Thursday, April 30, 2015

#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! 

Wednesday, April 29, 2015

#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

Tuesday, April 28, 2015

Monday, April 27, 2015

#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 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. 

Jackson's Mom

Photo credits: Google images

Sunday, April 26, 2015

Day 26 #HAWMC: Make it a Great Day!

As we all know, hemophilia gets in the way sometimes. A bleed can stop us from having fun. A bad stick, be it an IV infusion or a port stick can be awful. Unfortunately, we've all had bad days. But today I'm to share with you 5 tips on how to make a bad day, a good day!

1. Take a deep breath. It's a moment in time...take it minute by minute if you need to but know that it doesn't have to ruin your entire day.

2. Focus on the positive. You've got a you have time to watch that series on Netflix that has been on your wish list!!

3. Lean on your family or friends. You know, the supportive ones. And if you don't have one then go on Facebook and chat with the hemophilia community...there is always someone on line!

4. Tomorrow is a new day. Fresh eyes on a new day gives you perspective and the opportunity to be thankful, yes, thankful, even for those crappy days.

5. Get some rest. I know, I know, I need to listen to my own tips but even a 15 minute cat nap can make your attitude and mood that much better. It can give you the added strength to tackle the situation.

I hope you have a great day!!

Thanks Google Images for a fun great day smiley face!! 

Friday, April 24, 2015

Day 24: #HAWMC Fitness Friday

How do I maintain a healthy lifestyle? What is my favorite exercise? How do I manage fitness with a chronic illness?

I have shared before that I enjoy running. I am currently training for a big marathon here in Cincinnati, Ohio; it's the Flying Pig. I am running the half marathon which is 13.1 miles. I have run the half twice before but this year I have committed to train with a running group. I didn't think I would like it but it has turned out to be fun running with others. Plus I have had a run scheduled every Tuesday evening and Saturday morning since January no matter the weather conditions. My hubby has our one car garage (sometimes much to my dismay) set up as a gym with flat/incline benches, weights, roman chair, straight bars and punching bags. I like to join him out there for strength training but don't get out there as often as I would like. I also like to take walks with my son to the local library. It's about 4 blocks over and as he said yesterday on our walk, "this gives us good talking time"!. Our family is constantly moving so being active is not only necessary but a way of life for us.

Jackson manages fitness with hemophilia by doing what he wants without me restricting him, unless, of course, he has a bleed. Ever since he could walk he was like the Energizer Bunny...he keeps going, and going, and going. He literally will go until he climbs into bed and then is out like a light. He enjoys participating in sports; so far he has played basketball and currently he is playing flag football on a local high school's field turf. Last week he made two touchdowns and got to play in the rain!!! He loved it!! Our family is always on the move and he likes to keep up and have fun. Our philosophy is to let him have fun...we can treat a bleed!

Captain Jackson on the football field! 

Thursday, April 23, 2015

Day 23 #HAWMC: Writers Choice

Today is writers choice...share a great story, opinion or tip.

The best tip I can give you is to get involved in your community. It doesn't matter if it's your local chapter or the national chapters or on line with a support group. Getting involved helps so much with the "I feel so alone" or the "no one gets it" days. If you are lucky enough to get support within your home and family that is great!! But it doesn't hurt to branch out beyond that. I can't tell you how much it means to me that the hemophilia community is always there for me and my family or how happy I am to be able to give a kind word or send encouragement to another family dealing with hemophilia. It's not just for us as parents either. It's a great way for our kids to meet other kids with hemophilia. It's important for them to be able to find someone who goes through the same things too. So are NOT alone!!

Thanks to Google Images for this stock photo. 

Wednesday, April 22, 2015

Day 22 #HAWMC: Hobbies

Today I am to share my favorite hobbies. If you’ve been reading my posts since the beginning of the month then you know that I’ve talked about running, painting, coloring and now that I think about it…writing. While I’ve mentioned these activities as stress relievers they are my hobbies too. I don’t nearly have the time to do all of them but I do enjoy them when I get the chance to participate. I like being creative. It allows me to submerge myself in the craft and not worry about doctor appointments, insurance bills, emails, pharmacy concerns or chronic illness. Pounding pavement helps me work out any stress and let’s face it…it’s good for me too.  What kind of hobbies do you like to do?

Tuesday, April 21, 2015

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 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.

Monday, April 20, 2015

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. 

Sunday, April 19, 2015

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

Saturday, April 18, 2015

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! 

Thursday, April 16, 2015

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! 

Wednesday, April 15, 2015

Day 15 #HAWMC: Get Excited!!

What revs up my internal engine...what gets me excited?!

It's meeting other people in the bleeding disorder community. We are such a small group but we are mighty. Meeting someone who knows what you have been through is exciting. While I hate that they know what we have been through they get "it". They understand the heartbreak of having to stick their child with an IV needle or access a port to administer the blood clotting factor. They get why your kid is covered in bruises...and no, it's not because you beat them! They understand your insurance frustrations. They know your fears of the cost associated with taking care of a hemophiliac. The get the worry of job security because you have to take yet another day off work due to a clinic visit or a bleed. They get all of that! It is comforting to know that I have someone to vent to outside of my home and they completely understand and know that I'll be there for them when the tables are turned. Together, the bleeding disorder community FAMILY can do anything!

Jackson and his hemophilia buddy, Austin and his sister Adalyn...our extended Hemophilia Family!! <3

Tuesday, April 14, 2015

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 get the idea!

Sunday, April 12, 2015

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 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'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

Friday, April 10, 2015

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! 

Thursday, April 9, 2015

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'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 can I!!!

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

Wednesday, April 8, 2015

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

Tuesday, April 7, 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 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!! 

Monday, April 6, 2015

Day 6: #HAWMC: My Hero

Today I am to share with you who my hero is...I don't have one; I have many. However, there is a certain group that I look to in the hemophilia community that I like to bounce ideas off, ask advice and look to when my son is getting ready to start school, a new sport or a new adventure. They are all around the age my hemophilia cousins would be if they would still be with us. If only I could go back in time and talk with my cousins. Ask their opinions on things. Listen to their stories. Seek their advice on how best to parent a kid with hemophilia. How I can be supportive and not restrictive. The tricks of the trade. Since I can't, I have Vaughn, Jeff, Ryan and Jay. They have survived the Hemocaust. They have seen loved ones and friends die from the bad blood in the 80's and 90's. Some of these guys have been through a positive diagnosis of HIV, Hep C or both! What I love about them is that first and foremost they live life! They take time to not only encourage me as a hemo mom but other new hemo moms, as well as, the entire hemophilia community. They have wonderfully different perspectives that I may or may not share but I respect them. Not one of them sugar coat anything and I like that. I know that hemophilia can be difficult but I also know I'm not going to bubble wrap my son. I want straight perspective from guys who didn't have prophy dosing as an option. I respect how they lived in an era of contaminated blood products and how they thrive now. I believe that we must respect our past to be grateful for our present and hopeful for our future. I hope that I am able to raise Jackson to be as awesome in advocating, spreading awareness and being a good role model for future hemophiliacs as Vaughn, Jeff, Ryan and Jay are to our community, family and me. Thank you guys for always being there for us! You are all my #hemohero. #hemolove

Sunday, April 5, 2015

Day 5 #HAWMC: Breaking News

Happy Easter everyone!! Today's challenge is just that...a challenge. I have to share with you my greatest accomplishments in the last 5 years. Meaning I have to brag on myself for this post; which is sooo NOT me! My positive attitude with a realistic approach is something that I can brag on though. I'm not rainbows, sunshine and pots of gold everyday or any day for that matter as I feel that is just annoyingly gross; at least to me. What I am, is upbeat and a take it all in stride type of gal. I live by the "it could always be worse" which helps me get through the rough patches and makes me grateful for the craziness in my life. I often get asked "how I do it all" and honestly I'm not entirely sure. I kick in to beast mode and just do what needs to be done without a second thought. I also have a great support team that is there for me if I need them. I could share personal accomplishments but really, they are shared accomplishments; be it shared with my hubby, kids, family or community. So, I'll end here...enjoy your Easter!! I'm about to go enjoy some great family time at the Cincinnati Zoo!

Saturday, April 4, 2015

Day 4 #HAWMC: Creatures of Habit

We are all creatures of habit both good and bad. This year I'm running the Flying Pig in Cincinnati, Ohio. It is a full and half marathon on Sunday, May 3rd. They also have 5K, 10K, kids run and dog runs the day before. It is the BEST event I've ever participated in over the years. This year I've committed to run the half marathon. I've been training since January 3rd when it was -13 degrees! I have run the half a few times and last year I ran the 10K with my hubby and I've always trained along the way. However, I've joined a running group and I wasn't sure if I was going to like it or not but now I can't imagine NOT joining...I really enjoy it. They have the routes all mapped out so I don't  have to even think about how many miles I'm going and what that translates into when running around my house. I meet new people; which I love! It's just a great group of people! So every Tuesday night and Saturday morning (at the crack of dawn...mind you) I drive about 35 minutes to the running store and go pound pavement.

I didn't always like fact I would cuss while running...I hated it!! But then my eldest daughter started running cross country when she was in middle school and I really didn't want her running her off days by herself. So I ran with her and my cussing had to stop!! Cross country was short lived (thankfully) so I stopped running. Over the years I dabbled with the treadmills but it still wasn't my favorite thing to do. The year my hubby turned 40 was his bucket list year. Being the competitive person that I am I decided to join his bucket list adventures. That's where running came back into my life and I found it actually enjoyable. It became my stress reliever. Oh, yes. The bucket list...let's just say while we both competed in the Warrior Dash and had a blast I ran my first half marathon solo...and I never let him forget it!! :)

Running has become my habit. Sure it's great for me and healthy but I do it more for my mental health. Dealing with the daily stresses of my kids chronic illnesses, insurance, medical bills, Doctor appointments, working, living get the picture...I need an outlet to get this built up stuff out. Pounding pavement works for me. What's your habit?

Thursday, April 2, 2015

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 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 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

Day 2 #HAWMC: Key to Happiness

Today I am to share with you what I think the Key to Happiness is...I think we all have the answer to that one and yet it's different for everyone. For me, my key to happiness is my family. They are the reason I get up in the morning, why I go to bed tired, why I stay up late, why I make their breakfast/lunch/dinner, why I go to the grocery, why I love fiercely, why I advocate, why I cry and why I laugh. You get the idea...they are my everything. When I think back about my most favorite and happiest memories they all involve my family. They are my biggest supporters (even when I ask them to do crazy stuff!!).

My Key to Happiness...My Family!

So I encourage you to find your Key to Happiness...maybe it's a spa day, coffee with friends, a night out, exercise, writing in a journal...whatever it is...GO find it!!