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! 

Day 30 of 30!! This is IT!! Recap #HAWMC

Wow!! I (we) did it! (Sorry...I'm double posting for Captain Jackson's Hemophilia Adventure AND Blue Heel Society)  I always enjoy participating in WEGO Health's: Health Activist Writer's Monthly Challenge. The prompts get me to think outside of what I might normally post...which is good and sometimes funny! This month I started out blogging in Florida with our FIRST family vacation since having Jackson, our hemophiliac son, who is five years old. Talk about independence!! It felt great knowing we could infuse our son ourselves...no need for the HTC nurse or home health care. We got this! I nearly ended the month in Texas while attending a Hemophilia convention. So in 30 days I've managed to blog in 3 different states...pretty good for a family who hasn't gone anywhere in years! I hope you have enjoyed following our blog posts everyday and THANK YOU to those who did!! I am humbled by your support. I will tell you this now...I'm taking a break from blogging...just a little one (for those of you that know me; you know I won't be on break for long!!)

To sum up my #HAWMC experience in one word:

supercalifragilisticexpialidocious

Day 29: #HAWMC: Congratulations!

Ugh!! Today I need to post three things I love about myself, things I'm good at or just want to share. I'd rather talk about my kids because after all...if it weren't for them and their chronic illnesses I sure wouldn't be sitting here blogging away!

Because of them I love:

1. The fact I can talk to anyone about their chronic illness.

2. I can advocate. Meeting with lawmakers? No biggie! That's what they are there for...meeting with us, the voters and wanting to hear our story. Doesn't mean they are going to vote our way but at least we can meet with them.

3. I have learned to not judge a book by its cover. Maybe the kid that's throwing a temper tantrum in public isn't misbehaving...maybe he is having sensory overload. The kid that cries everyday before she goes into school may have anxiety issues.  My son is covered in bruises...I don't beat him...you can't see his hemophilia. The point is don't be so quick to judge. Just because you can't see it doesn't mean it isn't there.

My kids! 

Day 28: #HAWMC Must Follow

Today I'm going to share with you the top must follow facebook/blogs/pages in the Hemophilia community.

This is great too because I'm sitting here in Texas at the Hemophilia Foundation of America's Symposium where I have spent the past several days meeting some really great people.

1. Stop the Bleeding! A comedic web series. You can find it here. Patrick James Lynch is the man behind this web series and he just so happens to be a hemo himself. What he is doing for the hemophilia community, teens specifically, is truly inspiring. I can't sing enough praises about this man. I stand in awe of his humble, comedic persona and hope that my son will one day do the same great things for his bleeding community.

2. Save One Life, Inc. is a wonderful international nonprofit that provides sponsorship for people with bleeding disorders in developing countries. You can read more about them here. Not having factor available to you when you have a bleed is unacceptable but sadly this happens in developing countries. No one should ever have to go without their life saving medicine.

3. Hemophilia Federation of America or http://www.hemophiliafed.org/. This is a great resource for ALL bleeding disorders.

4. National Hemophilia Foundation or http://www.hemophilia.org/.  This is another great resource for ALL bleeding disorders. Both the HFA and NHF have annual conferences to hear the latest on research, parent, caregiver, bleeder break out sessions and a great way to network but more importantly to meet other families going through the same things.

5. Barry Harrde is an inspiring man who lives with hemophilia  He is behind the Wheels-for-the-World-with-Barry-Haarde in which he rides a bike for 30 days 3,456 miles and raises $35,000 for the Save One Life, Inc. He is an inspiration not only for riding his bike that long with hemophilia but he is also HIV and Hep C+. He is not letting anything stop him from reaching his goals. I am happy to cheer him on and hope to meet him as he cycles through town!

6. Vaughn Ripley is another inspiring man with hemophilia. He also is HIV and Hep C+. Vaughn and Barry are living life despite the odds of having the the tri-fecta (Hemo, HIV and Hep C). They are an inspiration to me and should be to you too! You can read about him here. He has a book entitled Survivor: One Man's Battle with HIV, Hemophlia and Hepatitis C.

I challenge you to check out one of these facebook pages/websites. I enjoy finding people that inspire me to be a better person and a better advocate for my son, Jackson.