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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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
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….
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.
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.
Faith just turned seven. I actually can‘t believe she‘s seven. It seemed she was just turning four. I think the last few years have been so tough that they seemed to go by in such a blur. On my birthday, as I was blowing a candle out on a dessert she made me she asked me what I was going to wish for. I‘m not much of a wishing person anymore so I told her I wasn‘t sure. I asked, what are you going to wish for when you blow out your candles? Her response, has left me searching for something I can‘t seem to find. Something that makes me feel as if I am close to crazy. Something that makes me feel lost.
She says to me, I’m not wishing that I didn’t have all these medical problems, god made me this way he must have a really good reason. That night, I was inspired. I started to think about everything she has been though. Everything she is still going though and I was in awe that she could have such a strong faith that she feels that this is all happening to her for a reason. That night it made me feel warm. I felt like god had reached down and held her up, to say something so full of such unwavering faith.
Since that night, my feelings have been different. Since that night, I’ve been searching for gods reason why. Living with a child with a chronic illness is something that will test your faith in everything you come into contact with. It challenges everything you do. It makes you reassess everything that means anything to you. And above all else it challenges your faith in god, and the ability to understand how suffering and child could go hand and hand.
What I am starting to realize is we don’t get to know why. For some reason, the why isn’t something we get to understand. I remember after my dad died, so many people would say there was a reason for everything. It infuriated me. Yet, as I look at my imperfect little Faith I think there has to be.
So for now, I say she is here to add Faith to the lives of others. That when you look at a child that suffers the way she does but believes with every thought in her heart that she was made this way for a reason, and that god has something planned for her how can you lose faith over little things? She has a plan. She wants to make the lives of other kids like her better, she wants to teach them about being brave and having faith. She says she’s going to make kids everywhere realize what they are capable of doing even if they’re sick. She’s seven. And she has found this faith in the very difficult life she’s lived.
As for me, I don’t know how. If I was able to put aside the worry of keeping her healthy, if I could escape the fear of what is to come, If I could find the answer to how to be the mom of a little girl who’s special beyond her knowledge, then maybe she won’t catch on to my doubt. Because, when its 4am and she’s screaming and crying that she’s in pain, and nothing is making her feel better its really impossibly hard to think there’s a reason for all of this.
Yet, at 4am when she is screaming and crying I am usually down on my knees praying that whatever it is that is making her hurt goes away. I’m asking for strength to get though the night, and I’m asking for guidance to make the right decisions. And I am begging that she doesn’t catch a glimpse of my weakness, because I am the one that’s feeling lost, she knows exactly where she is. She’s just waiting. Waiting to understand gods plan, and his really good reason for all of this.
Faith is sick. She’s got a cold. But with Faith a cold is never just a cold. A virus of almost any kind sends us to the hospital, but this time we seem to be doing a better job managing her health at home. Now I am constantly second guessing my decision to take her in, but we’ve decided for now we will continue to do everything we can to keep her little body stable at home. It’s lots of fluids running through her feeding tube and constantly monitoring her output from her colostomy bag. It’s a numbers game, in verses out. Right now the numbers look okay.
This evening she looks at me while I am cleaning her feeding tube site and says, “Mom, I am ready.” My response is quick, because last night she thought we needed to head in to the hospital, and we did just fine. I told her we were going to stick it out. That if we could get past our first virus without an admission it would be such a huge accomplishment for both of us! She sat up grabbed my hand and smiled. “Mom, I’m not talking about going to Mott. I’m talking about when Jesus comes for me, I’m ready.” My response was quick, and not so loving…YOU are not going anywhere.
As I tried to stand up to leave the room I felt like someone had tackled me from behind and knocked the breath out of me. She called after me as I left the room, “it’s just important that you know mom, I am ready.” I went into the bathroom and started thinking as fast as I could about something besides Faiths proclamation. Cabrera just won MVP…so exciting, well it was, but suddenly the MVP that I’ve been anticipating for a couple of months now, is not able to distract me from this thought. WHY is Faith even thinking about Jesus coming for her…why.
She’s asked a few times, when she will know when it is her time to be with Jesus. Then she had this horrible infection in her blood, she was terribly sick. After that infection she let me know, that it wasn’t her time yet, and when it was Jesus would be back for her. I hated every single word of that conversation. I would so rather be completely naive to that fact that my daughter at six years old is facing mortality straight in the face. Maybe that makes me weak, but she’s my baby, and these thoughts are always in the back of my mind. She faces it, then minutes later is doing gymnastics on our living room floor.
The reality is we are now surrounded by a community of sick kids. She has a friend that is very close to dying. She asks almost every morning if there is bad news…I know exactly what she’s referring to. So it shouldn’t come as surprise that she’s thinking about death. But it doesn’t get any easier to handle. Sometimes I feel like the only people who understand me are the other moms that are dealing with a sick kid. They understand. They understand that sometimes it takes everything you’ve got just to care for your child. They understand that stress isn’t about getting all your Christmas shopping done, it’s wondering how you’ll handle Christmas at all. They understand that you change. That as much as you want to be the sports loving, wine drinking, bonfire throwing, fun mom, you’re not anymore. Suddenly MVP celebrations are ended with thoughts of your daughter thinking about death and assuring her mom that she’s okay with it.
We’ve changed. But if you would ever believe this I believe we’ve changed for the better. Yes, I miss my easy life. I miss sleeping for more than 3 hours at a time. I miss working, and I miss not worrying about every check I write. I miss bonfires, and wine. But what I really miss is having crazy dreams for my baby girl. You know, when you have a child you want them do it all. Now, I dream of her being able to go to school for a whole day or staying out of the hospital for six months. I miss the crazy dreams, the you can do anything you want Faith, dreams.
So how, have we been changed for the better. Dealing with all of this, how could I be thankful? I understand that life is a gift. I understand that we don’t decide when that gift will be taken from us. We live so differently. I am thankful for it all. And so are they. They are not your typical six & nine-year old children. They understand that and they love each other, so very much. And they love me, more than I ever imagined I would be loved. We’ve survived so much together, and we are tough. Yeah, so maybe Faith is the toughest of us all, and maybe someday, I’ll have the faith she does. For now, I’m just holding her tight, and reminding her, the only place she needs to be ready to go to is school. Hopefully, for a full day.
I used to work at Walt Disney World. The most magical place on Earth. The place where fairy tales come true. I went to work at Disney World because I was a believer in magic and wishes and happily ever after. I believe I was born that way. A believer in all things good, and that wishes would come true if you wished hard enough. I wished at every wishing well, fountain, 11:11, heads up penny, shooting star, first star of the night, and every birthday candle I ever blew-out. I was a believer. A spread the word kind of believer. I believed that my wishes would come true and I would live happily ever after.
Last week, we took our summer vacation, not to the most magical place on Earth, but to Will and Faith’s grandfather’s house. That’s where I was when I realized it. When I realized I no longer think about happily ever after. I realized that I’ve totally quit wishing. I’ve realized that some days I’m even afraid to pray.
There’s an outdoor mall near where we were staying that has a total Florida feel. Both the kids commented on the fact that it felt like we were in Orlando. Will was in a hurry to get to the candy store before it closed and as we were rushing to the store we went past a beautiful fountain. As we were going past Will commented on the fact that we used to throw a quarter in fountains for extra special wishes. He said, I know we don’t really do that anymore, but I remember when we did. Will is a very sensitive kid, so I am certain he noticed the look on my face when he made this statement. So much so that he quickly commented, he was sure the owners of the mall just put those fountains there to get your money, so its good that we quit throwing our money in there.
I was quiet the rest of the night. I was trying to remember the last time I had made a wish. It had been a very long time. Too long for me to remember. I was so sad that night, sad that magical part of me had changed, sad that I was influencing my son from wishing at every chance he got. I’ve thought so much about it since that night and why I quit wishing. The answer is really quite simple. It’s not that I’ve given up hope. Because I have not. But my wishes have changed. I can no longer wish for Wolverine Victories or Kate Spade handbags. I can’t wish that we can squeeze in one more vacation before the end of the summer or that my best friend can fly up from Florida. Now the things I would wish for make me hold my breath, not because I am about to blow out 38 candles, but because if these wishes don’t come true, there is no happily ever after.
Faith has been out of the hospital a month today. Ironically, she’s had a bad few days but hopefully we can turn things around here at home. She has a bad infection on her skin, and she’s pretty uncomfortable. Her output from her ostomy has been high and she’s just very tired, all things that can lead to a hospital admission. The regime that we have her on at home isn’t easy. At night I have to get up every 4 hours to give her medicine and to change the fluid in her feeding tube bag. She is hooked up to a pole 13.5 hours a day and she gets fluid bolus every two hours when she’s not hooked up. It’s not an easy schedule to keep, but it’s keeping her home.
I went to dinner with a dear friend who happened to become a priest. He explained to me that childhood illnesses are so much harder on the parents than on the kids. He explained that they don’t know any different, but as a parent we do. Suddenly, our lives are nothing that we had wished for. Our children’s lives are not at all what we had wished for. We have to give up on the life we had expected to have and accept the new life that we are living. He said to write it down, the life that I had wanted, and then realize you have to let it go. I tried, I scribbled out two sentences, just two, it was as far as I could go….giving up on my dreams is one thing but he realization that I have to give up on some of the dreams I had for my children is something, I still am not ready to do.
This afternoon Faith pulled an eyelash off my face, she held it out on her little finger and said, Mom make a wish. I declined and told her she could have my wish. She closed her eyes and scrunched up her nose…I wish I was Gabby Douglas. She then ran to her room and put on her swimsuit. A few minutes later she is doing somersaults off the couch in the livingroom and throwing her hands up in the air as if she had just won the gold metal in London. Faith will never be an olympic gymnast. But with any luck, she will be a mom who gives her kids quarters and tells them to wish for the world.
I have somethings to say. Chances are if you are reading this blog you are not one of the people who need to hear this message but it’s something I have to get out of my head.
Just be nice.
That’s it. Really, you can stop reading right there if that is enough of a message for you, but if it’s not I’d ask you to read on.
I am to the point that I don’t really remember Faith feeling good. It seems that we have been dealing with her feeling sick for her entire life now…and that is something that makes my everyday happiness a real struggle. We have hours of great health, times where she is feeling great, but mostly, she’s dealing with pain or dehydration most of the time. We’ve got the nations finest doctors working on it, and I believe we will come to a point where she is feeling good more than she is feeling bad.
I can’t begin to explain the helpless feeling I have when she is in pain, and she’s screaming, and crying, and I try every trick I have to relieve the pain, and escalate her pain meds until I reach narcotics and finally give in because I can’t bare to see her face when she is so uncomfortable. She can’t sleep, she can’t talk, she can’t move, she just screams and cries. I am usually pacing back and forward debating calling an ambulance or throwing her in my car and getting her to the hospital. Sometimes the pain subsides and we are okay at home, other times it does not and we have to go to our second home at Mott Children’s Hospital. Last night was one of those nights, I was up until 5:45am she was moaning most of the night and I kept getting out of bed to check and see if she was still okay.
Working on hardly any sleep we asked the kids what they wanted to do today, Faith said she wanted to go see Brave….a movie that from the moment the previews came out has made me think of my brave little Faith. One of the lines on the trailer is, “if you could change your fate, would you?” I am a glass half full person, I have always been thankful for all of my life’s experiences. I have never wanted to change my fate, but I have thought a great deal about if I was given the option to change Faith’s fate. We agreed to take the kids to the movie, even though my head was pounding. You see, I know Faith and what I can tell is we are likely headed back to the hospital. She has made a progressive decline in the past few days, and I have been unable to turn things around at home. We needed to get to this movie, because there were others we’ve missed because she was admitted when they were out.
So we went, and watched, and I loved the fact that she was totally focused on the movie and not her health. That’s something that doesn’t happen very often. So then, the reason I tell this story is a family in front of us stopped us after the movie and said we had ruined their movie because I had kicked the chair in front of me and my daughter was talking. They were not at all nice about these facts, they were rude and very confrontational. Chances are I did kick the seat in front of me, not that I recall kicking it, even once, but honestly there are days I stand in Meijer and can’t even remember why I am there. Anyone that knows me, would know the last thing I would ever do is purposely make anyone uncomfortable. And Faith, well is Faith and she talks all the time, but she didn’t say much except for, mommy hold my hand, I’m scared. Yes, I am a bit caught up in my daughter’s happiness right now and the fact that she is in a movie theater and not sitting in a hospital bed. She said maybe 20 words total, at an afternoon showing of a rated PG animated Disney movie…go figure you may hear a kid say a few words.
What would have been nice is for the family (two 17 year olds, a 50 something mother, and a 10ish year old girl) to turn around and say, you keep kicking my seat, because I promise you I would have been so embarrassed I wouldn’t have done it again. Instead they wait til the end of the movie and get nasty. So the topic in the car on the way home instead of how important it is to be brave, is how some people are just not nice. Four hours later Will is still talking about the people at the movie.
I really, wish some people could learn how to be nice.
Once we were at Crisler Arena watching a basketball game and Faith had a fever. We stripped her down to just a t-shirt, the man behind me went on and on about how I was a horrible mother, allowing a sick child to be at a basketball game. That I should have my children taken away from me. Will heard that, and started crying and didn’t stop until we got home an hour later. Faith gets fevers all the time, usually they mean absolutely nothing, and she wanted to stay at the game, the day before she was being admitted to have another surgery.
One afternoon Faith was on a pass from Mott and we took her out to lunch for pasta. She had a neogastric tube placed in her nose that ran down to remove the contents of her belly. This was before she had her feeding tube placed, and also the #1 deciding factor on why we had it placed. The woman who brought out the food, from across another table, said, OH my god, it looks like you have spaghetti coming out of your nose. I let her know it was a feeding tube, but she quickly went to get a busboy to show him how much it looked like spaghetti. We walked out, Faith was crying, and we haven’t been back to the restaurant ever since.
A woman at Target told me I was disgraceful for bringing Faith into the store because she had seen her throwing up in the parking lot, and how dare I put all the other children at risk to go shopping. Faith throws up all the time, she’s not contagious.
Faith has to ride in a stroller rather than walk, because she sick, not because she is lazy, but more often than you could possibly imagine, people tell her she is too old for that thing.
When dressed Faith looks like a totally normal healthy child. You would have no idea that under those clothes there is a body that’s broken. You would have no idea the struggles she goes though EVERY SINGLE DAY. One of my girlfriends wanted to have a card printed up that said, Faith has a non-contagious disease that she suffers greatly from, mind your own business and have a nice day. (Actually, her words were much more harsh, but this is all about being nice) She was with me once when someone was staring at her colostomy bag that had somehow gotten caught on her dress and was in plain sight for everyone to see. We were working on fixing it, and rather than act as if she had seen nothing she stood there looking at Faith with her hands over her eyes, because she was clearly, very embarrassed.
Then there is the countless people who comment on how small she is and that she looks nothing like a 6-year-old kid. Sometimes people jokingly ask if I feed her…Maybe I should tell them, yes, actually I sleep about four hours a night because of the regime we have her on with her tube feeds and rehydration boluses.
I sat on Wills bed for a while tonight before bed, obviously, still bothered by the event at the movie, he said, I wish we could have a sign that says leave us alone, my sister is sick. There are days I think the same thing, but my sign would say, please be careful what you say to my daughter. But should we have to? If everyone could just stop for a minute and realize, everyone is going through something, everyone has the reality of real life stress that they are dealing with. I called my sister-in-law to tell her about the movie incident, but first asked her about her day. She has two sick kids, someone who she loves that she that she is very worried about, post tornado issues, and someone broke into her mini-van and stole their radio, all in a day. Suddenly, my rude people at the movie story didn’t seem like such a big deal.
Faith, has completely let go of the incident of the movie, as I laid next to her in bed tonight I asked her what she was thinking about. She said she was wondering if Russell would have liked the movie Brave. Russell is a friend that Faith lost at Mott last year….Another lesson in life, from my 6-year-old daughter. Life is so much bigger than this. Just be nice.
Our last admission at Mott was possibly the hardest. Faith had three trips to the OR. We were in isolation. She had all but a few inches of her colon removed and she went seventeen days without being able to have anything by mouth. We were there a month. The longest month of my life.
One afternoon I was checking my email and I saw that my blog had a few comments. I hadn’t posted in a while so it seemed strange to me. I checked the comments and there was a message from a woman who only identified herself as a mother of a girl named Ashley who had the same issues as Faith. I was very skeptical. Really, no one had the same issues as Faith, she asked if I would please call her. A few weeks earlier I received a similar message on Facebook from a Grandmother of a four-year old boy who had just died of Hirshsprungs Disease, a disease much like the disease Faith suffers from. I contacted this grandmother via email and she told me that her grandson had died and they were just looking to share his story with me, in hopes that possibly they could help Faith somehow. I was grateful, but honestly it came at a horrible time and really just scared me more than anything.
Ashley’s mothers message came at the perfect time, I just learned that we were going to be discharged within a few days, and I was in a fantastic mood. I had the hospital operator connect me, so that she wouldn’t have my cell phone number. The phone rang twice and I decided that if it rang four times I would hang up, that possibly we were not meant to speak. Ring three….A woman with a very strong southern accent picked up the phone. You would think that conversation would be uncomfortable at first, calling someone I didn’t know, but instantly we connected. She asked how Faith was doing and understood everything I was telling her. She understood malabsorption, and told me what great success they had with Ashley’s GJ. She understood our worries of blood flow and new issues we were having with SMA Syndrome. If I had any doubt that this woman was not who she said she was, it was gone, she knew it all. A mother who had spent years dealing with what we were dealing with. We spoke about Faith for twenty minutes and I was thinking how great it would be for Faith to meet Ashley. A teenager with a colostomy bag, and feeding tubes, just like her.
I then asked Ashley’s mom what seemed to be a very appropriate question. How is Ashley doing? The minute of silence that followed that question made the answer completely clear to me. Ashley had died. She was gone for a year. She, like the four-year old, had got an infection and very quickly died. Something to do with sodium levels.
In my professional life I used to teach classes on building relationships, teams, doctors, nurses, I used to pride myself on knowing how to talk to anyone. Suddenly, there wasn’t a single word that seemed appropriate. All I could think to say, and what I find myself saying more often than I would like, to the other parents up at Mott is, I don’t understand. I then asked if there was something I could do for her, I didn’t really understand what that would be, but I felt as if there had to be something she needed from me. But there wasn’t. She asked if there was something she could do for me. Yes…I thought, tell me what you did wrong, where did you let her go, who was she with, did you let her go to school, what about public places with lots of germs, what about flu season, what did she eat, and what happened that in twenty-four hours your daughter went from good to being gone. I had everything to learn, I could protect Faith, I would not make the same mistake. Her answer would change my life, it would change how I do everything. But my question came out, in a much different fashion. What would you do differently? Her answer, is changing how I do everything.
She said. “I wished I would have stopped waiting for the storm to pass….because it doesn’t. I wish I could have learned how to dance in the rain, because Ashley missed out on a whole bunch of dancing.”
Our conversation ended at that point, mostly because I started crying and was unable to speak. I thanked her for contacting me, and for having so much courage. I told her that she and Ashley were going to be helping Faith, because Faith loves to dance and I am always turning off her music.
As a parent you want to protect your children. You want them to be safe. But what happens when you can’t protect them. A stomach virus, flu, or any other regular infection puts Faith in harm’s way, and immediately back into the hospital. Faith is a chronically ill child, three-quarters of her immune system is in her messed up digestive tract. In kindergarten kids get sick all the time…So, how do you decide? How do you decide what to do?
I have thought about Ashley everyday since I spoke with her mother and I keep asking myself are you waiting for the storm to pass? It’s going to take some time to learn how to dance in the rain, I’ve lived my entire life waiting for the storms to pass, and it has been a very scary couple of years with Faith. But I know that when I look back on Faith’s childhood, if all I have to hold on to is hospital stays and her illness, I will be sad for her, because she deserves more than that.
This afternoon I was looking for airfare to Orlando, a place we used to go all the time. She said, Mom are you going somewhere? I said, hopefully we are all going to Florida. She said, Mom Florida is too far away from Mott, we can’t. I reminded her that I made her a deal that when she was all better we would go to Florida to see Auntie Barbara, Avery, and Mickey Mouse. She says, But Mom, I am not better and I don’t think I am ever going to be better. So just forget it. And she walked out of the room.
And that is how I decide. Six year olds should aways want to dance in the rain, I am just going to have to show her how.
Ashley’s mother didn’t have the magic solution to keeping Faith healthy, but she did have the solution to keeping her living…Life isnt about waiting for the storm to pass its about learning to dance in the rain.