Saturday, April 13, 2013
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.
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.
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| 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.
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
Day 10 #HAWMC: Wordless Wednesday
Post your favorite picture of yourself... since this blog is for Jackson I'll post him!
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| Jackson's 5th Birthday |
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!
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.
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:
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:
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