happiness hurts

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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.

She’s not all alone……..

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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.

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HAIL!

hail
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I used to teach building relationships for a living. First for a few retail companies then I transitioned into the health care world. I understood the importance of building strong relationships with your clientele, or so I thought I did. Now I understand it at an entirely different level.

I used to work for the mouse. While I was at what I still consider to be the happiest place on Earth I learned all about building relationships with your guests, or consumers as most people call them. The Disney experience prepared me to use my teaching skills with this new knowledge to bring the idea of relationship building to retail and eventually to health care. A relationship with your client is something the retailer down the street can’t compete with. The relationship makes the client feel special.

It’s unreal to me that now, I would be faced with the truest test of relationship building in the health care setting. My baby girl, and those that care for her. It’s all about me, in figurative terms, putting my money where my mouth is, and understanding if the relationship building that I’ve spent so long preaching is so important, is really as important as I say it is.

Truthfully, just today I’ve realized it is so much more.

Faith has been seen at a few different hospitals over the last few years, I would say some of our Nations best. Boston Children’s, Cincinnati Children’s, and of course The University of Michigan. The doctors at all three hospitals are the best of the best. And I feel she could be adequately cared for at any of the three. But when you are talking about your daughter, who holds your heart in her hand, you want more than adequate care from the best doctors. You want doctors who do more than care, you want doctors who love.

Yes. I said it. It’s what building relationships is all about right? Love. Today, after three years of care at the University of Michigan Mott Children’s hospital that’s what I realized, Faith’s doctors and her team at Mott, they love her. They truly love her. The funny thing is, it took having friends of ours at the appointment with us for me to realize just how special the relationships that our heath care team has built with Faith and the rest of our family too has become. As we left the appointment, they said, I can’t imagine that’s how all appointments are when you come here….well it is. Today was a good sample of exactly the kind of care we get.

Samir, an attending who was a fellow when Faith was spending hundreds of days in the hospital came out to see Faith in the waiting room, he kept saying, Wow, as he looked in amazement of how much she has grown over the last two years. He was excited to ask about Will and quick to tell Faith that her picture that she drew of the two of them standing together under a rainbow is still hanging in his office right next to her photo of her eating a big plate of spaghetti. He gave hugs and left, Faith looked at me and said, Mom I love him so much…and I let out the biggest exhale because Samir was with us during her darkest days and is a big reason she is doing so well now.

When we went back for her appointment Marilyn her nurse came into the room and gasped about her cute outfit. They giggled about all the clothes Faith has and they talked about the fact that she’s been missing school too much lately. Her dietician came in and also greeted Faith with a hug, she talked to Faith about her gymnastics and how things were going at school, leaving the important medical questions to wait as she was so excited to catch up with how things had been going.

Then in walks Dr. Newman, who greets Faith with smile and sigh as she asked her to stand up and model her latest outfit. She told the student she had with her about the work Faith does with Persnickety Clothing Company. She stood back looking at Faith like a proud parent. She played with her ponytail as Faith told her the latest on life, and that this illness is causing her to miss too much school and gymnastics. I stopped for a minute and watched and realized how totally fortunate we are to have a doctor like Dr. Newman, who loves my Faith, and who wants her to have the best life she can, not because it’s her job, but because she believes in her and she knows Faith deserves it.

As usual the entire team spent all the time we needed to catch up and make a plan for attacking this current health issue at home. Before we left, Jayne our other nurse just stopped by to say Hi, because she knew Faith was in today. Then Janelle the surgery scheduler also came back. Faith loves all of these people and feels so special when we are there.

Understanding that there is no cure at the time for Faith’s disease I can’t begin to tell you how much this means to me, and mostly to Faith. We are so tired. I am still getting up every three hours to do Faith’s fluids and medicines. Lately, she’s been pretty sick so we’ve been up a lot more than that. Today, I got a high-five from a doctor who thinks I am doing an amazing job keeping my baby out of the hospital.

There are always hugs as we leave for both of us and I watch as Faith hugs Dr. Newman with her eyes closed….I know that the love between them is mutual.

Faith reminds me often that god gave her this disease for a reason, that he must have had something special in mind for her when he choose her to have this rare disease….That’s how I feel about her team at Michigan….we choose them, because what god gave them is so very special. And we are so very blessed to have them to care for our little Faith. This is the University of Michigan! Hail!

For more Information on supporting Faith’s Journey Visit:

http://www.gofundme.com/Support-faith

I’m holding on

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My dads been gone almost four years. It hurts no less but the pain gets easier to live with. I remember a time when I couldn’t go a day without crying. It’s different now, there’s no more picking up the phone to ask for a ride, forgetting he’s gone, or constantly adjusting the tense in which I referred to him. I think it that I’ve learned to live without him. Maybe because theres no other choice.

The only thing that has hurt me more than the death of my father is the illness of my daughter. The difference is that with Faith’s illness it seems the pain is consistent and sharp most of the time. I assure you, unless you are a part of my very closest inner circle it’s not something you are aware of. Because its my job to stay positive, and lift my daughters spirit. But at night as I take care of her broken little body I feel as if my heart breaks over and over again.

I also feel like there’s no good way to talk about how hard this is, or how difficult it is just to keep her in a healthy enough state that she can spend her life at home, rather than in a hospital bed. I feel like I should just be thankful that she is here and quiet about the fact that most of the time we are just skimming the surface of the water.

I wonder sometimes if anyone realizes how much I think about what I can do to improve her heath. I wonder if anyone has a clue how often I worry. There are so many decisions to be made, and her disease is so rare, that the thoughts are in my head most of the time.

Faith needs medical intervention a minimum of every three hours. She doesn’t absorb fluid, so she needs bolases of water, she needs sodium, and sugar. She needs tube feeds because she is unable to maintain weight without them. She has a colostomy bag because she can’t go to the bathroom without it. She very often has systematic yeast infections around her tubes and colostomy bag. Even though she has a colostomy bag and all but a few inches of her colon is gone her digestive system still doesn’t work effectively so we have to do irrigation washouts through her apendicosty. The disease she has also makes her very susceptible to enterocolitis which always lands us back in the hospital so we have to do washouts of the lower part of her bowel which isn’t even attached or operational. The most frustrating part of her disease for us is her never ending battle with dehydration. If you’ve ever been dehydrated you know how bad it makes you feel and she becomes dehydrated often and suffers from horrible headaches and aching legs. Most days her belly hurts for some portion of the day, we used to use pain medicines but have found they seem to add to the problems. All of these issues mean a hospital visit for any usual cold or virus, so keeping her healthy is key.

Somedays I don’t know how we do it. I think we try hard not to think about doing it we just do it. Most people I know don’t have a bank account with money saved for when you have to quit your job and care for your sick daughter. You wouldn’t expect that a serious illness could cause you to go bankrupt. You would think you could travel wherever you needed to get the treatment you needed and your insurance would pay for everything. You would think that all medial supplies would be covered by our health care system…you would think when you have so much to worry about keeping your child healthy this would be the last thing you should have to think about. Pretty unfortunate.

Then, I worry about how this is effecting her. We lost a good friend recently. Her family took her to hospice the day she died. a few weeks later Faith asked me to turn the radio down in the car. Will objected, but she said she needed to talk to us about something important.

Mom I need you to make me a promise….

Faith, I don’t make promises unless I know I can keep them….

Well this one you can keep, I want to die at home. So when it’s my time, promise me you won’t let me die in the hospital…

You’re not going anywhere Faith, you’re staying here with us…

I’m serious mom, I worry about this, I can’t die in the hospital, so if something goes wrong with my disease, promise me you will get me home and let me die with my family in my own house. Say it, tell me you pinkie promise…

I went on and on about how she’s going to be okay, and she continued to get more, and more annoyed. Finally I agreed to promise her, she then asked if it was Taco Tuesday, because she really didn’t feel like Tacos, as if we had just been talking about the dinner menu for the week. When we got out of the car Will told me he wished she could just be better so she could talk about normal girls stuff like shoes and shopping.

I walked around for the next few days in a haze, so hard to concentrate on anything when your daughter is worried about her wishes for the end of her life being grated. Just when I began to put it out of my mind we had an exceptionally bad night. She was feeling pretty sick and every time I went to do her treatments she was awake and in pain. She asked me to just lay next to her and talk. As we laid there she asked me if she gets sick of all this she could decide she wants to be done. I said, all of this is what keeps you healthy and out of the hospital…her answer is the reason I feel like I can’t breathe. Mom, when I go with Jesus I will be better without all this stuff…

This is why I live my life constantly trying to help her find joy in her days, I want the pain she feels to be worth it for the life she gets to live. I feel like we are walking on a tightrope everyday, just trying to get to the other side. Along the way there are so many things trying to knock us off, there are so many things you have to worry about. You would think it would get easier. But it does not.

So how we keep going? At the beginning of this journey someone sent me a song by Martina McBride, it’s a song she wrote about breast cancer. Faith doesn’t have cancer but this person knows music so I listened.
I’ve never played the song for Faith but I sing it to her every night after she falls asleep. Sometimes I’m singing though tears, and sometimes I’m half asleep. Sometimes I think its more of a prayer and sometimes I think its just a reminder of a promise I made to Faith the day I learned of her illness. Somedays she may feel like giving up, but I never will, if she lets go, I will hold on and love her through it.

“When you’re weak, I’ll be strong
When you let go, I’ll hold on
When you need to cry, I swear that
I’ll be there to dry your eyes.
When you feel lost and scared to death,
Like you can’t take one more step
Just take my hand and together we can do it
I’m gonna love you through it.” ~Martina McBride

Leann’s Legacy

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One thing I’ve realized in this journey is that sometimes your story changes. I have fifty unpublished blogs that for some reason or another I didn’t feel like sharing. When I go back usually it’s due to the fact that I’ve written them while angry, or tired, or just done. That’s what happened the other night, I was angry. I got a phone call from our friend Ed. I’ve known Ed since I was maybe fourteen. He’s the father of my friend Channon. In the past three years our relationship has grown from father of my friend to fatherly. Lately, say he maybe one of the very few people I know totally understands exactly what I am going through.

When his daughter Channon was in high school she was diagnosed with Cancer. She spent nearly a year at Mott Children’s Hospital, and won the battle against cancer. She won that battle with her mother Leann and father Ed at her side. Because of the experience at Mott, Ed and Leann started the Michigan from the heart, the group responsible for bringing student athletes up to Mott to see our sick children. For those of you who have followed our journey, you know just how important these athletes have been to Will & Faith. They consider Patrick, Jordan, Morgan, and April some of their closest friends. And the feeling seems pretty mutual. They turned their tragedy of their daughters cancer into something that continues to help families battling similar struggles.

So, that phone call. I knew the moment I heard him say hello, that he didn’t have good news for me. Leann has been sick, she has needed a kidney transplant and has been struggling though dialysis. In a situation very similar to Faith’s you never really know if she will be feeling good enough, or have enough energy to do what the days present you with. So I figured it was a call saying she was having a rough time, or that she was headed back in to the hospital. The conversation that followed left me struggling to catch my breath. Leann was going to die. She had cancer that had spread through her body, and there was nothing they could do.

My mind raced around that fact. I first thought of Faith, who had grown to ask for Leann every time we were admitted into the hospital. Then immediately I began to think of Channon, it has not been so long since I lost my dad, and I know how absolutely horrible it can be. And Ed. I remember a year ago I sat with Leann as she was in the hospital, and she told me how lucky she was to have Ed and that they were best friends, and that he always wanted her to be happy. And I can tell you that my friend Ed loves his wife, the kind of love that all of us want, the man thinks of her first, always. They know what they have, and they don’t take it for granted.

That is what turned into my unpublished blog. That night I sat down and started writing angry words of someone who just is sick of life not being fair. I remember a married couple from our community had a daughter who had open heart surgery the day Faith got her colostomy bag. They struggled with their daughters illness. They understood the value of life, and they didn’t take anything for granted. So months later when I heard at a very young age the dad was diagnosed with stage 3 cancer I was outraged…another case of life not being fair. They get it. They understand the lessons of life they have had their battles to bear, it made me crazy mad that they were about to battle and entirely different war. (he’s won the war, by the way) I believe you gain perspective from tragic events, you likely become a better person, but there seems to be a point where too much tragedy all in the same place seems so very unfair.

The next morning, I sat and considered the difference Leann has made in my life. I can tell you exactly what hospital room we were in, she came in and sat with me. I’m pretty sure Faith was with us, but I don’t remember her being there. The conversation we had would change how I handled my daughters illness. She would give me hope, and she would make me feel for the very first time in so long that I wasn’t alone. You see, she had been there. In that very same hospital with her very own daughter battling everyday for her daughters life and well being. We talked about how everyone tells you to go home and get some sleep, and how the comment actually makes you mad, because at no time would you consider leaving your child alone in a hospital room or with someone besides her mommy. We talked about how hurtful it was that the longer she was sick the more people seemed to lose interest in being there for you. We talked about being scared and lonely and feeling like you were crazy. We talked about how sometimes you didn’t like a nurse and really there was no reason you just didn’t like them. I could tell her anything and at not a single moment in that conversation did she try to make light of the mess we were in or try to look for a solution, she just told me she knew, and I knew she did.

She did teach me some very valuable lessons that I plan to pass down to other families at Mott on her behalf. I AM THE BOSS. There is not a doctor or nurse that knows my daughter as I do and I have to be the person who approves of her health care plan. Some times you have to break the rules. She told me that she used to buy super soakers for the kids on Channon’s floor and they would have water gun fights. One very horrible day at the hospital when Faith was at her absolute end I improvised and we used syringes. We squirted every doctor and nurse that walked in her room. As she giggled though it all I fought back tears because I was so skeptical that I’d ever hear her giggle again.

Leann has become my friend. And she’s my real friend. I can tell her anything. I can tell her how scared I am, that I won’t be strong enough to make it though all of this with Faith and she understands. It is so very hard to understand. She has been the mom who lays in bed at night worried about her daughter. Real worries, not the things most people worry about but what if this infection gets worse or what about that surgery we have to have. She gets me, when so many people try, but just can’t.

A big part of what I love so much about the Boullion’s is how the story ends. Yes, that seems so absolutely crazy as I am telling you that the story is ending with all of us losing the woman we all love so much.

Today we took Will & Faith to say goodbye. There were too many people around, so my goodbye would have to wait. As they headed in to see her I stopped to look at the pictures on her wall and her refrigerator. The biggest one was Channon in her pilot uniform with Ed. Channon fought cancer, won, and became a pilot. She’s strong, independent, giving, and happy. So all those sleepless nights Leann spent with her were worth it. They say not to let the tragedy of the past determine your future, but I disagree… I see how Channon is so full of life and I am inspired by the fact that Faith will someday be the same way. Leann did her job with Channon, she didn’t allow the cancer to define her, they fought and they won. Channon is a gift, especially to my daughter, and we have Ed and Leann to thank for her. She also subscribes to the theory of hospital rules are made to be broken, as more than once we’ve gotten many dirty looks as Channon & Faith race wheelchairs down the hallway.

The other pictures were of families and friends and many many children who obviously have been touched by Leann, Ed, and Channon. Hundreds of different faces. Some not with us any longer, some still here. And because of my first hand knowledge of the family and their work, the number of people who they’ve touched is more like thousands.

So my angry story of this not being fair, and that good people deserve better has changed. I look at that wall and consider the fact that their daughter had cancer. They used that experience to enrich the lives of thousands of children, because they decided rather then whine about life not being fair, they made the best of the situation they faced. I hate cancer, I hate that Leann won’t be here the next time Faith is in the hospital to hold my hand and to tell me she understands. But she lived too good of a life to think of her life as not being fair.

So when you think of Ed, don’t be sad for him, be happy that he had the kind of love all of us wish we had. That he married his best friend and it stayed that way. And Channon, has been the patient and understands how hard it is to be sick, and she has a mom who was there every night, and loved her more because of the battles they fought together. They will be sad, and they will miss her terribly, as many of us will, but have been blessed to have her beside them, and will for a long while be able to witness the legacy she will leave behind her.

When I told Faith that Leann was going to die, she became very quiet. She told me she was worried about Channon and how sad she was going to be. She asked if we would still see George (what she calls Ed for some reason). She was silent for a few minutes then said, “It seems the longer I go, the more really good people I know in Heaven” more wise words from my little Faith. We love you Leann, thank you for making our world a better world. Faith told me today, now instead of holding your hand while I’m in surgery, she’ll be in there with me….

Cure

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There’s this unwritten rule in the world of chronically ill children. If your having good health you don’t talk about it. The nurses at the hospital, the other parents, the doctors, even the kids themselves. It’s as if you can somehow jinx the health they are having, the fact that they’ve been hospital stay free for a few months, the fact that it hasn’t been bad enough to take the drive in to see your doctors. I’ve personally adhered to this rule. Not because I believe in luck, because I really don’t anymore, and not because of the fear that in some way they’re all right. Its more that I don’t really feel like staying out of the hospital is enough. That the health she is having is a big step in the right direction, but its just a step. So I will say to no one, Faith is doing great. I will say she is doing better, but she is far, far from great.

Tomorrow night we are attending the Woodson, Griese, Hutchinson Gala at the University of Michigan. It is a fundraiser for Mott children’s Hospital. Last year, Faith was the guest of honor. She was featured as the Charles Woodson Research Foundation child who has a disease for which there is no cure. Last year she was given a pass by her doctors to attend, she had just had most of her colon removed and she had to have another surgery before she was able to be discharged from the hospital.

I remember being skeptical that it was a good idea for her to attend. They had to change her TPN schedule, and I was worried that she would get to tired. That morning Charles came to see her in the hospital, I knew from that moment it was going to be a great night for her. She had an instant connection with Charles and after a a few long weeks in the hospital she was finally starting to act like herself.

The night, was magical. Matthew Stafford and his girlfriend Kelly B. Hall sat with us that evening and literally gave my son a whole new outlook on having a sick sister. He had a new attitude, a new friend, and thanks to that friend a trip to Chicago to learn all about Monday Night Football. The night was as good as it gets.

As magical as the night was, I left that evening and went back to the hospital to face the reality that we deal with everyday. And I considered the event and the money that was raised for research. I remember wishing that night that Faith had a disease that wasn’t so rare. So that I could feel more hopeful for a cure for her.

That was a year ago. And this past year hasn’t been easy. We have learned that Faith needs 2.5 liters of fluid daily to stay healthy. That she needs to stay away from anyone who has a virus, and that she has to stay home when there are sick kids at school. We know now that she can handle about three hours at a time of school, and often that seems to be a stretch. We know that she can’t handle regular illness like the rest of us so we do everything we can to keep her healthy. We know that she needs fluids, or tube feeds every three hours, and that her continuous pump seems to cause more trouble than bolus feeds. We know that she has chronic yeast infections, that are painful and so very frusterating. We still have to do wash-outs and she still after all this time hates them, but is mature enough to understand it is one of the big reasons we are able to be out of the hospital. We know that there is absolutely no rhyme or reason to her ostomy explosions and her stoma doesn’t care if shes home or at school. We know that some days shes just too tired to do anything, and so those days, she rests, because if you push her thats when she gets really sick.

It’s so hard. Taking care of her is the hardest job I’ve ever had. Not because of the work, but because you can’t ever let your guard down. You can’t sleep though feeds, you can’t miss fluids, you can’t skip a wash-out no matter how she pleads.

Shes so very strong. She hates her disease. She hates that she is dependent on a colostomy bag, and a feeding tube. She often says, I just want a normal life. But she is so very strong. Last week she told me she wants to get an RV and drive across the USA talking to kids about loving themselves and having good self esteem. She says, if I can love myself with all of this….everyone can learn to love themselves. The fact that she loves herself, just as she is, is such a lesson to me, & everyone around her.

But I want a cure. Not a treatment, but a cure. Last week she had a check-up and her surgeons are thrilled that she has been doing so well. Near the end of the appointment, almost as we were getting ready to leave the doctor who has been there from the beginning with us, said that they have started research on diseases of the colon similar to Faith’s disease. That they are hoping to find a cure. Right here, at our hospital, Faith’s doctors, who said they were inspired by Faith.

Her doctor who knows me very well at this point, couldn’t have realized that her words made me lightheaded. That I suddenly felt as if I couldn’t breathe. Yes, at this point they are working on rodents. But this is The University of Michigan, and some of the most brilliant doctors in the world are working on a cure for diseases, not unlike my daughters disease. A cure that would certainly change Faith’s unclear future.

So as much as the Woodson event meant to me last year, this year its seems to mean so much more. I want to walk around and introduce my daughter to everyone there, and show them where there money is going. I want them to see the face of the child they are fighting to find a cure for. I want them to understand how much she deserves to be well.

Tonight, I was telling her she would get to see Charles tomorrow. I was telling her that the money raised tomorrow could go towards Dr.Newman’s and Dr. Teitelbaum’s research to help find a cure for her disease. She smiled and said, Mom I can’t wait to see Charles, but what about MIra and Faith? Mira was the other patient featured last year, and Faith is our good friend from Mott who has Cystic Fibrosis…I told her that neither of them would be there. She seemed to be frustrated with me that I wasn’t understanding her, she continued by giving me yet another life lesson…I’m glad they are trying to cure my disease, but we can’t let them forget about my friends, they need a cure too.

These kids who have faced extraordinary obstacles have developed character that surpasses that of many of the adults that parent them. Faith will continue to do extraordinary things, whether a cure is found or not, I just happen to believe that she deserves the very best life has to offer, in the very best body we are able to give her.

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Havannah

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Faith’s best friend moved to California. In the weeks leading up to the move I could tell it was really rough on Faith. But I also kept reminding myself that she has lost a few friends due to illness in the past couple years, so a move we could handle. As the night of the goodbye approached I realized that this friendship, wasn’t the typical first-grade friendship, Havannah and Faith had something special.

Havannah’s mother told me she was sorry that they had decided to move. That they had seriously considered not making this major life change because of Faith. That she had dealt with so much in her short life, that she didn’t need anymore heartache. I contemplated whether the friendship in the end was a positive or negative for Faith, that it was one more loss and I wasn’t sure the pain was worth it. But the more I have learned about their friendship the more I am assured, the love was well worth the loss.

It may seem a bit silly that at seven years old you could find someone that you would consider a forever friend, but that’s what happened with these girls.

Faith is small. She wasn’t growing when she should have been, and her body doesn’t do what a normal body does with food. She’s most always the smallest child in the class. Havannah is tall. In fact, I am pretty sure she’s as tall as Will. When they are next to each other, Havannah looks like the older sister. What I have come to learn from Faith is that’s also how she acts, like an older sister.

The week before Havannah left, Faith asked me, Who is going to make sure I am safe when Havannah is gone? What I have found is that Faith’s belly is something the other kids at school are interested in getting a look at. Really, you can’t blame them. A colostomty bag isn’t something they are familiar with and they are just curious. Then there’s her feeding tube, and her apendicosty. Interesting stuff, and knowing the children at Faith’s school, it’s sweet innocence. But, Faith is far from the point of feeling like she can share her troubled belly with the world. It’s embarrassing to her, and she is very insecure about it. Havannah made sure that no one even asked about it. She handled it for Faith, and when I coached Faith on how she could handle it herself, she replied….Mom, sometimes you just can’t handle things alone.

Isn’t that what having a best friend is all about? Not handling anything alone. Once again, Faith is teaching me life’s lessons. This illness of my daughters has changed so much of me for the better, but there are things it has changed, that aren’t so great. I have always been a highly independent person, but very in touch with my best friends and telling them how I felt about everything important. I would say that is what has changed the most. I only tell certain friends, certain things now. There are a few that I share more with but for the most part, the really hard stuff that keeps me up at night, that makes me hurt all over I keep locked up in my head.

I try at times, to talk. But it seems there is not much anyone can say that can make me feel better, and depending on who it is I am talking to, the fear, the worry, and the helplessness I feel makes them feel just the same. And it leaves me wondering was the conversation even worth it.

Which leads me back to Faith and her insightful words about Havannah, sometimes you just can’t handle things alone.

She’s been gone nearly a month now, that’s four weekly dinners, many days of school, and lots of time out on the playground. Today Faith spent an incredible day with a family that loves her like she is their own. She told me tonight that it was the best day she’s had since Havannah has left, I asked her what is it you miss so much about Havannah? She lifted her shirt up and made a circular motion around her belly and says….Mom, Havannah doesn’t even see this.

I am so thankful that Havannah understands how to love so deeply at such a young age, and I am even more thankful she picked Faith to be her best friend. True friendship is all about knowing exactly what it is that your covering up, and loving you anyway.

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