I've been asked by so many what made Liza want to sell Lemonade to help fund her medical care -- her brain surgeries. There's no "easy peasy" answer to that, as even I don't know many kids her age who would think to be part of their own journey to wellness. But if you know Liza, well . . . let's just say she started helping out around the house at a very early age. Like "still in diapers" early. Taking out the trash used to be one of her favorite things to do before she could even complete a full sentence. I'm not sure if it was because it was quite an adventure to take the trash to the other end of the hall on the 11th floor of our building when we lived in DC . . . or if it was the fun of hearing it tumble down the trash chute and hit the dumpster several seconds later. Regardless as you can see, Liza tackled such things in stride, with her baby doll in hand and bare footed no less.
This kid has always been amazing. I know every mama says that about her babies. Liza, though, has never met a stranger whose life she didn't leave more blessed in having met her. She has always wanted to be part of the mix, and is often the leader of the pack. If you've met Liza at the park, it's likely been under her direction to circle up and play "duck, duck, goose." And regardless of your age, you're joining in the fun. She has a way in stealing hearts and spreading kindness amongst even the most hardened of hearts and the least likely to converse. She doesn't take no for an answer and will do what it takes to get what she wants.
Hence -- her lemonade stand. She wanted high heal shoes -- with sequins and glitter. Think Dorothy from the Wizard of Oz shoes. Mama said they were impractical, because what 6 year old (at the time) needs glitter high heals. Many many cups of lemonade later she was proudly wearing those glitter high heals. Every day. To school, to church, to the playground, around the house, in the backyard playing. All - the - time. Liza does as Liza wants. And she has a really amazing way of getting what she wants - and even needs. That makes my job as her mama a bit more challenging at times, as more often than not what she wants she doesn't need. Like another baby doll. Though somehow that doesn't stop her. In comes her lemonade stand.
I've always wanted nothing more than for my children to know that they can be anyone they aspire to be and do anything they set out to accomplish. Both of my kids have been encouraged to be independent, self-confident, and engaged in the day-to-day aspects of "life." At times I kick myself for this -- like the time my kids decided to help wash dishes. That turned out to be a cleaning of the entire kitchen - ok flooding.
Kids are amazing. All kids. Mine are no exception. But they are also the greatest blessing from God. And it is the greatest honor and pleasure to have been chosen by God to be their mother here on earth. As I'm no different than any other mother in that I often have days I just want to sleep in, or have some alone time, I am humbly reminded that there will be a day when I long to be awakened at all hours of the night, beg to be climbed on top of in the wee hours of the morning, clean up spilled milk all over the floor, and wish I was pulling my hair out having to plunge the toilet to find the babysitters keys. There will be a day when it's far too quiet and there isn't another inch in the house with cheerios waiting to be vacuumed.
In the times like those I've faced of late, what I've learned more so than ever is to let my kids be kids. Let the mess be a mess. Let the tears be comforted. To laugh at the spills. And ignore the trivial things that just don't matter. Because what does matter -- what is the most important thing to convey to our kids -- to cherish and hold on to for as long as we can -- is this . . . LOVE.
So today, in support of Liza's journey ahead, and her surgery Monday morning, if you do nothing else this weekend, help us stay strong by doing one thing, and one thing only. Love. Love yourself. Love others. Love a neighbor. Love a stranger. Love your friends. Love your family. Love your kiddos. And of course . . . LOVE LEMONADE!
Thank you to all of you who have helped make our journey to Boston possible. And Thank You to Boston for welcoming us with open arms and such amazing support. And LOVE. We could not face the road ahead without each of you.
We have a long road ahead and it's just beginning for Liza and our family. We certainly don't expect everyone to feel led to give, in fact we hope many will do nothing else but pray on bended knee. Though for anyone who wishes to know how you can help -- Liza's still selling "virtual" lemonade while we are in Boston, and graciously accepting cards, well-wishes and blessings by mail.
We have arrived in Boston! And for the first day in a long time Liza has had a really good day. It’s freezing cold up her, but that hasn’t stopped her from being her spunky self (for most of the day). Getting the day started was a bit rough. We met with Pre-Op at Boston Children’s to have a few tests run in preparation for Monday morning. Liza was feisty, very expressive in her discontentment in being here. She rallied though towards the end when she learned it would earn her a new Barbie doll after she had her bloodwork done. Thank goodness for the magic of child life specialists at Children’s. Works every time!
The visit would not have been complete with a little God Wink. In His usual fashion, God showed up just as we were making our way out of the hospital to take on the windy cold. We situated ourselves close to the exit, attempting to bundle up and decide who was braving the bitter chill walking back to our new home-away-from-home and who was hitching a ride. It was then a young teenager appeared, clearly going home after a recent brain surgery herself. Her scar was new and her sweet parents looked tired and ready to have their hospital stay behind them. They were forever gracious though, sharing their daughter’s story with us and encouraging us and Liza, assuring her she was with the best doctor’s in the world and she is going to do great on Monday.
God new this mama and I needed to cross paths, if for no other reason than for me to see her daughter smiling and going home. But it got better. Turns out the surgeons that did this sweet girls surgery is the same team that will be part of Liza’s surgeries in the coming week and months to come. For the first time in weeks I felt the elephant step off my chest. It was as if God spoke loudly and said, “See — I got this. And I’m going to show you, not just tell you.”
We are beyond blessed to have been able to find the doctor’s we have here at Boston Children’s, and to be in the most capable hands of a loving and gracious God, who has carried us to today, and is not letting go any time soon. And while the next few days we hope to have some fun here in the freezing cold and forget about the real reason we are in town, the harsh reality is that this is a hard weekend for us to be away from home, our friends, our family, and the comforts of our own beds. Monday will be here before we know it, and not long after we too hope to find ourselves greeting a newly arrived family to Boston, just as the sweet family did with us today, assuring them they are in the hands of the best doctors in the world, and the best physician of them all — our God.
It is truly amazing to see the droves of perfect strangers show up yesterday to love on my sweet Liza and gift her with an afternoon of fun, excitement, and "normalcy." You don't have to drive a Jeep to immediately feel like family in a group of Wrangler fanatics. And family they now are.
Most of the afternoon Liza spent running around with new friends, hoping in Jeeps and going for a spin around the block, and simply being a kid. It brought such joy to me as her mama to see her happy, playful and like herself again, a truly rare moment these days.
We had a really tough morning yesterday leading up to all the fun and Jeep Wrangle'n excitement. So tough that I texted my parents to please come over to our house and help me wrangle the kids. Liza was having fits of anger, frustration, acting out -- throwing toys, slamming doors, yelling "I'm having a hard time here, I did not choose to have brain surgery, I'm fighting for my life." And as a mom I felt totally and completely helpless. It was all I could do not sit there and cry my eyes out. My parents quickly showed up and scooped Finnley and Liza and headed to the park, giving me a few hours of quiet and alone time. It was a tremendous gift and blessing, as about the only "alone" time I have most days is behind the bathroom door, taking as long as I can to breathe, pray, and yes, the obvious, before two little feet come barreling through, asking "mommy what are you doing?"
We survived yesterday by the grace, mercy, love, compassion and understanding of people we had just met, strangers who instantly engaged as if we'd known each other all along. And it was amazing. Unbelievable really. This is not supposed to happen to my family, as we are usually the ones stepping in to take care of others -- neighbors, our staff, customers, and friends. The overwhelming support clearly demonstrates God's hand in every step of our journey thus far, giving me hope, peace and confidence in His provision in the days, weeks, months, and years ahead.
Thank you to ALL our new Wrangler friends -- Iron City Wranglers and all the other Wrangler clubs that came out yesterday. We are so blessed to have your love and support as we travel to Boston this week, and are honored to have been in your company yesterday. It was great fun for Liza and Finnley, and brought such joy to my heart seeing my children happy and enjoying the gift of life.
Keep the prayers coming. For Liza -- that she find comfort in God's almighty hand in healing her and carrying her through the days and weeks ahead, that she learns how to express her feelings and emotions in a healthy way, one day at a time and in letting those who love her in to carry the weight of her worries and fears. For Finnley -- that as he adjusts to all the changes brought on his day to day life that he feel just as loved, if not more, than every before. That he learns that feeling frustrated and upset as his days and nights are not what they used to be is okay, normal, and understandable. For me -- a mother -- with a great big God who will move mountains in a journey already won. A mother whose heart breaks at the sight of her baby girl hurting, crying out in fear and anger at "not choosing" the lemons life has thrown at her. A mother who desperately longs for the pain and suffering we are all experiencing to just go away. I know and believe without a doubt that God is the master creator and provider of this journey called 'LIFE' and that He -- and is already - making the impossible possible.
Thank you to everyone who has and is praying for us, loving us from near and far away, carrying some of the burdens in day-to-day life for me and my Dad and our bakery family, and for loving Liza so. We can't thank you enough!
The tears have not stopped flowing since Liza's story aired last night on CBS42. The love, support, encouragement, hugs, phone calls from all over the country, mamas I've never met . . . I'm speechless at how Liza's Zest for Life in selling Lemonade has touched so many people. We can't thank you enough to each and every one of you who have donated, stopped in Savage's Bakery today, and reminded us that we are loved by a very Sovereign and Glorious God who has already won this battle.
We've been asked all day long how to donate to help Liza as we travel to Boston for several brain surgeries in the coming weeks and months. There are several ways as you feel called to.
When I became a mom almost 8 years ago, despite how much I could now relate to all the moms who would tell me that your love for your children is so intense it hurts, I never fully got it. Until now.
The brokenness that has ensued from the traumatic experiences we've gone through these last few weeks is insurmountable. At times it feels crushing, like I can't breathe, and like the world is imploding around me. Other times I find myself wishing this was just a bad dream that I will wake up from -- hopefully very soon.
I find myself watching Liza sleep through the night more often that I would like to admit. It's not much different than having a new baby and waking to stare at the baby monitor to make sure there's movement. In this case, though, movement would send me flying out of bed to closely monitor an "episode". And not the kind of "episode" that keeps you staying up all night because you can't wait to see who is getting canned on the next "new episode" of Grey's Anatomy. No -- an episode is new to our vocabulary -- lingo we've learned from Neuro -- is followed by "call 911" followed by "she's seizing". These episodes take your breath away as a mother, because there is nothing you can do but wait. Wait for the paramedics to arrive. Wait for the 5 minutes that is required before rescue meds can be given. Wait to make sure she doesn't stop breathing. Wait to watch for her to regain consciousness and awareness. It's harrowing. Probably the worst thing a mother can witness happening to her baby.
I'd be lying if I said each day gets easier. In reality though, it gets harder. Or so it seems. We live daily knowing a seizure -- episode -- can occur at any minute, though most likely when Liza is sleeping. We live daily knowing we have so many days before we head to Boston. We live daily knowing brain surgery -- and multiple at that -- is part of our lives forever. We live daily with the harsh realization that at any minute the pressure in Liza's brain could amount to such high levels that her DAVM and AVM could rupture - like a balloon when popped with a straight pin. And there is absolutely nothing --- nothing -- we can do. Except wait. Anxiously. Expectantly. Prayerfully.
I've always been told I'm "strong" ,if you wish to call it that. I've had my fair share of health issues, injuries, surgeries, tough circumstances in life. But when it comes to the journey we were thrust into several weeks ago, I feel anything but strong. I crumble, fall to my knees, wake in the night, cry in the shower, begging God for a miracle. Maybe, I've come to realize, that means I'm stronger than I thought or want to give myself credit for, as it takes great strength to ask for help, to trust others and to trust God. It takes even greater strength, I've also come to accept, to be still and wait. Wait for test results. Wait for a team of the best neuro and neuro vascular surgeons in the world to form a team to help your child. Wait for surgery day to arrive. Wait during surgeries to know your baby is okay and alive. And the unending wait in the years to come, knowing future surgeries are inevitable, and that we have years, decades rather, before we are "out of the woods".
I woke the other morning and did what I often do when I wake feeling out of breath and like I'm not sure I can open the front door to tackle the day. I opened my Bible and let the pages fall where they pleased. I find that at times doing this allows me to step away from reading what I want to read and read what I need to read with an open mind and heart. And this early morning was no exception.
Here is where the pages fell -- or as I like to think -- God opened His Word where He knew I needed to read . . .
"This is what the Sovereign Lord, the Holy One of Israel, says: In repentance and rest if your salvation, In quietness and trust is your strength, But you would have none of it."
"Yet the Lord longs to be gracious to you, Therefore he will rise up to show you compassion. For the Lord is a God of justice. Blessed are all who wait for him!"
Isaiah 30: 15, 18
It hit me upon reading this passage in Isaiah that my perception of strength -- all this time -- had been relative to my understanding of strength. I've always equated strength to mean more along the lines of physical ability. In my everyday life that means the ability to lift a 50 pound bag of awkwardly shifting granulated sugar and carry it at least 100 feet. Think sleeping 50 pound kid, whose dangling arms and feet throw you off balance as you walk up the stairs, struggling not to trip over your own feet. Until now, that is how I defined strength. The only way I could understand it -- in the human sense. Yet as I sat in the wee hours the morning, sipping my extra strong Colombian coffee, it occurred to me how little I really understood what strength is. It dawned on me that true, meaningful and lasting strength is not physical -- but spiritual. From God. In the quiet. In trusting Him. In waiting for Him.
And so, in a week where I have found myself feeling like I have not much more to offer to anyone but the crumbs of the life I thought I had that so suddenly fell apart, I have learned something so much more profound than I ever imagined possible -- that strength is a gift, freely given, gained when we sit quietly, trust in Him, and wait - confidently, and openhearted. For His timing. His guidance. His direction. His provision. His miraculous love.
And so, with less than two weeks before we head to Boston, we wait. And in that wait, I am learning to rest confidently and quietly, knowing and believing that the only calm in this storm is in Him. The only way I can muster the strength to face the days and nights ahead -- to care for both my children, our family bakery, and myself -- is to sit quietly, trusting in Him, with an open heart, in solitude. I've accepted that it's okay to cry, to sob in fact, to want to stay in bed all day and watch Hallmark movies, to have no desire to clean the house or do the laundry. And I've learned to allow myself these little moments, and in them to turn to God, cry out for his grace and mercy, and to lay my fears, anxieties, and overwhelming burdens at the feet of Jesus. Only then do I gain strength, find peace, and have a renewed sense of determination to face the day, knowing God is holding us in the palm of his hand, every minute and every hour of the day and night.
In the wee hours of the morning Saturday, January 30, 2021, our lives and hearts were turned upside down when my sweet, sweet 7 year old, Liza suffered a Grand Mal seizure. She traveled by ambulance to Children’s of Alabama in Birmingham, and after being evaluated, was released. Later in the day while at home she suffered another intense seizure and yet a second ambulance ride to Children’s.
With what the ER dismissed as a “conversion disorder” causing Liza’s seizures, we have learned so much more that I get angry even thinking that they wanted to send us home without a better work-up. I knew in my gut it wasn’t whatever they seemed to say it was, and thankfully so, demanded they talk to my dad’s first cousin — a Neurologist — on the phone, from 800 miles away no less, who was very cordially and respectfully insistent that something more was at play and she should be admitted. Amazingly it wasn’t 20 minute before the ER team came back to say that Neuro had a change in their plans. And God Bless them, thankfully so.
The first week of February we spent as residents at Children's, undergoing studies, MRI’s and MRA’s, medication trials, and more. It was a long week filled with tears, lack of sleep, back and forth trips to Children’s daily, praying on hands and knees, and just surviving to the day we were able to come home. Several days later we returned to Children's where the Neurovascular surgical team performed a cerebral angiogram.
There really is no easy way — or even comprehensible way - to share what we have learned in the last week and a half since we found ourselves as residents of Children’s here in Birmingham. What we have learned and are coming to terms with is that Liza’s brain is extra special — created by God, made perfect in His image, beautiful in its intricacies — and here is why:
First . . . She has what’s called a Schizencephaly (cleft) in the right frontal lobe (what they believe is causing most of the seizures). It is an extremely rare congenital brain malformation (she was born with it) in which abnormal slits or clefts form in the brain. For today, we are treating with epileptic medications and should it become necessary in the future, a shunt.
Secondly . . . She has what is termed a Right Parietal Arteriovenous Malformation - or AVM. You and I think of it as an aneurysm, though it is actually a bit different and considered a cerebral vascular malformation for its existence as a collection or tangle of blood vessels in the brain that can restrict or alter blood flow. High-risk AVMs can cause bleeding or hemorrhage - - - and Liza’s is high-risk. In the coming weeks / months we will treated with microsurgical resection — in simple terms, brain surgery to remove it.
And Lastly . . . and the most serious of the 3 . . . She has a Dural Arteriovenous Fistula (DAVM). It too is a rare vascular condition where abnormal connections (fistulas) are made between branches of arteries and veins in the brain covering. High-Risk DAVMs pressurize veins of the brain itself (cortical veins) and cause a risk of stroke-like symptoms or hemorrhage. Liza’s is high-risk. She will undergo an several brain surgeries in the coming weeks and months, and then we will go from there as to ongoing treatment if necessary.
Since returning home and adjusting to our new "norm" medication schedules to control seizures, carrying a rescue pack everywhere, waking in the night to check on her, I find myself doing the only thing I know to do throughout the day -- pray and praise God. I thank God for His protection of Liza while we await surgery and I pray for a miracle everyday. I pray for peace and comfort for our family, my parents, and that God eases Liza's worries and fears, and gives her the strength and courage to tackle the journey ahead. I lift up my 3 year old little boy, Finnley, who is too young to know what is happening with Liza’s health, and who’s world has also been upended and thrust into last minute schedule changes and worries he can’t quite understand. And I place my trust in God and His perfect provision, providing the teams of Neurologists and Neurosurgeons with wisdom and guidance to know the right answers, and the best treatments for Liza, as we face at a minimum 2 brain surgeries in the coming weeks and months —- possibly more. Risks are higher than I’d like to think about — cause let’s be honest — it’s BRAIN SURGERY. And not 1 but SOME.
Liza is happy, handling all of this beautifully, slowly returning to her “normal” self — at least for part of the day - and is no different than any other kid who just wants to have fun. She doesn’t feel well a lot of the time, but when she does I’m soaking it up. The journey ahead is not paved with assurances, but it is paved with the promises of God — and in that I find peace, rest, comfort, and the belief that we will get through this wholly and fully.
Not one bit of any mother’s journey with a child facing medical challenges is easy. And this is no exception. It is further compounded by the fact however that each of these diagnosis, individually and separately, is rare. Combined, as in Liza’s case, is even more rare. And so treatment is delicate and we are just so blessed that we caught each one early before she experienced any further adverse effects from any, or all, of them.
Though, through it all, I stand firm in what I know and what I believe -- I believe in the power of prayer. I believe in miracles. I believe that God gives us grace to handle the heart wrenching times in life when we can’t see ahead to even the next morning coffee. I believe God heals. I believe that God allows the hard times in life to help others see His amazing love, protection and faithfulness. I believe God is glorified even in grief, heartache, sickness, and despair. And I believe — and know - that God is moving mountains around us, hears my cries for help, is my source of strength and peace during this season, radiating His goodness and His love by way of a beautiful little girl, made in His image, who doesn’t know a stranger, loves life, dances like a queen, and has defied all odds thus far.
God is good. And He’s with us. These waters may be hard to swim in right now, though we swim with confidence in His never leaving us and keeping us from drowning. And we rest in Isaiah 43:2 — “When you pass through the waters I will be with you.”
