myfaithsjourney

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.