I have a little faith

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.

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Someday

Someday I will tell you..that your the strongest person I know. that grandpa was wrong about me, that you are the toughest kid there is.

Someday I will tell you that we couldn’t walk down the hallways of Mott without everyone saying hello to you. That even though you were tiny, you ever went unnoticed, and once there was a mother who told me you were the reason she knew that her daughter could handle her illness because hooked up to 8 different pumps you looked at the lady and said, “eh, it’s not so bad”

Someday I will tell you that those Athletes all loved you, and were far more impressed by you than you were by them. One of your favorite football players once told me, There is something really special about your daughter, she inspires me.

Someday I will tell you that when you got discouraged you would look at me and say, Mom this is not the life I want, why did god choose this life for me? But if you noticed that I was discouraged you would tell me how lucky you were to have me as a mom.

Someday I will tell you that you were in a commercial for Mott, and you got paid $600.00 and when I asked you what you wanted to do with the money you said you wanted to buy an American Girl Doll for yourself and a new car for me, and with whatever was left over you were pretty sure you could get Will a XBox game.

Someday I will tell you how scared I was. That everything about me changed when you got sick. That I couldn’t concentrate anymore on anything because I was always too worried about you and if you were going to be okay.

Someday I will that you that your spirit is something that everyone talks about, because through all of this you only allow yourself to get down at moments that most of the time you are strong and happy.

Someday I will tell you how much you missed your brother, that if someone asked about him you would take a big gulp and answer but often your eyes would fill with tears because you missed him so much.

Someday I will tell you that I am so impressed with the relationship you have with your brother, that the two of you are so sweet and kind to one another, and that you don’t fight like most brothers and sisters do, that you are thankful for each other at every moment.

Someday I will tell you how strong your brother thinks you are, that he is amazed at what you deal with when he is unable to even watch when you are having things done without feeling like he’s going to cry for you.

Someday I will tell you how sad you were when you realized you lost a friend from Mott, that you asked questions about god and how he was able to decide who stayed here and who went with him.

Someday I will tell you that sometimes I lay next to you in bed at night and cry when I look at your tubes and pumps and colostomy bags, because I am so sad that you have to deal with all of this and I feel that your life should be easier.

Someday I will tell you that people all over the world are inspired by your faith and your faith is the only reason we’ve made it this far.

Someday I will tell you that I really didn’t have a plan like I told you & Will that I had, that I really have no idea how we will make all of this work but I knew it would be okay because we are together.

Someday I will tell you how worried I was about you meeting your Prince Charming, until I met a man who loved a girl with greater medical issues than yours. And he assured me there would be a prince for you my princess.

Someday I will tell you that I pretend like all of this is really no big deal, because I want you to face it with that same sort of attitude.

Someday I will tell you about the people of LOTWA & Shalom who hardly knew us, but quickly became like family. Who made me believe that alone wasn’t the best way to battle this illness.

Someday I will tell you that most people
can’t handle this for the long haul. That very few people have what it takes to make it through this with us. But it’s okay they all still loved you.

Someday I will tell you you’ve got the greatest grandparents you could’ve ever asked for. And that it’s hard on them too, but they would do anything to make this all better.

Someday I will tell you that every night I thank god for another day with you & your brother. Because being a part of the Mott family makes you realize every day is a gift.

Someday I will tell you thank you. Thank you for being you and for letting me fall so in love with you. Thank you for giving me every reason to be thankful for every blessing gods given me. Because of you, I look for the blessings in everything.

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changed…for the better

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.

wish i may

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.

 

just be nice

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.

 

We will be dancing in the rain

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.

Matthew Stafford…from the Inside Out

This journey has totally taken its toll on me. I have aged, I am out of shape, I am tired, I am scared, I am angry, and I am so sad. When I think of what it has done to me, I realize having a child with a disease that has no cure, takes a toll on the entire family. So for us that family, includes my son Will, someone I don’t say much about, not because there isn’t much to say, but because thinking about being away from Will does something to me that is hard to put into words.

When Will was born he was in the NICU, he couldn’t eat and drink and breathe at the same time. He was there for a couple of weeks and every night when we left the hospital I would cry the entire way home from the hospital. I swore to myself, once he got out of the hospital, I wouldn’t leave him over-night again until he was ready, and I didn’t, not for three years, not until his sister was born. I’m not sure if it was the separation at birth or just some kind of special bond between the two of us, but we stuck together.

There isn’t a bad thing I could tell you about my son. He’s special. Every teacher he’s ever had has told me this, my friends tell me this, Faith tells me this. He is an amazingly selfless little boy. He is kind, and caring, and he loves people in a way that is indescribable. After his father and I divorced he asked me, do you think you will ever get remarried. My honest answer was, if I can find someone who loves me the way you love people, I will.

Will is moments away from tears at every moment of every day. He misses me and he misses the life we used to have. Monday Movie night, Tuesday taco’s, Sunday fun-day. We stuck together. We were a strong little family, really we still are, just in a different way. At night when I tell him good night, he tries hard to hold it together, to be tough, and not cry…and usually he does okay. Little does my boy know I hang up the phone and go into the bathroom and cry, almost every night. One of the moms told me it gets easier, its been many days, its doesn’t.

What is most amazing about Will is he never ever complains, he never asks me to come home, he never gets mad at his sister. He is graceful and accepting. Before Faith got sick, I was working, money wasn’t something we had to worry about, we vacationed all the time. Chicago or Orlando…that’s where we went. Will loved vacationing, and often talks about the great times we had. But he never, ever complains about how much our lives have changed. We used to have a really nice car a new Expedition, now I drive a car that is ten years older than he is, and it has no TV…and it looks like a car a grandma would be driving, one day his friend asked why his mom was driving that old ugly car, Will replied, because I loved it, so she traded our other car for it. When he got in the car he apologized on behalf of his friend, and said, I am just thankful we have a car.

I could not be more proud of him. But I worry. I don’t want Will to remember his childhood as years of being separated from his family. I need him to make happy memories. Last night, is a night that he will remember forever. And it will never, not ever be erased from my memory. It was a night that was supposed to be all about Faith, funny, for me the greatest impact was how my son was effected by the evening.

Faith was asked to represent Mott at the Woodson, Griese, Hutchinson Champs for Children Gala. Charles Woodson has a research fund that raises money for research to find cures for kids like Faith. It was an amazing evening and Faith did a great job. She was the star of the event, even though we were surrounded by celebrity athletes. I was very proud. But, there happened to be another star sitting at our table that night, the quarterback for the Detroit Lions, Matt Stafford.

If you know anything about me, you know I think being a celebrity or an amazing athlete doesn’t make you a star. Being a star is about who you are…not about what you do. Sure, when you look at what Matt Stafford did on the field last year, it would be hard to find someone who wouldn’t call him a super star athlete…but in my eyes, stars are made from the inside out, and rest assured Lions fans your quarterback is as much of a star inside as he is on the outside.

At the beginning of the evening a very beautiful young woman sat down at our table, she introduced herself as Kelly. Faith was immediately in love. After the athletes in attendance were introduced Matt Stafford came and sat next to her at the table. Immediately, Will’s entire disposition changed. Suddenly, there was life in my sons eyes, and a smile, a really excited happy smile that I had not seen for months.

Right away Matt could tell that my son was a fan, he stuck his hand out and introduced himself. The next hour or so Will asked all kinds of questions, who do you like to throw the ball to the most, did you ever play other sports, at one point they were talking about candy. Matt’s girlfriend had Faith just as engaged, they talked about nails, and dresses, she was delightful. Beautiful inside and out.

Part of the Gala included a live auction where there were big ticket items raffled to the highest bidder. I noticed my son pointing out a package that included a trip to Chicago with tickets to a Monday Night football Game to see the Lions and the Bears a package donated by Mike Tirico. Dhani Jones was the auctioneer and asked Stafford to beef the package up by adding some tickets to the game. He agreed and the bidding began. Will was excited to see who won the package and watched intently to see who was going to see his Lions play in Chicago, suddenly, the Lions own quarterback began bidding on the package, Dhani teased about being able to watch and play at the same time, saying I know you were good last year, but man that is talent. I assumed he was driving the price of the package up, all the money goes to Mott, I thought it was incredibly cool of him. As the bidding continued he wasn’t backing off…he was in it, he wanted to win that package, and had I known why, I’m certain, I would have been in tears. Somewhere in the $15k range Matt Stafford was the owner of the MNF package, the crowd laughed, but moments later, that same crowd would be giving the Mott newcomer a standing ovation. As he won the package he turned to Will and said, there you go buddy, you go to Chicago, and take your family. The look on my sons face, I will never forget. His chin began to quiver, he was about to cry. He quickly jumped up and gave Matt a hug, and thanked him over and over again.

Word traveled quickly to Dhani and the great news was shared with the rest of the crowd. Everyone was pretty taken back, an incredibly generous gesture for a young man who clearly understands giving back to his community. But, what I am certain the rest of the room didn’t understand is this… Matt had asked Will to look at the auction items and tell him what thing he would pick if he could pick one. He set out to make a difference for Will, someone who suffers so much loss from Faith illness. Someone who is so often is overlooked in this mess.

That entire night was about Faith, and about children like Faith who deal with illness and fight for their lives everyday. No one could have missed that. What wasn’t as easy to see, and what people who are in my every day life often miss is how Will is no less effected by Faith’s illness.

Quarterbacks are probably the most influential player among all team sports in the success or failure of the team. I think they have to see it all…Detroit Fans, your Quarterback, he see’s it. He was able to give Will a night he will never forget. He was able to heal some of the hurt, and give Will something to look forward to.

I wanted to tell Matt Stafford how touched I was, I wanted him to understand the impact he had on Will. I wanted him to understand his impact on me. There was no way, I wouldn’t be able to, I work really hard not to cry in front of people. And no way could I even begin to tell him now touched I was.

As I said goodnight to Will that night, he was teary. I said, It won’t be much longer we will be home, he said no Mom I just don’t want this night to end, it’s the best night of my life. When we got off the phone, I didn’t need to hide in the bathroom, I didn’t even want to cry. I went to sleep thinking about how happy my son was, it’s been a while since I’ve been able to do that.

So as football season comes along, and you see #9 from the Detroit Lions take the field remember, your looking at a superstar athlete…from the inside out.

Mother Duck

I consider myself a compassionate person. I care for people I don’t know, I worry about injustice, I pray for people who need my prayers. I have always been this way, when I was little I would see an accident and it would ruin my day, I would think all night about the family that might have been effected by that accident. I remember telling a shrink once about that, as proof I was crazy and he said, I don’t call that crazy, I call it compassion.

Yesterday I left the hospital and went on a drive to pick up something Faith needed. Driving anywhere lately I really have to concentrate on what I am doing, because I am so distracted thinking about Faith. Thankfully I was able to see a mother duck and her many ducklings that were crossing a very busy Ann Arbor street. I stood still and watched as the mother lead her babies across this busy street. There was one that was way behind the rest. I laughed at first, thinking it must be the runt of the litter. I took pictures to show Faith. It was a little bit broke in the middle, It would take a few steps, then stop and sit for a minute. So then, I started to think it wasn’t so funny.

I started to be upset by it, the compassionate me kicked in. It was a determined little duck, for sure.  The rest of the family was already over the curb and on its way into a pond as this little duck finally reached the side. I knew what was going to happen, there was no way it was going to make it over the curb. I watched for a few minutes until it looked like it had completely given up. The mother duck had also given up on this little duckling because she had left her baby completely behind. I was totally disgusted at that momma duck and decided to handle the situation myself. I got out of my car and picked the duck up with a piece of cardboard and put him up on the curb. It was squeaking at me, I am sure I scared it. But I was also sure I had saved it. As I walked back to my car, I a man stopped to ask me if I was okay.

I told him about the ducks and apologized for being stopped in the road. He assured me that I wasn’t in his way he was just concerned when he saw me crying. What? I quickly got in the car and wiped my cheeks, he was right, I didn’t realize it but I absolutely was crying. And once I realized that I was I really started crying. That little duck, suddenly made me think of everything Faith was going though, and the ducks mom was giving up.

So compassionate me was crying over a mother duck that had given up on her baby??? What kind of mother duck gives up on their baby? People are always telling me how strong I am, and what a great mother I am, but really, mother ducks maybe can give up, but mothers, don’t, they never ever give up.

My daughter is sick, and honestly, there are days I feel like she’s never going to be better. There are days that I want to beg the doctors to let us out of this hospital, and there are days that I am so thankful that we have such and amazing hospital to be in.

We are in the hospital right now, a few weeks ago Faith had almost all but a few inches of her colon removed. And it has been a battle to get her gut working again, she’s been in a lot of pain and wasn’t able to eat or drink anything for fourteen days…She was feeling pretty horrible not to mention the pain from the actual surgery. One morning, as I was holding a heating pad on her belly and an ice pack on her forehead singing to her, she was moaning and she looked over at me and said, Mom I am so sorry. I know that you really miss my bubby (Will). Don’t you wish you could trade me with a perfectly healthy kid? I assured her I  wasn’t interested in trading her with anyone. Not even my girlfriends son Zack who I’ve been trying to take as my own since he was born. She said, well I would understand because I would trade me if I could.

You hear your child say something like that and it takes the breath out of you. Faith is strong, the staff at this hospital is amazed by her, she has been through so much, yet she is still so resilient. But there are times, when the two of us are all alone, or when she is with youth pastor from our church, that she starts to act like she’s had enough. She asks about going to heaven.  I used to think it’s because she’s seen so much death here, but then she follows it up with questions like, Will I be able to poop in heaven and does Jesus poop? She asks if she will know when it’s her turn to go with Jesus and if her grandfather (my dad) will be waiting for her when she gets there. She asks if there are hospitals or sick people there and if she will be able to see her brother still from heaven. She asked me if I promised to marry her Denny if she wasn’t here anymore. She told me the other day, she thinks if she goes to heaven her belly would finally feel better.

Today Faith went back again to the operating room for a very simple procedure, she came out okay, and then things went down hill. She sits on my lap and says over and over again, Mom my belly hurts. And I promise her that someday we will fix it, that she will feel great, that she will be all better. She says to me, I know someday I will be all fixed.

Honestly, I wonder all the time what all fixed is for Faith. It’s funny, sometimes, I don’t even know what to pray for. It seems to change from hour to hour. I sometimes sneak to the chapel at the adult hospital, it’s the hospital where my dad died, and where I went to ask god, to be compassionate and  take my dad peacefully, because I was worried about my step-mother and brothers.

Now when I go, I just sit there. I can never even formulate a thought or a prayer, but for some reason I feel like  my prayers were answered once there, maybe they will be again. Asking god to take my dad in a peaceful way was easy, his plan for my father was clear, he was leaving us whether we liked it or not, so I felt at least he could leave us without making it any harder on those of us he was leaving. And sure enough his death was as peaceful as could be. But with Faith its different, almost as if I am afraid my prayers won’t be answered so I am afraid to speak.

Tonight, it was different. Tonight, I put my running shoes on and ran to the chapel as quickly as I could.  I finally had words, maybe even a prayer, I knew exactly what I wanted to say…just 6 little words.

I am not a mother duck.

That’s all I said, and I felt like I had finally said everything I needed to say. Now, I wonder if I thought since I asked God to take my dad peacefully that I needed to make it perfectly clear,  I don’t want anyone taking Faith anywhere. That I am not giving up on her. That we can handle what we’re given here together and we will do everything we need to do to make her better and by no means is there anyway I will ever give up on her or wish that my life was normal or less stressful or that I had a different kid that wasn’t sick.

I love my little duckling that’s a little bit broke in the middle, BUT I will never be a Mother Duck.

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I’ve been holding my breath.

I’ve been holding my breath.

Its been a week. A week since we were last admitted. We’ve spent more time at Mott in 2012 than we have at home. This last admission, I started holding my breath and I just realized, at some point I am going to have to exhale.

I used to work in an NICU…a neonatal intensive care unit. Babies, of all sizes, and gestation, I was a human resources consultant. I didn’t know much about the medical side of this, but I knew when babies were really sick, I knew when to be scared. Sepsis, an infection of the blood and one of the words that used to make my eyes burn, I knew when the babies had sepsis it was a really bad thing, I also knew that when they got something called NEC it was also a big thing…this is when the intestines would start to die….two things you never wanted to hear about anyones baby. There was a family once whose baby had both. I remember they made a decision to take the baby home…I was so confused about this. That baby was so sick, why would they ever leave the hospital with her? Then someone explained to me they were taking that baby home to die.

I’ve been scared so many times in the last couple years. Every time they take Faith back to the OR, my mind travels to a horrifying place. I’ve lost count of how many times she’s been in the OR in the last year, over 15…honestly I think its even more, I stopped counting at 12…You worry when they take her back, but you still have an overall sense that she will return, safe and ready to face the next part of our journey.

As you grow older you think about losing your grandparents, and parents, I think that is a natural part of life, but it is completely unnatural to think of losing your child. So you just don’t do it. Until you are forced to go there. I have found that if I hold my breath, I can stop thinking about it…so this last hospital stay the scariest of all…thats what I did. I held my breath and I didn’t let on to anyone, not one person exactly how terrified I really was. Faith had an infection in her blood. And the kind of infection she had been a really bad infection, one that is difficult to get rid of….she had sepsis…sepsis.

Faith has a reoccurring infection in her colon. Its called entrocoloits. She gets really sick when it gets bad and ends up in the hospital. So Faith is on a gut regimen of different antibiotics. Those antibiotics along with Faith’s bad gut, made a perfect breeding ground for a type of systematic yeast infection, that with a little time would eventually travel to her bloodstream, causing sepsis.

On a Saturday morning, just four days after her last discharge she woke up with a fever. She felt horrible. I assumed she had a virus, but with Faith’s condition you can’t take any chances. We went to the ER, they did blood cultures and admitted her. There was not a single thought in my head that those cultures would come back positive…but they did.

She was so sick, and she was scared. She kept saying, “mommy, I’m really scared.” Usually when your kid tells you they’re scared you ask…of what? But I didn’t. I was too afraid to hear what she was scared of. It went on for almost two weeks, she didn’t get out of bed for six straight days…I rememeber thinking maybe I should make a deal with god, but I had tried that before…and it didn’t work. God wasn’t listening to our prayers.

One morning Faith woke up and she kept getting sick, her fever was over 103, she was miserable. I was holding her like she was an infant again and she looked up into my eyes and said, “mommy, doesn’t god know, I don’t want this. I don’t want this life mommy.” Tears were streaming down my face and dripping on to her, she said, “don’t cry mom, it’s not my turn to go with Jesus yet.”

So that, is something you never want to hear come out of your 6 year olds mouth. I hate that my daughter has been introduced to the pain of childhood illnesses and children dying much before they should. I hate that she is thinking about when she dies, because it’s not something a 6-year-old should be thinking about. I hate that she often says to me I don’t want this life mommy.

Almost two weeks from when we were admitted for her infection Faith was finally well enough for Will to come see her. They were so cute together they really had missed one another. Then this alarm was sounding and we had to evacuate to the hallways because there was a Tornado warning. I was texting with my mom, who was at my home in Dexter and she said, I can’t reach Regina. Regina is my sister-in-law, and her and my brother have four children. I figured that my mom was being her usual worried self until I started to hear reports that the tornado’s had touched down in Dexter on the road my brother lived on. I grew up in Dexter & lived almost all of my 38 years there, if the town had been torn apart it was likely, I knew the people effected.

Finally I heard word that my brother and his family were safe, but their house was damaged and the barn that my brother ran his business out of was completely destroyed. As I watched the footage of the storm on every news channel from the hospital bed that night, I remember thinking it would be a miracle if everyone was safe. Many people I care about lost their houses that night, but they were all safe. That night as I went to bed I thanked god, it was the first time in a long time I remember thanking him, for protecting my bothers family and the lives of the people in my little town, Dexter got its miracle.

The next morning Faith had her first negative blood culture…She was still feeling sick , so it didn’t make much sense to me but, I believed the culture. The next few days we fought with Faith to eat, and drink because we lost her IV access and she wasn’t able to get her nutrition through her IV. She did ok, and finally we were able to go home. As we drove into Dexter the subdivision with the most damage from the tornado had a rainbow over it…I saw it as a sign of hope.

I’ve been thinking a lot about that Tornado and the destruction it left, but mostly the miracle of the families that were left totally unharmed by the storm. When you deal with tragic situations it often makes you want to live life differently.

I want to try really hard to keep living life, Faith isn’t going to be better tomorrow, or even next year. But I believe she deserves a miracle as much as anyone, so I’m holding on to hope that her storm will have a rainbow at the end of it. And eventually, I’ll be able to exhale.

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My Dolphin love

When I was younger I was captivated by dolphins. I loved them, being from Michigan where there are no dolphins, it may have been a bit strange. My friends had pictures of movie stars and rock stars on their walls and I had pictures of dolphins. I had stuffed dolphins, crystal dolphins, all different kinds of dolphins. I loved them. Funny, that something that at one point what may have seemed silly, and pointless, suddenly makes total sense.

My daughter is sick. And she isn’t getting better. She actually, is getting worse. I know it. Her doctors know it. She totally knows it. What was once thought to be a journey that would be long but successful, has become a journey of disappointments, that is scary and filled with constant worry.  I remember when all of this started one of her doctors told us, she would be okay, that in high school she would be doing great. Living a normal life.  I remember thinking…high school….She’s 4, high school is forever away. I can’t do this until high school. Right now, if that doctor would give me that same assurance, I’d not only take it but I would celebrate. Those promises are long gone.

Faith has allied diseases. One of which is so rare…the only information you find on-line is medical journal stuff, and thats even rare. when your child has an illness like Faith’s there are no statistics….Our doctors are working closely with doctors in China. Who have seen more of her illness than any other country in the world. It’s so scary when your child is sick, its even scarier when you are alone, fighting a disease alone.

So they just keep guessing, albeit educated guessing, but guessing none the less. Our team of doctors has decided to take the least aggressive approach and evaluate its success…unfortunately, to this point its just not working. I am not sure what part of that is the hardest? Her less than 40 pound body has gone thru more surgeries than I can count at this point. If you look at her abdomen, you see a feeding tube, a colostomy bag, a Chait tube, and lots of small scars from numerous incisions that have been made. Tomorrow, they are adding a med Port.

The med Port gives us IV access, which will hopefully keep us home more than we are now. Her home antibiotics are no longer working to keep the infection away. Her colon does not absorb water the way it should so she gets dehydrated very quickly. This port will allow us to give her IV fluids at home as well as continue with IV antibiotic treatment at home.  Not to mention the hell that she has to go thru every time she needs an IV will no longer be an issue…no more pokes. 

A few weeks from now we will be back for another surgery to remove sections of Faith’s colon. This doctor in China the one who has treated the most cases of this disease says we will have to remove her entire colon. That is a decision that we are not ready make. That decision in my eyes means we have given up on her having a more normal life someday, I am not willing to do that at this point. Removing sections of colon seems like it isn’t that big of deal, but it is. The colon is where your body absorbs its nutrients. The more we take out the less nutrients we absorb. It also means everything gets moved around a different section of colon will be on the outside of her body, more scars, more yuck. I know that when you are talking something that is this serious you shouldn’t be thinking about scars, but I do. She’s my baby. And I hate that she someday will have to explain her scars to everyone.

The other day Faith was watching Dolphin Tale and she says to me, “Mom, They never gave up on Winter til she was fixed, she’s kinda like me.”  That dolphin has become our visual source of strength. Staying strong through something like this is so challenging. Your friends change, the people who have stood center stage in your life for years, suddenly drift to the back of the set. I get it, I understand, and its common, they talk to you about it here, all of the frequent flyers as they call us, the people who are strong enough to stand by you float to the top. The others, you have no time to mourn, in fact, sometimes I can go weeks forgetting about people I once cared so much about. 

For the most part its not hurtful, because when you are in this kind of pain, a friend that doesn’t care like you thought they might just doesn’t seem like that big of a deal. When you are in this kind of pain, what hurts is telling Faith we are being admitted for the third time this month because her white blood cell count is through the roof, so that nasty infection is back. What hurts is telling Will we are going back in and I don’t know for how long this time. What hurts is on the way to Mott for this admission, I took her to her favorite Thai restaurant, when I was at the counter I turned around to see her with tears rolling down her cheeks as she watched a family that was laughing and having a great time.

We left the restaurant and she was totally silent. When we were just about to pull in to the Mott ER she said, “Mom you’re never going to give up on me right? Because they never gave up on Winter, and she made it. I want to make it too.”  I quit making promises I can’t keep with my kids because with this illness I need them to know when I promise something it’s for real. But not giving up on her is a promise I can keep.

So the dolphins, that for some reason I found so beautiful when I was a teenager, suddenly mean the world to me. I look at dolphins and I think of Faith, they are friendly, intelligent, and playful. And the one named Winter, has given my baby hope,  in a situation where hope is hard to find. Hope that someday, she will be swimming in the ocean, free of tubes, bags, worry, hospitals, and medicines, just like a child should be. They never gave up on Winter, and I will never ever give up on Faith. I love that dolphin.