#HAWMC Last Day!!

Today is the last day of the Health Activist Writer's Month Challenge (#HAWMC) for Wego Health. I always love participating in these challenges as if forces me to make time to write and I don't force myself enough. So thank you to all who checked in on my posts thru the month and a BIG thank you to those who stuck it out with me all month long! I am humbled that you take time out of your day to listen to my stories.

And a big thanks to Google Images for providing some options when I had none! 

#HAWMC: Day 29: I Wish I Would Have Known...

What do I wish I would have known at the beginning of our patient journey that I know now?

That it will be okay.

But seven years ago when we were at the HTC with our then newborn baby boy waiting on a diagnosis I would’ve never thought that. Then getting the hemophilia confirmation and a three day stay in the NICU…I would’ve said, “no way”. As Jackson got older and my heart jumped to my throat with each new milestone I realized that it IS going to be okay.

We now self-infuse and have been for a while. I’ve met with local and state Congressmen to advocate for hemophilia. I’ve always had a voice but it’s become louder and with specific purpose. If you would have said I would be a mentor to newly diagnosed families I would have said, “You’re crazy”! Or blogging for our hemophilia adventures or serving as a Board Member for our local Chapter?! Say whaa?

This week I sat on a panel discussion for hemophilia with our local chapter and HTC for newly diagnosed families. I was them not that long ago. To sense their fears, concerns and knowing what the road ahead looks like for them but knowing in the end they will ultimately be ok. Their family unit will be stronger and they will be well equipped to speak their mind for their sons who are not yet able to speak. It’s a journey I’ve come full circle in and yet I’m still learning.

So if you are a newly diagnosed family or established family with a bleeding disorder that needs some encouragement…It’ll be okay. 

Captain Jackon

#HAWMC: Day 28: H.E.A.L.T.H.

H-Hemophilia

E-Educate

A-Advocate

L-Live

T-Tourniquet

H-Healthy

Hemophilia graphic thanks to Google Images

#HAWMC: Day 27 Bye, bye, bye

Dear Hurtful Person,

Consider yourself lucky that you or your child doesn't have a bleeding disorder. 

Consider yourself lucky that you have never had to poke your baby and do an IV infusion three times a week; sometimes more.

Consider yourself lucky that with any bump, scrape, bruise you can hug your kid, dry their tears and send them on their way without wondering if that is something you might need to infuse for.

Consider yourself lucky that you have no idea how expensive it is to have a hemophiliac. 

I have a 7 year old son, Jackson. He was born with severe hemophilia A, factor VIII deficiency. He is missing a protein that makes his blood clot. We administer infusions twice a week to clot his blood and let him be a "normal" boy. You cannot see hemophilia. What you can see is a handsome blonde haired, hazel eyed boy who is solid, has a great smile, is competitive, loves to give hugs, has a caring heart and talks about and play sports.What you cannot see is an internal bleed. He can feel it and many times he feels is before it swells and we can physically see it. He may need to ride in a wheelchair, even though he has no visible broken bone casts, because he can't bear weight on his foot due to an ankle bleed. He may need to use crutches because he has a joint bleed. He may look like he is "faking" an injury but he isn't. Just because YOU can't see it doesn't mean it doesn't exist. 

I'm not sure what myths/lies you've been told about hemophilia but it did not come about from incest, as much as TV loves to glorify things. Yes, hemophilia was known as the Royal Disease as members of many royal families did have hemophilia. No, hemophilia is not contagious. No, my son will not bleed to death from a paper cut...he will bleed, a little longer than you, but he will not die (and we've been asked that a million times!!) My son can be a rowdy, rough and tumble boy like any other boy. 

Hemophilia can side line him from having fun just as a cold or allergies can side line us for a day or two. We have brought our son up letting him know that hemophilia is just a part of him...it doesn't make him who he is. Jackson is wise beyond his years. He understands compassion for all. He knows physical pain and emotional hurt. He knows empathy. 

I don't blame you for not knowing about hemophilia. There are plenty of illnesses and diseases I know nothing about. Ask questions, don't assume you know anything about hemophilia. And if you are asking question please listen to what we have to say. And most importantly, treat my son like a human. He has thoughts and feelings too. Showing compassion is a wonderful trait and appreciated by the ones who need it most. 

Sincerely,

Jackson's Mom

Photo credits: Google images

Day 21 #HAWMC: Reflection

Reflect on your journey today. What are your thoughts and hopes for the future?

I cannot imagine what my life would be like if it didn't take the path that it is on now. I cannot imagine a life in which I only went to Doctor appointments because the kids needed a well check up or sick visit. I cannot imagine not traveling down to Cincinnati Children's Medical Hospital monthly (sometimes weekly) for the kids various appointments. I cannot imagine what in the world I would blog about!! You see, I wouldn't wish this journey on anyone else but I have to say we've had a pretty good journey. We are blessed with a top notch Children's Hospital not 40 minutes away from our house. We are blessed that I have a voice and can use it, very loudly at times, to advocate for my kids when it comes to care, insurance and with members of Congress. And for those of you that really know me...I'm sure I could find something to blog about!! On this journey we have met some amazing people in the hemophilia community that I wouldn't have met any other way and for that I am grateful. We have been given opportunities that we wouldn't have been given if not for Jackson having hemophilia. Do I wish he didn't have hemophilia...you bet; however, he does and I can't change that fact so why not make the most of it, the situation and the journey?

My thoughts are many as are my hopes for the future. We are grateful to live in a time of prophylaxis

treatment so that we may treat proactively and on demand if needed. We are also grateful to live in a time of new factor products coming to the market that will prolong the life of factor in the body which mean less pokes for my son. I'm not sure what the future holds for us but I am ready to see where it takes us as this is our journey to live. 

Thank you Google images for this photo.

Day 20 #HAWMC: Travel Time

If you could travel anywhere in the world, where would you go and why? We know traveling with a chronic illness can be challenging, so any tips for others that you can share would be great. 

I'll be honest. We don't really travel. In our almost 21 years of marriage and 10 years of chronic illness being in our lives we have traveled (long distance) four times; Disney in 2006, Chicago in 2011, Texas and Bonita Springs, Florida in 2013. We have traveled by plane and by car. The best tip I can share with you is to use a carry on piece of luggage to pack ALL your medical supplies and if you plan on being gone for a week, pack enough supplies for 2 weeks and a possible worst case scenario. Think about it...there would be nothing worse than trying to locate a pharmacy in a town you are vacationing in the middle of the night because you forgot to bring or ran out of XYZ. Even if you think you won't need it, bring it!! Doctors travel letter...go ahead and get that too. It takes but a minute to request it and can clear any problems that you may encounter at the airport should you have that letter in hand.  It takes some good organizational skills and some careful planning but you can do it! It is a little stressful to be sure but if I packed supplies for my hemophiliac son and two Type 1 diabetic daughters for a week long stay in Florida than you can too!

Traveling with hemophilia and diabetes. 

Day 19 #HAWMC: Stress Awareness Month

What's the best way to deal with stress? How do you like to let loose to escape common stressors? Share your favorite ways to shake off the stress. #shakeitoff

If you've been following along since the beginning of the month you know I relieve a lot of stress by running. However, one of my favorite things to do is be creative. I love making things; be it painting on a canvas, finding a craft on Pintrest and duplicating it (well, trying to) or coloring. Yes, I said coloring. Many years ago, each December I would purchase a coloring calendar from Mary Engelbreit. Late at night, after my kids where asleep, I would take my calendar, colored pencils and sharpener and give life to my coloring calendar. I spent time shading and creating different shades of color on each monthly page. When my girls were older they would ask to color. I wouldn't let them. It was my special coloring calendar. I know that must sound harsh but it was my stress relief. I think one year I let one of the girls color a little bit but this is one area I am justifiably selfish. I'll share my candy bars, my ice cream, my shower time, the bathroom plus a host of other things but darn it...the coloring calendar was mine!! As the years went on I couldn't find these calendars anymore and by then I had upgrading to a huge wall calendar with different colored post it notes per child due to the increasing activity. Then a few months ago while scrolling through Facebook I came across an ad for an adult coloring book available on Amazon. I immediately searched for it only to find that it was sold out. Last week as I was scrolling Facebook Mary Engelbreit had posted HER coloring book and that it was available for purchase at her store. I immediately clicked the link and purchased the coloring book. I was SO excited when it arrived in the mail last week! I even went out to buy my very own colored pencils (I splurged for the 24 count). I find that when I'm coloring or creating that I am deeply involved with the colors and how I want the page or canvas to look like that I forget everything else. I am at peace. With my busy schedule I don't have much time to be creative but I sure do long for it and enjoy it when I get to create!

One of the pages from the Mary Engelbreit Color Me Coloring Book

Two day post...Day 17 & 18 #HAWMC

Sorry for the double blog post today...yesterday was World Hemophlila day and I was busy attending a lunch meeting with our local hemophilia chpater, the TriState Bleeding Disorder Foundation, as we are planning our 4th annual scavenger hunt through downtown Cincinnati. It is a great time! 

Day 17: Health Tagline

This is a tough one...yesterday I saw several hashtags in coorelation to World Hemophilia Day. While I know "strong" is overused I did see #hemostrong. I like this one as truly our little hemo's ARE strong. Having to endure two, three and sometimes more IV infusions a week is strong. Having to deal with a bleed is strong. Sitting out of fun activities becasue they have a bleed is strong. So, yep, that settles that...#hemostrong. 

Day 18: Summer is Coming! 

What 3 things do I look forward to the most in the summer?

1. NO homeowork
2. Corn on the Cob
3. Bonfires

What do you look forward to doing in the summer?

Thank you Google images for the Summer clipart! 

Day 16: #HAWMC Life Goal

What's one thing that your 10 year old self though you would do? Can I still do it? How would you approach it to make it happen?

Wow...I can't remember what I did last week let alone what I did when I was 10 but if memory serves me than I would've been in 4th grade. I LOVED 4th grade and my teacher, Mrs. Soldo. She didn't have any of her own kids and yet treated us all as if we were her own. She loved each of us. I was really into rainbows. I had the rainbow comforter and pillow sham for my room...I had the rainbow 3/4 length shirt that I would wear to the skating rink...I drew rainbows everywhere. They made me happy. My teacher had given me a folder that was like a color page filled with rainbows. She knew each of us just like that. It was then that I wanted to be a teacher. However, as I grew up and the years went by; what I wanted to do changed over and over again. But when you think about it, I am a teacher. I teach my kids. I teach administrators. I teach people about hemophilia. So while it wasn't my chosen path I ended up teaching anyway!

Thank you Google Images for the rainbow! 

Day 13 and 14 #HAWMC: Perfect Comeback and "I feel best when..."

Sorry about a double post today. I was in Columbus, Ohio with Jackson last night and today storming the Capital advocating for hemophilia with the Ohio Bleeding Disorder Council. It was a jammed packed evening and day that was wonderful but I'll save that for another post.

Day 13: The Perfect Comeback: I have many comebacks...what can I tell you; I am a smart ass. Sometimes the comebacks actually come out of mouth and other times I'm left speechless and the comeback comes out hours later and I kick myself for not having been witty enough at the time to spew it out. One happened not that long ago. We live in a quaint Village in a home that was built in the late 1880's; wood siding, metal roof, wrap around porch...I just love it. In 2005 we decided that we needed to paint our house. I wanted bold colors because...really?! Why not?! My hubby, gawd love him, thought he could power wash the old paint off in a weekend and paint the following week. I knew better. Imagine his surprise when the high pressure hose was NOT taking off the paint. So we scrapped...and scrapped...and scrapped some more. The weekend we started this project was the first week of June and hotter than hell. Not two days into this project our then 4 year old was diagnosed with Type 1 diabetes. Talk about a life changing whirl wind time. That was also 5 days in the hospital learning how to keep our daughter alive. We muddled through that summer and the following summer and got the house about 85-90% done. Life got crazy. Jackson was born and when he entered Pre-School we also refinanced our house. One of the conditions was to finish the 10-15% of painting that we didn't get done. No problem. I could do that while Jackson was at school. Well, little did I know how much our lack of painting the one side of our detached garage angered our neighbor. One of the days I was finishing up the painting he comes out and says, "well, it's about time you finished this side of the garage!" To which I looked right at him and said, "well, the year we started painting our daughter was diagnosed with Type 1, later our son was born with a bleeding disorder and our eldest daughter was diagnosed Type 1. So excuse me if I was busy keeping my kids alive with their chronic illness instead of painting the garage!" Needless to say he fumbled with some incoherent words and walked away.

Day 14: "I feel best when..." when I come up with timely, witty comebacks!! Ha!! No, really, I feel best when my kids are happy, I have a refrigerator full of food (and medicine!!) and my biggest supporter, my hubby, by my side. Sappy? Yes...but it's true!

I thought I had a picture of the front of our house...but this is the side...you get the idea!

Day 11 and 12: #HAWMC Pet Pal and Day of Rest

Sorry about not posting yesterday...if you've been following along you know I'm training to run a half marathon. Yesterday I participated in a 20/12 run. This means if you are running a full marathon you run 20 miles.. if you are running the half you run 12 miles. So I ran 12 miles; which was fantastic...beautiful day running through different parts of our fine city. I came home, showered up and sprawled out on the couch all day!! So needless to say I was worn out. So I will double post today.

Pet Pal: this past December we rescued THE best dog ever!! His name is Dizzy and he is a Goldendoodle. He is seriously the greatest thing that has ever happened to our family. He fits right in. He loves to play ball with our son...it doesn't matter if it's football, baseball or a big bouncy ball...he is all for playing and bouncing it back! He listens and is just a great dog. My kids love snuggling up to him and he LOVES attention and will greet you each time you walk in the door as if he hasn't seen you in a month...even if you've only been gone a few minutes or all day. He always seems to know when you need a little extra lovin'.

Day of Rest: One of my favorite things to do is take our 1979 CJ7, aka the Black Pearl, out for a spin. It has quirks so it is not our daily driver...it's our fun Jeep. It doesn't matter if we take it around the block, to the grocery, downtown or off road it's just good for the soul. It's been down for the count since this past fall when we found out the hard way that our brakes went out. My hubby is trouble shooting as he bled the line and still no brakes. But when it's up and running it's a blast! It's one of the few things I do where I just let go and enjoy the drive. Now...if we can just figure out the brakes...

Dizzy and Captain Jackson! 

the Black Pearl

Day 10: #HAWMC Comfort Food

Comfort food...I LOVE me some mashed potatoes!! It took me a while to perfect my potatoes but it was worth the lumpy wait. They are the ultimate in fluffiness and taste. I try not to make them too often as I tend to have them as my main course instead of a side dish.

I also LOVE to bake. Many times I will bake something and not eat any of it. It's just the act of making something for someone that makes me happy. I remember when I was dating my hubby and this new cake mix had just come out. I was dying to try it. So I ended up making it when I got off work one night and drove it to his house 35 minutes away at 10pm to share it with him and his roommate.

I enjoy trying new recipes and cooking. There is something satisfying in creating a meal and having it come out great and it also gives us memories of dinners that maybe didn't turn out that great. I wish I had more time to craft our dinners but let's face it...many nights I'm lucky to get something cooked in time for my family to eat before we are out the door for sports, school events or meetings. In fact my eldest  daughter just asked me to teach her how to cook. I decided that she could plan a menu for one night. Let me know what I need to buy at the grocery and she can own the meal. This should be interesting!! I guess that cooking reminds me of family as we are usually able to gather together at night and enjoy as a family. Sharing our days, our hopes, goals, laughter gathered around a table of love.

Thanks to Google images for this cute diner clip art! 

Day 9 #HAWMC: Challenger

Today I am going to share with you a time I had to overcome a daunting challenge. Are you kidding me?! Having three kids with two different chronic illnesses is daunting everyday...some days more than others. But I'm going to go beyond that. If you have followed along since the beginning of the month you have read that I'm a runner. It sounds weird to say it but yes, by gawd...I'm a runner. I have never been so scared of anything (besides creepy crawly things) than signing up for my first half marathon. Remember, our family is competitive and I had been challenged so I HAD to do it. It's a huge commitment. You don't just wake up one morning and decide I think I'll go run a half marathon today. (I should preface that most normal NON runners don't wake up saying this!!) You must train. Even when you don't want to. You must schedule time for it just like you do for an oil change, haircut, doctor appointment or meeting. The making time for it can be a challenge all by itself. It's a sacrifice for everyone. But my family knows on Tuesdays I'm usually not home all day between work and then my evening run. They also know that on Saturday mornings (before the sun even rises) I am running and depending on how long the run is scheduled I may not be home until mid-morning. Some days that is a challenge but my hubby is supportive and does his part so that I can attend these runs. Now, the daunting challenge. There are days when I go for a run that I just hit a wall. It sucks. My cadence is off, my earphones don't fit right, my breathing is off, my to-do list is mentally taking me over and I just don't feel like running. You know...when you feel like giving up. When I hit that wall it's like a light switch flips on and I immediately think of my kids. They NEVER give up...it's not an option. They push through any challenge they have. When Jackson has a bad poke...he pushes on as he know he needs his factor dose. When he gets a bleed he knows he needs to rest it, factor it and then pushes on. I think of him sitting so still while he receives his infusion with a smile on his face, a big high five and a thank you when he is all done and I think, "I'm complaining because running is too hard?!" That's when a get a big ol' smack of reality and push myself forward...usually with tears streaming down my eyes but I push forward. If they can do it...so can I!!!

I Run...I'm slower than a herd of turtles stampeding through peanut butter...but I Run! 

Day Eight #HAWMC: Things Remembered

Today I am to share with you an item I have kept with me that reminds me of an important time in my life...whether it was a good day, a stressful time or a happy moment...why does this item remind you of that period of your life.

Hmmm...this one is difficult. I do save things. I have the cake topper, bouquet, headpiece and champagne flutes from our wedding proudly displayed in a cabinet that belonged to my hubby's grandfather. It is in my computer room...I pass it everyday and yet I don't think I really ever look at it. I have boxes marked and filled with papers from when my kids have done well on a test or made a cute picture that I have saved since they were in preschool. I have them labeled and will give to them once they have a place of their own. I have pictures of my family displayed around my house that I update as needed. But there isn't one thing that is my go to for things remembered.

I think maybe it's because I'm too busy living in the present and moving towards the future. Sure I like to look back at how the kids were little but I don't do it too often. It makes me a little sad. When they were little I was waiting for them to get grow up and now that they are growing up I just want to make them little again.  I've never really treasured things...I treasure memories and fun times, laughter and being together. In fact if my house was to go up in flames and I lost everything, as long as I had my family, I'd have it all. So now that I think about it...the item that I have kept with me is my family.

Easter 2015

Day 7 #HWAMC: World Health Day!

Happy World Health Day! (who knew) This blog challenge prompts me to talk about diet and daily nutrition and how it has changed since diagnosis. Well it hasn't. Jackson can eat whatever he wants. What I will talk about is exercise. Our family is huge into being active and we all share a competitive streak. It's not often you find us vegged out in front of the TV all day...and if we are we must be near death! Exercise is good for hemophiliacs. It's good for their joints and overall health. Jackson has played in a basketball league called Little Hoopsters. It's not scored, it's instructional but most of all it's fun and active. When he first played I think he enjoyed racing a kid, any kid, from the other team, down the court more than trying to make a basket! It was great to watch and he enjoyed it. He did have an ankle bleed at one time so he missed a game but all in all he played the season injury free. If you've been reading my posts from the beginning of the challenge you know I'm a runner. Jackson decided that he wanted to run with me so I took him out. He, however, went full speed ahead as he couldn't let me be first (this is where the competitive streak I talked about earlier comes in!!). He would get ahead of me and stop, out of breath, panting "my side hurts, my side hurts". So I told him about slowing down and breathing as he runs. I then run ahead of him and he sprints ahead of me and it goes on and on...but he was active and it was pretty funny too! We also have a gym with free weights and bench presses. He loves to go and workout with his Daddy. He works on his abs, "Mom, look at my six pack...do I have a six pack?" (It's really more like a keg.) He works on his push ups. I'm rather impressed as he can do a perfect full push up about 8 times. We have mini weights that he likes to use for his biceps or his "guns". Every exercise is monitored and low impact. Enough to get his heart rate moving and to spend some time with his Dad. I know it was scary to think about playing sports or exercising when I was a new hemo Mom but it works for him. Don't be scared of it! Exercise is good. If you have questions be sure to consult your hematologist but there are plenty of fun, active things that hemophiliacs can do!

Here is Jackson being active!! 

Day 3 #HAWMC: Good Samaritan

Today I am to share a random act of kindness. My family and I have been the wonderful recipients of random acts of kindness...so many that as I recount which one to share with you I am overcome with a sense of gratitude and humbleness. As some of you know I have two daughters with Type 1 diabetes in addition to my hemophiliac son. I have a friend in the diabetes community who makes these wonderful pouches for people to wear around their waist and it holds their diabetes supplies and insulin pump. She also makes medical alert bracelets and sent one for my son to demo. It was such a simple gesture and yet so unexpected. He loves it...in fact I need to order a new one for him as he has about worn his out! You can check them out here: Tallygear. I love when others think of our family. I also love being able to help others and do so every chance I have. I want to thank the many people who have helped us throughout the years and challenge you to pay it forward the next time an opportunity comes your way.

Picture credit to Tallygear at tallygear.com

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.