would like to enjoy my children, without this constant worry hanging over me. I just don't know how to make it go away.

Wednesday, August 15, 2012

Well, hello there!

Just a quick post to bring my blog back to life. It's been a while. A long while. But I miss writing. I keep having possible blog posts pop up in my head, but I haven't typed any of them out. I feel like I have a little more time to do so now, so here I am.

Just to update.....The kiddo's are dong well. I now have a 10th grader, 7th grader, 3rd grader and 1st grader. They are growing up way too fast. I don't know how to slow that down.

Other than that, life has been (thankfully) pretty uneventful. Well, for the most part. But I'll save some of it for another blog post.

So, please come back and look for more soon! :)