Tuesday, September 17, 2013

Destination Me: Day 3

If your late to the Destination Me campaign  way of life...I'll fill you in. My friend started Destination Me as a way to gain some "Me" time you can read about it here and my commitment blog entry here. I wrote about running and missing that ability to find Me time since school was out for my kids. But now that school is back in session it was time for Me.

So I ran.

That was a week and a half ago. I started feeling bad about not making Me time a priority. But then I thought about some of the things I did do and realized I found Me time with others. I know...that sounds weird but essentially it's Me finding time to do the things Me wants to do. And running is just ONE of those things.

I met a friend last Monday...we had a Jeep adventure, had coffee and talked for hours. So long I almost missed a conference call meeting. No, I wasn't by myself but it was still Me time. I ended up taking the conference call at the coffee shop and in doing so I ran into another friend I hadn't seen in a few years! It was wonderful to catch up with both my friends and enjoy being able to have an adult conversation. Without interruption. It was Me time.

Today, I happened to be able to run. And clean out my ever increasing inbox. Which was more like work but I was free to do it and it felt good!

And today...this is what my Me time looked like about mile 3...U2's Bullet the Blue Sky playing in the ear buds and this magnificent view.

Have you found your Me time?

It's never too late to join in!

Thursday, September 5, 2013

I found some ME time...day 1!

I found IT!! I found 1 hour to myself to go out and run...well, truth be told, I walked more than I ran today. BUT I was out and about! It's been months since I've been out and my body was yelling at me and my brain was like, WHOA! But one has to start somewhere.

This pic was taken just as I went out for my ME time. By the end, I didn't nearly look as cute but I still had a smile on my face! Feels good!

What have YOU decided to do to find your ME time?? Share in the comments below!! I'd love to know and cheer you on!

Wednesday, September 4, 2013

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! 

Tuesday, April 30, 2013

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:


Monday, April 29, 2013

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! 

Sunday, April 28, 2013

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.

Saturday, April 27, 2013

Day 27: #HAWMC: Titles

If I was to write a book about our life, our community, our health condition, what would it be called? Come up with 5 working titles.

1. The Loving Family Chaos (describes our life perfectly!)

2. Bleeds...there's never a good time for a bleed (ain't nobody got time for that!)

3. Infusing with Love and Factor (need some love and medicine!)

4.  Hemophilia: Living and Thriving (because it's true!)

5. Jackson's Hemo-maniac Krew (just because that's how we roll and my son has an obsession with pirates!)

Friday, April 26, 2013

Day 26: Pain Free Day #HAWMC

Today's post asks what day would you have used for a pain free pass.

I don't think I could pick one particular day...I would say everyday we have to infuse our son with factor. Now, it's not such a big deal as he has gotten used to the pain of the butterfly needle and/or he has enough scar tissue built up that he doesn't feel it when we stick him. But when he was little I hated it. We went down to Children's once a week (at first) and I would have to request the IV team come to access his veins. He would scream. The older he got he would fight. He is a strong kid. I would basically have to do some WWF maneuver to subdue him in order for the IV team to stick him. Once he was stuck he was good. It was just the anxiety of the stick. He knew it was coming and couldn't do anything about it. But when your holding down your then infant son you feel like the worst parent in the world. Despite knowing that he needs his medicine and that we have to hurt him to make him better. It was a hard concept to grasp. It's gotten way better now but at first it was a rough go. 

So to answer the question...I would take away the pain of every infusion for the past 5 years. 

Captain Jackson's Hemophilia Adventure

Wednesday, April 24, 2013

Day 25: #HAWMC: Learning

Today I would like to share with you how to find your voice...to advocate.

I've always had a voice...it was quiet at first but then blossomed into the boisterous sound that it is.

If I had to pin point it I would say it started when my middle daughter was diagnosed with Type 1 diabetes. I was already pretty vocal in meeting with local law makers and telling them our story. So it seemed natural to do the same when our son was diagnosed with hemophilia.

I am one of those types of people that throw myself into helping. Especially when it comes to my kids. I want to help. I want to help others. I want to make a difference. For me, it's better than sitting around doing nothing and singing "woe is me". It makes me active. It makes me research. It makes me invested in how law makers are seeing our community and what I can do to change that. Helping is how I deal with things. Helping is how I cope.

For me, it started small. I attended an event. Then I offered my help with anything. Which led to helping on committees to plan events. Which led to being a Board Member at our local chapter. Then I started reaching out locally then statewide to members of Congress talking about hemophilia. Which then led to reaching out nationally...blogging...talking...interacting...advocating.

So how can I share with you the ancient Chinese secret (I'm dating myself with that reference!!) of finding your voice? Simple...open your mouth and say something. Anything. Educate your friends about your bleeding disorder. The more you talk about it the more people will listen and the more people will learn. Maybe speaking locally or nationally isn't your thing...that's fine but start somewhere. You don't have to be the loudest...but we need all decibels to be heard.

Wordless Wednesday...Day 24 #HAWMC

Today we had to create a Pinterest Board and pin 3 things.

You can check out my  Hemophilia Board HERE.


Tuesday, April 23, 2013

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.


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.

Monday, April 22, 2013

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!

Sunday, April 21, 2013

Day 21: #HAWMC: Adversity

"The flower that blooms in adversity is the rarest and most beautiful of all."-Mulan 

True or false? When do you bloom best?

Today, I'm asked the above question. As most of you know I blog for Blue Heel Society for diabetes and my personal blog for Captain Jackson's Hemophilia Adventure. I have been double blogging all month long for the WEGO challenge. Posting separately for both. However, I will be double posting. I hate to do it. It's not a cop out but really it applies to both blogs.

To answer the question; yes, I bloom best during times of difficulties. Maybe too well...that's why I've got two with Type 1 diabetes and one with Hemophilia. I see it almost like a challenge...like a "HEY you!! I'm gonna throw this curve ball at'cha and see what you do with it. Ready, set, GO!" It started in the hospital the day I delivered Jackson. My parents brought the girls to meet their new brother. It was there that the eldest needed her newly placed braces cranked for expansion, the middle one needed an insulin pump site change AND Jackson needed a diaper change. Seemingly all at the same time. It was then the forces were set in motion and I said, "BRING IT!" I must have said it too loud...someone was listening.

My brain is hard wired for stress and difficulties. It's like putting together a new puzzle with no picture. My brain starts assessing the situation or the challenges that are laid in front of me. I organize a plan and execute. It's taken care of within minutes...at least the plan is. I think I drive my hubby crazy as I start barking orders to extinguish the difficulty flame and it's put out before he has time to process there was even a fire. It isn't a dog on him...it's just how I function. I accept the challenge(s) and then make it wish it never messed with me.

Saturday, April 20, 2013

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.

Friday, April 19, 2013

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! 

Thursday, April 18, 2013

Day 18: #HAWMC: I take it back!!

Sometimes when your tired and don't feel like dealing with something the wrong words come out.

Now, I must write this disclaimer as it's the posts fault. I have truly gotten over this issue. I just had to bring something out so I would have something to blog about today. So it may sound like I'm holding a grudge but truly I was over it as soon as it was said. 

In our family unit I am grateful to be able to stay at home with my kids during the day and work about 3 evenings throughout the week. It gives me freedom to be able to take the kids to their Dr appointments, or if they are sick or if the nurse calls and there is an issue at school. It gives me freedom to make some money, feel as if I am contributing to the family income and gives me some sanity. Most of all I do it for sanity reasons but I digress... My hubby works during the day 40+ hours a week and a lot of times he comes home and I high five him out the door to go to my job. Things had been crazy one day while I was home with Jackson (he had to be around 2 at the time...he's 5 now) and we had been inside all day doing whatever. It was springtime and the day had turned out to be pretty nice. I felt bad about not taking him out but thought my hubby could take him outside that evening. Or so I thought...

Seriously, I am sooo over this...It's gonna sound snarky and I have not held a grudge...seriously...I'm cool with it all!

Well, hubby comes home and he's tired and just wants to take a nap (don't we all?!!?). I suggested he could take Jackson out to let him play for a little while since it was so nice. (Just a little background here...we have a side yard that of course has a grassy area but has a concrete patio as well.) His comment to me was something to the effect of that not being a good idea. I kinda knew where this was headed. I didn't like it and I'm getting tired too so I'm getting a little aggravated. So I played dumb...

Me: "Why would going outside not be a good idea?"
Him: "Well, you know, he's a hemophiliac...he might fall...he might get a bleed."

To which I replied, that is the STUPIDEST thing you've ever said!! What!?!? Should we bubble wrap him!! Keep him inside!?!? I guess we shouldn't let him walk...EVER!! Pfft...get him outside and let him play.

My poor husband knew as his words came out of his mouth he had messed up big time. We have the motto: Treat the Hemo not the boy! In other words... let the kid LIVE. He ended up apologizing not that long after he spoke those vial words and chalked it up to being over tired. I immediately forgave him but made him promise to never say anything that stupid again.

And he hasn't!

Tuesday, April 16, 2013

Day 16: #HAWMC Misinformation

Today I will share four TRUTHS about hemophilia...or are they?

Can you pick out the LIE?

1. Hemophiliacs can spontaneously bleed.

2. Hemophiliacs can have joint, muscle and external bleeds.

3. Hemophiliacs CAN play sports.

4. Hemophiliacs can bleed to death from a paper cut.

Did you pick out the LIE?

It's number 4! While paper cuts hurt and can bleed like crazy for even a non bleeder surface cuts for a hemophiliac will heal using typical first aid treatment. A hemophiliac bleeds the same amount as a non bleeder HOWEVER they bleed longer.

Monday, April 15, 2013

Day 15: #HAWMC: Sharing

I LOVE finding and reaching out to the Executive Hemo guys. All of the Hemo's in my family have passed so I don't have anyone to bounce ideas with or look to see how they have overcome adversity and challenges with hemophilia. I have found many through Facebook and I soak in all their posts, stories and comments. I find them inspiring and role models for Jackson to look up to he is older...I mean he's 5...he doesn't quite get "it". I came across this wonderful Hemo man, Patrick James Lynch. He has launched a "What's Your imPossible" initiative to get Hemo's moving and living life in honor of all those that have lost the battle.  He announced his intent to run in the New York City Marathon. You can read and follow his blog here.

The blog challenge today is to share a blog and write a comment in response to the post you feature.

Dear Patrick,

As a Mom of a 5 year old severe, factor 8 deficient Hemophiliac, I would like to thank you!! I LIVE by the phrase "you can do anything" as you see I also have two daughters with Type 1 diabetes. We know chronic illness. I have been adamant that my kids NEVER let their illness stop them. For the most part it hasn't. Sure a bleed for my son or low/high blood sugars for my girls may stop them in their tracks. We may need to re-adjust or re-schedule an event...but they LIVE. They know they have conditions that they may need to take a few more precautions for...but they LIVE.

I will share with my kids what a wonderful challenge you are embarking upon (and yes, it will be a challenge...I'm a half marathoner...not feeling the need to run a full!!) That defying your arthritic ankles, your bleeds, your training, HEMOPHILIA...you WILL run and you WILL finish a marathon!! We will be cheering you on from Ohio!

Best of luck for easy training to follow and minimal bleeding.

Your blood family,

the Loving's

Jen, Joe, Jackson, Nora and Evelyn

Sunday, April 14, 2013

Day 14: Spread the Love #HAWMC

Today's challenge asks me to thank a fellow advocate for what they have done in the Hemophilia community.

I would like to thank the unsung heroes.

The ones who advocate silently but are heard.

The ones that go to school and teach the staff what a bleeding disorder is and how to react.

The ones that work with the Coaches so their kids can play a sport WITH a bleeding disorder.

The ones that meet with local lawmakers and educate them about the bleeding disorder community.

The ones that go to Capital Hill and advocate during Washington days. Learning about the issues and meeting with national lawmakers to have our voices heard.

I thank YOU for all you have done to advocate for the bleeding community. The ones I don't personally know but are connected to in the Bleeding Disorder Community.

Friday, April 12, 2013

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. 

Thursday, April 11, 2013

Day 11 #HAWMC: Favorites

What is my favorite social network? Facebook, Twitter, Pinterest?

I LOVE Facebook...ask anyone who knows me, even if they don't know me that well, that I post and share a LOT on Facebook. When I first joined it was at the urging of my then high school aged daughter. She had an account and told me to join. I did. It was more for keeping tabs on her (not that I needed too) and reconnecting with old friends. At some point I started using  Facebook as an outlet to inform, educate and advocate. It became my voice in social media. It connected me to the bleeding community. It offers me hope when my son has a bleed and I need someone to understand what I'm going through...who gets it.

I have a Twitter account too...I try, I do. I post on there as well but don't check it very often. There is just something about being limited to 120 characters. I can't be limited.

I have a Pinetrest as well but there are not enough hours in my day for Pinterest. I thought I would use it for displaying posts about the kids chronic illnesses but then found a plethora of ALL kinds of fun things. I've used it for birthday party, events, baby showers and recipes. I've made some pretty awesome dinners thanks to Pinterest. But I try and stay away...it would suck me in forever and nothing would get done around here!

If you want to add me as a friend you can find me as Jen Hamilton Loving. At a meeting the other night someone said, "if your not following Jen on Facebook...your missing out!" So I'll stick with my Facebook and keep informing, educating and advocating for Hemophilia.

Wednesday, April 10, 2013

Tuesday, April 9, 2013

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!

Monday, April 8, 2013

Day 8 #HAWMC Hemophilia and Cobra Snakes

Today's challenge is: "if your health condition was an animal what would it be?"

I asked Jackson, since it's his disease and he came up with a rant of about every animal you could find at the zoo. I then asked him how the animals are like hemophilia...and he just moved on...just like a 5 year old does!

So I was thinking about how, for us, hemophilia is just in the background. Unless it's an infusion day which is Tuesday and Friday or ... he has a bleed. And the bleed can happen out of no where...that's probably the most frustrating part of hemophilia. And that's why I pick a cobra. The cobra lies silently and waits, as does hemophilia, and strikes at the most in-opportune time. Perhaps while on vacation,  at a birthday party, on your way out the door, at a clinic visit (yes, this has happened to us!), just about any time you don't want to deal with a bleed. And sometimes a bleed can be just as deadly as say a cobra bite. But you deal with the situation, you factor up and move on. However...you are always aware the cobra is there, it doesn't stop you from living but you know it can strike at any moment.

Sunday, April 7, 2013

Day 7 Ridiculous Cures for Hemophilia #HAWMC

The post today is to talk about some ridiculous cures for our health condition. I am relieved to say I could NOT find one ridiculous cure for hemophilia! I could make one up but really...don't want to go there.

The history of Hemophilia has been bleak...it was not necessarily a death sentence but your life expectancy was lower as was your quality of life. Then to add the Bad Blood Holocaust of the 80's that nearly wiped out our entire bleeding community...out of respect to everyone in our community I will happily take a pass on this post for ridiculous cures. While I realize it is a fun post to do I'm just not going there.

Instead...I will leave you with the following picture:

Saturday, April 6, 2013

Day 6 #HAWMC: Letters

Dear Hemophilia,

Just wanted to drop you a line and let you know I despise you. I hate how I have had to infuse my son, through IV, from the time he was three days, yes, DAYS, old. When most parents were taking their newborn babies home we had to take our son down to Children's Hospital for a diagnosis and three day stay while he was held for medicine dosage, CAT scan and observation.

You've made him endure several pokes from nurses who said they were good with IV access to bypassing them all together and having us request the IV team for his infusions. You made our son feel like a hospital was his second home. That everyone has to go to the hospital. When he sees the logo of Children's Hospital, no matter where we are, he says "there's my factor mommy!".

My son has had to grow up early...that "kid" is wise beyond his years. He knows his medication days. He knows when he has a bleed. He knows what happens when he has a bleed. Even so much to ask if he has to go to the hospital or if we can take care of it at home. He knows that he needs to take it easy if he has a bleed and believe me when I tell you this is NOT fun. He is an active boy who wants nothing more than to be well...active!

I hate that I have to worry about each whimper in the middle of the night...is he in pain? Is he hurt? Does he have a bleed? Or with each bump or fall if it requires a call to the Hematologist. Or each time he says, "this hurts" if it's the start of a bleed. I hate that I have to type bleed so many times in this blog!

You really make me angry because your treatments are expensive. I hate calling and fighting insurance to get the things needed to deal with you. We have FINALLY been able to take an extended vacation because we have learned to self infuse and didn't have to time our vacation based on nurse visits.

But then...

I want to thank you. Yes, I know...it's weird. But thank you. Because of Hemophilia my son understands and notices his body. He is in tune to how things feel and can tell us when things feel funny. You have made our family stronger in being there for each other. You have given us the opportunity to meet some wonderful people in the bleeding community. You  have helped us raise awareness. You have made us thankful for advancements in modern technology. You have made us appreciate life and to make it the best we can.

So try as hard as you can to be a pain (and you do)...but your messing with the wrong family.

Not so fondly yours,

the Loving's

Friday, April 5, 2013

Day 5 #HAWMC: Aspiration

"If I could do anything as a Health Activist..."

My biggest goal as a health activist is the well being of my kids no matter if it's for Hemophilia or diabetes. To ensure their health no matter where or what they are doing.

My next goal would be that I have empowered them to advocate for themselves because I won't be around to advocate for them forever.


I want to be a voice big enough that local government and national government listen to myself, my son and all people with bleeding disorders. To know that even with insurance our clotting medicine is STILL expensive. The medicine that Hemophiliacs use is THE second most expensive drug on the market...the first of which is cancer treatment drugs. For government to realize that even though our bleeding community is small we are still mighty. We matter. Our kids matter. Our loved ones matter.

I want to be a voice that helps Hemophiliacs in third world countries get the medicine they need to stop their bleeds. That no one should suffer or DIE because they don't have access to medication to help them live and thrive.

 I want to be a voice that lets my son's school know that even with a bleeding disorder he can do anything. That he shouldn't be treated differently. For his future Coaches to play him as they would a non-bleeder. To work with him, despite his Hemophilia, and develop him as they would each player on that team.

I want to be heard. I want my son to be heard. I want YOU to be heard.

Thursday, April 4, 2013

Day 4 #HAWMC: Care Page

Your child, or you, have been diagnosed with Hemophilia or another bleeding disorder, so where do you go on line to find help? I have found a few places that have helped our family through the past 5 years.

1. National Hemophilia Foundation

2. Hemophilia Federation of America

Both of these are great websites to learn about your child's, or your bleeding disorder, product safety, research updates, educational conferences, news and advocacy.

3. Find your local chapter. I feel this is key in finding local support and finding other members of the bleeding community.The bleeding disorders may be considered a rare disease but there are still others out there...you are not alone. As a caregiver it's great to meet other mom/dads that are going through the same things we are. It also helps my son be able to meet other kids around his age that have a bleeding disorder.

I feel the more you know and can educate yourself on the bleeding disorder the better equipped you'll be in advocating for your child in daycare, school, sports and life. Advocate can be a scary word. But it doesn't have to be. Advocate could mean going to Washington, DC and talking with lawmakers. Or it could mean finding your voice to advocate for your child at school in gym class or the classroom. You define what advocate means to you and your situation.

Hopefully I've given you a place to start and find a home in the bleeding community.

Wednesday, April 3, 2013

Day 3 #HAWMC

Wordless Wednesday...

Post a picture that symbolizes Hemophilia...

This symbolizes freedom, courage and hope for the Hemophiliacs of today.

Monday, April 1, 2013

Day 2 #HAWMC: Introducing Hemophilia

Today's blog challenge is: Introduce your condition to others. What are 5 things you want people to know about your condition.

"Well...Everyone, meet Hemophilia; Hemophilia, meet Everyone."

For those who have never met Hemophilia it is a bleeding disorder that is most usually found in males. It is genetic yet can occur through a spontaneous gene mutation. In a nut shell Hemophilia is a disorder in which your blood will not clot. There are different types of bleeders, if you will. There are mild, moderate and severe. There are Type A's and B's. There are Factor 7,8,9 and 10 deficient levels and then there are inhibitors. While back years ago the life expectancy was not good for Hemophiliacs my son, who is Severe A, Factor 8 deficient, has a normal life expectancy. He is treated twice weekly (sometimes more if there is a bleed) of a medicine through an IV infusion that helps his blood clot. Studies have discovered that treating proactively helps prevent bleeds or at least catches them sooner. Early treatment is helpful in less joint damage and better overall recovery.

5 things I would like you to know about Hemophilia:

1. My son will NOT bleed to death from a paper cut.

2. My son CAN do anything your kid can do...he may just need to infuse before or after an activity.

3. You DON'T need to bubble wrap a Hemophiliac.

4. Hemophiliacs DON'T just bleed out. They can have spontaneous joint or muscle bleeds. So even though you may not see blood...there can still be a bleed.

5. Yes, my child may be covered in head to toe bruises but we DON'T beat him...he is a bleeder...this means he will bruise more than your typical kid.

Thanks for dropping by and meeting my son's health condition...Hemophilia.

Why I Write...

Hello Everyone! We've just come off March as raising awareness for Hemophilia. I tried very hard to post, on my personal facebook page something almost everyday about Hemophilia. In doing so I tried to educate my friends and family about Hemophilia and its causes, problems and daily life. I've decided to participate in the WEGO Health Challenge this month. I will be writing, with the help of some daily prompts given by WEGO Health. I hope you enjoy my month long blogging!

Today's prompt is Why I Write:

That's easy...I write for my son, Jackson who has severe Hemophilia A, Factor 8 deficiency. He came into this world with a 50/50 shot of being a hemophiliac...and has taken to his "normal" like a champ. Be it a challenging champ at times but a champ all the same. I write for my family and friends to understand what our lives are like. I don't want sympathy or pity...I want to educate. I don't want my son excluded from things or treated differently. There is no need for all that! With a few precautions and a little planning he can do anything!

I found WEGO Health's Writers Challenge last year when I was blogging for the Blue Heel Society, a group of fab people who advocate for diabetes, as I have two daughters with Type 1 Diabetes. So I thought...why not do the same for Hemophilia? So here I am writing to you about Hemophilia...enjoy!

Sunday, February 24, 2013

Part 2...Our Story

Welcome back...I thought I would be back sooner but such is a life with a busy schedule.

To get you up to speed I left off at the initial diagnosis of Severe Hemo A, Factor 8 deficiency for our son, Jackson. We had asked our Hematologist what our son's life expectancy rate was. The look on his face was surprise...he said very calmly, "the same as if he wasn't a hemophiliac". That put us at ease but still we were so scared...of the unknown. We knew how to take care of a Type 1 diabetic but how do you take care of a hemophiliac? I envisioned padded walls and corners, no hyper dogs to knock him down and a life full of bubble wrapping my son. We explained our family history to the Doctor and how our hemo family members had all passed on. He then understood our life expectancy question.

Through the course of all this craziness the Hemo team discovered a raised bruise on Jackson's upper temple area. Most likely caused from the OB pulling him from the birth canal. He needed his first dose of factor at 3 days old. Jackson was admitted to the NICU at Cincinnati Children's for three days of factor. Our Hematologist rode with us down the elevator to the NICU floor. I don't even remember what we talked about. I do remember him apologizing for not being available the upcoming week as he was leaving on vacation and felt sorry he couldn't cancel it! (GREATEST Doctor you would ever meet!! I'll blog about him another day) We set Jackson up in his room. Had him attached to all kinds of monitors that kept beeping. All I wanted to do was take my new born baby home to be with his sisters and we were stuck in the hospital.

The next few days were full of visitors, a CT scans of his head, factor, meeting with Jackson's Hemo team...all of which is a blur. I stayed with Jackson while Joe went to be with our girls at night. He likes to Google things so he was searching one night and came across a Hemo Mom blog (he doesn't remember which one). He came to me the next day with a glimmer of hope and said he read on this Mom's blog about letting your Hemo kid be a kid. Don't bubble wrap them. There is factor to fix almost all the bleeds that may happen. But nothing to fix the potential emotional damage you may cause by not letting your kid be a kid or being super overprotective. It was from that point on I knew I had to help my son be all that he could be (with a little precaution if needed).

Jackson was finally released from the hospital factored up and doing well. The Hemo team had decided to start him on prophy dosing once a week. (Prophy dosing is giving him his medicine, called factor, once a week to help prevent any break through bleeding.) We had an action plan and took our baby home.

Looking back I'm glad I didn't know that Jackson was a hemophiliac. I would have looked up all the "bad" things that are Hemophilia related. I would have worried. It would have second guessed everything. Instead I stared Hemo in the face and said "Let's do this!" We would learn, we would adapt but MOST importantly...

we would LIVE!

So that's our story...the beginning anyway. Jackson is getting ready to turn 5 so I have to catch you up! I'll be back soon!

My boys! <3

Saturday, January 26, 2013

Our Story...(part 1)

Hi! I'd like to introduce myself. I'm Jen and I'm the mother of three. I have two daughters and one son, Jackson, for whom this blog is for. I wanted to share our story to other families that are dealing with hemophilia or any chronic illness, for that matter, so that you know you are not alone. The hemophilia community is a small one compared to others but we are mighty and strong and there for each other. So I'll try to make this simple and sweet and break Our Story into multiple blogs because:

1. I won't have the time to write it all

2. Who wants to read a looooonggg blog??

Our story begins in 2007 with an unexpected and VERY surprised pregnancy of our son, Jackson. And before you say anything...yes, I know how this happens. We thought we were done. We had two beautiful daughters and were happy with our family unit. We had grown together, loved together and faced a Type 1 Diabetes diagnosis in 2005 with our then 4 year old. We were good. But I guess God had other plans for us...and it came in a brand new bundle of joy...Jackson!

Hemophilia runs in my family. My maternal grandfather had it as did his brothers. He died in his 30's from complications during a surgery. My mom was 3 or 4 when he died. I had two cousins who were born with hemophilia. I remember as a kid knowing that hemophiliacs were bleeders but didn't know what that really meant.

My mom never got tested to see if she was a carrier. I never did either. I knew enough to alert my OB/GYN that hemophilia ran in my family. I had some crazy cycles during my time of the month and lots of break through bleeding on the weeks that weren't my scheduled cycle but nothing that could have possibly alerted my OB/GYN that I could be a carrier. It wasn't until we found out that we found out we were having a son that it really bothered my mom. Enough that when I was 8 months pregnant she said something that made me go into action. Maybe it was her tone, not so much her words that made me call the OB/GYN and ask to be tested as a carrier. I didn't know I should have specified Hemophilia A, Factor 8. They did a generic carrier test and rushed it to the Mayo Clinic. I received the results the day after I had Jackson...not enough info. But we knew. Fortunately my Doctor's decided to treat me as I was a carrier and that our son was a hemophiliac. No forceps's, no long pushing and no circumcision.

I was fine with the plan. Everything went well with the delivery on March 7, 2008! He was beautiful!! Born healthy, weighing 8 lbs. and full of piss and vinegar! The heel prick came and he bled. and bled. and bled. and we knew...Our town had a crazy out of season snow fall the day Jackson was born. It was a Friday and it snowed 12 inches!!! In March. On the Southwestern tip of Ohio. We don't get that kinda snow! We were snowed in. They released us on Monday with an immediate trip to Cincinnati Children's Hospital to the Hematology floor. It was late in the day; around 4pm. They did a blood drawl and I just kept praying that it wouldn't be hemophilia. The Dr came back and said he had it. Severe A, Factor 8. My husband looked at the Dr and asked what our son's life expectancy would be. We had no idea. We knew that my family members who did have it all had passed on. Hemophilia = Death to us.

Little did we know!! :)

part 2 to come later....