I miss Mallorie so much today, but the fact that it's been one year doesn't mean I miss her any more today than any other day. There is just no day when the missing isn't profound and doesn't catch in my throat. My friend Linda, who has also lost a child, emailed me today and said this:
Bradley passed away July 9, 2009. It is STILL so hard for me. I've realized that this is not something I'm just going to "get over" - a part of me is gone and I'm different now.
She tried to tell me this almost a year ago, that it might be a little less sharp, but the pain would never really go away, and although I suspected she was telling the truth, I wondered why she was sharing that with me. But her words rang true, and she was very careful with her words, because she said she knew I was so fragile and that almost anything said at that time could be painful, but still, she needed me to know I was never alone, and she was always there. Today, the only, and I mean ONLY (though I find it so hard to write this down) thing I "might" just be able to call a blessing about having lived through the loss of my child is that today I can read something like what my friend wrote and weep, because I know what Linda is saying. A part of her is gone, and she is not the same Linda I went to nursing school with. Do I wish I were ignorant of this pain? YES.
It is impossible to make this pain make any sense in my own mind, because every time I try to give myself a reason why there could possibly be some purpose or blessing (for someone else) in this loss, my heart breaks, and the reasons I come up with seem limp. Just being able to tell myself that I would not have felt able to drive out to see Cathy at the hospital if Mallorie were still here is simply not enough to ease my heart. It doesn't feel like a good enough reason at all, but this endless exercise seems to be what my heart feels it needs to do. To find some meaning for the pain. Because at least I've discovered this: the only thing that helps (me) at all is to reach out to someone else suffering, because finally, I understand a little bit. I understand the pain Cathy feels as she tries to hold onto hope when daily the news from the doctors is grim, because they can't speak hope aloud in that room because they believe it is wrong to give a family "false hope." Annabel is in the very same bed where Mallorie began her struggle, on February 11, 2010. Cathy is sleep deprived, probably not able to eat much, and so, so afraid, even though she knows that God has always loved Annabel and shown His amazing power of healing through her. Because she knows that sometimes God simply says that what we are asking for is not the best right now. It's that part that the enemy uses all the time to tear at my heart, because it works, now.
But Cathy and I also know the true part is that He has ALWAYS loved Annabel (and Mallorie). And because He gave those girls to us, we know He loves US. That doesn't ever, ever change. It's what I cling to, because I can never be tricked into believing that He hasn't always adored Mallorie. I (thankfully) saw Him sustain her in far too many situations to forget, when only He was able to make the predictions a lie. So if one example of His care and His power can temporarily seem to be explained away by the enemy, there is no way my heart or my mind can be manipulated to forget all those other times.
When she was born with a large opening in her spine that was leaking spinal fluid, and did not die within moments (as happened to another child whose mom I met). When she was not given immediate surgery, as we were believing would happen after having her transferred to a hospital a couple of hours away specifically FOR that surgery, and no plans were being made to do anything for her beyond "comfort measures" (whatever those were), yet He sustained her, and temporarily stopped all apnea episodes. When her neurosurgeon months later told us he felt she "could handle the increasing head size," so he saw no reason to give her a shunt (the very same shunt he had told us when she was not yet one day old that she would likely eventually need, so maybe we shouldn't bother closing her back, to spare us and her all of the inevitable complications that usually arise). When we all forgot to notice how many days had passed without her being able to be fed after she had a complication from a surgery, and so she survived on some simple IV fluids and the power of the God who created her. When she stopped breathing in my arms and I begged God to not take her from me, especially not while I was alone and at home, and He answered my prayer with a resounding yes.
He sustained her. Good medical care and breastmilk and all the quirky supplements in the world were not enough to explain how she thrived. He wanted her here, and gave me dreams before she was born to show me how she would be born alive, and survive, but I couldn't dare to believe them, after the things the perinatologist told me about how she would NOT survive and that no doctor would touch her. So He showed me slowly, patiently, example by example, that He was entirely capable of doing the unexpected and even the impossible, because He wanted her here, with us. He loves her, and always has, with a crazy and unimaginable kind of love.
So today, even though my heart struggles with the fact that sometimes God says, "No," to our pleadings, I also know that usually He loves us with a "Yes." And only sometimes, with a "no," and those times are only because He has something better. I don't feel that truth every day, because not having Mallorie right here in my arms does NOT feel like "something better." But all those other yeses in Mallorie's life history remind me that my feelings aren't going to always be a reflection of what is true, because what is true is that God loves Mallorie, and because He gave her to my family, HE LOVES MY FAMILY in a crazy kind of way that we didn't earn and didn't deserve. So I know my God's character, and I know He loves. And loves to heal, and to give amazing gifts.
So today, I am praying for Annabel to be healed and to come back to her home, fully recovered, and Cathy must know I also am praying she will be able to tolerate some of that good home-cultured kefir that helped to heal Mallorie's gut. :)
And I am praying for John's neck, that he will be able to sleep and that he won't need surgery.
And I am praying that God will place every person and every thing in place so that one tiny little orphan in another country, who appears to need a shunt as badly and probably even more badly than Mallorie ever did, will get that procedure quickly. I only know her by her nickname, Karina, given to her by Reece's Rainbow when she was still available for adoption. The adoption laws in her country have changed, and now she appears to be unavailable to adopt until age 5, and her hydrocephalus is progressing, and she appears forgotten, because now no one can even fundraise on the RR site for her adoption ... because she's not adoptable, right? But I know better.
And I'm asking Him to continue to heal my friend Linda's heart. And I am asking Him to heal me, too, both physically and emotionally.
I know there is someone who loves my friend Cathy's little girl, so very much, and created her exactly as she is, so we could understand that "special needs" truly does mean special, ... extraordinarily special, and doesn't want her to suffer, or her mommy to suffer ... unless He has a plan for even that. Who loves my husband more than he will ever think he deserves, and is proud of who he is, and doesn't want him to suffer or to have a surgery ... unless He has a plan for even that. Who wants to heal "Karina," who right now seems to be forgotten, but He hasn't let me forget her, and I believe He can do something unexpected, and maybe His plan is to bless His church by giving them a chance to play a role. Who can and will heal me if it's part of His plan, to allow me to continue to fulfill the purposes He has for my life. And who loves my friend, Linda, and will continue to show her how very much He does. So I continue to ask him for these sorts of things, because I know Him; He knew exactly how my youngest daughter's body worked and she not only survived, but she thrived. And right now He has her safely with Him, and I think He usually says Yes, but He always loves us in the best way. And even when we don't see the purpose, and beg Him to spare us this, He will sometimes give us the gift of finally understanding another's suffering, because we experience something like it.
So I hate to write this down, but I will. I am thankful that He decided I needed to understand the pain that a mother experiences when she loses a child, and that it doesn't get better after a year (or more). That He continues to work to heal the wound, but it is a wound that changes you completely. So I know better how to pray, ... because I know a God who hears me.
It takes a village to keep a special needs parent from jumping off the roof. (Christine Moers)
I got a call this morning from someone I know whose little girl is back in the hospital, a couple of hours from home, and it reminded me of the way life is for families of medically fragile children. We, of course, would give anything to have that life back, if it meant Mallorie was here with us, but still it is a life with some very hard times, and we were carried along by so many loved ones, medical professionals, and generous strangers.
Maybe you know someone today who could use encouragement, and God's touch using your hands.
Annabel is in the hospital where she can get IV antibiotics. Cathy mentioned strep, fever, vomiting, being "out of it."
I know Cathy was up all night in the ER last night and is really behind on sleep. But Dr. B was the one who admitted Annabel, sweet Ida got 2 IV's, and Telecia answered the phone when I tried to call Annabel's room. If I understood Cathy correctly, even the ER nurse who usually cared for Mallorie and always got a scalp IV for her, was Annabel's nurse in the ER last night. Annabel and Cathy are surrounded with love, with people who know them. It's not the same as being at home, but it's better than being 2 hours away. Her sweet husband was able to bring her something from Subway, and everyone there knows Cathy and her girl. It's a good place to be.
Please pray that Annabel responds quickly to the antibiotics, and that Cathy manages to get some sleep. And since sometimes mothers second-guess every decision they ever make, I'm praying that people say things to her like Dr. B did .... "Cathy, she got sick. You can't prevent that."
Tonight I came to Mallorie's blog to look for updates from other moms on their babies, and for updates on those who have lost babies. I only know a couple of the moms I've linked to in "real" life, but the others have become real to me, too, because of the things we share. We've been chosen by God to love babies who some people have problems accepting, and we all are so grateful for this. First, because we have learned that we were wrong to pray for only healthy babies (but we didn't know any better), and also because we all realize at one point or another that we have been given the chance to love babies who might not even have been allowed to be born on their own terms, if they had been given to another family. We are grateful that we had the chance to give them their lives, however long or short they might be. And to love them and be loved in return.
Because some of them have lost their babies, as I have, they share things about their grief journeys that I feel, but just can't put into words, and reading them helps me. Or their babies are alive, and they celebrate small gains the way I always did, and I get that. I am grateful to see in their words, the passion they have about their "special" daughters and sons. Babies whose very lives fill their parents' and siblings' hearts with love, but babies who some very educated people have spoken doubtfully about. Even unkindly. Babies who have had very grim predictions pronounced over their beds, and documented in their medical charts.
Babies who have been created by a God who does not make mistakes when he forms His people, no matter what is written down anywhere else.
I use the sidebar mostly to check on blogs, and I really need to update that sometime. I don't have the energy for keeping up with reading these much, and while Mallorie was with me, I didn't either - and also didn't usually feel that I had the time. But I'm glad those blogs are there, because sometimes I need to find my way to these stories, to learn that I need to pray for an upcoming surgery, or a birth, or maybe I think I have a suggestion (not lately) that could help. Or I just need to read the words of someone who knows what I feel. Carley had sent me the link to her post, "100 things I am grateful for," and I wanted to write something like that, too. I have more than 100 things. My list is never-ending, but I just can't complete anything I sit down to write, so instead I just went to read, and I saw this: http://iseeloveblog.blogspot.com/2010/11/renewed-thanks.html, posted by the mom of a beautiful little girl named Lily, who happens to have Trisomy 18, one of the genetic conditions that Mallorie might have had, though we never got the testing to tell if she did. I had already heard about Jedediah, the little boy that Lily's mom posted about, because his mom belongs to the Trisomy 13 parent group I belong to, and she had sent the link to his blog. The post Jill linked to broke my heart, though. Jedidiah's short life was filled with too many hours of fighting on the part of his parents.
We never got genetic testing for Mallorie, because Dr. R, a specially trained doctor who did Mallorie's in-depth ultrasound, told us that he was sure she had either Trisomy 13 or 18, and if she did, "No one will touch her." I will always be grateful to him for telling us this, because it was echoed later on (same day) by a local mom who had lost 2 babies. One within moments of birth from a burst sac on his back (he had spina bifida, just as Mallorie did), and the other after 18 months, because he had holoprosencephaly AND spina bifida. Neither of those caused his death, because mom chose a c-section when she learned the second boy also had spina bifida, and she wanted to prevent the back from opening, and she had to leave her OB and find another one willing to do a c-section for her, and that was no easy search. But when they requested surgery on his back, the doctors at the very same "children's hospital" Mallorie was transferred to for the very same surgery in her first day of life, refused to do anything for him. It took months before they found another hospital in Dallas where a doctor finally agreed to do the surgery, which was a success.
So God let us know very clearly what we would be up against, long before Mallorie's birth, and I told our pediatrician we expected to have to go to Dallas for surgery on her back, if our baby lived. And I said I did NOT want genetic testing. Knowing Dr. B did want testing - she always said, "Knowledge is power," - I added that we could always get it later, but for now, no. She didn't argue with me. None of us had a lot of conviction we would be lucky enough to have Mallorie for very long, but we NEVER had to argue with Dr. B about giving Mallorie a chance. About a month before the adjusted due date (I am certain Mallorie was actually born a couple of weeks late), Dr. B asked us for a birth plan. I had read online birth plans, and had even sent her a link to a sample one I had found online for a baby named Abigail, who had Trisomy 18. But as we got closer to delivery (which the "books" told Dr. B could be a month early), and Dr. B wanted us to draft our own birth plan, I just couldn't, so I tried to ignore the question. John and I had ideas but we couldn't articulate them to each other, much less write them down. Well, I guess I couldn't write them down. John was much better at it, if I'm honest. But I didn't want to even meet with her, because it felt so final. And, what if we said one thing, and things looked very different to us at birth? I didn't want us to be held to something that we changed our minds about. I had never had any experience with anything like this before, but I had a very strong feeling that writing the "wrong thing" down could be dangerous for an unborn baby. Dr. Brown reassured us that she only needed to have a very clear understanding of what our wishes were, so that she could honor them. That she would be with us the entire time, and would never dream of not allowing us to change our minds on anything, but she just needed somewhere to start, and to be able to tell the nursing staff and the NICU doctor what our wishes were, so there would not be any confusion. So with her help, she wrote down what she got out of us the day we sat in her office at lunchtime. Our plan included oxygen if needed. IV. Rescusitation and intubation if needed. Because I told her, we don't know, none of us know until she is here. (I thought she was a girl, but no one could ever tell us for sure.) Let's wait until we see HER, to make our decisions. Let's find out what there is to find out, before we try to guess if she has a chance to live or not. We can always change our minds if it looks like she has no chance of survival, and it can be a very compassionate way to let her go. I knew that being intubated would mean she'd get some sort of sedation, and that didn't sound like "suffering" to me. I'd seen babies on vents. Being on a vent is not a terrible thing and may not need to be permanent, but not doing anything - if it's needed - before we knew anything, well that would mean no chance at all. She might need only very small bits of help to survive, so giving her the assistance she needed at birth would give her a chance to get the help. It would also mean we had the time to really understand her, to see how she did after delivery. Because before birth, she was doing just fine.
This is not how it was for Jedidiah's parents, and it is not how it has been for many other babies like him. But Dr. Brown had been praying for Mallorie before she even met her. She said that she had trouble falling asleep the night before the labor induction, until she gave the situation over to God. She had told us as soon as we told her about the ultrasound, that she was our "instrument." She would be there the entire time at delivery, or not, whatever we wanted. She went into that delivery room after asking God to make things clear to her, so she didn't have to try to "make" decisions or to guide us to make decisions. That it would be clear. And God answered that prayer for her. Jedidiah's parents requested a cardiology consult. And there was a fight for that. When we had met with Dr. B to write down the "birth plan," I told Dr. B we really wanted the local pediatric cardiologist, a man I know and highly respect, to look at Mallorie's heart, to help us know what it was like, in case there was something so "wrong" about it, that it would tell us that she would probably not survive. We never saw Dr. K, but I know he saw Mallorie's heart very early on, because either Dr. B or the neonatologist gave us the report when they were telling us that they recommended transferring her to the children's hospital for surgery, because her back being open was an immediate threat to her life. I used to remember almost word for word the report he had given them, but it was something like this. That she had several defects, but that many babies have those same defects, and live with them. That they did not look like they would be an immediate threat to her life, and that if she needed surgery for any of them, it wouldn't be right away.
So even when we got so many different stories about her heart in her 2 months she spent in the NICU at the other hospital, I held in my heart the report from Dr. K, that her heart was not the problem. And ultimately, he was right. Her PDA, ASD, and VSD all closed over time, with no surgery needed at all. But I needed the "promises" we got from him, to carry me through those early months. He offered us hope.
Over and over in Mallorie's life, God gave me people who told me truths that I had to hold onto during times of crisis. Another family I met while I was pregnant, after I told them what was seen in the ultrasound, urged me to insist on a c-section. Their child had spina bifida, and the mom had a c-section. They were a little intense about it, and wouldn't hear that I was still waiting on God to tell us what we should do about that. But what they didn't realize, and I realized months later, was that God was giving me His answer in that very visit. Not at all the message they were urging me so strongly to hear, but the message in their child's story, which was that when the mom's uterus was opened in the c-section, the sac on the child's back, where the spinal cord had been protruding through the opening in the spine, had started to deteriorate. They told me there were only strands that shredded when the doctors tried to pick them up, and they were useless for closing the back. The message from God in that visit wasn't the message that family wanted me to hear so desperately. It was this: I will do what I will do. You cannot control this. I am completely in control. I know that was the message, because months later, when Dr. B said out loud in that quiet delivery room, "The meningocele burst," I needed to know that. I couldn't remember it for awhile, but God reminded me later on. Because I had gone into delivery believing that a burst meningocele was a death sentence. That first mom I spoke with on the day of the ultrasound told me that. The 2nd family with the girl with spina bifida tried to tell me that, but it was silly, because there was their girl, alive, cracking us all up with her antics.
So what I have learned is this. Ultimately, what is needed for a baby to live out his or her life, however long it is meant to be, is to be wanted. That might take awhile to get to, if you have been praying as we did, for "just as long as the baby is healthy and there are no problems," and then you get results of an ultrasound or other testing that say there are problems. But in time, you can arrive there, to be ready to love YOUR child, the child God chose for you. And what else is needed is to be offered what would be offered for any other baby, if there are problems. Maybe that is oxygen. Maybe not. Maybe a feeding tube, if feeding isn't successful. Maybe not. I don't mean that I or anyone else can know what will be necessary or what should be provided, just that simple interventions should be offered if the family wishes. Just as they would be for any other child. The neurosurgeon told us the day after Mallorie's birth, when we asked WHY her back hadn't been closed and when would it be closed, that they were waiting to speak with us. That they felt we "didn't realize what we were asking them to do," that he didn't think we understood that if they closed her back, she might later have hydrocephalus. Well, sure. I had dreamed she had hydrocephalus near the end of the pregnancy, a very clear dream of her. The ultrasound we had right afterward confirmed that she had it. So if it was not a problem right now, what with all the SPINAL FLUID dripping out, it still was reasonable to think it would happen later, when she had the spine closed. He said, "Well, if she does have hydrocephalus, you would have to decide whether or not have a shunt placed to drain off the extra fluid in her brain." "So then we would want you to put in a shunt." He said, "Well, I don't think you undedrstand. If we do that, then she would have to be monitored for the rest of her life for shunt malfunctions, and infections. She might need other surgeries."
I remember feeling that I was talking to an insane person, and it sent a chill down my spine. How do you reason with insanity? This was a neurosurgeon, who did these procedures day in and day out. Repaired meningoceles. Put in shunts. Did shunt testing. Repaired or replaced them as needed. Why was he talking as if these were outrageous requests for a baby, when NOT closing her back was putting her at risk for infection going to her brain, and death? I wanted to ask him, but words failed me as I choked back tears of frustration, to do for her what he would do for any other baby he found lying, abandoned in the street, with a hole in her back. Wouldn't he pick her up and rush her to surgery to close her back? What was the resistance?
So this is sad, but I wish I could tell everyone who knows they will give birth to a baby for whom dire predictions are made, to write down a birth plan that says ALL life-saving interventions are requested, and to get the doctors who will be there to sign it. There is no risk that the parents will be "held" to THAT plan, if things look pretty bad at birth, and their hearts tell them that they should change the plan. That many doctors and nurses will be GLADLY willing to withhold care at any point, if the parents request it. That likely, there will be medical personnel falling over themselves to get the chance to speak great predictions of death over their baby, and the real fight will be to hold onto hope, and to try to discern if the grim predictions are true, or only coming from outdated medical textbooks. Because the truth is, even if they choose such things as oxygen if needed, IV if needed, NG tube for feedings if needed, and other such minimal interventions for problems encountered at birth, there may still be resistance. There may be a fight.
But for one very lucky family in Beaumont, in February 2007, there was a different story. A neonatologist and pediatric cardiologist were waiting for the birth of a special baby. The nursing staff were ready. Extra nurses gathered in the room when the time came close, and one knew how to comfort, because she herself had a girl with Down Syndrome. Another had lost a baby either before or soon after birth. Friends and siblings gathered in a nearby room, praying. An obstetrician lovingly held out her hands to receive the gift God chose for the family. She handed the little GIRL to the hands of the pediatrician who had moments before been holding mom's leg for pushing. The pediatrician looked in the little girl's eyes, knew her parents wanted her to be called Mallorie if she was a girl, and Mallorie looked back at her and told her, "I'm here for the long haul, chick."
And I am so grateful. I have more than 100 things on my list. These were just the beginning.
It doesn't feel like it's very often that I stumble on something that can say JUST what I am thinking or feeling. I have been thinking all day about Mallorie, and her beauty, and how impossible it is to explain the phrase running through my mind, the one that's been running through my mind since they day I met her. Image of God. She came to us, perfectly meant to be her. Exactly her. And created in the image of God.
We felt "right" in some choices we made about surgeries or treatments that we believed would help her health, and not change her essence, but in our family, we all admitted to having strong reservations about some things ... like letting her have cleft palate and cleft lip surgeries. If somehow we could have done just palate, I think we'd really have struggled there, because the lip didn't feel like the issue, anyway, the thing that put her at risk for sinus and ear infections, meningitis. But after the first surgery, that beautiful, kissable lip
was changed, so stopping at that point wasn't really sensible. So we continued. Even though she smiled so broadly that she split the first lip adhesion apart within a few weeks!
So she had to have it redone, entirely, 3 months later. That's a whole other story.
Created in the image of God, so she somehow, even with her differentnesses, was a reflection of the same God that the more "regular" people reflected, who expresses Himself through humans in a way that is unique from what He does with His other creations. Being created in God's image means a person has value that doesn't depend on anything they can do or provide, but just because they contain God's image. For some reason, in order to show us who He was through humanity, God created a beautiful little girl with 9 fingers and the kind of arms that made an orthopedic surgeon feel really compelled to suggest straightening. Maybe Mallorie's uniquenesses were necessary for her to show us something that no one else could show us about God. Or maybe His image has nothing at all to do with how many fingers we have, or limbs, or ability to walk or ultimately even to smile or talk, since she lost those abilities in February. I honestly don't at all know what it means for us to be created in God's image, since Mallorie was born and I realized that this concept referred to her. But the phrase is running through my mind a lot these days, and today I found an artist who took my breath away. His name is Tim Lowly. And he created an ink drawing (of his daughter, Temma) which he called Imago Dei.
I wish I could do art of my children like this artist can, but at least today I was able to scour the internet for a chance to see more of his work. He seems to understand what it means. I know Illinois isn't as huge as Texas, so someday I hope Jessica will go see this man's work in person, for me. :)
Everyone is asking how I am doing. I don't know how to answer, or how to function, really. Today, I saw a woman I used to work with, years ago, who had retired from working as a unit clerk on the pediatric unit where I used to work. She looked 20 years younger than I remember her looking; retirement is good for her, and I asked what she has been doing to keep busy. She says she can't sit home doing nothing, so she is a foster grandparent, and right on cue, a tiny boy came in and was told to say hi to "Grandma."
Then she asked me if I am still working on pedi. I didn't know how to answer; I don't work there anymore, haven't in a few years. So much has changed, so what do I share? Within a couple of minutes, I blurted out that I had had a baby, with "special needs," and we just lost her 2 weeks ago, and my eyes welled up with tears and I couldn't add anything else. She didn't know what to do, and I suppose we weren't anywhere near close enough for that sort of sharing, and I ordered my son's sandwich and moved on. It wasn't the first time I've done that, shared my deepest part of my heart in the past couple of weeks with someone who was just wrong. I realized that I've read this sort of thing on other blogs, where girls have lost their babies. I just don't remember anyone saying what was the final solution? I am torn, because I don't want to share my broken heart like that with someone who isn't even close to me, but I also feel that not sharing about her is somehow denying that she existed, that she pervades every bit of my consciousness. I don't believe an hour goes by when I am awake that I haven't thought of her at least a dozen times.
I had to go back to work on Tuesday after the funeral on Friday and cremation on Saturday. I wanted to hide in my office and not see anyone all day, but nothing is like that. I realized pretty quickly that people know. Some people I probably have never even met, know. Sometimes it is a sweet blessing that lets me know. One woman on my old floor came to me, hugged me, and just said over and over, "God be with you." Other times, there is an awkwardness, because I'm asked how I am doing, and we all know there is no good answer to that, so I mumble something, smile, thank them for asking, and wish I had a lock on my door and a mail slot, and a fax and printer on my desk.
In my work situation, mostly I have chosen to say nothing at all during conversations with parents who I know already know of my little girl, but the visits are not about me. They are about THEIR child and their medical needs and their worries about upcoming surgeries. So I spend a lot of time at work and other places, pretending that nothing at all has changed in my world, and I’m just a nurse going on with my job. And wishing I could be invisible, or that I could even more, just stay home with my family, holding them when they cry. Not just checking texts that beg me to call so they can talk.
I had a meeting to attend later in the week, and a couple of hours into it, someone began talking about a girl who is in a vegitative state, "and the family just doesn't see it. They keep believing that she will come out of it." I was in a moment of shock, and thought, I know that is what some people thought of us. Thank GOD her parents are like that, and they hold out hope for healing, and refuse to not believe that the God who created their little girl can also heal her. But what the hell is vegitative? Can a human being, created in the image of God, really be called by anyone, "vegitative?" I realized that my heart couldn't take where the discussion might be going, so I grabbed my cell phone to pretend I had some important phone call to make, and it crossed my mind that I don't have an excuse anymore for taking calls in meetings like that, but I had to walk out. I AM that mom, and John IS that dad. We knew and we still know that God knew before He created Mallorie, what her last day on Earth would be like, and He loved us enough to figure out the details to provide us assurance that He was there, He had not forgotten. But even though she is not here with us, and even though He did not heal her brain and return her to full health to live several more years with us, I still know. I know that we were not hoping in vain. Because of Mallorie, I know some of what God is capable of, and when I wasn't sure that I could remember, I asked other parents.
I asked Alicia how long until Gavin responded to them after he had his stroke, and recognized his family. I asked a parent of a child whose son had a very serious meningitis, and was predicted to not survive, but over time (9 months, I believe she told me), he woke up and responded to her, and today he is doing homeschool courses with his mom. I took those stories into my heart, so when the overly persistent resident kept trying to drag me out to LOOK at the CT of Mallorie's brain in May, I didn't care. When one of the stream of neurologists, just meeting me for the first time, stood in the doorway to Mallorie's PICU room one day and told me that he "didn't think we would ever get control of her seizures," I gave him a tired smile and told him that I had more optimism for Mallorie than some of them seemed to, because I knew other children. I was willing to wait for her to heal, before I really worried that way. And what I probably didn't say was that Mallorie never really lived her life by predictions.
But now, I have to go to work, and sit in a meeting where someone talks about a vegitative state, and someone else says in a role play, "Are you retarded?"
Mallorie has changed me. Before Mallorie, I had already been sensitive to words like the R -word and some other pretty ugly words used to describe human beings, but back then, I just saw people who persisted in using those sorts of words as uneducated. I felt sorry for them, for their ignorance, and looked for ways to educate them without making them feel as foolish as they sounded. Because they didn’t know, I assumed. At least until they persisted after I’d educated them. :) But now, those sorts of words pierce me to the heart. They didn't while Mallorie was alive, really, because I refused to own any such definitions for her. Mal's kidney specialist surely thought I was a nut the day she asked me if Mallorie had any delays, and I said, well, how would we know? She's a baby, right? She seems just like a baby to me. Let's give her a chance. I refused to have the Early Childhood crew do any "tests" on her, because heck, I have heard what people say it feels like to have someone spell out in months exactly HOW delayed their precious child was supposed to be (even when the child had physical disabilities that prevented them from responding the way another child might, so the testing, itself, was flawed). I had looked at the sorts of things she'd be tested on, and figured if she couldn't use her hands to grasp, then how in the world could she "pass" on a skill that required she be able to do just that task? So we chose the no-testing route.
But now, things are different. Now, I will accept if she had an actual chromosomal difference, because I accept all that is/was Mallorie, gladly. Maybe it was an extra chromosome that made her so adorable, so cuddly, so joyful. The "denial" that I'm sure it looked like I had was never an unwillingness to accept her limitations or embrace every inch of who she was. We LOVED and still love the uniqueness that came along with her being exactly her. I only denied those labels out loud, and refused to go blindly along with others giving her labels. Initially, it was because she wasn’t supposed to live long after birth, and I wanted people to know her as a beautiful little GIRL by the name of Mallorie Rose, not “that baby with trisomy-13 or Trisomy 18 in Room 313." Pretty quickly, it became a way to prevent anyone from gaining "proof" that they could use against her when deciding about surgeries or other interventions. When the NICU fighting days were over, eventually it became again just wanting them to see HER. To prevent them from limiting her according to what they could see or read about her, instead of waiting to see HER unfolding. If she was "retarded," for lack of a better word, then we just never had to see it before, because as Matthew said recently, she was like any other baby. She had a first smile, a first tooth, a first time she laughed, her first babytalk word, the first time she realized she could see and move her hand, so she could play with it. We never, ever had to define her by those sorts of labels that I suppose are useful for people that need to plan lessons or write up medical visit reports. Because we always intended to homeschool her, just like all of her siblings, I felt she was blissfully free from all those names.
But now that she's gone, God needs to help the people around me who just don't know. In their not-knowing, they are going to say things that they have NO idea could hurt anyone in the room with them. I know now that I must have done things like this, myself. Because I am the queen of saying random things, all the wrong ways, especially when I am stressed, I already recently have heard myself stumbling with saying things all sorts of wrong ways, and had to make apologies, and I'm not even sure what I've done or said wrong, but I can see it in the eyes, that I've stepped on a wound. So I know it's ignorance mixed with innocence, but I don't know how many times I can just look at my hands in my lap and not say anything. Suddenly, these words mean a lot to me, and I want to shake people and say, “Were you looking for a word like ‘silly’ or ‘goofball?’ Because the word you just used is a medical diagnosis, not a funny slur. And someone might be hurt by the way you used that word.” Like me, or my husband, or our children.
I miss Mallorie all the time. So much. And I cry if I say it, every time. Even if I just say it to myself, or write it in a text. I'm grateful, you can't even know how much, to God for thinking of me when He thought of Mallorie. Messed up me, and as precious of a gift as she was for our family. I can never go back to wondering about whether I really make a difference in this world to God. He let me have her, and he sustained her through all those precarious moments and hours and days and weeks and years. He gave us months and months of relaxing in just how medically complex she no longer seemed to be! He let us see her personality blossom. He let us hear the cardiologist's proclamation that her heart was "perfect," after he watched her grow and develop for 3 years. He allowed us to watch how nursing moms who never had met her would be willing to give her milk to help her grow. He let us hear her laughter and baby talk.
There was a time when I said to myself that while I was grateful, because we "got" to have her as a blessing, I felt a little sad that her meaning was "wasted" on the doctors in Houston. Dr. B truly "got" her meaning, as did others like the OB who delivered her (what a beautiful email she wrote to the priest, which he read in her funeral). But by the end of her life, I began to wonder. Sometimes we never realize who or what moment changes our thinking, but we can be changed by an interaction, some words said. It's enough for me to know that she was there for so many months in Houston, so there must have been people she touched even there .... even though some of them had never been able to see her bubbly personality that was so evident before February. It seems impossible that she didn't have a purpose for that time, too.
I miss her so much, but I am so grateful that we kept having kids long enough to get to Mallorie. :) Every one of our children is unique, some more so than others :) .... but Mallorie .... She was so worth the wait.
This was one of her favorite songs. She was on my lap when I was playing that viral youtube email of the pink glove dance, and realized that she loved moving to its beat. Just like Bob Marley's singing.
Yesterday I learned that she and Bob shared a birthday.
Mallorie died early this morning. Somewhere between 4 and 5 AM. My mom is trying to catch up on sleep (she hasn't slept much in too long) and she doesn't have the heart or energy to post this right now. I'll let her revise or delete this and write her own when she's ready, but I think a lot, if not all, of you would like to know.
She was admitted yesterday morning to our local hospital by Dr. B. (God BLESS her) after an appointment where her blood-oxygen levels were very low. She had pneumonia, it turns out. Again.
Things went down hill this morning. The staff at our hospital worked so hard to get her heart beating, even doing what some would consider "extraordinary measures." They weren't just going to let her die. It was when my mom knew that she was gone that they stopped. No one gave up on her. Not one. The staff loved that sweet baby and treated her like any other. They are such a blessing to us.
I don't even want to count the number of hospitalizations this girl has had since February 11.
I also don't want to count the number of times that we've been told someone has found "the last" IV site for this girl. It's the thing that ate its way into my brain and made me want to drag her home with a PICC line on June 30, even though we had nothing that needed to be given in that IV. So we flushed that line twice a day, checked for blood return, heparinized it, ... until it gave back no blood return, even after we got it de-clotted. So I let it go. I had said all along, that when we lost blood return, I knew the next fever, it would be taken out, because no one would have a way to know if an infection was in the line. And I said at that point we'd be back to just trusting God to find her another vein, ... or grow a new one. And of course, He has done that. Twice. Both of them have lasted as long as they were needed, to everyone's amazement. And two well-loved nurses have not even hesitated to let me cut away some hair so they could try her scalp. He takes good care of her. And apparently, doesn't need much help from me. He has nurses and doctors and respiratory therapists for that.
Every hospitalization, I get to learn something(s) important that we need to be able to care for our girl. This time, one of those things was the importance of positioning and CPT. If I ever wondered if it "really" made a difference, I know better now.
So we know these things.
Mallorie does, too, have IV sites. Or she will when she needs them.
An oral airway is a blessing from God, and in our lives, is superior to a tracheostomy.
Diastat for seizures is amazing. Better than IV Ativan.
There is no end to the peace that comes from telling people she is having a seizure ... and going to get something for it, instead of going off to "discuss" and coming back to say they want to watch it for awhile. I still have my guard up, even after all this time (since June 30), expecting to have to argue for treatment, but no one is arguing. Even when they are still learning what Mallorie's atypical seizures look like, still no one is doubting, and since hers often can bring on respiratory difficulties, this is a blessing.
Tylenol can sometimes stop her from heading into seizures. This I am begrudgingly admitting, because I had to learn it from one of the residents in Houston. I was not very happy the day I had to learn this, but today I am grateful to that resident.
A great pediatrician makes life easier than you would ever think possible. A great pediatric group multiplies that blessing 5 times over (soon to be 6). And a smart neurologist who is able to be reached by phone, and who your awesome pediatrician group happens to like, as well, is a gift from God.
If you are really, really lucky, one of your relatives might decide to become a pediatrician and join Dr. B's group. So when Mallorie turns 21 or whatever magic age she'd have to be when you usually have to find an adult doctor, you can try to pull rank as "family."
Kefir is nothing short of a gift from God. Still learning about this stuff, but it's cured Mallorie of the diarrhea we had been battling since June ... and prevented c-diff, despite all the antibiotics she had to have this time.
Oh, I did get one set of labwork out of that crazy PICC line. One very relaxed blood draw done from the safety and comfort of our bedroom, and dropped off without having to bring Mallorie out in the heat, with results in a few hours. So it was good for that. But I really ought to have learned, by now, that God will come through and really doesn't need my help.
In October 2006, we went for an ultrasound for our fifth child, and were told that our daughter probably had a chromosomal defect. We were urged to get an amniocentesis so that genetic testing could be done, “so the doctors will know what decisions to make.” The specialist told us that he suspected Trisomy 13 or 18, and if he was correct, then no OB would do a c-section because it wouldn’t make a difference for the end outcome. Besides, no surgeon would operate on her back (she had a meningocele – spina bifida), because “Trisomy 18 and 13 are what are called lethal conditions. They are incompatible with life.”
That’s how our story with her began, but it is most certainly not the end. As her amazing pediatrician said about examining her at birth, “I looked into her eyes, and she looked back at me and said, I’m here for the long haul, chick.”