Hope Filled, Hope Fueled

I wish you could fill up on hope like you do caffeine. Brew a big pot of it at home, add a dash (in my case half a cup) of creamer, and drink up. Or maybe on a rough day swing by the drive thru and grab a five dollar cup of hope with a fancy Italian name, your favorite pastry, and let that green lady get you through the day.

Unfortunately, it’s not that easy. Don’t get me wrong, I’ve got an eternal hope, a beautiful knowledge of life everlasting with the God of love. But it’s hard to live a hope filled life sometimes. I’ve noticed this a lot lately in regards to my daughter. I don’t remember how many appointments we’ve had and doctors we’ve visited in the past couple months. It’s been exhausting. And as thankful as I am for the physicians working with us, I tend to leave the appointments emotionally drained. These people look at my daughter and they see a problem, an extreme abnormality. I don’t blame them. Their job is to know how the human body is supposed to work, and when they find something abnormal they fix it. But with my daughter they see a child with no brain and know that medicine can’t change that. You can’t grow a brain. You can’t transplant one. You can’t teach another organ to handle the vast capabilities and responsibilities of the brain. I get it. But to visit doctor after doctor who sees my daughter in this light is exhausting. Many don’t see a person, they see a problem with no solution.

When I look at my daughter I see the sweetest face. I see a little girl who knows what she likes and knows what she doesn’t like and she is going to tell you all about it. I see a baby who adores her big brothers, who is afraid of the dark, who prefers the comfort of her own crib, loves fuzzy blankets, and who looks absolutely adorable in headbands. (Really she looks adorable in everything. She can’t help it.)

The week leading up to her shunt placement surgery, I got to meet with therapists for Wonder Woman, and wow, these people are game changers. It was the first time I had met with medical professionals who looked at my daughter and didn’t tell me all of the things she can’t/will never do. These women looked at my daughter and held her, they touched her and interacted with her. Then they told me how she will learn to grab things, suck on her hands, smile, coo, and with the necessary equipment to sit up and interact more with our family. They taught me how to help her learn to control her body and be more comfortable. They filled up my hope cup.

My heart soared to finally have someone in the medical field see potential in my daughter. And it wasn’t until those appointments that I realized how I had let my hope falter. How I had slowly started to buy into this narrative that all she will ever do is lay in her crib or on the floor and cry when she’s hungry or tired or scared by a loud noise. She’s not just adorable, there’s a whole world of potential in her. I’m ashamed that as her mother, I forgot.

One of the things a doctor said to me was, “I’m not trying to take away your hope. I mean, there is no hope.” He said this in an effort to explain how placing the shunt my daughter needed wouldn’t change the fact that she has no brain and all of her problems stem from that. His bedside manner is lacking, but he’s a fabulous surgeon taking amazing care of my daughter; I am incredibly thankful for him. And I understand what he means, but it’s not true, there is hope. There is always hope.

First off, there’s the greatest hope in a God who is not limited by biology or medicine. So yeah, I’m praying for a miracle, a big, huge, undeniably God miracle.

“For nothing will be impossible for God.” Luke 1:37.

“However, as it is written: ‘What no eye has seen, what no ear has heard, and what no human mind has conceived’ the things God has prepared for those who love him” 1 Corinthians 2:9

“Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us” Ephesians 3:20

But even if God doesn’t perform that miracle, even if He chooses to keep her exactly as she is (fearfully and wonderfully made), it’s still my job and my privilege to hope. That’s what we do for our kids. We teach them everything we know, we give them as much love, knowledge, and opportunity as possible, and then we hope and pray. We hope they grow up to be kind, full of integrity, honesty, and wisdom. We hope they find faith, love, joy, and contentment. So for my daughter I will hope. I will hope that she can see, that she can smile and laugh with her family, that she can talk and communicate, that she knows how incredibly loved she is, and I’ll even hope that one day she can walk.

Dear friends, if you hear anything in all of this, I hope it’s this: surround yourself with people who fill you with real hope, and become intimate with the One whose hope is “an anchor for the soul, firm and secure.” (Heb 6:19a)

Update: Post surgery Wonder Woman is doing well. She has been much more alert and she has healed beautifully. We’ve also seen many days where she was significantly less fussy, and she has even stayed with us in a concert and church service that she previously would have cried through. We hope that as she’s more comfortable and as we receive adaptive equipment, that Wonder Woman will be able to participate more in family events and outings and give us the freedom to experience more together as a family. We know that her life will be limited, but it is our goal to live, to do normal family things. I want her to do everything our boys do in her own unique way. Our only concern post surgery has been a significant change in her eating habits. We are monitoring closely and are praying for wisdom in the next steps we should take.

This is my command—be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go.” Joshua 1:9

“The Lord is my portion,” says my soul, “therefore I will hope in him.” Lamentations 3:24

I wait for the Lord, my whole being waits, and in his word I put my hope. Psalm 130:5

A semi-related note: Many people have seen an article about a little boy born with no brain who can walk and talk and count. It’s being hailed as a miracle, and it is. However, this little boy’s condition is not Wonder Woman’s. He has spina bifida which caused hydrocephalus (fluid build on the brain). When pressure from cerebrospinal fluid (CSF) builds up it pushes down the brain. So while it appeared this child had no brain, placing a shunt and relieving the pressure allowed the brain to grow back, kind of like a sponge that had been flattened. It is amazing what this little boy has achieved and overcome. However, Wonder Woman has no brain at all. I spoke with her neurosurgeon and asked what percentage he thought she had and his answer was a flat 0. She has a brain stem and nothing else. So unless God does a miracle (which I’m not counting out), she does not have any brain that can grow back because she has nothing at all. Now, after a very long blog about hope, please know that I’m not trying to squash yours. The fact that people pray and hope for our daughter is amazing and wonderful. If God decides to work a miracle and grow her brain, it will truly defy science. If he doesn’t but she lives a full life, it will also be a science defying miracle. Just being alive and in our family is a miracle, and I’m happy with that.

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13