It’s February, Congenital Heart Defect Awareness month and as such The Bearded Wonder and I have decided that it is time to pay it forward.
When our son was first diagnosed with his heart disease he was rushed by helicopter for his first heart surgery at only four weeks old. We were stunned and totally unprepared. Questions flooded my mind when I drove home to prepare for his surgery. What do I pack, how long will I be there? Will I need to sleep in a chair? a hotel? the floor? so many unknowns and no way to really know what I was up against. Many hospitalizations later, I am a seasoned pro and know many handy tricks to surviving the hospital life. But it wasn’t always so.
There are moms who are scrambling right now to find someone who can come to their house and watch their kids for the next few days or weeks or months (who ever knows) so that she can get ready to fly with a little heart baby to some hospital, often across the nation. Many times, those flights are in tiny planes with just enough space for the baby or child, medical gear, flight crew and Mom with the clothes on her back and hopefully a little bit of cash in her pocket.
Being at the bedside of a heart kid can be tough. Sleepless night after sleepless night. Often there is no time to eat or shower. Many a night I have spent walking my baby up and down hospital hallways while toting an oxygen tank behind us. Things are so hard. And to top it off, very often Mom or Dad has to do it alone, with no spouse to tag team with. On top of a tough diagnosis and the emotions tied into having a very sick child, a mom has to live like a vagabond with no privacy and little comfort.
So here is what we are going to do. We are going to put together survival packs for those weary moms to give them a bit of hope in a very dark time. Since the majority of bedside companions for the heart babies at Boston Children’s are women, we have generated an ideal survival pack for a mom. With the help of other heart moms who have been at the front line, we have made what we call the Raven’s Bag. In the bag we have included items like soap, tooth paste, and other obvious essentials but we also have included some really helpful things that you never knew you would love to have. For example, on that rare night that your baby sleeps well you might be able to take a shower. You turn on the shower that is shared with countless other roommates and realize as you step under the water that some very sick kids are regularly showering in this shower which may or may not be cleaned as often as needed. That is where flip flops go from a luxury to a necessity. Being in the hospital with a child in crisis means a lot of phone calls, texts, messages and emails to keep up with and very often the charging outlets are behind the bed and too far to keep the phone plugged in as often as needed. We have found that extra long charging cables are a huge help. Having a journal and pen to write down important things about your baby’s diagnosis, meds, and confusing medical terminology you will have to Google later is a must; plus using that journal to document what is happening and write about big feelings that you really have no one to talk to about is extremely cathartic. One of the most challenging things about living in a crisis situation in a very public place is this: very often you just need a good, long and maybe even loud cry and you really can’t do that. Having a place to write out these feelings can be the difference of an emotional breakdown. Another thing that may become a necessity is dry shampoo. When showering is not possible for days on end, having a small can of this magic in a spray can will help you to look slightly less like the bag lady you have become. Boston Children’s hospital is, by far, my favorite hospital we have been to and we have been to quite a few. There are many reasons for this but one of my favorites can be described in one word. STARBUCKS. They have a blessed Starbucks right next to the cafeteria. I have dished out Starbucks gift cards to parents of inpatient kids at the hospital because caffeine is another essential and having something a little fancy can be such an encouragement, so each bag will have a little gift card included. I have thought long and hard about what book to include in this care package. I really want to include the Bible but I know that many moms going into Children’s are Muslim and many other faiths, so I wanted to be a bit more covert in my ministering. I’ve finally settled on including a copy of Ann Voskamp’s A Thousand Gifts in every Raven’s bag. Not everyone is a reader so we included a set of head phones for those nights of Netflix binging while nursing and rocking a very sick baby. These are just a few of the things that we have included.
But here’s the thing. This hospital is number one in the nation (and arguably the world) for pediatric cardiology and, as such, they serve many many sick heart kids every day. That means a lot of stressed out moms who could use a little love. We need your help! Will you join us in generating these bags to help families in crisis? Here’s what you can do: click the “donate” icon on the home page of this site and donate through Paypal, or if there are physical items you can select from the list included below you can do that too! Any money or items donated will go directly to the Raven’s Bags and the benefit of heart moms at Boston Children’s Hospital. And every penny counts, five dollars here and there can help us to continue to generate these bags and bring hope to people who are suffering. Also, if there are any talented knitters, crocheters, or sewers out there who want to pledge to make things like beanies, booties, and blankets we would love to put a home made touch in the Raven’s Bags.
Thank you all for reading this and considering helping us in our cause. I know that money is tight for most of us so we appreciate every single dollar. Even if all you do is share this post on Facebook, Instagram, or Twitter getting the word out is a huge help to us.
God bless and share the love.