"Amachi" is a Nigerian Ibo word that means "who knows but what God has brought us through this child".
See that picture, that's Scott, Ashley, Parker, Layton and that little cutie-patootie is Kate. That word, Amachi, applies to her.
If you saw this family out at the local park or strolling in the mall you would never know that they live a life that requires bravery every second of every day. They're not in the witness protection program and no one is searching for them.
They must be brave every single moment of every single day because that sweet cherub of a little girl has a congenital heart defect called Hypoplastic Left Heart Syndrome. That's fancy medical talk for saying that the left side of her heart is underdeveloped to the point that it's life-threatening. You can find out more about HLHS by going here: http://hlhsinfo.homestead.com/.
Kate's story is a long one and it involves multiple surgeries just to get her to her third birthday. There have been ups and downs, heartbreaks and triumphs but through it all, Kate, her brothers and her parents have simply kept their faith and have inspired everyone who knows their story.
Ashley does an outstanding job of chronicling her daughter's journey in their CaringBridge site. If you have the chance to go through the site, you'll see instance after instance where the prognosis was bad but the faith was strong. At one point, as Scott and Ashley watched helplessly as their infant daughter was being saved by a medical team the only words that would come to Scott were "Faith, Not Fear". Neither he nor Ashley could find words to express the depth of their despair. The only thing they could do was repeat "Faith, Not Fear". The moment was so powerful for them that they had wristbands made that have the saying stamped on them. I have one and I gave one to my good friend Kimberly Adelson as she began to face her chemotherapy.
As the past few years have progressed, Kate has had two open-heart surgeries. These are necessary for her to continue living. It's also necessary that Kate stay as healthy as possible. Simple childhood illness can be fatal for her. Through it all, she and her brothers and her parents must be brave. They cling to hope and prayer and have learned to "let go and let God". That's something I'm not sure I would be able to do.
Kate's brothers are extremely protective of her and they worry about her. In their own way, they understand that Kate is at-risk and that she needs all these medical procedures in order to keep living. Recently, Ashley posted a picture on Facebook that moved me to tears. She walked into Kate's room in the early morning hours to check on her and found both brothers in bed with her. One on each side of her. Kate was cuddled up in the middle, sleeping peacefully.
Ashley and Scott firmly believe in the presence of God and angels. As I looked at that picture, I saw two living angels surrounding and protecting a little girl they love very, very much. Those angels draw their strength and courage from their parents, grandparents, family, friends and relatives. For me, they are a living example of the selflessness of love Christ commands us to foster. It's not easy for us as jaded adults to develop and give that love. I'm thankful that Parker and Layton were there to remind me of this command.
On September 1, Kate is scheduled to take on her next big hurdle. She will have the third of her open-heart surgeries. This one is a Fontan surgery. It's a really, really big deal. The reality is, without the surgery, Kate won't make it. The surgery is tricky and risky but Kate has been there and done that. She's come this far and kept so many people enraptured in her life that I'm confident she'll walk right through this one, too.
Just recently, Kate began talking to a new imaginery friend. His name is "Jeffie". A friend of Ashley's did a little research and discoverd that "Jeffie" actually means "God's peace". Kate's ready for her surgery and I'm sure "Jeffie" will be there with her the whole time.
If you haven't figured it out yet, Kate is not the only brave one, her mother, Ashley, and her father, Scott, are truly the heroes in this story. As they've watched their daughter struggle just to live, they've never lost their faith. They've never faltered in believing that there was a bigger plan in place and that this was all just part of that plan. Of course they've shed tears, been frustrated, scared and I'm sure, a bit angry. I would be willing to bet that they've even expressed some anger with God over this. That's natural. What's so extraordinary about them is that they've continued to be faithful and faith-filled. They've continued to lead by example in their CaringBridge updates and in their personal lives.
I barely know Scott and Ashley but I feel like I've known them all of my life. They are the parents that Elizabeth and I try to be. In some respects, they are the modern holy family. They live in the face of constant adversity and yet they continue to be faithful and to lead by example.
On September 1, I plan on spending a big part of my day praying for Kate. I'm also going to pray for Parker and Layton. Most likely, though, I'm going to spend some extra time praying for and thinking about Scott and Ashley. I'll be praying that God will continue to provide them with peace and strength and courage. Maybe "Jeffie" will leave Kate for a bit and join them in the surgical waiting room.
I hope you'll join me on that day. Mark it on your calendar. As you pray, you might try to work the word "Amachi" into your prayer. I'm going to.