just one day


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.


Be a Woodson


 Be a Woodson

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?

It’s a marathon



 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….

God is present here


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.




happiness hurts


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……..


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.





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!

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