Many people have expressed to me how following Annabelle’s journey with a Congenital Heart Defect and subsequent heart transplant has put their own problems into perspective.
I appreciate that, because it has put MY problems into perspective as well!
But as I live in this new realm of “heart mom” and mother of a child with very unique needs, I mingle with other mom’s with similar struggles. And many times, THEIR stories make a huge impact on my life.
I couldn’t list if I tried all the little babies or children I’ve known who have passed away this past year. Some of them I knew at the hospital personally, others just from connecting with their parents online.
One such mother is Beverly, mom of Leyda.
Beverly has held a special place in my heart ever since I met her online. Leyda is not her biological child, but she is child of her heart. She came to live with Beverly and her husband in 2006 and they adopted her in 2008
Leyda was born with Hypoplastic Left Heart and hypoplastic right lung. She suffered a stroke after her 3rd surgery and again last year, and had other complications that left the doctors with no options but to keep her comfortable. There was no hope, no cure given.
As a mother who has been through a time of “waiting” for my child to die unless a new heart is found, I know a small glimpse of what they must have felt like. The futility of helplessness is indiscribable. But at least for Annabelle, we had an option.
For Leyda, no option was available.
What struck me and bound this family to my heart was their celebration of LIFE.
Beverly didn’t distance herself from Leyda to protect her heart.
She didn’t coddle her and put her in an untouchable bubble.
Instead, she LIVED LIFE with her. As much as Leyda was able, she went to school. They went on trips. They celebrated. They had fun. Just a few days ago, they made memories by going to the pumpkin patch, even though Beverly knew the days were running thin. They made the most of every day, and didn’t wallow in what couldn’t be.
Leyda was welcomed into the loving arms of Jesus on Saturday.
On one of her recent carepage updates, Beverly wrote:
A couple of night ago,
her hand and foot were hurting and while massaging them I mentioned
that in heaven there would be no pain and she added “no shots, no
IB’s (IV’s) and no owies”!
I cried when I read that. Even far away and never meeting this sweet little one, I had this real sense that heaven was very close for Leyda.
People say sometimes that death is a way God uses to heal, and I’ve always felt that was a wee bit of a cop out, a way to explain confusion over an unanswered prayer. The thing is, I’m learning that God is God, and I can’t demand how He answers our prayers. I don’t pretend to know why babies or children like Leyda die. I hate that they hurt and have to have IB’s and owies.
Parden my language, but it sucks big time.
But watching Leyda and Beverly and their family live life together and make the most out of each day even when it must have felt hopeless has rocked my perspective in a huge way.
And knowing how much pain Leyda was in, and how free and HAPPY she must be right now, dancing with Jesus in her new body… I would not ask her to come back and endure more pain for anything in this world.
This life is short. Whether short equals five hours, five days, six years like Leyda, or over 90 years like my Grandpa who died while Annabelle was in hospital. Compared to eternity, it is a little blip on the radar.
It is HOW we live the time we have that matters. It’s how we serve Jesus, and find joy in His creation, and how we love others. And for the little babies that leave this life too soon, it’s about the impact their time here makes on us. It’s about loving them for every second we are blessed to have them.
Because Heaven is our final goal and reward.
I press on to reach the end of the race and receive the heavenly prize for which God, through Christ Jesus, is calling us.
Please, pray for Leyda’s family this week. And join me in celebrating the LIFE that this sweet little girl lived.
The verse Beverly shared:
Our bodies now disappoint us, but when they are raised,
will be full of glory. They are weak now, but when they are
they will be full of power.
~1 Corinthians 15:43
She’s doing well! We have her off oxygen again. Put her on at night the last few nights, but I always wake up to her having taken it off, and she’s satting perfectly. I’m trying her with it off tonight, however she’s dipping on and off, so if she doesn’t settle out to a nice number soon, I’ll put it back on.
She had one GREAT day of eating fabulous on Friday. The last two days have been much more of a challenge, but we’re making progress. I’ll take progress any day of the week!
And, at the moment, she has only ONE doctor appointment this week, and it is a therapy appointment! HURRAY! (although let’s not make too big of a deal out of this, because everytime I celebrate it, something happens and we either end up at the doctors three times that week or in the hospital. So let’s just pretend she has 4 appointments schedules and we miraculously get to cancel them, kay?!?)
Thanks, everyone, for living life with me, even though for some, it’s just “virtually.” It truly is a joy to share with you all.
Such a beautiful post, Krista. Made me long for heaven.
Thank you for this post. What a great perspective. I totally agree. My husband died 2 months ago after a very long, very painful illness. I like to imagine him in heaven pain-free and doing the things he wasn't able to do here on earth, just like little Leyda. And as you said, all these lives are just a little blip compared to eternity and that is what we get to spend with them, and Jesus. I can't wait….
Thanks for sharing Leyda with us. It caused me to hug onto my little HLHS boy while I finished reading it with tears streaming down my face.
I will be praying for Leyda's family.
Thank you for a lovely, honest, real tribute to this beautiful girl and her mother. You are right. We don't have all the answers. I pray for her family and continue to pray for you and yours.
Thank you for sharing. I am writing this with tears streaming down my face. Life is precious and we shouldn't waste it.
We celebrated our little Daniel's fourth birthday yesterday – four years living with Hypoplastic Left Heart Syndrome and several other major heart/lung defects. Four years living a miracle every single day and never knowing when Jesus will say: "Ok, time for Daniel to come home." We live in Mexico and have 17 children (14 adopted). Daniel joined our family from Veracruz two years ago when his biological mother told a local missionary that if she didn't take him home she was going to throw him away. Our hope was to be able to provide medical care for Daniel, but two years and dozens of contacts later, we have found no doctor willing to operate on Daniel and no hospital able to foot such a huge charity bill for an out-of-country child. So, we have literally, like Leyda, been left with no other option than to fully live each day until Jesus takes Daniel home. We have prayed for a miracle time and time again and realized some time ago that we witness the miracle each and everyday: Daniel has never had any surgery and is not on oxygen. Yup, his fingernails and lips are purpleish, he has to rest after running around with his siblings and his heart feels like it is going to beat right out of his chest, but he is a miracle and we praise the Lord for his life and trust Jesus to know when Daniel's mansion is ready for him to inhabit. I have read your blog faithfully for months and months, and have found some moments difficult because I am part of a heart mom community that doesn't even exist in Mexico and a community that doesn't fully understand the medical lingo because I have never lived through that day by day because even that can't save Daniel, but thank you for writing and sharing. Julie Zaragoza: firstname.lastname@example.org
Krista, like you said so well, "This life is short. Whether short equals five hours, five days, six years like Leyda, or over 90 years like my Grandpa who died while Annabelle was in hospital. Compared to eternity, it is a little blip on the radar." YES! That's exactly it! I said the same thing when my 9-month-old passed away. He died the same year my 86-year-old grandfather passed away. 9 months or 90 years, every life makes an impact. Every life serves a purpose. And every life ends, and no matter how long that life was, it never seems like we get "enough" time. That is something that has stuck with me ever since. My life is but a vapor. Better spend every second of it bringing glory to God.
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