Wordless Wednesday! #HAWMC Day 1 of 30

                That photo bomber, Captain Jackson, is the reason I advocate for Hemophilia! #HAWMC

Bleeds, Bleeders and Beards...oh my!

Have you noticed how hairy it's become lately?! I know I have!! Especially in my house. A few months back...actually, September 1st my mildly hairy husband shaved it all off. He was as smooth as a baby's butt. 

Look at that baby smoothness! 

So, what's the big deal? Well...fellow Hemo friend and Dad, John Bruno, came up with a plan...a movement if you will...

And thanks to fellow Hemo brother, Jay D. Bishop for the awesome design!!

It's all rather hairy if you ask me!! But what better way to raise awareness for Hemophilia OR any bleeding disorder than growing a beard. I know my hubby has been getting a lot of attention with his Grizzly Adams look. To which he happily replies "I'm growing my beard to raise awareness for my son's bleeding disorder, hemophilia". Oh...did I mention they are growing their beards for six months? Just in time for Hemophilia Awareness Month! You can check out the website HERE. The goal is not only to raise awareness but to raise funds for your bleeding disorder charity of choice. We are choosing our local chapter, the TriState Bleeding Disorder Foundation. Our local chapter has been wonderful not only to us but to all the families and individuals in our area. We would love to give back to them as much as they give to us through Educational Days and conferences, outreach events, hemophilia camp and support groups. If you feel so inclined we would love for you to sponsor Joe's beard!! While I'm setting up a fundraising page you can send your tax deductible donation to http://www.tsbdf.com/. Just let them know you are supporting the bleeding community AND some hairy bearded dude named Joe. 

Here's Captain Jackson growing his beard. 

Joe's 9 week picture!! Can you say Grizzly?! 

Hemophilia sure is a pain...

I mean, really. It is. A pain.

It was a Sunday night, our middle daughter, Nora, is an 8th grader. It's her last year at this school and her last basketball home game. We started celebrating as a team at a local pizza place, watched a video of the girls through the years and headed over to the school gym for their last home game. We had huge photos of the girls on the gym wall with their jersey number hanging below. I had invited my whole family for this fun night.

Jackson was killing some time before the game started and he was in Ninja mode. He was having a great time. Working out some energy. Being a boy. It wasn't until we took our seats about 10 minutes before the festivities were to begin that he looked at me and said, "Mom, my arm hurts." I sighed, a little. Thinking that we didn't have time for a bleed. As if we ever have time for a bleed, right? Wouldn't it be nice to say hmm...we have nothing planned on Sunday at let's say noon...shall we pencil in a bleed? That would be something. Anyway, I take a look at his arm and by looking at it I know he has a bleed. I find my hubby and let him know Jackson has a bleed. He immediately goes into the "if you wouldn't have been horsing around" to which I immediately hush him. It's done. He had fun. He has a bleed. It's not bad. He's a boy. I don't want him overly timid because he is afraid he will have a bleed. That's what factor is for. Let him be a kid.

My Ninja Jackson

Too late. Jackson had heard some of it and got MAD. All the while knowing that at any minute we had to set up a little walk way and get announced with our daughter for 8th grade night. Joe wants to immediately leave but I told him to hold on. We HAD to walk our daughter down the walk way. (Side note:

the bleed was on his arm...he had full range of motion, no discoloration, minimal swelling...hemophilia was gonna have to wait 5 minutes.)

We ran down to the court, organized a make shift walk way, walked our daughter down the basketball court, got a photo and Joe bee lined it to the bleachers, picked up Jackson and went home to factor up.
The whole time I'm pissed that hemophilia got in the way. That Jackson had to leave the game early because he had a stupid bleed.

The game was over. We went home and Jackson was factored up and  RICE'd. He was with his daddy and watching what he wanted to watch. He was fine and that bleed was sooo 60 minutes ago. Just goes to show how unpredictable hemophilia is and how it likes to mess your plans up no matter how important they might be.

Surviving the first lost tooth!

I've been bad about blogging lately. It's all good. Busy living life! However, this summer we can check off a milestone for Jackson. It's the same milestone that I've worried about as a Hemo Mom...the dreaded lost tooth. I've known it was coming. His dentist kept telling me for the past year that he has a wiggly tooth at every cleaning we went to. But I still worried.

How would he lose it?

Would it be the kind that hangs on for dear life?

Would it be wiggly for months?

Would it bleed?

So I get a call while at work. My kids know not to call me unless someone is dead, dying, bleeding or broken. Texting is fine for other things but calls are left for the serious issues. I answer my phone and it's Jackson on his sister's phone. "Mommy? I lost my tooth!!! I can't find it!"

I calmly reply "congratulations!! And what do mean you can't find it? Put your sister on the phone."

His sister then tells me they were looking at themselves in the mirror. Being all silly and practicing various smiles when she notices he has an open space between his teeth. The good thing: he lost it and didn't even know it AND he didn't bleed one drop, not even a speck. Not that it would've been a big deal as we would have administered Amicar and factored up. But that he was able to have a non-bloody lose tooth event was great! I realize that they won't all be this way. But I'll be happy with this little victory!

The photo his sister took and text me just after losing his tooth!

Since we never did recover the tooth we wrote a letter to the Tooth Fairy to let her know! 

Destination Me: Day 3

If your late to the Destination Me campaign  way of life...I'll fill you in. My friend started Destination Me as a way to gain some "Me" time you can read about it here and my commitment blog entry here. I wrote about running and missing that ability to find Me time since school was out for my kids. But now that school is back in session it was time for Me.

So I ran.

That was a week and a half ago. I started feeling bad about not making Me time a priority. But then I thought about some of the things I did do and realized I found Me time with others. I know...that sounds weird but essentially it's Me finding time to do the things Me wants to do. And running is just ONE of those things.

I met a friend last Monday...we had a Jeep adventure, had coffee and talked for hours. So long I almost missed a conference call meeting. No, I wasn't by myself but it was still Me time. I ended up taking the conference call at the coffee shop and in doing so I ran into another friend I hadn't seen in a few years! It was wonderful to catch up with both my friends and enjoy being able to have an adult conversation. Without interruption. It was Me time.

Today, I happened to be able to run. And clean out my ever increasing inbox. Which was more like work but I was free to do it and it felt good!

And today...this is what my Me time looked like about mile 3...U2's Bullet the Blue Sky playing in the ear buds and this magnificent view.

Have you found your Me time?

It's never too late to join in!

I found some ME time...day 1!

I found IT!! I found 1 hour to myself to go out and run...well, truth be told, I walked more than I ran today. BUT I was out and about! It's been months since I've been out and my body was yelling at me and my brain was like, WHOA! But one has to start somewhere.

This pic was taken just as I went out for my ME time. By the end, I didn't nearly look as cute but I still had a smile on my face! Feels good!

What have YOU decided to do to find your ME time?? Share in the comments below!! I'd love to know and cheer you on!

Destination ME...inspiration from a friend

It is so hard as a caregiver to find time for yourself. Add in the fact I'm a caregiver to three kids with chronic illnesses and the ME becomes THEM. About 6+years ago I was a regular at the gym. I went 3-4 times a week. It was great. Both my girls were in school full days. I only had one Type 1 diabetic and had a great school nurse. My phone was connected to me should I need to be contacted but I had at least an hour to myself at the gym. I took all kinds of classes plus worked the free weights. I even worked out and adjusted my routine while I was pregnant with my son, Jackson. I worked out up to the day I gave birth. I felt great. Re-covered fast and had lots of energy. 

But then we got the diagnosis of hemophilia just days after his birth. It was unknown to me (even though I was a carrier). My plans for putting him in daycare at the gym so I could continue to work out were gone. I couldn't expect the gym childcare staff to understand bleeding disorders and make sure he didn't get whacked on the head etc. I didn't think it was fair to them. I tried to work out in the evening when my hubby came home but with dinner and school work it wasn't worth the hassle. Plus I was totally sleep deprived. A newborn and a daughter with Type 1 leaves little sleep. 

A few years later, my hubby was turning 40 and decided to create a fitness bucket list. I'm competitive and took his list to heart. We had a handle on hemophilia and prophy dosing. We had found a new normal. We started training for the Warrior Dash. It's an intense 5K mud/obstacle run. So we started training. My hubby lives under the philosophy of "Go Big Or Go Home" and decided we would also train to run a marathon. A what!?!?! I'm no 26.2 mile runner. The only time I would run would be if a masked murderer was running after me. But my competitive nature got the best of me and we started running. I found, unbelievably, that I enjoyed running. It cleared my mind. It made me feel good. 

Long story short...it was a brutal winter the year we trained. My hubby got the flu bad and laid him up all the while I kept training. He never regained all the progress he made. So I entered the HALF marathon myself. We did complete the Warrior Dash and I kept running for months after that. I completed another half marathon a year later, with a better time!! A few 5K and 10K races and then I stopped. Kids were out of school. It was summer. It was super hot and I hate hot. I got lazy and wrapped up in what my kids were doing. 

And I miss running. I miss the ME time. I miss the energy. I miss feeling good about myself. I miss ME! 

My friend, Hallie, has a blog, you can follow her here, that she dedicates to sharing her life as a caregiver to her daughter with Type 1. She has also made a proclamation of Destination ME. Each week she is going to give herself a goal. It may be small. It may be big. And she will try to adhere to that goal all in the quest for Me time. 

I'm joining her! Won't you join us?! I've decided I'm going to start running again...TOMORROW. It won't be fast...heck, it may even be a mall walkers pace but I'm going out there. 

You don't have to pick up running. Maybe it's picking up a good book. Finishing that scrapbook you started 5 years ago. Knitting a scarf. Creating a new dinner dish. Whatever it is...why not start now? Why not start some ME time? Even if it's only for 10 minutes imagine how much better you will feel mentally, emotionally, physically! 

I encourage you to try. It won't hurt...it can only help!