October
I know we haven’t written for a long time. I know. It certainly isn’t for a lack of topics or really for a lack of time (although challenging it can’t be an excuse). It’s more the fact that October… well… sucked. It was a hard hitting month in the heart community, or at least in our corner of the community. I suppose every month is a sucky month… it just depends on who you know or whose story has been brought to your attention. October was mean. I couldn’t wait for it to be over. But I feel like it would be a disservice to not talk about the hurt and move on to the good with Evan. To me, it is important to acknowledge the painful times. Not because we in the heart community ever need a reminder of how precious life is – believe me none of us take it for granted. Pain is just a fact of our lives and if we share it with you it becomes yours. And if you don’t want the pain that is fine, but truly this is our everyday. It is odd to me when people bitch about the political bs on their Facebook newsfeed or whatever and you have all these heart communities unfortunately talking about death, setbacks, hospitalizations, troubleshooting, tough decisions, memorials, and the occasional triumph. Perspective is made daily. I know we haven’t written recently – it’s just hard to motivate a grieving heart sometimes.
October 1 – Evan was discharged from the hospital. Yay!! Unfortunately, during the discharge we learned that Zealen would be taken off of life support. :*(
October 2 – Zealen passed away in his mama’s arms. It was the first anniversary of baby Max’s passing.
October 5 – Great news! After a very lengthy hospitalization complete with a heart transplant, our baby friend Owen finally went home!
October 6 – Zealen’s memorial service. I wish so much this never had to happen.
October 6 – Saw a post on FB that scared the crap out of me. A family was having to say goodbye to their daughter Mia. I panicked, thinking it might be our Mia but it wasn’t. Don’t do that people! Use full names or a link! Anyway, I was introduced into this family’s incredibly heartbreaking story.
Sweet Mia was diagnosed in utero and was believed to need a heart transplant as soon as she was born. Amazingly, they were able to hold off until she was 4 months old. That was in 2008. She was doing great. Her dad changed careers and went back to school to become a nurse so he could best take care of her and graduated this summer. Mia was also granted her Make a Wish to go to Disney so she could meet Minnie Mouse, her favorite. They left their home in Washington and arrived in Orlando October 2.
Upon getting off of the plane, Mia was tired and her heartrate was up. They took her to a nearby hospital just to perhaps get some antibiotics for an illness she must have caught. She had an echo. They sent her to the cath lab, with her heart in rejection, and her little body was just too tired. Her heart stopped and when they got it started again, she had no brain function. They kept her body alive long enough for her donor’s mother to hold her before she died. Mia was planning on meeting her for the first time and had been practicing a special song to sing to her a few weeks after their Disney trip.
So incredibly sad. She evidently was in very good health and this was all just out of the blue. So so sad. I believe they did do organ donation, so Mia should live on in others. I don’t know how they came to know their donor, Jacob, or his mother, Jessica. A video was made for Jessica a while back to thank her for giving Mia life and it is more bittersweet now than ever before. Probably the best “pro-transplant” video I’ve ever seen. It will probably make you cry, but it is so incredibly touching. I consider it a must-watch and encourage all of you to watch it. Mia is the bright-eyed and happy 4 year old.
Mia’s mom is obviously in the throws of mourning. You can read about her incredibly honest, painful journey and all of the joy before the pain here: http://mcdonaldfam.blogspot.com/
(if you have trouble viewing the video link, they have it embeded on the front page of their website, although the text might be hard to read)
October 8 – Mia passed away.
Mid-October – Another child from Mott – Dennis – died and I wish I could find the notification but I can’t. We didn’t know him or his family, but I remember them from our hospitalizations.
October 17 – Baby friend Owen and his twin brother Keegan turn 1! A huuuuge milestoe and a joy they can celebrate at home.
October 18 – Our friend Brittany was admitted to the hospital with Class III heart transplant rejection, something she also battled in early September.
Ok so like by this point in the month I just like pretty much gave up. Clearly October was being an asshole.
October 22 – Brittany was able to come home. She has amazingly beat rejection every time so far (including being on life support the same time last year) but I hate that she is challenged.
October 31– Owen was readmitted to the hospital to monitor weight gain.
It is very possible that I missed some good and bad things. Like I said, I kind of checked out during October.
Today – November 7 – is Zealen’s first birthday. Happy Birthday sweet boy. I want to share what his parents wrote on Z’s FB page because I think it is important:
Happy birthday to my baby boy. I never thought this is how we would be spending his first birthday. I always knew Z was special but I never thought he would touch this many lives. I would love to just lay in bed all day but that’s not how to celebrate such an amazing little boys life. So as hard as today will be we’ve decided to bring balloons to the kids at Motts children’s hospital that are on the floor Z was on. Thank you for all of your thoughts and prayers for our family today. I have to ask a few things from all of you. For those of you with children hold them a little tighter today and make sure you constantly tell them how much you love them because any day could be your last with them. I also ask that as you think of Z today remember all that he did in such a short time. Use this time to do something nice for someone today. Even if its as simple as holding a door open or buying a small toy for a child. one random small act of kindness can change someone’s life and I think that’s a great way to honor someone so special on his birthday.
October is Pregnancy Loss and Infant Loss Awareness Month. You don’t say…
This has helped me get some stuff off my chest, so thank you for your patience.
