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 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