by Today is #givingtuesday and I wanted to give a nod to a handful of organizations that have been incredibly supportive of us on this journey.
So many people have asked us what they can do to help since AJ was born… And the reality is it’s a really, really hard question to answer when all you truly want is for someone to turn back the clocks and give you a healthy baby in the delivery room and not have to go through the daily panic and fear. Sometime the best you can do outside of praying is to just be there, be a distraction, bring in some food, or haul us out for dinner for a change of scenery… Just knowing that you’re in our corner is what we need, even if we don’t talk about AJ and the current prognosis. Just knowing you’re there helps, and knowing that if we do come up with something that you can help with that you’ll be willing to do whatever you can… So many of you have stepped up, and I wish I had the time and energy and space on Facebook to call each of you out individually, but I have a problem with lengthy status updates as it is, and really, I think you know who you are! 🙂
Obviously, love, prayers are the biggest help we can get from most people. And those who have been able to physically step in to help take care of Aaron and Averie have been a major help as well. I don’t think I could ever say “Thank you” enough, especially to Janet and Lasairiona, who both left the comforts of their own home to stay in my messy space to look after Averie in my absence.
Beyond that, the biggest help of all has been financial support – we’ve had that from our friends, family, and even strangers, in a bigger way than we ever could have expected. The money that was donated via our go-fund me page or directly to us has helped take that giant burden off our plate from the outset. Sure, we still have more bills come in, and the funds won’t even come close to covering all of it, but having that support has enabled us to worry less about how we’re going to make ends meet and focus on AJ and what we need to do with him. I can’t imagine having to go through all of this and also worry about not having insurance coverage, or not being able to afford the medical bills as they come in, selling our homes, quitting our jobs etc as so many other people we met in the waiting rooms at CHOP were doing.
The more time I spend in the “heart mom” community, the more clear it becomes just how much these little kiddos impact the world around them. There are dozens of organizations founded by heart mom’s – many whose little warriors are still alive and kicking and you’d never know they had such a tough battle to get here, many of whom are still fighting for their lives, and still many more who are no longer with us today and are watching down from above and have to be proud at the impact that they’ve had on the world they were in for the short period of time that they were in it.
So without any further blabbering, here’s my shout out to just a small handful of the organizations that have been helpful to us along the way. I know you’ve all been giving as is, but I encourage you today to find just 5 minutes to give what you can via an online donation – literally, I hit all three of these places in less than 5 minutes with paypal donations. Reading this will take you longer than that. Or if you feel so inclined, take the time to write out a letter of thanks and send it along with a check to these organizations who really do “get it” and have been an absolute blessing to us over the last nearly 3 months of this crazy journey.
Hayden’s Heart is an organization that Las reached out to on our behalf in the very early stages, while we were still out at the University of Iowa and working on transferring to Philadelphia. The organization is based in PA/NJ and is in honor of Hayden, who had Hypoplastic Left Heart Syndrome as AJ has and was also cared for at CHOP. Unfortunately Hayden made his trip to heaven around 5 months old, but the organization was founded in his honor by his parents – Rob and Ady. We were very blessed to receive a grant from them that was an absolute financial blessing. You can donate to Hayden’s Heart via their website, you can even purchase items from their amazon wish list that will be placed in care packages for other parents/kids as well: http://haydensheart.org/
Help-A-Heart was one of the first organizations that reached out to us in Iowa and they were there with us every step of the way – even going so far as making sure we had Jimmy John’s deliver us lunch on procedure days so we were eating. Procedure days are the worst. Your nerves are shot, and the last thing on your mind is eating. Knowing that lunch was coming was a big load off, and honestly, without that, I’m not so certain we would have eaten on those days at all. The organization also provides various other forms of assistance to families – from support groups to gifts to financial assistance for families facing long term stays. Help-A-Heart was also founded by a couple of heart moms whose kid’s were born in 2005 – Melissa whose son Dylan was born with Hypoplastic Left Heart Syndrome and passed away at 3 years of age, and Emily whose son Gabe was born with Hypoplastic Right Heart Syndrome. You can volunteer to donate your time and talent, or make a financial contribution via their website https://help-a-heart.org/
Sometimes I forget that AJ will have additional battles and concerns outside of the heart world because that’s what has been at the forefront, but I want to make sure that today that we also give a shout out to the Hawkeye Area Down Syndrome Association — they have also stood by us throughout all of our diagnoses. They sent the most amazing care package to us in Philly, and I really do look forward to doing more with them as AJ continues to grow. Many children with Down’s syndrome also have congenital heart defects, and I’ve met some amazing people through HADSA that have been on similar journeys that have been so very supportive. You can donate to them online as well http://hadsa.org/
And finally let’s not forget the Philadelphia Ronald McDonald House or The Cardiac Center at CHOP, which were my home away from home for the past couple of months, both of whom you can also donate to online.
That’s not it. There’s more, there are so many organizations out there that have helped us in the last few months, many of whom I had never heard of before this journey began, but I think I’ve already well beyond exhausted an acceptable character limit for a facebook post and I’ll be impressed at those of you who have managed to read this far. So… if you have managed to make it this far, please really do consider taking a few minutes to give a few dollars to one or each of these well-deserving organizations so that they can continue to help families like ours.
