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Tuesday, October 15, 2013

Update from Becky

Hello friends.....Happy October!

I am not sure how October crept up on me, but here we are. In St. Louis our days are already shorter, we have had a couple of nights where we have kicked the heat on in the house and as I sit here in our living room I can hear a continuous little song created from acorns falling and bouncing around our backyard. Not a bad set up for an early morning, and WAY overdue update.

So in my last big post I shared that "I was back!" And I have been, just not so much with the blog. Sitting and typing just hasn't felt great, and I have selfishly gone with that. I have though, been busy, busy, busy - mostly with MOHF. Being active with MOHF, planning fund raisers and taking care of all of the behind the scenes work with MOHF has been just what I have needed. But I do regret not blabbing more about MOHF and what we have been doing. So here is a mini update:

In the beginning of the year I took some time to really set some goals for MOHF and come up with a strategic plan to give it a boost. I knew that my energy and time would be well spent by doing this, and I also knew that nothing else that I did with my time would feel as good and healing as helping other families that are living what we have been through. 

Behind the scenes Greg and I got all of MOHFs book keeping up to speed with the help of an accountant and Quick books. My personal laptop and home office is now all about MOHF with designated files and folders, I have systems in place to keep MOHF and myself as efficient and as prepared as possible. We streamlined our application and application process. Lots of housekeeping. 

You may have seen it already but we had a new website created! Our original one was great, but this on is just better. We have also been working on a promotional video for MOHF that we will share in about 4 weeks at our Heart Gala and then later online. Our goal with the video is to not only share it on the web, and through social media to tell the story of MOHF, but to also use it as a marketing tool to attract the attention of corporate sponsors. If you follow me on facebook, or even twitter you may be exhausted of hearing me promote MOHF events...selling tickets, SELLING SHIRTS, asking for votes, and support, prayers....I am always asking my friends and family for something, and I am getting tired of it. I keep telling myself that I am MOHFing people out! The support keeps coming, which is amazing, but for MOHF to grow we need support on a bigger scale. The work that we have done in the last two years - strictly talking about assisting families - validates that Mighty Oakes Heart Foundation is real, we are doing amazing work and for a community that desperately need help. MOHF is and has been changing lives and it has been humbling to be front and center to witness everything that has been happening.

Have you ever had a situation or a time in your life when things just fall into place and just HAPPEN in the most amazing way? Like, you could not have planned it better yourself? Well, for me that time is now. And all of the falling into place and beautiful surprises in my life seem to happen around MOHF. I would like to think it is because the universe agrees with this path that I am on. I am doing something right. I am putting good out there, and good is flooding back in!

Often when I stop to appreciate the strides we have made my mind goes back to Oakes. I would trade the warm fuzzies and pride I feel for MOHF in a heartbeat, to have that little stinker back with us. I would still trade the world for him, but I know that is not an option. And I am just thankful and teary that he was and still is mine, my Mighty boy, and I am proud that after all that we have been through we have been able to do so much for others and support this sweet Congenital Heart Defect community that desperately needs so much support. 

So in this update I want to share three nuggets with you:

Nugget #1. After telling you what a great job MOHF is doing, I have to give you an example. Here is a little glimpse into a family that we just helped two weeks. A seemingly small request from a family, but the actual gift, although an object and a payment - they mean peace of mind, and comfort. They will allow a family to slow down, catch up, and shower their little one with undivided love, so that she may continue to grow and thrive. 

Part of an application that we received:
"My daughter spent close to six months in the hospital last year. She has open heart surgery and couldn't breathe without a ventilator, which led to having a trach/vent/feeding tube. We eventually came home and began to settle into life. We have 112 hours of nursing. Her father has to make so much money a month so we can receive nursing. It is enough to get by, but refrigerator isn't cutting it anymore. I think it has to be at least 20 years old. Our daughter has refrigerated meds and her formula needs to be refrigerated as well. We had to fix our leaky rood, which means no money for a fridge. We have enough money each week in case an emergency happens. It recently happened that our daughter was hospitalized for a week, which means no gas money, lunch money, survival money. We don't need alot of things because our daughter is our greatest gift. She is an inspiration, a joy to be around, and just a good kid. She will most likely need another heart surgery soon. A refrigerator would help us, it is just one less "unimportant" thing to worry about. Thanks so much for taking the time to read this letter. It means alot." 

What MOHF did for this family: We payed 6 months of their mortgage, and gladly bought them a new refrigerator.

What this Heart Mom had to say after receiving our grant:
"I just want to thank you so much for what you have done for our family and what you are continuing for other family's. You guys are truly an amazing family and have an amazing organization. We try to provide the best for our daughter, which lets other things fall to the side. I want you to know we are so grateful for your help and that one day we WILL return that same generosity. One day I hope to meet you. Once again thank you so much."

Doesn't that make you feel good? This is what being MIGHTY is all about, to me.

Nugget #2. During Oakes' hospitalization we learned about an international organization called International Children's Heart Foundation. This foundation has relationships with hospitals in developing countries around the globe, and they make trips to these countries, usually several times a year, to offer FREE, lifesaving surgeries to children with congenital heart defects. Amazing right? 

What is even more astounding is that these missions are staffed by volunteers. The staff that fills the Operating rooms on these missions, the bedside nurses that recover these little ones, every hand on deck that makes these missions happen from unpacking supplies and equipment to the person that sends the very last cardiac patient home is staffed by cardiac care professionals from around the world who have chosen to take vacation time, leave their families for 2 weeks, travel to a developing country and offer these unknown children and their families a chance at life that they otherwise would never see. (ICHF does send staffers on these trips to manage logistics, but the bulk of the team are volunteers!) That to me is the beauty and magic of these missions! Selfless giving in the biggest and most powerful way. 

During Oakes' life there were a handful of CICU staff that went on these missions, or shared with me about previous missions that they had been on. Everytime I heard about a new mission I was just blown away. Here we were in a thriving country, in a state-of-the-art hospital, benefiting from the brilliant minds of an entire team of specialist around the clock, every day and every night. And then on top of that there were all of these little things that even I took for granted before hearing about these having air conditioning, or supplies and equipment to administer meds and read vital signs (what I assumed was necessary and essential and which are usually disposable in the US), a chair to sit it, and even the ability to speak to the doctors or be at Oakes' bedside whenever I wanted. Hearing stories about some of the staff's missions always slowed me down. I remember one story, and I don't remember now what country this happened in, but someone told me about a trip they went on and the hospital didn't have any vents for kids that needed breathing assistance. So if a kid needed that assistance it was the families job to have someone in the room, bagging the child - manually squeezing an inflatable bag, which was then forcing air into the child's airway ultimately sustaining their life! This could be a necessity for day or weeks or months I can imagine. I have been through alot with Oakes, I feel like I have seen so much - but bagging my own kid for hours or weeks with the help of family and friends as we take turns standing guard - I cannot imagine. Not even a little. Hearing these stories always made it clear that there was some other Mom out there that was probably having a harder day than me. 

So, after cruising ICHF's website and watching this video that was posted to ICHF's facebook page, I contacted ICHF and asked, "How can Mighty Oakes Heart Foundation help?" As you know, I am not a cardiac care professional (even thought I think I am), so I could not volunteer my time on a mission. But it was clear that ICHF would take any monetary donation that MOHF could make. ICHF estimates that it costs them $2,500 to provide one child with a lifesaving surgery, so MOHF has donated $5,000 to ICHF this year. In the grand scheme of things this donation is tiny, but it is another way for us to give, and a great way to connect with others in the CHD community. Giving a family a refrigerator - great. Paying their mortgage - super. Offering them a lifesaving surgery that they otherwise would not have access too - YES, powerful, amazing - sign us up!

So, two surgeries. Two heart babies. Two lives. Two smiling mothers. This feels really good. 

After talking through our sponsorship with ICHF, Bryan Artiles their Director of Marketing & Specialty Fundraising, said that with the donation we could send someone on a mission as a volunteer. I slammed on the breaks in my always spinning little brain when I heard this. I welled up with tears at the thought of actually going on one of these trips. I immediately asked Bryan for more details and after talking and emailing about this for some time, we came up with a agreement that I would go on a mission with ICHF and blog all about it. I would share my experiences and thoughts as well as post images documenting my time on the trip. I would stand on my MOHF pedestal and give my new ICHF friends a mighty shout-out, and they in-turn would do the same for us. They would share on their blog about MOHF and what we are doing - we would cross reference our readers, and supporters. We would help each other out.

There are many little details between that agreement and what today's plan is, but the short of it is that I will not be going on a mission with ICHF this year, but my amazing, loving, and MIGHTY mother, Connie Fox Moore will be heading to Tegucigalpa, Honduras in less than a week as a Mighty Oakes Heart Foundation representative and she will be posting blog updates here along with images that she captures on her trip. She will be in Honduras for a week and will try to post daily if that will be possible with her schedule and Internet connections.

Since my Mom is not a cardiac care professional either, she will be asked to help out in lots of non-medical ways. She could be helping to set up the OR, she could be assisting the nursing staff, she could be sitting with parents while their kids are in surgery, or just loving on those little ones when they come out of surgery. We are not completely sure how they will use her, but she will be there and MOHF will be there!

Throughout Oakes' life my Mom was not only at my side constantly, but she was with Oakes all of the time. A round trip drive from her house to mine is about 16 hours, and she would do this every other week. She loved and still loves Oakes like crazy. She was without a doubt one of his biggest fans, and he hers. They had a special connection. Oakes middle name Lee, is also my Mom's middle name. I have no doubt that some of his mightiness came from her. So, I know this trip will touch close to home for my Mom. She is used to traveling long distances to stand at the side of a fighting, fragile little heart baby. She knows that CICUs have good days and bad. She took the crash course in CICU language with me, so she speaks the language. My Mom has strength that seems endless. She is a nurturing mother to her core and I am confident she will leave her amazing mark on Tegucigalpa, and the families and volunteers that she gets to know. And I have this feeling that even as she leaves the US this shining individual, she will come back from Honduras, a more compassionate, more appreciative, more humble little mother and grandmother. I just imagine her heart of gold will shine a little brighter.

I cannot wait to read her posts and learn about her trip. As her posts come in, I hope you will follow her journey. She will post before she leaves to introduce her self and say hello!

Nugget #3. There are lots of words in this post. Lots of good words, but still. One of my favorite parts of blogging is posting great photos. So here I go. In the Spring Isla and Greg and I flew from St. Louis to Maui for a 9 day get-away. Greg and I have been to Maui several times, just the two of us and I think it is heaven on earth. I LOVE Maui. I have gotten teary every time we have left the island, so for me this trip was definitely an escape. I just wanted to run away for a bit and that is what we did. 

Our time there was spent in very low keys ways. We did some sight seeing, but only when it easily fit into our lazy schedules. Isla was not that impressed with waterfalls, and whales. If you asked what her the best part of the trip was she will tell you it was the hotel's chlorinated pool with a huge "hot pool" to its side. We really could have been in the St. Louis Holiday Inn by the airport and I think she would have had the same dreamy glaze over her eyes while bobbing in the pool!

Ok, so no more are the images from out trip. Lots or beauty, lots of sun shine and of course, I was seeing heart everywhere!

Mighty LOVE, Becky

The view is always better on Papa's shoulders!

Whale watching....

Cardinals baseball via Slingbox and Maui brewing. 

She loved the beach!

Isla spotted one of the best hearts from the trip... chipped paint on the inside of a bathroom stall, in a stinky beach bathroom.


 Underwater viewing deck in a little tourist boat....lots of amazing sea life to take in!

 Big Heart rock!

And another!

Lava heart.

Feeding the Coi.

Maybe the biggest heart leafs ever!

Lots of little hearts making up one big heart.

Isla being brave!

Black sand beach.

Lots of smiles!

 Thanks for finding us, Oakes!

We can't wait to go back!

1 comment:

  1. Okay, I should really know better than to read your blog posts at work. I tear up every time! I am so excited about your mom going to Honduras and CAN'T WAIT to see her blog posts. I have no doubt she will be an enormous blessing to everyone she comes in contact with. I LOVE hearing about what's going on with MOHF and the reminders to vote, share, buy, DO. Life gets a little crazy and important things fly under the radar sometimes. I do understand the need for corporate sponsors to take MOHF to the next level and meet the needs of even more heart families, but we grass roots supporters will continue to help and support MOHF however we can! MI love,