We have dear friends going through devastating loss and unthinkable pain--we are crushed by news that has come since last Thursday . . . a precious friend who lost twin baby girls at 26 weeks after losing two other babies last year; our neighbors of 15 years who lost a husband/daddy to melanoma; and our close friends whose 12 year old daughter is battling cancer and they are running out of options for her treatment. Our whole family is heartbroken for those we love. I've gone about my days with a lump in my throat. It takes but a whisper of a little voice asking why I am sad and the dam of tears breaks into sobbing.
I can't remember a time I've been this broken since our own loss of our son (that I shared about in my last post) and then weeks later the loss of my mother to cancer. Perhaps being "acquainted with grief" I have appointed myself some kind of safety-patrol of pain and I'm not liking the answer God is giving these families. But God is teaching me to surrender and to trust--this lesson was taught to me again this week in a hospital room.
When we adopted Ella, we knew her medical needs were significant. I remember our first appointment with the spina bifida clinic shortly after coming home from China. The nurse asked me if I had a medical background--she was trying to make sense of our decision to adopt a girl with special needs. She probably pondered "why else would anyone choose a life of surgeries, therapies, of disabilities?" She seemed alarmed to learn that I was an English major, I still chuckle at the look on her face--some days I too question placing myself on this high dive as I look down into a pool deep with diagnoses I can't pronounce or spell. But you see, we chose Ella, not her medical needs. I think it probably takes adoptive parents who are naive enough to make that leap of faith and know whatever is ahead God will equip us for. We love her exactly as she is and as her mom and dad we are just trying to give her the best quality of life possible.
At every doctor's appointment I brag about her--I tell the doctors that she has already exceeded expectations of what we were told she would be able to do. I share about how strong she has gotten with PT and show how quickly she can move with her walker. I pull out my phone to display photos of her climbing the rock wall at the playground. They humor me and then burst my bubble: "But you do know what her future holds, don't you? As she grows, her upper body will not be able to be supported by her lower body. She will most likely need a wheelchair to get around." The only words I hear are "most likely" which I translate into "we don't know what we are talking about" and in my mind I am determined that my girl will prove them all wrong.
But I do listen when my daughter tells me her short list of big dreams: "I want to run like everyone else on the playground, I want to wear pretty shoes like the other girls, . . . I want a cell phone." That last one will have to wait, and I do cram those leg braces into modified Mary Janes and fur trimmed boots as best I can, but haven't yet figured out how to make that first request happen. And that makes me feel like I have failed her.
And so a couple months ago her sweet neurosurgeon explained there was one more surgery they could do to help her walk. Her tibia bones rotate out at a 45 degree angle thus causing her feet and hips to compensate for the improper alignment. Without surgical intervention she would never walk with a normal gait. He explained that they would saw the bones under the knees, position them correctly, then reattach with metal plates that would be taken out in a year or so. And as any responsible parent would do, I Googled this procedure to make sure he wasn't making it up and we decided to proceed.
So this past Monday we checked into the hospital for her tibia osteotomy. She wasn't the least bit afraid and announced to everyone she met that we were making her legs better. She was a trooper post surgery and handled the pain like a champion. We had some sweet mother/daughter bonding time with room service and movie night but by Tuesday afternoon we were ready to go home. As I packed, Ella asked if they were ready to take those heavy casts off. I reminded her that she would have those on for several weeks--I saw the disappointment. She had not understood the timetable and wasn't happy about it. "But I thought I would be able to run when this was over?!" she pleaded. I did my best to put a positive spin on the coming weeks of coloring and play dough and quality snuggle time.
She pulled it together until her consolation prize arrived. The hospital had ordered a wheelchair and they were insisting that we leave in it. It was so big her legs didn't even reach the foot rests. It was black and metal and must certainly have looked ugly in her world that is adorned in pastels and themed with princesses. She has seen wheelchairs many times. Her big eyes watch them come and go at our PT appointments. She sees children completely dependent on them and didn't want any part of it--instead of her seeing the assistance it could be, she saw a huge step backwards after a year of great progress. There was a bait and switch in her mind--she didn't go through all this to leave the hospital in a wheelchair. I told her to imagine it was Cinderella's carriage taking her to the castle. Major eye roll. Had she known profanity, room 4247 would have suddenly not been appropriate for all audiences. She instead gave me a look that spoke volumes and went into full-blown meltdown as the nurse and I put her in the chair.
I got to handle this little hospital adventure solo because kids under 12 aren't allowed during cold and flu season and Brad was home taking care of the others. I got us in the car and headed home--I was ready to have the home field advantage for the rest of the recovery. Ella drifted off to sleep with a pout still on her face. Mr. GPS guided me to familiar territory then I chose to go home a different way because I knew this time of day which roads and highways to avoid and needed to make a stop at the pharmacy. But he didn't like that I wasn't following his computerized route. He started insisting that I make a U-turn at the next light, or turn right, or turn around. I thought, "Oh great, now I'm getting attitude from an app on my phone!"
I turned the GPS off and drove the rest of the way in silence. I couldn't help but see the parallels between how I was acting toward God and how Ella had acted toward me. She didn't understand why we had put her through such pain--even breaking bones and taking her to scary places--when she was just fine before. She didn't know that it is because we love her and in the long-run it will help her--that we agonized over options and felt this was absolutely best for her. She doesn't know that although 8 weeks of casts seems like an eternity now, it will be nothing in the scope of her entire life. She doesn't know that she now has legs positioned correctly and grafted with metal--she will be stronger than she would have ever been on her own. And then I pondered my own spiritual adoption--chosen in spite of my brokenness, loved even when I am hard to love, ransomed so that I would not be subject to the consequences of my sin, and in my weakness I'm am made whole being grafted and held by God's strength.
When we returned home Tuesday night, we got the crushing news that our friend Kylie was too sick to go on her Make-A-Wish trip to New York City. Her dad's Caringbridge post confirmed it . . . it is without question the most heartbreaking thing I've ever read. We pulled our daughter Ava aside to share the news with her first--Kylie is like a sister to her and Kylie's sister Jenna has been one of Ava's closest friends for many years. I wished I had had words of wisdom. I'm the mama bird who is supposed to chew the big stuff into little bits before passing it along to the babies but the pieces were still too big for her . . . for us all . . . to digest.
Lately I have acted less like a disgruntled preschooler and more akin to Mr. GPS. I am so sure that my ending to the story is better--that my route is in fact the best way to get from point A to point B--that I will not even consider other options. I know firsthand that His plan is perfect yet I still cry out to God begging for a U-turn, an alternative route, a miracle. I know that God does allow us to go through hard times so that we will draw closer to Him but with these families I just can't wrap my mind around a why--already such faithful believers, they had already pointed others to Him in their trials, they were already glorifying Him in their lives. Wouldn't it certainly bring Him more glory to heal a little girl of cancer?! But His ways are not my ways. His thoughts not my thoughts. But His grace is sufficient and I must rest in that. The only tragedy worse than losing a loved one is losing a loved one and not having the Almighty Comforter to carry you through it. He has been so faithful to me during my own times of sorrow, how can I question the wisdom of His plan. And yet as I type this, I still petition for his healing for this precious young lady.
Many have asked how is Miss Ella? She's doing well. Today she was playing with her toys and looked up at me and said, "I love you, Mom" out of nowhere. It took me by surprise and I needed to hear it so badly that I asked her to repeat what she said. She giggled and covered her face, acting all shy about it before repeating her "I love you." I'm hoping this means all has been forgiven. And the wheelchair? It's still in the trunk of the car and will be going back to the medical supply store very soon. She may need it in the future, but she doesn't need it now. We will happily carry her anywhere she needs to go in the coming weeks, just as I know our Father will carry our friends through this heartbreaking time. There is no burden so great, that He can't bear.
|Ella--Not thrilled about the carriage, but happy to be going home!|