I really hate nearly everything about the end of the school year. The parties, the picnics, the graduations, the salute nights….all of it. This year was particularly bothersome, as my son graduated from eighth grade. Now, I’m not that mom that doesn’t want to see my kids grow up….in fact its the opposite, I enjoy seeing them grow and learn and mature…..except when there are milestones that remind me, just how not normal life is for my sweet children.
Will didn’t want to participate in the graduation ceremony or the end of the year picnic performance. He wanted to attend, but he wanted to sit in the audience with me. I think he didn’t participate because he heard Faith tell me she wasn’t comfortable going…but if Will did the graduation she would go.
The event was at our church and I let Will know, I wanted to sit in the corner. The minute we walked in I found a mom who I love, who is safe…..By safe I mean, she gets it. She herself has had a very serious health crisis. She lives life from the perspective of understanding why even though I have always been known as a very outgoing person, I want to hide in the corner and not make eye contact with anyone. She helped me to feel safe that night.
Now, let me be totally clear, these parents and teachers and kids are all pretty wonderful. They are all loving and caring and they want to be supportive, but the reality is, there’s not much they can say or ask that isn’t hard to answer…..How’s Faith…..Has Faith been at school much this year…..Is she coming to the pool party…..every single question makes me want to close my eyes and walk quickly to my car…..
The reality, this school year has been pretty sucky. She’s been in and out of the hospital all year and we’ve been dealing with some crazy bacteria in her blood that the CDC finally identified and has no idea how she got. In fact, there are no published articles on the bacteria.
It was a bad flu season and we spent most of the winter hiding out to try and keep her healthy….and as far as a pool party, she can’t go to pool parties….though she would love to because she loves to swim. Pools are scary when you have central lines, and her other tubes let water in and we just don’t know if its safe.
Will sat close to me and kept his eyes fixed on me and the stage where the performance was. During the end of the year video he did his best to distract me, I think I had mentioned to him last year it makes me sad that Faith is never in any of the pictures with her classmates….
Then it was over, Will walked me to the car and said, I know that’s hard mom.
That’s it. It’s hard. You have these dreams for your children, you want them to be able to experience life, and have some normalcy, and sometimes its just hard to swallow that this, this is our normal.
Faith’s big event in June isn’t the end of the year parties all of her classmates are going to, her party is Event on Main. Every June since she was kindergarten age she’s been going. Her magical relationship began with Charles Woodson when my friend Tammi asked Faith to participate in an event they were having. The event was to raise money for the Woodson Clinical research fund. We are taking raising money to do life saving research for kids like Faith. As you can imagine we were happy to help.
Our passion to help with this cause is fueled by our desire to make things easier for our daughter, and the other kids who deal with a life that’s harder than they deserve. I remember when we explained to Faith why we were working with the foundation she said, so all these people here want to help cure my disease? She was seven at the time and I remember her looking around the room studying the people that were there, looking at the people who wanted to help, she said to me, I just can’t believe this many people care.
Over the years she’s gotten more and more excited to go. Every year her dad buys her a new dress and this year she’s wearing heels. She’s always excited to see Charles when she’s all dressed up. She recognizes people from the years before. And of course they all talk about how much she’s grown up, they ask her what she’s been up to, and what her plans are for the summer….and they just don’t ask how her health is, and I think its because they know….they know Faith has a chronic illness and they are there to make her life better….she’s like a visual reminder that this child has been dealing with this for as long as they can remember and the cause that they stand behind has a very real face.
For me, it’s different than the school picnic. Here, I like to make eye contact and smile at everyone. I hope that they can see my gratitude. This year when the infectious disease doctors told me there was a bacteria in Faith’s blood and they couldn’t identify it, I realized how every bit of scientific research is so important. I don’t expect to find a way to fix the nerves that don’t work in Faiths body or add nerves where they are missing in her lifetime. I do think we can find a way to keep her healthy without IV medication. And I dream of a day when she has no ostomy bag or central line.
Honestly, I dream most of little things, like her being able to go to a birthday sleepover or swimming in her dads pool. I know that I want life to be easier for her. I want her to stop missing out on normal kid stuff because her body isn’t cooperating.
We are so grateful to have so many people who want to make life easier for kids like Faith. Her team at Mott, Dr. Newman, Jayne, Dr. Kullgren, Scotty, Aamira, Gene, Kristin, and of course Charles.
Charles has done a pretty remarkable thing. He has used his gifts to do so many life changing acts of goodness. It’s funny because when people ask Faith about her friend Charles they go into his football stats and she just smiles…..his football is so secondary to her. His legacy in her eyes is his work with Mott as a motivator and an educator about the need for research and to raise money to fund that research….sure he happens to be one of the greatest football players of all time…..to her he will aways be Charles, her friend that did all he could to make her life easier. The love we have for him is real. The Michigan community is blessed to have him and so are we.
So this Thursday, we will be headed to Main Street in Ann Arbor, to celebrate with 500 of our closest friends…..and we will be raising money for research, research for all the kids, kids like Faith, who miss the school picnics.
I sat at a bar in my little home town of Dexter with two of my oldest and best friends a few weeks ago, its a new place, but really, an old place. It’s been there since we were just middle schoolers. It’s changed names and owners a few times, but it has always been a place, that I felt like home in. Now, that may make it seem like I frequent bars, I do not. And it may make it seem like I am a drinker, I am not. It is just a place, that I have always felt a part of. Until that night, sitting there with two of my best friends, that night I had never felt so out of place and completely alone.
We were surrounded by Dexter people, or people who have now made Dexter their home. People I have known for years now, people who know how I spend my time. But that night there was someone there who said something, something that has stuck with me ever since. He was talking about his former wife, and how she for the most part had cut ties with their mutual friends. I said, well, she’s still friends with me….his response is what I play over and over again in my head…..That’s because she feels sorry for you.
I looked to my left, and noticed my girls were listening, I waited for one of them to chime in……they didn’t. Unfortunately, neither did I. I left shortly later to go home and take care of Faith. I knew that she was the person I could talk to about this, she would make me feel better, because she understands the stupid things that people say, but the thought of telling her made me so sad.
She feels sorry for me…….
The next week, with this conversation fresh in my head Faith and I run into a parent from the school that Will and Faith go to. She knows me from Will and comments that she hasn’t met Faith. She says, in front of Faith, she’s the sick one, right? I ignore the question, introduce Faith and we walk away.
She’s the sick one……
That night Faith and I talked, about when people refer to her as being her illness…..That she wants to be more than the sick kid, that she doesn’t want that to be her definition.
We are in this entirely difficult position, we are definitely confined by the illness she has, and there are moments where it literally seems to control every area of our lives, but in no way, not even for a minute do we let it define who we are.
She is not an illness. She’s not the sick kid.
It’s entirely unrealistic to think that people won’t correlate Faith with being sick, or me with having to care for my sick child. But to let it define us, does who we are such an injustice.
Faith is a self defined, Book Nerd. She loves to read, and she loves art. She loves her dogs, and would rather spend time with her brother than just about anyone. She loves to watch mystery movies, and can often figure out the ending way before I do. She has two best friends, one is a famous football star, who has stuck with her since she was 4, and never once questioned Faith about her disease…..Then there is Addy…..who is more like a sister than a friend. Her cousins are her light and she laughs nearly every minute she’s with them…….and she has a baby brother and sister….that literally make her squeal with joy. She wants to grow up and be like my brothers girlfriend Amanda, her “most favorite person ever.”
Her great-grandfather turned 90 recently and they had a big party for him. When they left, as he always did, he reached into his pocket and pulled out some cash for the kids….Faith took that money to downtown Ann Arbor with her that evening. As we walked by some homeless people, Faith gave her money to one of the young men. The next night we saw that same young man smoking pot on the street with his friends.
One of her friends said, you probably paid for his drugs Faith. Her response reminds me, that while this illness controls so much of what we do, it also has shown us, taught us, a compassion that not many life experiences afford you.
“We don’t know his story. We don’t know why he’s homeless, or why he lives on the streets. People don’t choose this life. Maybe he fought in a war, maybe he has PTSD, maybe he’s sick…..maybe that marijuana is the only thing that will get him through the day today. If so I’m glad I could make life a little easier for him.”
This is my daughter, so Don’t feel sorry for me.
She’s not the sick kid.
I can’t even tell you how long it has been. It was on the 27th of October, lots of years ago, the last time his hand was warm. I was holding it when he started to take his final breaths…..I knew it was happening. I had just told him where everyone was, and that Jamie was asleep on his shoulder. I told him I was there. I reminded him then, how strong I was. He was always so proud of that, a few minutes later he was gone. I kept touching his hand, it was never warm again.
My dad was a kind and giving man, and everyone that knew him would tell you that. He was also brave and strong, or at least it seemed that way. What I’ve come to realize over the last few years is sometimes those of us, like me and my dad who act so strong and brave and independent, are likely just as scared and burdened as those who show their emotions more feely. I like that I am like my dad, but I often in the past few years have had to remind myself that I don’t want to end up where he did, and I would have to figure a way to balance my brave and deal with my worry and stress at the same time.
Most of my brave started out when I was young, I loved hearing him tell people how tough I was. I felt that it made him proud and that was very important to me. I was his girl, in a family of eventually three children, my brothers having an obvious connection with him through working together, or just the fact that by the time my younger brother was growing up, my dad was getting older and softer, I often teased him. Regardless the natural father daughter bond wasn’t exactly easy for us……
Then we met at Murdock.
My Aunt and Uncle were selling some land and Will and Faiths dad and I met dad over there to see if it would work for the home we wanted to build. My dad was basically like, how can you go wrong, it was a beautiful piece of property and it was less than two miles from his home……Funny, I’m sure he had visions of watching his grandchildren grow up so close to him….obviously it was a sure thing in his mind.
What I never realized was how much it would change us. Now as a sports fan we always talked sports, trades, and all about the deer he didn’t shoot that day, but it seemed to be sort of entry level bond. I never really imagined we would be much closer, but Murdock changed all that.
8591 Murdock Drive……We spent eight months building my very own dream home. Dad and I worked on so much of it together. I would spend all day there, meeting with the contractors talking about the home and making sure we never failed any inspections. He was so proud of how efficiently I managed the construction of that home.
I remember staking the house out and dad saying to me, that’s the view out your front door, now that’s a beautiful view. I remember when he built the foundation he decided the garage wasn’t big enough that he went ahead and made it bigger. I remember him teasing me about the huge island in the kitchen was, where we often stood to eat pizza or bbq as we were working. He would often call me with a question and say, meet me at Murdock….it was an amazing eight months that changed us forever.
I remember we dug out the window wells together and I was amazed at how strong he was. I remember near the completion of the house coming in and announcing to him and my father in law that I was pregnant, with Faith ironically.
Everyday I would watch him pull into my driveway and we would talk about the day and what we had gotten done. He always stayed for at least a beer often two. It was the best thing that had ever happened to my dad and me. And I loved that house because of it.
Now, several years later, I have a new job, taking care of my sweet Faith. I really realized almost right away that I couldn’t afford to live in that beautiful home anymore, but I was convinced that I could make it work. I kind of always expected Faith to get better and me to go back to work……life had other plans.
You see, I think its possible, I could have found a way to continue living there. But finding a way, did one thing to me, it made me terribly stressed…..I remember thinking of the irony of the whole situation, and the logical me, said it was time…..honestly it was time way before I was actually able to say the words, its time to sell Murdock.
For maybe fours months before I made the decision I would wake up from a sound sleep in a panic and I would think I was at my childhood home. It was so scary to me. I even talked to a doctor about it, because I felt disoriented when I woke up and that had never happened to me before.
I hadn’t even considered moving to my moms house, my childhood home, until one day, I woke up and out loud asked my dad if that was the message he was sending me…..the ball started rolling that day and its hasn’t happened again.
The house is now for sale. And someone is going to get an absolutely wonderful place. It needs some new flooring, but honestly, I love that home, just as it is……
I am actually ready for it to sell. The amount of stress that will be lifted from my shoulders is exciting to me. I am ready to not have the stress that comes along with being a home owner. The kids love my childhood home, thankfully my dad built this one too and its really big….and it feels like home now.
It’s been a long time since we’ve met at Murdock. After he died I would say out loud to him when I was missing him, I’ll meet you at Murdock. I am grateful for the gift of building that home……I’m pretty sure he’s fine with changing our meeting place, but I will never forget meeting him at Murdock.
I was an All-Star. No, really I was. Third grade t-ball. I was on Mr. Visel’s team and I was picked along with two other players to represent the yellow team. It was the eighties so as you can imagine things were really different. No such thing as equal opportunity. He picked the best three players and I was one of them.
I was also the only girl picked from all twelve teams. I remember hearing people talk about it, but as I am sure you can imagine, I believed I deserved to be there. Just like I deserved to play my position at second base…..but that’s not what happened. You see, Mr. Visel wasn’t the all star coach. It was some other guy and he put me in the game only for the last two innings….and no, he didn’t put me in where I was used to playing….he stuck me in at catcher.
I swear to you I remember turning around and rolling my eyes at my mom. One inning goes by, fairly uneventful. Mind you I got a double when I was up to bat. Then, the last inning of the game. We were leading the other all-star team by one and there was two outs. They had one person on base and the best hitter in Dexter came up to bat.
He immediately swings and hits the ball far into left field. The runner on second base quickly scores. As this, bigger and slower kid rounds second the coach on third looks me right in the eye and waves him home. I am screaming for the relay to get me the ball. The runner sees, its going to be close and he slides…….knowing he’s about to take the only girl on the field out. It’s a dusty mess, I felt dirt in my mouth and was pretty sure I had a bloody lip….
But, just as fast as you can imagine, I stood up and with the biggest smile on my face (as my late grandfather, told everyone he ever met) I showed the umpire that I was still holding that ball in my hand, making the runner out and our team the All-Star champions.
I believe that moment was one that to this day reminds me, when someone thinks they can knock me down, I’ve got a big smile that says otherwise. We headed off to the Dexter Dairy Queen where we stood in line forever and laughed and celebrated at every honking car that passed.
Tonight, we passed that same Dairy Queen with lines down the street of ball teams and their families. I looked it my rear-view mirror at Faith to see if she noticed the celebrations happening….
I try hard not to imagine life with a healthy Faith. A Faith born with a working digestive system. A Faith that doesn’t have to fight for healthy days. But sometimes, like today, when I see that, up in my face like that its impossible. I hate the things she has to go through, but I think even more I hate what she has to miss out on.
We drive home in silence, and Faith asks me if I have a headache….that’s often what I say when really its heartache I am feeling. There are no good words to tell her, I can’t say I am grieving the loss of you having a normal life, because, this life is her normal,
But I can’t stop myself from going there…..I was an athletic kid, and so was her dad. We live in a house consumed by sports….I imagine sometimes what it would be like if things were different. Sometimes when I hear people complaining about sports schedules I want to scream at them…..how lucky you are to be able to have this problem. I would love to see my daughter feel well enough to want to play a sport. I imagine her dad and my Dennis both giving her pointers on her swing….and me laughing at them and reminding them I was the all-star.
Its this imagining stuff that feels as if it could break your heart.
I worry that her brother chooses not to get involved for the same reasons. Because he, understands how it would feel to her to be the only one. He’s a special child. When I worry at times that I am not strong enough, I think of his strength as her big brother and I know for certain this is all part of gods best plan.
It still moves me to frozen….that’s what I call it. When I can’t talk, I can’t move, I can’t catch my breath.
I envy the moms talking on facebook about how they plan to keep their uniforms white….I read all these tips so I can use them, not on her uniform but on her favorite outfits that get stained from malfunctioning colostomy bags.
Tonight, while doing a treatment on her that is pretty painful I thought, funny, I thought I was so strong holding on to that ball when I got knocked over at home plate…..
She is strength. Not the fun kind….where you are held up by your boy teammates and get to celebrate at Dairy Queen….
The kind that leaves people in awe….and leaves them inspired…..
This isn’t the kind of All-Star I would have chosen for her….But make no mistake, she is for certain the Ultimate All-Star.
It’s been way too long since I’ve written anything. Faith loves reading my blog and asks me all the time to please write more. She said she thinks it helps her, she reads some of them over and over and often asks me to read them to her. Sometimes she cries when she reads them, and she often laughs. She gets me. She understand my humor.
I wish I could say that I’ve neglected the blog because Faith is doing so much better. But unfortunately that’s not the case. Tonight I ran into one of her student doctors who hasn’t seen Faith for a few years. She asked all about how she was doing….I realized I didn’t have anything exciting to tell her about Faith and her health. Which lead me to wonder, if I just get sick of telling the same story.
It’s like when someone asks me how she’s doing. I usually say, okay. What I mean by okay is okay in her world. But not anywhere close to okay in a healthy child’s world.
This week we are dealing with systematic yeast. Yeast has always been one of those things that makes me hold my breath. She was five when she became septic with a yeast infection in her blood and I’ve never been able to shake the sick feeling I get when I see yeast on her body.
We’ve also started some new treatments for her disease. Which she absolutely hates. I do one of the treatments every night at 3am. But one of them I can only do while she’s awake and it honestly sucks. Tonight she cried a lot about it.
Of course I act very matter of fact about it, it has to happen, it doesn’t matter if it makes you sad, when silently it’s ripping my heart out to see her so sad about it.
I repeat to her our mantra….none of this seems fair, but there’s a greater plan we just don’t understand. We believe that. I don’t believe for a second that any child suffers in vein. There are times when I am crazy disgusted and angry as hell for the cards she’s been dealt. Today I sat down in the middle of Lowes and cried. A sweet old man thought I was sad that the generators were sold out, and I just nodded my head and gave him a smile.
When I am alone I replay our conversations we have and sometimes it hits me in strange places….today it was her telling me that she can’t be in sports because she sometimes feels like she can’t even walk. Boom. Smacked me in the face as I walked into Lowes. So I sit down on some box and I think of how much fun I had playing sports in school.
Then my friend Sherry posted all these pictures on Facebook of us in Middle School, not far off for Faith. Our friend commented on what a great childhood we all had and she was so right….but all I can think about now is Faith not having the childhood I wanted her to. And that she doesn’t even know what she’s missing and that makes me breathless.
Receiently, we made the decision to sell the home I built with my dad before he died. Sad. But no where near the heartbreak you would think it would be. Why…..because in the middle of all this madness I’ve gained new perspective.
I am grateful to be able to take care of my daughter. Do you know there are children with diseases like Faiths who live in the hospital. I understand why. But can you imagine how much more of a loss it would be to have your home be a hospital.
I want to give Faith the opportunity to experience as much life as she can. Because experiences make memories. She’s not going to play basketball and have sleepovers at her friends houses but she will make memories. And who says her memories will be any less memorable than mine were?
I pray every morning that the good outweighs the bad. That she wants to continue to fight to be healthy. That she doesn’t decide she’s had enough. And then after her 3am treatment I lay in bed next to her and hold her hand.
I love to feel her slow and steady pulse….because that means she’s not in pain. I love to feel her dry and cool hand….because it tells me she doesn’t have a fever. I hold her hand every so slightly so I don’t wake her up… Because it comforts me. It tells me she’s okay. That we are going to be okay. And then I kiss the back of her hand and bless her with the sign of the cross….as I whisper he chose you, my love, you will move mountains.
And I really believe she will.
We’ve been on this journey over six years now….a journey that has been filled with the darkest and lightest days of my life. A journey that has been blessed with the most amazing people god could have ever chosen to accompany us. Today, one of those people, left us. He’s the person I tell people saved my Faith.
So, while I know that this loss is inconceivably hard to his family, friends, and his colleagues, I will do my best to tell you what the loss of Dr. Teitelbaum means to us, a family who was blessed with his brilliant mind and masterful care and thoughtful education of those who will continue to care for our Faith.
I think that it would be easy for me to ask WHY….and HOW…..could something like this happen….it’s unbelievably hard for me to not angrily question how someone like this man, who prevented suffering and death of children could be taken from us….but when I think about Dr. Teitelbaum and the way he was, I know that he would want me to instead concentrate not on his death, but on his life and how he chose to live and how we can learn….
Faith’s case is complicated. And from the beginning Dr. Newman told us about this amazing doctor that worked at Mott who specialized in the care of diseases like Faith’s…She said he was one of the best in the Nation. In fact, she may have said he was the best, and after years of working with him and meeting many of his colleagues around the Nation, I’d have to say she was right. He was the best.
That may seem like a bit of an inflammatory statement. But I assure you, that it is not. It is the same opinion held by countless other mothers of children that have been cared for by him.
It’s possible, probable really, that you will never understand the unbelievable fear you have when you have a sick child, who just isn’t getting better. That was my Faith at the beginning of her diagnosis. We knew what was making her sick, but the treatments that should have made things better just weren’t working….and I was so scared.
When we first met Dr. Teitelbaum he wanted to know everything. With his hand on his face, he would sit back and LISTEN to every word we said. He always really listened. He rushed nothing, and he would hear every word. As a parent, you worry, that you will tell them all that they need to know, that you will tell them enough, that you won’t leave out an important detail, with Dr. Teitelbaum, that was never a worry, because there was no rush, ever
….from him we can learn to LISTEN.
As time passed by I learned something from Dr. Teitelbaum that surprised me. I learned that while I wanted the doctors on Faith’s team to be confident, it was extremely important to me that they were humble. The saying, you only know, what you don’t know…well, Dr. Teitelbaum never answered a question he didn’t know the answer to. Maybe that seems like an obvious statement…..but it’s not. If there isn’t an answer, and it’s just your opinion, I want to know that. He was always looking things up on his phone, or getting back with me after he had done some research. Sometimes he would call his colleague from the other side of the world to get his opinion on Faith.
….from him we can learn to be HUMBLE.
When you have someone who is willing to tell you, they don’t know the answer to every question you have but is always willing to find an answer it builds TRUST. When you have a child with a chronic illness sometime you try things that work well and sometimes things don’t. There is an art to medicine, its not always cut and dry. Dr. Teitelbaum built trust with Faith and he built trust with our family. I always trusted his opinions and always felt assured after talking to him that Faith was in the most capable hands. When he left the room, I always felt like we had a plan and it was one we could live with, I trusted him.
…..From him we learn to build TRUST.
I can tell you when you have a rare disease your health care team literally works around the clock for you. Sending photos and questions happens more often than I would like. The great thing is having a doctor that will answer your question at 2am…what a reassurance. What was also reassuring was that he wanted to learn more and more. He would come into the room and say, I was reading this study and I wanted to go over it with you. Then he would open up a medical journal and read a study with us…..Many doctors would give us the results without explaining how they came up with them, but Dr. Teitelbaum understood, that as Faiths mom, I was his most important student about her disease and he challenged me to understand what I was reading.
Dr. Teitelbaum wasn’t practicing medicine for the last year of his life so its been a while since we’ve seen him, but he would be happy to know that I’ve kept up with reading the medical journals and studies that he taught me about….Parents who want to know everything there is to know, do not make doctors jobs easier, in fact, I know for a fact, that I can be a pain in their side, but Dr. Teitelbaum taught me that learning to learn was one of my most important jobs as Faith’s mom.
…….From him we can learn to LEARN
Our first week in-house at Mott was tricky. I took to Facebook to ask what a resident and attending doctor even meant. Quickly, I learned the ranks…..but Something I respected so much about Dr. Teitelbaum is the way he taught. He would speak with the same respect to a first year medical student as he would his fellow attending physicians. His style of teaching was all inclusive and he involved Faith as much as he could. One day when he left rounds in our room, my teacher girlfriend said to me, I think I just got the best lesson in education in my entire life, and I believe her. His teaching style is one of the things about him, that can never be replaced….but certainly carried on by his students.
…from him we learn to TEACH.
The last thing I want you to know about this man that we will miss so much involves a story. When Faith was six it was determined that her colostomy bag alone wasn’t doing the job and her entire colon would have to be resected. It was a scary surgery as they had to also do some work on arteries that supplied the blood to her lower part of her body. I handed her off in the care of Dr. Newman and Dr. Teitelbaum. They thought it could take as much as six hours to compete. Faith was an expert at the OR at this point and didn’t need the pre-med to go back to the OR. As they wheeled her away I listened to her talk to her doctors.
Three hours later we received a page. The doctors wanted to meet with Faith’s dad and I in the consultation room. I remember looking at each other scared out of our minds that it went so fast something had to have gone terribly wrong…When we got to the room Dr. Teitelbaum pulled out his phone and said I want to show you something.
I gasped for air and then looked at the smile on his face…..NO WAY was something wrong he was beaming….with a smile from ear to ear….He showed us a video he had taken of Faith singing in the OR just before she had her surgery. She sang to him about going bowling with her colon, with a big smile and lots of dramatic hand gestures…..She understood how serious this surgery was, but she trusted her team that much! That she took the time, to make up a song for them…apparently a first for him, because he was pretty excited about it….he asked our permission to share the video, and said it had a great impact on him.
He then shared that the surgery was a success and she was doing fantastic….But I loved what he couldn’t wait to share with us was the video, not to tell us about how amazing they had just done in the OR but how amazing our daughter was to him.
Dr. Teitelbaum knew he was leaving us and made sure that his patients were going to be well taken care of in his absence. I truly believe there is no replacing this man, but I know Faith is in very capable hands. I fear the day I have something new come up and the reality of him being gone takes my breath away like it did when I first heard about his illness.
I mourn the fact that his brilliant mind isn’t working on curing Faith’s disease. I will miss seeing him and having him watch Faith grow. I tried really hard to reach out to him once I heard about his diagnosis to thank him for everything he had done for Faith, but how do you thank someone for giving life when they are losing theirs? Luckily, I have strong spiritual faith that this man now knows exactly how strongly I felt about him and what he has done for our family.
When I told Faith Dr. Teitelbaum had died, she was pretty hysterical. Worse than I had expected because we knew he was going to die. Once she had calmed down, I asked her what about it made her so sad and she said, “I just know he really loved me mom, and I really loved him.”
…. From him we learn LOVE.
It’s rare disease week. Actually, rare disease day falls on the last day of February every year…ironically the very next day we celebrate Faith’s Birthday.
Faiths disease is rare. Rare enough that when you try to research it you will come up pretty empty handed. You see many times, even in our case on the legal medical papers and diagnosis they call it by a related disease. Pseudo-hirschsprungs….when in fact she isn’t a classic hirschprungs case, Faith has hypoganglionosis . Hypoganglionsis is believed to be a congenital defect, caused as she was developing in utero.
Faith struggled for the first nearly 5 years of her life undiagnosed. Thankfully, when we took her to The University of Michigan Mott Children’s hospital they had her diagnosed in days and she began to receive life saving treatment. There were three physicians taking care of her in the beginning, and our primary surgeon sat us down and let us know that this wasn’t going to be an easy road, but a long one. And that they were there to make the ride go smoother.
You really have no clue what that means when someone says that to you….I was so taken back. These were the days in my life where I wanted to hear the good news, and wish away the bad. I loved this woman already, but I remember thinking to myself that someday, I would give her feedback that that is such a harsh reality to say to a parent whose child just got out of an operating room after a 6 hour surgery….looking back I realize, she was so gentle with her words…she was so hopeful…there was absolutely no way to prepare us but to let us know, it wasn’t going to be easy.
And it’s not easy. It is a struggle, everyday. I’ve thought so much lately about what makes it so hard. I think because I’ve realized lately that what makes it so hard for me is so different than what makes it so hard for her.
I think for me, what has always seemed so overwhelming is her care, and making sure I am doing everything I possibly can to give her the best shot at good health. Faith has a broviac, a feeding tube, an apendicosty, and a colostomy bag…she requires a great deal of health care and many things 24 hours a day to keep her in as good of health as we can. We receive 14 large boxes delivered to our house every month filled with medial supplies. We deal with 4 pharmacies and 3 medical suppliers, she sees 5 specialty doctors.
And when you have a rare disease, so much is trial and error….thankfully we are in the hands of physicians who answer emails around the clock and as Faith says, they never give up on me….
But the care isn’t what is hardest.
Faith’s birthday was two days ago and her friend Addy had a snow day, Faith was so happy as we headed to pick Addy up. The girls were going to play with dolls all day long. But all day long she kept going into a room by herself acting as if she was angry about something. Finally, I called her into my room and asked what was bothering her, truthfully, I was a bit irritated as I worked so hard to make the day super special…..She burst into tears crying saying to me, I JUST WANTED ONE DAY…..finally, when I calmed her down we talked and she explained that normally she’s fine with feeling crummy….that she’s used to it, but she had prayed and asked god to help her feel good just for her birthday, and she was crushed that it didn’t happen.
So that’s it..it is crushing to me, it is hardest for me that I can not fix this…I can’t give her the one good day she asked for….she told me that night when we were doing her treatment that she didn’t remember the last time she felt great. And she hates the fact that she feels better when we are in Florida than in her own home. I stay so strong when she talks to me, because she hates to see me cry, but that night she said, its ok mom, I know this makes you sad…I don’t think sadness describes it best, I think helpless…because while it makes me sad all of the time, the helplessness is what hurts me the most.
For Faith its simple, she just wants to be a regular kid. She wants to have more than one or two friends that never forget about her (boy am I thankful for them) because with kids, its out of sight out of mind….but not for her. I plan the only free time I have in my day around picking up her brother so she doesn’t have to come and see the school that she cant seem to get well enough to attend. She just wants to be a regular kid, and people tell her all of the time she is, well news flash….that might be the PC thing to day but it is also 100% untrue. There’s nothing regular about the way she lives her life and by telling her there is, tells her you totally have no clue what we are dealing with.
These posts aren’t easy to write…I sit here with tears streaming down my face and a lump in my throat that burns every time I swallow. But this post, is important. It is important for you to know that there are children suffering from rare disease and we need advocates.
For Faith, we have the Charles Woodson Clinical Research fund…There is no private institution that will ever fund research to cure Faith’s disease because there is no money in curing rare childhood diseases. Which is why we are so grateful for The Woodson fund and the research it allows.
Faiths disease has no cure, but since her diagnosis there has been advances in medicine that help her everyday. There are safer drugs, there are new treatments, mainly thanks to advances in medical technology made possible by people who want to make life easier for children like Faith.
I have a dream for Faith that when she is older she is able to say, I had a bad day today, but that’s okay, because it was JUST ONE DAY. With the help of great Doctors and great people who believe in medical advances I think we can make my dream reality.
I am a Michigan fan. I have been since as early as I can remember. I have lived no more than 20 minutes away from the Big House for nearly my entire life. Growing up we believed Bo knew everything. Anthony Carter and Desmond Howard were who every little boy wanted to grow up to be. We loved Lloyd Carr and Charles Woodson, who was not only the only defensive player to ever win the Heisman we thought he was the greatest defensive player to ever play in the Big House.
So if you’re not a fan of my Maize and Blue you maybe tempted to stop reading, but don’t. This isn’t a story about Michigan. This is a story about a Michigan Man. In my eyes, the greatest Michigan Man ever. It’s a story of how you too can be like a Heisman trophy winner. It’s how you can be someone’s greatest defensive player ever. It’s how you can….be a Woodson.
My daughter Faith has a disease for which there is no cure. As ominous as that sounds, we have great hope for our Faith and her future. You see, we have one of the greatest teammates of all time on her team defending her life and helping her fight her battle, NFL safety Charles Woodson.
If you’ve ever watched Mr. Woodson on the field, you know he’s exactly the type of teammate you want. He gives his all on every single play. He never gives up. That is the type of person you want on your team when you are going to battle, and what greater battle could you have than fighting to find the cure for a disease for a child.
Faith was 5 when we first met Charles, she was chosen to be a featured child in the yearly charity event that is held to fund the Charles Woodson Clinical Research Fund. Faith was admitted into the hospital at the time and Charles came to visit her in her room. He sat and talked to her and they had an instant bond. Earlier in the day she wasn’t sure she would be able to use her pass to leave the hospital and attend the event, but the minute Charles left the room she wanted to start getting ready.
They spent the weekend becoming friends and Faith did a great job being the face of a child who benefits from the Woodson Foundation. As the weekend came to a close, Faith worried that she would miss her new friend, unsure that she would have the opportunity to see him again. Those fears have never been realized.
Mr. Woodson gave me his contact information and asked that I please keep him up to date on Faith’s health. Well, you know, when a famous athlete gives you his information, you think, I can’t use this…I can’t interrupt his life. So then a mutual friend calls me and she asks for permission to give Charles our phone number because we aren’t contacting him. A month later when I finally called him back, he was irritated with me. That’s when it happened, when I realized who I was really dealing with.
Charles Woodson was worried about Faith. He was worried that I wasn’t updating him and he missed his little friend. Charles Woodson. This legendary football player, was for real. He isn’t just the face of a charity, he believes in the mission and wants to inspire others to do the same. He wants to help, and he wants to give hope to hopeless feeling situations.
I can’t explain the friendship they have, but I can tell you that Faith gets teary-eyed watching him play football. I can tell you that when he comes into town he makes a point to see Faith and spend some time with her. He Facetimes with her when he can’t come to town. He stays up to date on her health and pays special attention when she is admitted into the hospital. He wants to know what is going on, he cares and wants to help.
I can tell you when it’s time to say good-bye and see you next time there are many hugs and they say, I love you. And I can tell you they mean it. We love Charles Woodson.
We love what he stands for. We love that he won’t give up the fight. We love that he wants to help however he can. And we love that he knows we are not judged by what we do for a living but by who we are and how we serve others. We love who he is. Mr. Woodson is making this world a better place by deciding to make a difference in the lives of others…of children, of my Faith. For that, we will always love him.
Can you imagine, if there were more Charles Woodson’s in the world? Charles can only do so much but can you imagine if there were a thousand Woodson’s? Or even ten-thousand Woodson’s? The possibilities….
Faith tells me when she grows up she wants to be like Charles. She then giggles and says, well except for the football part.
She wants to serve others. She wants to make this world a better place, a healthier place. She wants to be a Woodson, don’t you?
I’m in a bad place. I feel like I can’t talk. I feel like I can’t really even think. I also can’t sleep. I am in a position of wanting to change what I am slowly beginning to realize is my reality, or maybe more importantly what is Faith’s reality.
The first couple of years after her diagnosis were so hard. We literally lived in the hospital. I felt like we didn’t have a handle on things, and I felt like life was a big blur. Then we had a couple of years, that seemed to go fairly well. Fairly.
Don’t get me wrong, it was still a struggle, but we had 9 admissions in two years as compared to 24 admissions in two years. Clearly, things were getting better. She still needed medical care or intervention every 3-4 hours but things weren’t so bad. She was going to school more, and even had become a gymnast. I was beginning to think it all wasn’t so overwhelming.
Now, that doesn’t mean I wasn’t overwhelmed. But I was beginning to think I could figure it all out. A friend of mine who owns a restaurant even called and offered me a job for a few hours a week…he was trying to help, but in the end it made me realize what we are really dealing with. Friday and Saturday nights from 6-9pm. The first weekend went great. Then the second weekend she was sick, but she was so excited that I was working, she didn’t tell me.
The next two weekends she was admitted and then she came home on IV antibiotics. And I think then is when I realized, my job was taking care of her, and I couldn’t handle anything outside of that. This was both a scary realization and a sad one. There’s a little girl at Mott, that has a disease similar to Faith. We can be there for weeks at a time and I don’t see her parents…and I wonder, can they just not handle it? Because I get that feeling, but I also can tell you, nothing could keep me away.
Something is different the last few months with Faith. She’s been sick and she has needed IV fluids instead of her usual g-tube replacement fluids.
We are in the position of making a decision to give her permanent line access through inserting a port. She had a port once before and things did not go well so as you can imagine making this decision leaves me feeling like there is no good way out.
Really, it’s not us making the decision. It’s her body and that’s so hard. She has so much to deal with already. I feel like this is just not fair. It is so hard to see her in pain or feeling poorly and not have any options to make her feel better. But I am scared that the port is one more thing she will have to deal with. One more place that could get infected, one more thing to worry about.
This journey that we are on, it’s not a sprint, it’s a marathon. And her legs are tired and so is her spirit. She needs a break, she needs to remember how good it feels to do a cartwheel at the gym or hang out at school with her friends.
When she was young and practically living in the hospital she played “hospital” all the time with her dolls. As her health improved I was so excited to play school with her and her dolls. Last night she set up an ER in her playroom, complete with six babies, all about to get ports or PICC lines. I know this type of play is good for her and I know it helps her deal with her emotions about her surgeries and health issues, but as her mom it breaks my heart.
It’s summer. I want her building tents and swimming pools for her dolls. In fact, I want her outside in a tent and at a pool. This reality of hers its too much sometimes. So lately I’m quiet…I have many things I am trying to figure out. And I am trying to process all of what is going on…and I can’t help but think to myself over and over again, she deserves so much more…..
And she is at an age where she is starting to realize the stress of a serious childhood illness and what it does in families. And if you are wondering if she has the same thoughts about thinking she deserves more, I can tell you, she doesn’t. What she does worry about is her brother, who gladly skips out of pool parties because it wouldn’t be fair to Faith. And she thinks of me, and the additional pressure the IV fluids and PICC line puts on me…often she wakes up in a total haze in the middle of the night when her pump goes off and apologizes over and over again that I don’t get any sleep. And when she is awake, she looks at me sometimes when we are just sitting and says….I’m sorry this is so hard mom, I am so glad god gave me you.
The reality is I am the lucky one….I am so glad he gave me her….
It has not been my year. Yeah, I’m not so sure it has been my decade but this year in particular has been the kind of year that makes you beg for the dropping of that big ball in times square and the ringing in of the New Year. I started this year turning 40. Honestly, it wasn’t really as awful as I thought it would be, but it does make you look back and realize how quickly life goes by so I made a decision on my 40th birthday this year…it was going to be a good year. I was going to make lemonade out of lemons. No matter how tough things got, I was going to make this year count.
And basically that’s what happened…at first. We flew to Florida and took care of my best friends daughter when she had her new baby girl. We went on two family vacations, more than we had done in years. I didn’t stop to consider the stacks of bills or the strain of the medical costs in our future, we enjoyed moments and celebrated the time we were spending with our healthy daughter and our patient and ever so loving son. I truthfully had learned not to take a moment of this time for granted. I saw it as a blessing that we were able to just live.
And then, things began to change. As if someone had turned off our fun light, maybe turned off our lights all together. First a friend who had been a pillar of support with Faith’s illness had their child diagnosed with a life threating disease. My first thought was, it must be a mistake, this family does so much to make the world better for sick children and their families no way could this happen to them. But it did and you start to remember that it can happen to any family, at any time, we don’t decide.
Faith that same week had a brief admission to Mott for an infection in her intestines. Something we are used to but never an easy thing.
At that same time my mom was complaining of a sore leg which turned out to be much more than a sore leg she had an abscess and had to have surgery. She was admitted into the hospital and she had the surgery. Her surgery was followed by a lengthy stay in the hospital and then an extended care facility.
Will also had a rough few months around this same time he was diagnosed with pneumonia, and an infection in his gum line bove his tooth.
The most difficult thing to happen this year was the loss of Will & Faith’s grandfather, Ren. He was so important to our family and is death was totally unexpected. He had traveled to London to see the Lions and he never returned. Things will be very different without him, such a huge loss.
There’s more, another infection and admission into the hospital for Faith, the flu that cancelled our Thanksgiving, I could go on and on but I really hate to rehash it all.
Then there was a moment that everything seemed to come to a crashing halt, literally. As I was driving down the road, a woman ran a stop sign and there was a choice I either ran into her going 40mph or I swerved to avoid her and hit a big truck head-on. The car was the better choice as the airbag went off in my car I began to immediately wonder what I could do to change the fact that I was in the accident. I had contemplated going out with my friend that night I was thinking maybe I could go back and do things differently that day, so I wasn’t there when that lady decided to “get confused & forgot to stop”
I got out of the car and walked around with my ears ringing and face burning from the airbag and seatbelt. I was walking in circles when the ambulance driver asked me to sit down. She was asking me lots of questions and I remember feeling like I had no clue how to answer her.
I was busy. I was staring out the back of the ambulance at the other ambulance asking god where had I gone wrong. I asked him what could I do differently. I kept asking the same question over and over again until my phone rang, and broke me out of the trance I was in, it was Mott calling about Faith’s medical supplies. For some reason I answered and talked to the pharmacist about a issue we had been having with Faith. I talked for the next twenty minutes to the ambulance driver about Faith and her medical issues. She was so concerned and so genuinely upset that I had to deal with the accident on top of everything else.
Over the next few days I had so many people say the same thing, when is all of this going to stop? I had a pastor offer to come bless my home, my best friend sent me a prayer on curses and changing luck, I had someone send me a note that she was a “good witch” and she was willing to come get the evil out of my home. It wasn’t just me, it seemed like too much to everyone, which truthfully made me even more weary. Where is god, is he even present here?
But then, some remarkable things began to happen. And I began to realize…this world is so much bigger than my bad luck.
The principal of our school called me and let me know that Santa had visited her and wanted to do some things to make life easier for our family. This Santa had new flooring installed in our upstairs, hospital grade flooring that is germ resistant and able to withstand the chemicals we need to use to not spread the chronic infection Faith carries with her at all times. Santa also got wind that our dishwasher was broken and had a new one installed. They are anonymous, they want no thanks they just want to humbly help. God is present here.
And that friend with the newly diagnosed child, got results that were in my opinion directly related to the power of prayer that surrounds this family. Promising results. God is present there.
Then a family from our school heard that we didn’t have a reliable car to drive anymore, and called to offer to get us a deal on a reliable car. This family decided they wanted to make things easier then a good deal, they got together with the dealership owner and some other friends of theirs and they had the car waiting for us when we pulled into our driveway. They bought us a car. A jeep actually. God is so present there.
I’ve been calling them Secret Santa’s and Santa’s elves but I think Gods angels is a better name for these people. And I’ve realized they are everywhere. They are praying you make it out of the hospital to see the long awaited play. They are dropping off meals and sending vitamins, they are sending cards and offering help. They send grocery gift cards and gas cards too, they send penguins and balloons. They are delivering medicine to your hospital room, taking a chance at getting sick themselves, they are distracting your son, so he doesn’t miss you when you are in the hospital with his sister. They offer hugs and they offer support and they mean it. They talk to you when you need to talk and they respect your silence when there’s nothing more you can say.
They want to make sure not only your children have a good Christmas but that you do too. These people are good. They are Gods Angels and they are everywhere, I don’t know who our Santa is. I really don’t ever want to know. And I’ve never even met some of the people who got us our Jeep, But I want them to know that they were the reminder I needed. That people are so good and good people are everywhere. And sometimes bad stuff happens but when it does god will send his angels to lift you up and get you away from the darkness. I don’t need a special blessing said over my home to protect us from any bad luck, I just need to keep my eyes open because gods Santa Angels are everywhere reminding me God is present here.
When a funny man who spent his life making other people smile suddenly takes his own life, most people want to know how. How could someone who made so many people happy, be so sad. Then there are the people who understand, who can see, that sometimes happiness hurts.
Most of my life I was one of the people who could ask how on earth could someone ever feel so sad. I lead what I felt to be a life that was charmed. Perfect, no, far from perfect, but happy. Happy to the point that I didn’t understand sadness or depression or people who couldn’t figure out how to be happy. And I lived like this for a really long time. Through the death of my father, a divorce, and loss of a close friend, I was still happy. Not happy like I had been but happy, I had yet to experience something so life changing that it would change the core of who I was to give me the perspective to understand what true sadness is.
I turned forty this year. The hardest part of turning forty is you seem to do lots of sudden self reflection. When I think of what to this point in my life I have accomplished that I am truly proud of, what I truly believe in, it’s my children. Will and Faith. They are what has given meaning to my life. They are what I haven’t messed up. They are what I know I have done right. They are strong, loving, caring children. And they love me. They love everything about me. Total true unconditional love. They are how I began my real faith journey. They radiate the love that could only be god given. It’s too good to be anything but this.
With that love, I believe comes my true understanding for sadness. Only since Faith was diagnosed with her disease have I been able to understand. Now, I am not saying that I am not happy. In fact. there is a part of me that thinks the way I live life now, thankful for everything about my children is more rich than when I was happy all the time.
But I am in a place in my life where happiness hurts. Faith has been doing pretty well. She has been spending most all of her time at home and not in the hospital. This obviously makes me so very happy. But her time at home means she needs feeds and fluids and meds every few hours. When I think of why happiness can be so hard I think part of it is that. I have my hands on the very thing I spend so many hours being worried about. Its in our face, in our hands, in every room of our house. There are medical supplies, syringes, ostomy bags, feeding tube supplies, it is everywhere you look.
My Dennis gets a day off of work every week, and he takes me out. Maybe for two or three hours. And he always asks me, what can I do to make you happy. Because if you know Dennis you know he would do anything he could…And the saddest thing is I have no idea. I want my mind to stop thinking of the best way to keep Faith’s yeast under control, I want to stop thinking about whether or not we could switch to a four hour fluid schedule, I want to stop thinking about whether or not to tell her the truth about her friend in Australia with her disease who died at the beginning of the summer, because every time she asks to face time her I want to burst into tears. I want to burn the bankers boxes of unopened bills, I want to not look at the forecast before we make decisions about Faith going outside and I want to lay in bed at night and not worry about how this disease is going to progress.
I have moments of happiness, honestly I have hours of happiness, but even then when I am happy, the happiness hurts. Because I am scared about when the happiness stops. My mom asks me all the time oh, didn’t you see that on Facebook….she’s retired, with more time on her hands so she’s on it more often….I look at Facebook and I hold my breath…because my colostomy association, and HD group and Mott Mom’s are full of updates that remind me that happiness isn’t as easy as it used to be.
Before you start to panic, I see a psychiatrist and he thinks I am doing pretty well. And though I am really good at fooling most of you into thinking I am a rock, and totally unaffected by all of this going on around me, he sees right though my bs. He jokes that the punishment meets the crime, meaning I am appropriately sad for the situation I am dealing with and apparently the fact that I know I am sad, means I have a handle on reality. Boy, there are days I miss telling people to have a magical day. I think if Mary Ann of today met Mary Ann of 2002 I would probably smack the perm-i-grin right off her face. I miss that naïve girl who thought all days were magical. Sometimes I wish my friends like, Nicole and Heather could meet that Mary Ann. They would like her so much better then the distracted friend who has a hard time holding dinner conversations without getting distracted by a text that says mommy, my tube is bleeding.
Recently, my escape has been the TV series House. It’s on Netflix and I have what some people may call an addiction. Strange? It’s all about this doctor curing unexplained disease and illness….I’ve watched two seasons and I am pretty sure I’ve only seen two deaths…he’s really good. There was an episode that I almost feel like was the whole reason I started watching the series.
Nine year old girl, cancer, with what House described as unreal bravery. He tried to convince the other doctors that this child had to have a tumor that was putting pressure on the area of the brain that was controlling her fear, that she wasn’t or couldn’t possibly be so strong. She reminded me of Faith, she was brave about tests, and treatments, and I knew that kids who get chronic or life-threatening illness at young ages often are really unbelievably strong. I didn’t agree with the whole tumor theory.
Then House, confronts the girl when she is alone in her room and she admits, her strength is for her mother. That the nine year old was worried that if she wasn’t strong her mom wouldn’t be able to handle it. Yeah, it’s only a TV show, but suddenly I realized that could be my Faith, pretending, just like that girl and just like me that this is all okay, that god made her this way for a reason, and she was happy about it.
Because we do really believe there is a reason for all of this. There has to be.
Faith had a fever for the last week or so and one night when we were up doing her meds I asked her, Faith does all of this make you sad? She said, yeah, but I think it’s sadder for you because you have to get up and take care of me when I am sick and do my feeds and stuff. I hope she’s right.
I think half of my fear is all of this makes her as sad as it makes me sometimes. I would give her my perfect childhood if I could, It’s so sad to me that she will never understand what a carefree childhood is all about. My saddest memory that I can remember from when I was her age is a balloon that I loved blowing away into the sky. Which sounds almost too ridiculous to write.
All of this being said, there’s one big thing. In learning about loss, and sadness, I have also learned the value of life. I have learned that there are children fighting everyday to stay alive and there are parents who are saying goodbye to their children. It’s painful to me that we don’t get to know the plan and we don’t get to understand why. Why a child. Why on the first day of school. Why that family.
Though every tear, and every struggle I can tell you one thing for certain. I still feel blessed. I feel thankful to be taking Faith to school today, even if it is a week late. I feel thankful that Will has a smile on his face every time I walk into his school. I feel thankful for the laughter I hear at 10pm on a school night because I am downstairs blogging rather than making them go to sleep. In the end I wouldn’t change lives with anyone because even though happiness hurts sometimes, its all worth it.
Tonight I sat with a couple of the Michigan Football Players and waited for Faith. These are two boys who spend quite a bit of time with Will & Faith so they know us very well. Joe the older of the two, looked up at me and asked….how do you do it? It’s so awful, I watch, I see how hard it is, her disease is so bad, I never really realized. In my life if I am ever faced with something really bad I can learn from you, how to be positive, and to do it all with a smile.
I smiled and said, of course you could do it too, god only gives us what we can handle right? Right…I try to convince myself…all the time…I got this. But there are times, sometimes, that I feel like I am barely able to lift my head off the pillow at night, let alone smile while I do it. Usually those times follow a really bad few days, either physically or mentally for Faith. Sometimes it gets to me, sometimes I question gods faith in me and what I can handle…those days, the hardest days usually have nothing to do with how Faith feels, but rather how someone has made Faith feel.
Not to long ago we went to a party. There were many people there and lots of kids. Most of the kids at the party knew everyone, but they didn’t know Will & Faith. I am thinking there were maybe fifteen or so seven to twelve year olds there. We introduced the kids to Will & Faith and left them to watch a movie with the rest of the kids. I showed them where we were at the party. Shortly after leaving them, Will came to find me and told me we needed to leave. After questioning him for less then a few seconds I could tell by the look on his face, we needed to go. We rode home in silence. For some reason I didn’t feel comfortable questioning them. We got home and I invited the kids to have a sleepover in my bedroom and watch a movie. Faith was quiet. Way too quiet.
The movie was over, and I was holding her. Suddenly, her entire body was shaking. I asked her if she felt sick and she said no. I told her that she was trembling for a reason. She sat up and began to cry, hysterically cry. I knew by the way she was crying she was hurting, really, really hurting. I told her she had to tell me what was wrong. She said those kids, they said I was gross. They said they didn’t want to see my ostomy bag, and they wouldn’t let me sit near them, they kept moving away if I got near them. I felt destroyed mom. I’ve never felt so bad ever in my life. I don’t ever want to see those kids again mom. Then over and over again she repeated, I felt so all alone. I felt so all alone.
The strange thing about when your child is hurting like that, it hurts you too. Will and I were both crying right along with Faith. Will the amazing big brother, stayed composed and responded appropriately. He told her, she was rare like a gemstone and those kids were jealous because she was so pretty and dressed so cute. He told her that she was strong, and kind and none of those children even understood what it meant to be a good friend.
I, on the other hand handled the situation totally inappropriately. After crying right along with her, I apologized for dressing her in an outfit that showed her colostomy bag. I told her that was my mistake and that we would go out and find more clothes that hide her bag. I told her that I should have talked to the parents beforehand, to explain the bag and why she has it. Then I told her I was sorry for taking her somewhere new and putting her in that situation.
I honestly can hardly believe it myself. Not only that the children were so awful to her, but that I, the person who has gone through every second of this journey with her would even for a minute suggest she hide in the corner. That I would apologize for the very thing that keeps her alive. I failed.
When you have a chronically ill child no one teaches you how to handle these things, and I have gone over this night in my head hundreds of times. What I should have done differently, how I should have handled the situation, what I should do in the future. And basically……I got nothing. I can not protect my daughter from mean kids,from curious, clueless kids. I can not protect her from continuing to be hurt by people saying insensitive things. I can’t take back my ridiculous reaction to her hurt that night.
I do know, I shouldn’t be telling my daughter she should have to hide her body from children who call her disgusting. I do know that I have to do everything I can to help my precious girl love the body that gives her so many problems. I know I need to give her every tool I can to continue to move fearlessly though this life of hers, that often is so full of fear.
I believe in being as honest as I can with my children. I told them I handled the situation totally the wrong way. That I had always been scared of mean people and I really didn’t know what to say. That it was hurting me so badly to hear her so sad, and that I just wanted to make her feel better about it. I wanted it to be my fault that it happened, that had those kids not seen her bag that magically everything would have been okay and she wouldn’t be hurting so bad. Faith smiled. Not an, I’m trying not to cry smile, but a real smile. Confused, I asked her why she was smiling. She said she was lucky….lucky that I loved her so much that I was trying to make all of this my fault.
All of this has made me realize there are many children who suffer from Childhood illness and who have to deal with feeling all alone. That’s why I have started working with an amazing group of people who are building a camp for kids like my Faith. A camp that she will be able to go to every summer for an entire week, and be with other kids like her with feeding tubes and ostomy bags. A camp that will give her the tools to deal with kids who don’t mind their manners or who are just plain mean.
I’ve had friends ask me, how I can work on this camp, taking care of Faith is more than a full time job, don’t you think you should try sleeping when you can, or do something for yourself. I ask them, how can I not?
I know the saying is god only gives us what we can handle, maybe this camp is our way of being able to handle these things I feel like I can’t handle. Maybe Faith will be in the same cabin as another girl with a colostomy bag and they can laugh about the names they give their stomas and how to cover up how ridiculously loud they can be. Maybe she will be in the same cabin as another child that has to get fluids in a tube in her gut all day long to keep her hydrated and they can talk about how annoyed they get having to measure all the ins and outs. Maybe she will be with another little girl who understands that really all these kids want is to feel normal and like they can do anything any other kid can do. So the next time, because she’s only 8, there will be a next time she happens upon kids who aren’t so nice she at least she won’t have to feel so all alone. Because even though it feels like it….she’s not. She’s not all alone.