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 bleed...now 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!! 

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 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!

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 23: #HAWMC: Technology

Today I am to write about how my life would change if there were no social media.

NO social media.

How did we survive BEFORE social media!?

Wow...I imagine a ton of free time that I would have.

However...

I wouldn't be able to reach to a friend across the US to ask questions about Hemophilia.

I wouldn't be able to talk to other parents who are having the same issues I am with my son.

I wouldn't be able to connect to a community that is united by bleeding disorders.

Who gets it.

Who understands.

Who knows.

Who has walked and is walking in my shoes.

It would be lonely.

Don't get me wrong. I have wonderful people here in my hometown that I connect with. Sometimes I can't always meet up or attend events so it's nice to be able to catch up with them on Facebook. It's comforting to know that if I'm on the way to the ER with my son and a bleed I can communicate with the entire community if I need to.

The bleeding community is our family. We aren't related by blood...well, yeah, we kinda are in a way, and I can't imagine not being able to connect with our family for support.

Thank goodness for social media.

Thank goodness for our bleeding community family.

Day 22: #HAWMC: Day to Day

Write about something ordinary, something simple, perhaps overlooked, that's inspiring to you that fuels your activism.

I've talked about this before (I think...it's late, I'm tired) the volunteers that have no direct connection to Hemophilia yet make it their passion; just like mine. I stand in awe of these people who have no idea, or some idea, of what a Hemophiliac and their caregivers go through and stand right along side of me and fight the good fight.

I find that super inspiring.

I remember talking to a friend some 8 years ago (before Hemophilia or Type 1 diabetes entered our world) and wanting to find an area to volunteer for and help out. We both had kids so we decided we would help our local Children's Hospital. We felt overwhelmed...where to start, what to do, to whom to help. We just knew we wanted to help kids. Then one week later  I found my passion when my middle daughter was diagnosed with diabetes. Then three years later I found another passion, and another floor of the hospital, hemophilia and then four years later with diabetes yet again.

Through my passions I have met some great people. Some who have connections to the bleeding community and some who don't have any. I sit there wondering why Hemophilia. Out of all the diseases and disorders out there...you chose Hemophilia. I am grateful and inspired by you, the unsung hero, the person who helps to help because they can. The person who doesn't have to attend meetings, help with fundraising projects, meet with local and state officials but chooses to do so, willingly!!

So, THANK YOU!! For all your hard work and dedication.

I am in awe, humbled and inspired by you!

Day 20: #HAWMC: Burnout

Write a post about burnout. What does it feel like? What are your triggers?

I can't speak specifically to burnout with Hemophilia as we have been blessed with smooth sails. We may have had a few rough patches with gaining good vein access and Jackson has had to endure more than one IV stick at times. For the most part it has been Tuesday/Friday infusions or more if a bleed occurs. We infuse and move on living life.

I can speak to being a caregiver to three chronically ill kids and burnout. Here's the thing...there is no time for burnout. I get cranky, teary, sad but maybe get a power nap in or a belly laugh from something one of the kids has done or a big hug for no reason and the burnout melts away. I can't run or hide. Chronic illness is there...it's chronic. No breaks. No vacations. 24/7/365. Just ALWAYS there. Death is NOT an option and that's what would happen if I didn't take care of my kids.

So on those days where it seems as if I can't handle one more thing...I try to change my attitude. I try to find ONE good thing...maybe the sun is shining or the flowers are blooming or just that one thing that can refocus me from that fleeting thought of a black hole. I push forward and take it hour by hour or in some cases minute by minute.

After all...there is always a silver lining (I know, I know...kinda cheesy) it may be hidden but if you tilt your head a certain way or squint your eyes just right...it's there.

Day 19: #HAWMC Vintage

Today we are to post a vintage picture with a caption. (Although I don't think 5 years qualifies as vintage)

This was Jackson at only a few hours old. Within 24 hours of this picture we found out "unofficially" he was a Hemophiliac. Scared, pissed and unsure of what was ahead of us. But now that we are 5 years in...we got this! 

My haiku for Hemophilia

Needles, factor, flush

Prepping for an infusion

Hemophilia

Day 12 #HAWMC: Hindsight

"What have you learned about being a caregiver that has surprised you most?"

That we (my hubby and I) can do it.

We can  take care of all three of our kids and their chronic illness.

I always joke with my hubby that we need an honorary nursing degree...between Type 1 diabetes and hemophilia we have it covered.

If you would've told me 10 years ago that I would be sticking my kids with needles, administering IV infusions, fighting with health insurance, meeting with lawmakers, advocating at schools, writing blogs, meeting amazing people in our chronic illness community, living and breathing diabetes and hemophilia I would've told you, YOU'RE CRAZY!!

But here I am, here we are, raising our kids despite their chronic illness and thriving...LIVING.

Jackson giving Daddy an "IV" of factor. 

Day 10 #HAWMC: Wordless Wednesday

Post your favorite picture of yourself... since this blog is for Jackson I'll post him!

Jackson's 5th Birthday

Day 9 #HAWMC: Caregiving

As a caregiver to three kids with chronic illnesses it can be a little overwhelming. Today's post asks as a parent to children with health conditions, what do you hope your doing right? uh...EVERYTHING!!

I, unfortunately, am NOT perfect so I know I'm screwing something up...that's what therapy is for!! No, but really...I try my hardest. My hubby tries his hardest. And we just DO. We do what we need to do to keep all three kids healthy and most importantly...ALIVE.

I do hope that I am teaching them the skills they need to take care of themselves. Not on their own...yet. But building confidence in themselves. So that when they do go off on their own or I'm not right there they have the confidence and skills needed to take care of a medical situation if needed.

I hope I am giving them a sense of how important it is to advocate for themselves in any situation. To talk about their medical condition to the teachers at school. The school nurse. To lawmakers. They have a voice and they CAN make a difference. If nothing else they have been to enough meetings with all kinds of people with me and have heard what I talk about, how passionate I am and what I want for each of them.

I hope that they learn compassion. Hemophilia and Diabetes are invisible chronic illnesses. In dealing with their illnesses and knowing that just because you can't see it doesn't mean you aren't hurting helps them compassion towards others who may be suffering silently.

I hope that I've empowered them to live. Not to be afraid. Not to be limited. But to take what they have and say, yep, I've got that (hemophilia/diabetes) but it doesn't have me. I want them to enjoy life not wish they could have done something.

So to answer "what do you hope your doing right?"....EVERYTHING!