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! 

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.

Enjoy!

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 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.

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! 

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

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.

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 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.

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!

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.

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:

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

Day 3 #HAWMC

Wordless Wednesday...

Post a picture that symbolizes Hemophilia...

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

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.