Amelia and the Change-up.
Life is a funny thing and it’s a whole lot like baseball. You think you have some of the hard stuff figured out – like how to hit a 95 mph fastball and maybe even homer off it. And then a 76-mph change-up comes your way and sends you back to the bench to lick your wounds after your epic swing and miss.
Today is nine years since our precious Amelia went Home. And I’m no grief expert, but since we had practice grieving during her lifetime and we’ve had almost a decade to face those fastballs since, I thought I had a pretty good idea of what was coming when and how at least to stay at the plate and not whiff. Maybe not hit it out of the park, but for sure not have to go slumping back to the bench.
But last week was ALL change-ups. Off-speed stuff that I just couldn’t hit. Amelia went Home in 2008, and before the first year’s heavenly birthday, I prepared myself so much that it didn’t knock me over the way I thought it would. But the second year? That was a different story altogether. And for reasons I can’t explain, this year felt more like that second year than almost any year since. The 5th year I ended up physically sick from the grief; so that year was a hard one, too. But I wasn’t prepared for this one. For the crying. The uncontrollable crying. The bittersweet memories that I wasn’t seeking but that came and came and came some more.
I told some friends this morning about last week wiping me out out of nowhere. And I told them that I think one of the things that made last week harder was that for some reason I don’t understand, I kept remembering not how hard her life was medically-speaking but instead how sweet and dear it felt having her head rest on my shoulder. Like just for those moments when her head was on my shoulder, the weight of the world was off hers. She melted into Brian and my parents the same way. She did that on my shoulder – and scratched my back with her hand at the same time – after surgeries and procedures and blood draws and therapies, yes. But the ones I was especially remembering last week were the times when she did that after I got her belly-laughing in the swing. Or after she laughed over hearing a thunderstorm. Or when I would carry her to bed after we read “And To Think That I Saw It On Mulberry Street” by Dr. Seuss for the 487,000th time. Such sweet, sweet memories, and I’m immensely grateful for them.
Amelia was a fighter with a remarkably sweet spirit. She never quit, and in so many ways she is the one who taught me how to pray, taught me who Jesus really is. For years I thought I knew, thought I understood. But it was lessons learned from her life and since her Home-going that have really opened my eyes to who He is. Who can put a price on that? As the late Rich Mullins paraphrased from the psalmist, “Who have I in heaven but You, Jesus? / And what better can I hope to find down here on earth?”
I post about her every year on her earthly birthday and her heavenly one not so that I can bring anyone down or garner any sympathy but in the sincere hope that in learning about her even just one of you reading this will want to know Him … because while I love her and miss her and always will, I don’t worship *her* … I worship the One who made her, the One who thought the world would be better for having had her in it even though He knew before she was born what we never could have known: that she would not be long for our world that is on this side of heaven.
He is the reason I share these Amelia posts every December 19 (her earthly birthday) and April 10 (her heavenly one). And He is why I will share here a copy of the article our church asked me to write six months after her body had run its course and she went Home. He is also the reason why Brian and I have the marriage we do and why we have made it through the tsunamis of grief still standing. He is the reason we have joy.
So today while we remember the last day we held Amelia before she went Home and take all the change-ups that come with that, I will once again worship Him. For who He is, for the gifts He has given. I will love my Brian who was a devoted, wonderful father to our girl. And I will love and enjoy our other three littles who are not so little any more who are absolute gifts from Him. And I will be grateful for my broader family and for my friends who have loved Amelia and all of us so beautifully. How many blessings can one woman have?
It is well. Fastballs, change-ups, tidal waves, tsunamis, sunshine, and joy … it is well.
To God be the glory.
AMELIA & JEHOVAH JIREH by Madeline Robison (first printed in Highland Park Presbyterian’s ONE magazine, October / November 2009)
JEHOVAH JIREH. THE LORD PROVIDES. How many times throughout our Christian walk have we known that? And yet so often even what we know of God does not grab us at our core until we come face-to-face with personal crisis. During those times, if we allow Him to do so, Jehovah Jireh reaches into the depths of our beings to give us insights into Himself and how He wants us to relate to Him and to everyone He has placed in our path. Sometimes, He even uses one of His children to deliver the message for Him.
That’s how it was for my husband, Brian, and me. Through God’s gift of the greatest faith teacher we have ever had, we have learned of God’s provision in such a way that we are forever changed.
She was a gifted teacher: one of few words but a ready smile, one whose eyes saw beyond what anyone presented to her and instead into the soul, one who taught by example that spirit and determination and the gifts of the Father matter more than anything of this world. She had Shirley Temple curls, an infectious laugh, glasses that showcased her as the scholar-of-sorts that she was, and skin as soft as silk. She was a stubborn fighter who never gave up, even in the face of insurmountable obstacles.
She was our daughter, Amelia.
A long-awaited blessing after two years of hard-fought, unexplained infertility, Amelia Katherine Robison was born into the world just six days before Christmas 2003, a wonderful Yuletide gift. Small for a full-term baby, Amelia compensated for her diminutive stature with the power of her lungs. Until Amelia was born, I didn’t know it was possible for a five-pound, one-ounce child to make herself heard 100 feet away.
Because Amelia had been conceived with medical help, I had had multiple sonograms, all of which had shown normal development. Even the fact that she was so small for a full-term baby did not alarm anyone. When she could not effectively nurse and when she did not sleep for more than 60 minutes at a time, no one had concern; the general wisdom was that all babies who are small have a harder time with the basic functions, and Amelia certainly did. In actuality, unbeknownst to anyone at the time, Amelia was engaged in a battle for her life.
By the time she was nine weeks old, she was in the hospital for a four-day stay to determine the cause of her inability to gain weight. Feedings by then had become almost unbearably miserable for her. She could not comfortably ingest her food, and what did go into her system caused her profound pain until she threw it up in violent fashion. She was increasingly lethargic until she could muster the energy to cry, and then she would let out heart-wrenching wails. When she did cry, no tears would come out because she was so dehydrated from lack of food. A swallow study during that hospital trip revealed that instead of going into the stomach, the food was going into her lungs. The radiologist who read the report turned sheet-white and expressed disbelief that she had not yet developed double pneumonia, something that, medically speaking, she should have contracted, and that almost certainly would have been fatal in a child so small and so young. Jehovah Jireh.
By the time she was 10 months old, Amelia had had multiple hospital stays during which she underwent surgeries, tests, procedures, and biopsies ordered by doctors in every pediatric specialty except two. During Amelia’s longest hospital stint, a 23-day-long stay in August and September 2004, Amelia contracted sepsis, a blood bacterial infection that entered her bloodstream through a special IV inserted directly into a vein near her heart. Had it not been for the very alert reaction of a nurse who “happened” to take Amelia’s temperature at 2A.M. and call the doctor whose instructions of immediate steps to take turned the tide on the sepsis, Amelia would not have survived the night. Coincidence? No. Jehovah Jireh.
Near the end of that long stay, one piece of Amelia’s lab work spiked for – or indicated – a fat metabolism disorder. All foods break down into fat, protein, and sugar, and all standard baby foods – from breast milk to formula – are 40 percent fat; for an infant to have a fat metabolism disorder means that the child’s body cannot assimilate, or use, the bulk of its food. An inability to metabolize fat is a particular problem because our bodies – especially our brains and our livers, and especially everything in little babies’ bodies – need (healthy) fat to grow. Although our society tends to think of metabolism as the engine that drives weight loss and gain, in actuality it does so much more. Metabolism encompasses the chemical processes that make our bodies work on a cellular level; in other words, if something is wrong with someone’s metabolism, then every cell in his body is affected.
That news was not good, but it strangely brought relief because we thought we finally had an answer. We canceled a surgery we had scheduled, which almost definitely would have killed her, and we put her on a formula that contained the base-line amount of essential fatty acids to keep her body functioning. When she immediately stopped projectile-vomiting her food, we relished the possibility that if Amelia did in fact have a fat metabolism disorder, we would finally have something we could work with to help heal her body, or at least the knowledge to quit giving her food that was literally poisoning her at every feeding.
It would not be so easy.
The test result that showed a fat metabolism disorder was, medically speaking, a fluke. Never again did any lab work show Amelia to have a definable metabolic disorder, fat or otherwise. But following the line of thinking – and our earnest, specific prayers – that God had not allowed a coincidence but instead was pointing us in a critically important direction, we sought the help of the country’s leading metabolic geneticist at the Mayo Clinic. He just “happened” – Jehovah Jireh – to have an opening in his schedule right away.
During that visit, Amelia was tested for every known metabolic disorder, chromosomal abnormality, and genetic disorder; all tests came back negative. That was a shock. However, in Amelia’s lab work, the doctor noted signs of chronic dehydration and malnutrition (from her food making her so sick) as well as markers of a metabolic disorder. The so-called fluke test from Amelia’s Dallas lab work had pointed us in the right direction.
Suspecting that Amelia did indeed have an as-yet unnamed metabolic disorder, the doctor put Amelia on a new formula (through her stomach tube) and a vitamin-enzyme-essential fats cocktail that improved her neurology in the first 24 hours she was on it and beyond. He also told us somberly that if he could prove that Amelia had a metabolic disorder, we needed to know that it meant two very difficult things: first, that metabolic disorders are terminal illnesses; second, that once a so-called metabolic kid” starts to deteriorate, the death process happens fast.
Three days before this news, Amelia had turned 10 months old.
Six months later, we took Amelia back to Mayo for a follow-up. She had improved greatly in weight gain and overall health, but she still could not roll over on her own, sit up, crawl, walk, talk, or eat by mouth, and we considered her to be getting good sleep when she could go two or three hours without waking up crying, gagging, or otherwise needing our help. Even still, we were encouraged. We thought the doctor would be, too; but while he was kind, he was reserved in his enthusiasm, reiterating his suspicions.
Before we left during that stay in April 2005, the doctor ordered one final slew of tests, convinced he was chasing a metabolic disorder. A couple of weeks later, he called with the news: although he still could not give Amelia an official diagnosis, more markers had shown up that confirmed, in his mind, that Amelia was, in fact, afflicted with a fat metabolism disorder so rare that it did not yet have a name.
That was a devastating phone call.
After we cried and prayed and picked ourselves back up, though, we realized that, although that doctor was clearly the best in his field, he just might be wrong about Amelia. We made the critical decision then to treat her as if she didn’t have a terminal illness. After all, even the doctor had said that he couldn’t prove that she did.
The next couple of years brought a deepening of our understanding of Jesus as the Great Physician. With no one in the medical community able to offer any ideas as to what to do to make Amelia’s life easier and more fulfilling for her or to help her body catch up with her very bright mind, we learned deeper ways to seek God, who is a God of specifics, morning, noon, and night about every detail of our lives, particularly Amelia’s present and future.
Jehovah Jireh gave us the courage and direction to veer away from traditional medical approaches – we had exhausted those – and, in order to improve Amelia’s situation, seek complementary therapies that we would have snubbed before Amelia was born. And like a tree whose roots reach down deep enough to get to the purest water far below the surface, our faith grew stronger and Amelia blossomed. Of course the God who made her would know exactly what she needed. Of course. Jehovah Jireh.
The God who made Amelia made her uniquely her. She was every bit a little girl, not just a special-needs child who depended on us for literally every practical detail of her life. No, she had a distinctive personality with likes and dislikes, favorite toys and special places. She only said four words in her entire life, but Amelia knew how to make her opinions known. She enjoyed long car rides, especially in the rain, and she made up games with favorite people, like the “patting game” or copycat laughing while she was swinging. Wild about music and having us sing to her, Amelia would get fussy when she was in the swing if we actually talked to someone nearby instead of singing her Sam Cooke songs and VBS tunes. And then, just as soon as we would “get it in gear” – no doubt what she was thinking – she would go back to smiling that beautiful smile and laughing.
We do not watch much television in our house, but Amelia’s feedings were easier for her if she had something to watch, either a book someone was reading to her or something on the screen. She lit up like a Christmas tree when she would sit next to her Daddy watching NASCAR races or, better yet, the Dallas Cowboys. When they would cut to commercial, she registered her objections, and when the home team came back out on the field, she made her “aack-aack” happy noise and looked around at us to make sure we saw that everything was all right again.
Brian has sweetly said of me that I understood Amelia better than anyone else and was her voice to the world; I hope so. I think that Brian was the dearest father to Amelia – here again, Jehovah Jireh – that she could have had; Amelia certainly seemed to agree. She glowed every time he came home from work. One night in the last few months of her life, Brian was carrying Amelia back to her bed, and Amelia was resting her head on her Daddy’s shoulder, rubbing it with her hand in this precious scratching motion she did to those she really loved. Brian told her, “Daddy doesn’t have to do work tomorrow; I get to stay home with you and have fun all over again!” Amelia almost burst Brian’s eardrum with the explosive “aack-aack” noise she made. A priceless memory from Jehovah Jireh.
From the early days of Amelia’s life, books and music played central roles. Dr. Seuss was her favorite, giving a special nod to And To Think That I Saw It On Mulberry Street and The Cat in the Hat. Brian and I, and probably my mother, a.k.a. Gramma, can still recite those from memory. Amelia would let us know when to turn each page, always feeling proud of letting a grown-up know when to do something. My father, a.k.a. Big Daddy, came over every afternoon to help Amelia in her stander, a bulky medical contraption that serves to increase bone density and allowed Amelia the sensation of standing upright. Big Daddy would help her during her hour-long stander times, reading to her and singing her love songs from the ‘40s. Jehovah Jireh.
Amelia will always be a huge part of our lives, and every place we go and everything we see for the rest of our lives will remind us of her in some way. Her sweet smile and beautiful curly hair drew compliments everywhere she went, her glasses were quintessential Amelia, and her happy disposition in spite of her challenges awed everyone who knew her history. How were we fortunate enough to be her parents? Jehovah Jireh.
There’s an old saying that it’s not the size of the dog in the fight; it’s the size of the fight in the dog. Our Amelia had Great Dane-sized power in a Chihuahua-sized body. That was no accident. There are no accidents in God’s planning. In remarkable evidence of the mystery of God’s ways, at the same time that every cell in Amelia’s body was fraught with an incurable and unknown disorder, God had also woven into every fiber of Amelia’s being a fight and determination that would contribute mightily to her survival and her story. On five separate, definable occasions during her first year of life, Amelia should not have survived. And metabolic kids do not tend to live even one-fifth as long as she did. But she and the Almighty had other plans. Jehovah Jireh.
Among God’s provisions for which we are most thankful was a physical therapy group that not only offered multiple therapies to Amelia that opened her world and eased her burdens but also afforded her two of the most enriched friendships of her life, one with her craniosacral therapist, the other with her physical therapist, Lindsey Wilson. Amelia had been to two other physical therapists whose widely-used approach that almost broke her spirit is too traumatizing for me to review. Enter Lindsey, physical therapist extraordinaire who saw Amelia not as a child to be fixed but as a unique being, created and loved by God, with a spirit and will to live that was unmatched. And Amelia rewarded her for it.
In the 18 months of physical therapy Amelia had with Lindsey, she developed the greatest non-family relationship of her life. We worked really hard in therapy, no one harder than Amelia. With Lindsey’s guidance, Amelia flourished. She learned to sit up from a completely flat position, actually forcing herself to do up to 100 sit-ups at a time, a feat that is a near physiological impossibility, even for most healthy 6-year-olds! If you ask Lindsey how Amelia was able to do that, she would tell you that it was sheer willpower; and then she would laugh while remembering that even after exhausting herself, Amelia would be upset when, in an effort to protect her body, we made her quit for the day. In fact, before her health began to deteriorate drastically in late March 2008, Amelia learned by stubborn determination how to roll over, sit up on her own, stand without help for 30 seconds at a time, and – our greatest physical accomplishment – walk with minimal assistance.
Many young families watched in awe as Amelia walked with my help into her Sunday School class at HPPC. It did not matter to Amelia that the other children ran past her while she could barely take steps event with adult help; she felt enormous pride at her accomplishment and would thump her chest and make what we call her “happy noises” in celebration. It was enough to make a grown-up cry.
And cry with pride and joy we all did. God provided Amelia with Sunday school teachers and Co-op teachers – how proud she was to go into Co-op – who saw in her not a child with disabilities but a matchless individual made in Christ’s image. Jehovah Jireh.
God-directed dietary changes also improved Amelia neurologically, and every day Amelia and our entire family were lifted in prayer, providing us the emotional nourishment we needed – and sometimes still need – from the marathon-nature of her circumstances.
Through the miracle of adoption, God provided Amelia with a little sister named Mariana who was, and still is, one of Amelia’s biggest fans. Mariana achieved early developmental milestones ahead of schedule and was practically born talking; so when Amelia would do her daily walking practice at home in the last seven months of her life, Mariana would run to the other end of the room, turn to look at Amelia, clap with her unbridled enthusiasm, and shout, “Go, Sister! Yea, Sister! You can walk, Sister!”
Out of nowhere, God provided Amelia and Mariana, through the miracle of a surprise pregnancy, a little brother named Brent. A wonderful boy in his own right, Brent kept precious Mariana from being an only child when her beloved sister died. Exactly 12 and a half months apart, Mariana and Brent are now best friends.
Indeed, perhaps the most stunning provision of all was that God placed Amelia into a family that loved her beyond expression and filled her life, even in the midst of great challenge, with music, love, laughter, and a belief in the power of the Trinity: Parents who would not accept negative answers and instead gave Amelia unconditional love and every possible life experience and therapy to enrich her world, who claimed the Luke 1:37 promise that “nothing will be impossible with God”; younger siblings who treated Amelia as if she were perfect; her beloved Gramma and Big Daddy who put their lives on hold to pour themselves into Amelia, her development, and especially her emotional security; uncles, aunts, and cousins who celebrated the accomplishments and mourned the setbacks. Every day of Amelia’s life, she knew love … not just the emotion that makes people feel good to talk about, but the kind of love that is a verb before it is a noun. Jehovah Jireh.
When Amelia was dying, I remembered something I had read in college about children who know they are dying. The article had talked about how all children see love as a zero-sum game, meaning that they think that if they are gone, their parents can fill the hole of their absence by having another child. It went on to explain that that is why terminal children, in an effort to provide for their parents’ emotional needs, often ask their folks to have another baby after they are gone, or even before they die.
Since Amelia could not verbalize those thoughts if indeed she was having them, I asked her in early April if she wanted us to have another baby after she went to Heaven. “Do you want to go to Heaven to help God pick out a baby for Mama and Daddy?” She had very little energy as she was in the process of starving to death, which is how metabolism disorders ultimately claim their victims, but she rubbed my left shoulder and said a vigorous “uh-HUH!” Each time in the days that followed, whether I asked her or Brian did, Amelia gave the same answer. And so we decided – and told Amelia – that we would adopt another child. She was so happy.
Other conversations with her were harder. We had come to the heart-breaking realization that the only merciful thing at that point was to wish for our baby girl to leave our side and be with her Father in Heaven. Amelia had never gone anywhere without us before, but we had to convince her that it would be OK this one time to leave us behind. We had to be brave in front of her and do our best to read her thoughts so that she would have her emotional needs met by the words we uttered to her – and so she would not be afraid. We hurt for her physical pain, and we were crushed for and by her emotional pain and confusion. She ended up showing signs of that peace that passes understanding, but the enormity of the emotions involved was crushing. And we had to figure out how to explain to Mariana and Brent that they soon would not be seeing their beloved big sister any more but that “Sister,” as they call her, would be OK. How did we do that without collapsing? Jehovah Jireh.
April 10, 2008, boasted the kind of weather we call “Amelia weather” because it was her favorite: bright blue cloudless Texas skies and a cool, crisp breeze. Even in her depleted, fragile state, Amelia had wanted to be carried around out front for a while; then she let us know that she wanted to rest alone. We sang her her favorite songs as we carried her back to her bed and told her how very much we loved her. We reassured her once more that it was OK for her to go the one place where she would no longer suffer.
We kissed Amelia and let her rest in her room with soft music playing and the blinds partway up so that she could look out and see the stately robin in the tree outside her window. That robin lived outside Amelia’s room that early April. We had never seen it prior to that, and we have not seen it since April 10, 2008, but we saw it in each of our little girl’s final days.
Half an hour later, in the middle of the afternoon, we went to check on Amelia. Her body was still and peaceful, but it was just her body by then. Her soul – the real Amelia – had gone to be in Paradise with her Creator who, in ways beyond my understanding, loves Amelia even more than her father and I do. I looked out the window and saw that the robin had flown away.
As Brian wrote recently, “God used Amelia to make the world a better place. She taught people that life is precious, that we cannot take basic things for granted, that prayer works, that God is in the details, that God gives guidance to those who seek Him, that God comforts the grieving, that a church full of believers putting faith into action makes a lasting difference in the lives of people who are struggling, and that we should never give up, no matter the odds. The people who knew Amelia well are better people for having been around her – better parents, better siblings, better teachers.” Jehovah Jireh.
Two weeks before what would have been Amelia’s fifth birthday, we received a call that a birthmother in California had chosen us, and in the early morning hours on April 24, 2009, exactly two weeks after Amelia’s first heavenly birthday, Blake William Robison was born. He is a mellow, adoring child whose bright eyes and infectious smile remind us daily of the gift of life, the gift of love. When Blake was two days old, we had him on the beach in California. Psalm 30:5b kept running through my mind: “Weeping may last for the night, but a shout of joy comes in the morning.”
In Blake and in the whole process of birth we see once again that life trumps death, that babies are indeed God’s opinion that the world should go on. The death of a child is not something a parent gets over; it is something to get through. And the realization that the world does indeed go on is, at some points during grief, utterly debilitating, and at other points, remarkably freeing.
In the 17 months since Amelia’s death, Brian and I find that our Amelia and our precious Jehovah Jireh continue to teach us to look to the Almighty, lean on the Almighty, praise the Almighty, and see His face and His work everywhere.
We worship a God who believes in renewal of soul and hope. What will we do in the future when we are driven to our knees by a grief swoon or a heartbreak over someone else’s pain or some other challenge? How will we know how to provide for others? In the words of the late songwriter Rich Mullins, “I will seek You in the morning, and I will learn to walk in Your ways, and step by step You’ll lead me and I will follow You all of my days.” We will stand on our feet with the sure and saving conviction that God is there, that He sees our need, and that He will meet it. Jehovah Jireh.
Indeed, Jehovah Jireh.