I am utterly undone.
Baby Greg, my little Baby Greg, went to be with Jesus this evening. As I sat there on the bed next to him, in the time it took me to put a new monitor on his little toe, he seized the small moment that I was in the dark and slipped away. No fighting. No flailing. No fuss. He just. Stopped.
A thousand moments run on an endless loop in my head. Marion, brought into the empty ward where I waited for her, seeing my tear-stained face and falling to the floor, my arm the cushion for her head as we laid together and sobbed. His little mouth and nose and fingers, still and peaceful. Finally. Walking with him in my arms, a red-blanketed bundle, down the gangway and into the waiting car. Driving through the Liberian night, using my body to shield his from the jarring roads, errant lights from passing cars illuminating the curly wisps of his hair. Sitting by the light of a single candle, the flame still in the airless room, as all around me people cried quietly. Greg in his Grampa's arms, stripe-socked feet sticking out of the bottom of the blanket, as Grampa rocked him back and forth back and forth, crooning soft words in Kpelle.
Some of the children got to go back.
God, why?
Why are we left here with hearts poured out like water on the world?
welcome!
I'm Ali, wife to Phil and mama to Zoe and Ethan. We spent the past 6 years living and working with Mercy Ships on board the world's largest non-governmental hospital ship, the M/V Africa Mercy, as nurse, electrician, and ship's baby respectively. On board the ship, we worked with a team of volunteers from over thirty different countries, providing free surgical care and healthcare development, bringing hope and healing to the forgotten poor in West and Central Africa.
In March of 2014, during a routine ultrasound, we found out that our son, Ethan, has a four-in-a-million condition known as heterotaxy. He has major congenital heart defects, and had his first open heart surgery before he was a week old. Although the future for our son and our family is uncertain, we are more than ever convinced that God will be faithful to lead and guide us through this new season the same way He has in the past.
(I've had a big problem with spam comments around here and literally don't have the time to sort through all of them, so comments on all entries before Ethan's story began have been turned off to keep the numbers down. I moderate all comments on new entries, so don't worry if yours doesn't show up right away. If it won't let you post, please e-mail me at alirae[at]quist[dot]ca. I love hearing from you!)
In March of 2014, during a routine ultrasound, we found out that our son, Ethan, has a four-in-a-million condition known as heterotaxy. He has major congenital heart defects, and had his first open heart surgery before he was a week old. Although the future for our son and our family is uncertain, we are more than ever convinced that God will be faithful to lead and guide us through this new season the same way He has in the past.
(I've had a big problem with spam comments around here and literally don't have the time to sort through all of them, so comments on all entries before Ethan's story began have been turned off to keep the numbers down. I moderate all comments on new entries, so don't worry if yours doesn't show up right away. If it won't let you post, please e-mail me at alirae[at]quist[dot]ca. I love hearing from you!)
ali (that's me!)
phil
zoe rae
ethan vikash
ethan's story
Due on the Fourth of July and born on Canada Day, Ethan has given us so much to celebrate. He had his first surgery when he was six days old and amazed the doctors by being ready to go home before he reached the two week mark. Heterotaxy can affect every organ system, but so far Ethan seems to have escaped some of the common complications. While his heart has a number of complex defects, it's working well so far. His intestines actually formed correctly, and his lungs and kidneys are all functioning well. He does have at least five spleens, and it's assumed that they do not function, so his immune system is most likely compromised; he will most likely be taking daily antibiotics for his whole life.
Here are a few links that might be helpful, since the medical side of things can get pretty confusing with a heart this special. The surgeries listed for each of his heart conditions don't necessarily apply in our case, since we have to look at the big picture, not just each individual defect; we're still waiting to see how his heart grows before we decide what the next step, which will probably taking place between 3-6 months, will be.
What is heterotaxy?
AV canal
double outlet right ventricle
pulmonary atresia
ventricular septal defect
BT shunt surgery
'Hope For Ethan' Facebook page.
All the entries about Ethan.
Here are a few links that might be helpful, since the medical side of things can get pretty confusing with a heart this special. The surgeries listed for each of his heart conditions don't necessarily apply in our case, since we have to look at the big picture, not just each individual defect; we're still waiting to see how his heart grows before we decide what the next step, which will probably taking place between 3-6 months, will be.
What is heterotaxy?
AV canal
double outlet right ventricle
pulmonary atresia
ventricular septal defect
BT shunt surgery
'Hope For Ethan' Facebook page.
All the entries about Ethan.
instagram? @alirae29!
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This is the story of my life. Wife, heart mama, nurse, and erstwhile sailor, transitioning from life on board a hospital ship off the coast of West Africa to life on land with a spirited toddler and a very special little boy. All content © Ali Chandra 2007-2016.
Because, my dear, you couldn't be there to help carry the cross, or give Him a drink or heal His wounds. So I believe that some little ones are born to suffer and even die so that we can truly be God's eyes, ears and hands.
I'm so sorry for your grief, Ali. But I truly believe that caring for the dying is the most blessed act you can do in this life and doing it with grace, compassion and love, as you do, is a gift. If you have the courage to accept that gift it will give back blessings tenfold. Keep pouring your heart out and it will never be empty.
Love you,
Susan
My name is Brittany and you have no idea who I am and I have no idea of who you are except that you have a beautiful heart full of love for God's precious children. As I sit here on my bed reading your blog...tears have multiple times fallen down my face. My heart so yearns to serve the people of Africa. I have been praying about joining along with everyone on Mercy Ships as a nurse and am waiting for God's guidance. Thank you for encouraging me through sharing your heart and thoughts.
Blessings to you!
Brittany
brittany.gomes@gmail.com
p.s. I sort of feel like a creepy stalker...but am not I promise!! somehow found your website originally via facebook!
Thank you for the wake up call. After reading your words, I feel as if a tiny part of my own spirit has been resurrected -- and I don't intend to squander that.