Gwenyth's Gifts (that you can give)
In memory of our little Gwenyth
“He who desires to see the Living God face to face should seek him not in the empty firmament of his mind but in human Love.” - Dostoevsky
Things you can do in honor of Gwen's little lifetime:
1. Donate your Blood (and bone marrow)
Donate blood at least once this year. And, go the extra mile and join the bone marrow registry this year.
Gwen's surgery would not have been possible without a blood transfusion. Plain and simple. Give blood for Gwenyth’s CHD friends and all those in need.
Gwen had a problem with her own blood. Thankfully it was determined to be auto-immune, the problem being outside the bone. Someone I met here in Harrisonburg (because of Gwen) recently learned their fourth child was born with a congenital bone marrow disorder (SCID) to which his brother lost his life (at the time it was undiagnosed).
So to honor Gwen, her friend in heaven and his little brother, please consider getting on the bone marrow list. You never know if it will be a child, or someone that is the world to a child that you can help.
Find a Blood Drive
Join the Bone Marrow Registry
2. Support your local Children’s Hospital
Gwen was first seen for her diagnosis at the UVA Children's Hospital. She was born at the Children's Hospital of Philadelphia and lived there for the first weeks of her life. She never made it back to UVA Children’s, but their helicopter team tried to save her.
Her life began and ended in the care of pediatric hospital doctors. Between now and May the goal here is to donate to a children's hospital in some manner as one of Gwenyth's Gifts; donate money, children's books, blankets and hats (maybe hand-made if your crafty) stuffed toy (name it Gwen), other toys, even your time.
My Charity of Choice: Child’s Play
“a game industry charity dedicated to improving the lives of children with toys and games in our network of over 60 hospitals worldwide”
Donate: Child's Play Donation Page
This organization collects year-round and I love it - gamers like Gwenyth’s daddy run the charity. I cannot say I know them first-hand, but I’m going with them because Gwen’s daddy is a gamer, it just fits too well. I can’t tell you how often I think about kids in hospitals deserving IPads, computers and game systems... So to find this group, who collects ALL toys including video gaming things, I’m excited.
More about it: *Click here*
What a pediatrician at Maimonides Medical Center in Brooklyn said;
“I see firsthand what charities like yours do for children. At my hospital alone, the donation of a 3 Nintendo Wii systems from a local organization completely changed the hospital stays for our patients. While the younger children already had plenty of donated Arts & Crafts supplies and Dora/Disney DVDs, people tend to forget that pediatrics goes until the age of 18 or even 21 in some cities.
I’m sure that you can imagine that our 6’4" 15 year-olds undergoing weeks...regimens don’t exactly have an affinity for finger painting, High School Musical or The Wiggles. The Wii systems (including the new favorite of the floor, Rock Band) allows our older patients to enjoy their time at the hospital, forget the often (physically and emotionally) painful conditions/treatment and spend time with their brothers, sisters and visiting friends like they did at home.” Read in full
Another charity of choice: Children’s Hospital of Philadelphia’s Toy Donation web page
3. Support those who supported us; support others in our place:
Mended Little Hearts of the Shenandoah Valley (supports all CHD families)
Ronald McDonald House (gives a place to stay while your child is in the hospital)
Sister's by Heart (supports Newly Diagnosed Hypoplastic left heart heart babies)
These organizations have tremendous reach and impact - that I can vouch for - you can be assured every single dime or other gift you contribute is making a difference to someone who stood in similar shoes as we did. It will make Gwen's life count, each blessing you can give. Read more below:
Mended Little Hearts of The Shenandoah Valley
I remember Thanksgiving 2009 squirreling myself away with my laptop researching to the end of the Internet about CHD. We were supposed to go visit family and share the news about our second child being a boy or a girl... Who is that silly person that thought the 20 week ultrasound was about something so trivial. Was that really me?
In my “quest” for information I found Mended Little Hearts and the rest, is history. No, actually it’s a long story - of “heart families” whose stories helped me know Hope but not without being honest about enormous difficulty and challenges ahead. In many ways, I know how easy we had it, because I know so many “heart family” stories. And yet, they were there, for me - they took the time to be there and offer any advice, guidance, help they could.
MLH delivers Bravery Bags to CHD kids in the hospital. I carried my Mended Little Heart tote-bag and mug they gave me around CHOP like a kid does their blanket and pacifier. I really did.
Through MLH I met so many people - they linked me up with another Truncus mom who lives here near H’burg. I would have never met her. I don’t know what I would have done not knowing her through this...(thank you Becca). MLH linked me up with Kathy, my fellow CHOP mama and her amazing little boy Jacob. Through her I met others headed to CHOP. MLH linked me up with mom who lost her CHD baby this summer and needed to know someone else in the world who also had experienced that. There is strength in numbers and each of them are still there for me now.
Mended Little Hearts of the Shenandaoh Valley (originally MLH of Winchester when I first joined) is an awesome, active and effective force in the CHD world, I can attest to that.
Thank you to each of you who donated to MLH in Gwen’s memory in 2010! (Here is MLH National Website just FYI)
Ronald McDonald House
How you can help
We had hotel-like accommodations, were provided with a meal every evening (cooked by volunteers from outside groups), Lil had a great place to play and sometimes even volunteers to babysit her while we ate at the tables near by. There were “RMH Family” rooms inside CHOP with snacks, a TV, comfy chairs.
I saw so many families who were really far from home, often for a long, long time - I don’t know what they would have done if there wasn’t something like this. It’s a hard memory for me, I tear up recalling my days there - but I know I’m glad RMH was there for us.
I know RMH is a viable force in “what you can do.” Check this out - you can see lots of footage of our where we lived around this time last year, http://www.youtube.com/watch?v=xjUCDXWzgGw
Of note from this little video: 90% of their funding comes from donations. McDonalds, the restaurant chain, only provides 10% of the funding. That’s super impressive because from all that I witnessed, I totally thought it was the reverse.
Every penny counts - please, be a part of the 90% and help us pay it forward - it’s more than just the two of us can do, to can pay forward. This is for Gwen and Lil, hospital kids and their siblings (don’t forget, siblings do not have an easy time when their sibling is in the hospital...and RMH is one way to help make it a little less awful for them).
And thank you - to those who donated and paid for our time there (my brain is so fuzzy - I have a recollection that someone paid for all our nights there, anonymously - so thank you, as I recall that now....thank you). Thank you to all who donated to RMH in Gwen’s memory in 2010.
Also, consider giving your time...RMHs can always use volunteers.
Sister's by Heart - This group sends special care bags for the mothers of newly diagnosed babies with a specific type of CHD, Hypoplastic Left Heart (HLHS). They are mothers like me, who find out at the 20 week ultrasound about their babies serious heart defect. It’s an isolating place - in an instant you are part of a world that you didn’t know existed and you don’t know a soul who lives there.
Sister’s By Heart has sent hundreds of care packages since starting up a little over one year ago. You wouldn’t believe how many people stand where we stood.
SBS is run by a small group of women. Some of these ladies were at CHOP at or around the same time we were. I’m honored (completely) to be involved with them and to see their reach and what they have done in the short time since they started (at the moment I can’t say I’ve been active with them yet...there has been so much action on their part that it’s hard to catch up. My plans are to be involved in a very specific way that honors my little CHD Warrior Gwen...but that's all I'll say for now.). At the moment this is the absolute least I can do - share them with you and ask that you support their efforts as a blessing to Gwen’s memory. (update: I am no longer involved with SBH and my hope is to carry on their blessings to all of Gwen's friends by my work with Mended Little Hearts and be able to send care bags to newly diagnosed families with other severe, complex congenital heart defects.)
Sisters By Heart: http://heartsisters.blogspot.com/p/care-packages.html
4. Donate in some small way to the Children's Heart Foundation, The Adult Congenital Heart Foundation, or CHOP.
These are, as far as I’m aware some of the best CHD research organizations.
Children's Heart Foundation
The Adult Congenital Heart Foundation
Children’s Hospital of Philadelphia Foundation
5. Child-Loss Support - Support those who Grieve this kind of terrible loss by donating to your local child-loss support group.
Please consider taking care of those in your own local, who stand in this same place as we do... there is nothing quite like the care of strangers, even if they never know who you are, that helps you not loose all faith in the world.
When you loose a child - well, you are dangling on a thin strand... And you wouldn't believe, you simply wouldn't believe how many people that are here, in “child-loss land”... and it is the most random group, all income, race, age, personality-type - you name it. Much like the world of CHD....but back on point. People find themselves here via so many different paths - however in the end gone is gone, and pain is pain. We share a common nightmare - and for each new person - my heart sinks. It doesn’t matter how they ended up here - it is God-awful and I ache to know of anyone who lost a child.
On of my favorite books (thank you to Marty - I appreciate you giving me this book so much) is Lament of a Son by Nichols Wolterstorff. The Author writes “The son of a friend died a few weeks before [my son]. The friend’s son committed suicide. The pain of his life was so intense that he took the life that gave the pain. I thought for a time that such a death must be easier to bear than the death of one with zest for life. He wanted to die. When I talked to the father, I saw I was wrong.”
How I wish I couldn’t attest to that. The longing for events to have worked out differently - the small moments where your are sure differences could have been made, but can't be changed now. The missing for the child gone... it is never bearable, under any circumstance.
Here in H’Burg - my little group of people who astound me with their care and provisions for people who must live without their children, is the Sadie Rose Foundation
I’m hoping everyone reading with intent to help me pay-all-this-forward can find a local child-loss group to contribute to in some fashion.
6. Purchase and wear the Mia Heart Charm and support CHD awareness and funding.
Mia Grace lost her battle to CHD a couple months after Gwen. Like Gwen, she recovered so well, so fast...she left left this world before her mom could hand her to the doctors, en route, in the hallway, in her mom’s arms.
Her mom was one one of the mom’s I met online, who also would have her baby at CHOP. I remember the excitement of seeing her babies - I remember the day her twins were born, Mia (HLHS) and Madden (Heart Healthy). I remember holding Gwen, April 29th - telling Myers about their arrival.
To tell it all, I’m going to post this link. I couldn’t write it better anyway, it’s written by my "Heart Sister," Stacy, it is posted on Mia’s mommy, Jen's page. You can see two beautiful “heart babies” here, Mia and Stacy’s little girl, Zoe:
An Arranged Friendship
7. Walk in a Heart "Heart Walk," or March of Dimes walk, or Congenital Heart Walk.
More on 2012 walks soon... (Update...time flies and clearly, I'm not great at keeping up with blog work...it's April 16, 2016 and I'm gonna say I don't think this will ever have links...)
8. Help out my friends and their work - and be amazed at what people whos lives were turned up-side-down can do! Please consider supporting one or all in some way;
Please consider donating to Wyatt's Wishes. All funds donated will go directly toward helping another family in need. Funds will be used to purchase the following: yarn for angel blankets, stuffed animals, boxes, materials for cards, and stamps. Each angel care package will be photographed and uploaded to this site so all can see. To donate, simply follow the link above and click on the "Wyattt's Wishes" image and you will be directed to a secure Paypal site.
Sawyer’s Heart (and Angels of Hope)
Contribute something to their wish-list and help care for those who leave the hospital without their baby. Sawyer's Heart Project provides immediate support and comfort to bereaved parents who have experienced a pregnancy loss, stillbirth or the loss of an infant through the distribution of hospital memory boxes. .Sawyer's Heart Blog
9. Shop and Give;
Children’s Hospital of Philadelphia
Shop & Donate with CafeGive
Cafegive.com brings together top merchants with nonprofit organizations and enables ‘shopping for a cause’. By shopping on CafeGive, where you will find over 180 top brands and high quality online stores, you can earn for the CHF with every purchase. Just go to www.cafegive.com, set the cause to Children's Heart Foundation, then select the store you will shop from. You are purchasing from that online store with the same selection and prices.
Proflowers (10% of proceeds go to Children’s Heart Foundation)
Red Envelope (10% of proceeds go to Children’s Heart Foundation)
"Wyatt's Wishes" Etsy Shop
Here you will find the cutest little hats and other items - all hand-made - a baby gift that will be treasured and support a wonderful cause! Everything you see is handmade by Wyatt's Mommie. All proceeds will be donated to Congenital Heart Defect research and Now I Lay Me Down to Sleep (NILMDTS).
"Wyatt's Wishes was created in memory of my son, Wyatt James, who we lost at 29 weeks gestation due to Hypoplastic Left Heart Syndrome (HLHS) and Hydrops Fetalis"
10. Other Organizations that your donation blessed Gwen's memory:
(you may be asked to give a dollar at the check out counter or get something in the mail asking for a contribution. Give something. Anything. And call it “Gwenyth’s Gifts” in the memo ;) );
Children’s Miracle Network
The March of Dimes