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.
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.
When you are in the hospital often you notice things. Things that people who don’t spend much time there pay no attention to. For example, most people who come to visit the hospital find themselves staring into the rooms of all the other kids who are there. They walk by looking into each room, focusing just on the kid in the bed, or in my case, on my daughter. They don’t smile, they don’t wave, they just stare. At times it makes me angry and I want to flip them off. Other times, I wave, and sometimes, I laugh. When we were on our trip to Boston, I figured it out. I think I understand what they’re looking at.
Getting to Boston took us twelve hours. And we did not drive. Two airplanes, two taxis, and a train, twelve hours. I was sick the entire time. Just nervous, but my nerves we so bad I was sick to my stomach. This Boston trip was BIG. Boston Children’s Hospital…Harvard. According to US News and World Report the greatest institution it the country and home to one of the only 7 pediatric motility specialists in the World. I was scared to hear what they had to say, and even more scared that they wouldn’t have anything to say.
As the Taxi pulled up to the hospital there was a HUGE banner, rated #1 Children’s Hospital in the US. It was the first thing you saw. Immediately I felt at ease. I felt like we were in the right place, I felt like we were about to get all the answers we were waiting for. We went to the clinic and waited for our appointment. They took us to a room and the DR. came in. He was really handsome. Distractingly handsome, and horribly arrogant. He welcomed us to Boston and said that he has taken Faith’s case because he believes he is able to help her. In the next hour, he talked to me about all the cutting edge things they are doing at their hospital. Medications he said Michigan has never even heard of. He criticized the work that had been done at Michigan saying he would have done things differently.
It was very hard to hear, but it was also why we were there, to see what if anything they could do for Faith.
Faith was admitted a few hours later and prepped for the Operating Room the following day. That night we were wowed by the technology in the hospital, there were robots everywhere, delivering medicines, delivering food. It was really cool. I was also wowed by the patients that were surrounding us. When you are in hospitals a lot you also are very aware which children are the sickest, and here they were everywhere. Our room had a window, and out that window were windows to the rooms of the other patient rooms. As I looked out one particular room caught my eye. There was a sign, it said Molly in really bight colors. On the bench in that room was a girl Faiths age, sitting with her mom. They both looked so tired. Molly looked bored, and uncomfortable. The mom looked so scared. They both looked so sad. Looking into Molly’s room made me wonder, what do people see when they look into our window?
The next Twenty four hours were some of the worst in our journey so far, Faith was hurting, she was scared, and at one point she even quit breathing. It was a terrible. In the end we had good information so it was worth it, but it sucked. One of the procedures that was done, that is only done in a few hospitals in the US on children is colonic manometry. This is where they stick probes into Faiths colon and test her colon for function. This was essential to see if we will ever be able to get rid of her colostomy. The top part of Faith’s colon when given the strongest stimulant you can give a child showed function. Which was great to see. The Dr who said Michigan didn’t do things the right way then told us he is certain we would see function in the lower part of her colon. That if she had made it to age 5 there had to be some function. In fact he guaranteed it. They put the strongest stimulant into that part of her colon and there was no movement at all. In fact that section of colon showed absolutely no function what so ever. Confirming what Michigan had been telling us, since we first came to them, that the pathology that Michigan had based all of their treatment off of, was in fact, accurate. That our doctors at Michigan, the Harvard of the Midwest were accurate in their treatment of Faith’s disease. This was a huge relief.
We then left Boston, ready to get back to Michigan and the doctors that we have grown to love so much. I was excited, I couldn’t wait to get to her appointment, to tell them what we had learned. This doctor said, we can take her off half of her meds, that we don’t have to do all those colon washes, and that she should be fine in school. He told me everything I wanted to hear. When we got to the clinic three of Faith’s doctors came in to hear the news. They cautioned me. Faith is a difficult case and this Boston Dr. has never treated her disease before. They agreed to let us try his plan…She was back in Mott within a few days. Her Enterocolotis was back, and her colon wasn’t working again. She was pretty sick and I was really scared. They got her back on her usual meds doing our usual washouts and she was feeling better.
We scheduled another admission for January to insert a port thru her appendix into her colon to irrigate the colon from the top down. It is the least aggressive approach we can take right now, and they are not sure its going to work, there is a chance it won’t, but they want to at least give it a try.
So what are they looking at? The people that stare as they walk by. They are looking at what they are afraid of. A sick child. I am certain there is nothing that is more scary than a sick child. It not something you can explain, its not something you can rationalize. And it’s not fair. I think it’s every parents worst nightmare. So when they walk by they are looking at what scares them most.
When you look into our window what do you see?
You see a mom, who looks tired and confused. Who looks five years older than she did a year ago. Who looks scared and uncertain all the time. Who is beyond exhausted but can’t sleep.
You see a little girl who is often pale, and tired, and cinched over from pain in her belly. She also looks scared.
What you would see if you could look just a bit closer is a mother who to spite all of the difficult challenges we’ve faced over the past few years, has built a bond with both of her children that she is certain wouldn’t have been there if we hadn’t faced all of this together. A mother who has fallen totally in love with her daughter and is inspired by her love and strength. A mother who is changed for good.
What you would see if you could look just a little closer, is a little girl who thanks me, for taking care of her, for sleeping next to her in the hospital every night, for holding her hand and being there when she is scared. If you keep looking you see a looking you see a five year old who has had more medical procedures/surgeries in the last year than most of any of you in your lifetimes. She is brave and strong, and determined to make a full recovery. All of this is beginning to get to her, she too is forever changed. Someday she will do amazing things. Honestly, she already has.
Before bed the other night she asked if we could pray together, I asked who we should pray for and she said, lets pray for the kids who are sick and their moms who are tired. I said, you mean us, Faith? She
said yes, and for my friends at the
A friend of mine lost her father a few years ago, and when I would ask her how she was doing she would say fine, as long as I don’t go there. I remember thinking, that was so sad, that she couldn’t even think about her dad. Fast forward a year, when I lost my dad, and suddenly I knew exactly what she meant. It really is just too painful to even let yourself think about. I am not someone who cries, in fact, I think as an adult my father saw me cry once, at his bedside. Now, at any moment of any day regardless of my mood, if I think about my dad, I have to fight back tears. I just don’t let myself go there. Some fancy shrink would call that avoidance, I call it survival.
So when I met with my girlfriends this past week to talk about the fundraisers they are doing for Faith they asked me to write a blog on exactly whats going on with Faith, what our days look like, what our future looks like. Letting someone do a fundraiser for you is hard enough, I am the fundraiser lady, that’s what I do, I volunteer, I help others. I’ve realized its very hard when your position goes from giver to receiver. That in its self is a loss for me, hard to deal with. My Aunt says, it’s just people showing their love for you and for the kids, but to me it feels like I have failed to do what I needed to do to take care of my family, regardless of the circumstances.
So accept help, from people, and then talk about the details I try so hard to let slip from my conscious mind. not so easy. I know exactly whats going on with Faith, I know the details, I know the risks, I know her prognosis. I also know that those details that seem factual don’t feel so factual at all. They feel like raw hurt, the kind that makes your throat hurt and your eyes fill with tears. It’s the I just can’t go there hurt.
Really, its simple. Faith’s colon does not work. Neither does her rectum. Because of that she has a hard time absorbing fluid and nutrients she needs to stay healthy. She has many diagnosis’…Hypoganglionosis of colon & rectum, Hirschprungs disease, failure to thrive, Dehydration, Urinary retention, chronic constipation, distal large bowel, colonic illis, mega colon, enterocolitis, there are others… She was given a looped colostomy in hopes that she would someday be able to gain weight, and have a surgery called a pull thru…we are far from that ever happening. The colostomy was supposed to solve her constipation problems…they always work, that’s what they told us…you will have output everyday…Faith’s doesnt work. Sometimes we see no output for days…in fact right now, we are on day three. Sometimes her colon stops working and she gets totally backed up, in theory that should never happen.
She gets fevers because when things get caught in her colon the enterocolitis flares and she gets sick, and feels horrible. When this is happening, she doesn’t eat and hardly sleeps. This is when I get the most worried. She seems to feel better when she is up and moving around. She takes lots of medicines….14 I think at last count, 3 antibiotics, motility agents, stool softeners, anti-nasuia, antacids, probiotics, and periactin, a drug that is given to patients suffering from anorexia, to make them want to eat, Faith loves it, it makes her silly. I, on the other hand, dislike it, she’s silly for the first hour, then she crashes and is an emotional mess…she takes it three times a day. Her med schedule is every two-three hours. She also gets free water, which is nothing more than water with probiotics and some other stuff, that goes thru her feeding tube to help with dehydration, I do this in the middle of the night, mostly, so she doesn’t have to be stuck to her feeding tube pole during the day.
The worst part of her day is her wash-outs. That’s where we take a red rubber tube and clean out the proximal and distal parts of her colon. We use a saline solution and huge syringes, 6 on each side 12 total. When her motility is good, she doesn’t complain too much, when it’s not, she screams and cries. I think it hurts and I think that its scares her because she never knows if its going to hurt. We are supposed to do this three times everyday. Our insurance and supplemental care covers materials for one wash-out a month, because there is no protocol for Faith disease because it is so rare. I know….it’s total BS.
Then there is her colostomy care, Faith has already had one colostomy revision because her stoma prolapsed. This stoma is also prolasping. The skin around it is almost always has a secondary infection and it always has an itchy yeast infection. That hurts her for sure. Its red and bloody, when you clean it even with just water it stings. And I have to do it, and hold her down as she tries to squirm away from me. It sucks. She needs a new bag, every couple of days, they go bad fast because of the wash outs and her infections.
We also have to clean around her Mic-key button (feeding tube) which isn’t usually a big deal, unless her belly is distended which is about half the time. When her belly is descended it is very sore to the touch and often sits funny on her belly. She says it feels bruised. Its gotten pulled out twice, forcefully, and its painful. But, shes five, and she has to play, and I love when she forgets about all the stuff on her belly and plays. I just pray all the time that it stays in place. Either way we have to check placement twice a week, and change it once every two months. We keep track of what she eats during the day so we can give her feeds thru her tube at night. When her motility is bad, the feeds make her sick and we can’t give them to her.
The MD’s at Michigan have been amazing. Dr. Newman is the best and Faith loves her so much. Michigan does not have the equipment to do the testing Faith needs to see what options there are or if there are any. There are a limited amount of hospitals that have this technology. Which is why we are headed to Boston. I was so excited to talk to the Doc that is going to take care of her, the first words out of his mouth were, this is a very rare and difficult case. Not what I was looking to hear, but they seem hopeful they will be able to do something to help her. I told him U of M wanted to send us to another children’s Hospital in December and he said, if you’re not still in Boston you should plan on going. The more eyes on this the better. Again, not what I wanted to hear.
I never thought anything would be as hard as the few days in the hospital after my dad had his stroke, before he died. But watching your child go thru this, seeing her in pain and not being able to do anything for her, is way worse. Not having any answers, not knowing where to go, or where to get her the help she needs. All of it, is heartbreaking.
There isn’t an uplifting ending to this, we don’t have our happy ending yet. I am scared, and I am tired, and I feel so alone in all of this. I feel like I never have good news, and I am usually filled with the same depressing story over and over again. I try to escape, I try to not go there….but this isn’t something I can hide from or run away from.
This past week, we went to a celebration at the new Mott hospital there was a seventeen year old girl, who happened to have digestive issues, who got up and talked about growing up at Mott hospital. How she spent holidays there, how she decorated her room, much like our last year at Mott. Every night since that night, I’ve been thinking about that girl, and wondering what I can do to make life enjoyable and fun in the midst of this chaos. I want Will and Faith to look back on their childhood and remember fun, happy times. I want them to remember that we stayed strong, and stayed together. I don’t have it figured out yet. Most of the time I’m not sure how I am going to get thru the day, looking at tomorrow can be way too overwhelming. If I am able to stay strong, and we do make it thru this, I’ll know in the end I can handle anything. I just pray that Will and Faith will feel the same way.
Faith asked me on the way home from church this week, Mom how does god decide what prayers he listens to and what prayers he doest listen to. I’ve been praying really hard that my colon starts working… it makes me sad mom, that god let me down.
Go ahead, answer that question. Because I can’t. I think my first reaction was, I have to stop taking her to church. Because at church they talk to kids about prayers being answered. And Faith is
wondering why her prayers aren’t being answered. And honestly so am I, I understand how she’s feeling.
My dad wasnt a religious man, he was caring, loving, generous individual, but he wasnt prayerful. In fact, in his last hour of life I baptised him myself. I think my step-mother noticed, but I’m pretty sure no one else did. I asked him once, when I was about eight, Dad have you ever prayed? You would have to understand that my mom and her side of the family were dedicated Catholics. Once, I was sick, I had to stay home from church and I asked if we needed to call the Pope to let him know I was staying home with my dad. And I was serious. We were prayerful, but dad, he only came to church on special occations…so I asked him, dad, have you ever prayed, he said once.
I was waiting for a sweet story about when I was born or when Scott was born…but that wasnt it. He told me a story that broke my heart, he was in Vietnam, and his dad had a heart attack and died. When they came to notify him it was late at night, he walked out near some water and looked into the sky, and prayed, god just let me get back for my dads funeral. It was the first time he had ever prayed. I could tell by the way he told the story, he hadn’t made it back in time, but I asked, when did you finally get back dad? Late at night, after my dads funeral. I still wonder if his prayers had been answered if that wouldn’t have been his only prayer.
I remember I used to feel like I had blind faith, that no matter what I would believe. What I have come to realize is, its easy to believe when everything is going well. It’s when things are not going well that it gets complicated. So how, when your life is falling apart, do you find faith?
That Catholic church that I’ve been attending all 37 years of my life, maybe didn’t like the fact that I quit attending church for a few years while I was getting divorced, but no one from that church has ever even called the hospital to check on Faith. I have called numerous times to be sure that she is on their prayer list, and not once has anyone ever called me to see how she is. No priest has ever asked if we would like someone to come and bless her, nothing…she has been in the OR eight times this year, she has had three major surgeries…and nothing. Yet we are asked to keep our faith.
So you think this is a story about a loss of faith. A family giving up on god, and what he has blessed us with. Not really. This is a story of where you find your faith.
And as I see it, god is lucky…hes lucky he has his people to show love and compassion. Because the only faith I’ve got right now, is in the people who I believe have been sent to help us through this journey. Because without them, we wouldn’t be ok. I wouldn’t be ok.
I found faith in a friend, who hasn’t given up on us, who calls a few times a week, even when half the time I don’t call her back, that brings her kids to the hospital and tells me hilarious stories about her and her husband and their sex life, knowing that the last thing I need to be talking about is whats going on with Faith. Shes smart, she gets whats going on, she’s scared too, and for some reason that makes me feel better, that someone else is really worried. She invites us to her house, and she takes control, she lets me just forget whats going on. I give nothing back to her, In fact I think I’m a lousy friend right now, but she’s there no matter what. Sometimes at night when I’m sad, I go into my living room and lay on the rug she bought me…just because it makes me remember how much she loves me…for nothing in return, I really love her…she is where I find my faith.
I find faith in my Aunt, who I believe has made it her mission to be there when my dad can’t be…and shes doing a great job…and for some reason when I am with her I miss my dad less.
I find faith in my mom, who I am certain thought retirement would be way more enjoyable than having an ill granddaughter and having to move into my house to take care of Will when Faith is in the hospital. But she acts like she would rather be doing nothing else but being with Will. When I am pretty sure, that’s not the case.
I find my faith in my Aunt, who has recruited me to attend her Lutheran church, where Faith is so happy. I can tell her anything. She does not judge me. She doesn’t get mad at me for being a bitch or not wanting to talk…she just loves me…and she really loves my kids….She is where I find my faith.
I find faith in my nephew who runs out of his classroom everyday when he sees me and gives me a big hug, not because he knows what I’m dealing with, but because he loves me.
I find faith in my niece, who I believe is smart enough to know what is going on, but isn’t scared away. She just loves to be with Faith and Faith would rather be with no one but her.
I find faith in my man. He is there to hold Faiths hand when she has her treatments done, and there to hold mine when I can’t go any further. He loves my kids as if they were his and they love him. He also has a firm grip on my heart, which right now, maybe more challenging than anything he’s ever had to endure. He is a gift from my dad, I’m more sure of that everyday. and he is where I find my faith.
I find faith in kind words, in loving messages, and prayers from people I hardly know…
I find faith in my son, who loves me no less, when everything I once promised him, has come up empty.
But most of all I find my faith in my Faith. When I am weak, she is strong. When I let go she holds on…She is where I find my Faith.
Tonight my head hurts. So does my stomach. I would love to say it was just nerves from papa cutting it a little too close for comfort, but that isnt the case at all. Tonight Faith fell. Fell over her own feet while chasing me to the kitchen because she wanted some corn. She slid across the floor, which you would think was a good thing, but not for Faith. Her Mic-key button came out, along with her stomach contents and blood, it amazes me when these things get pulled out how much blood there is. I quickly got it back in, and cleaned up the mess. I knew we had other problems because there was blood showing thru her ostomy bag. It took me an hour to get her calmed down, and for a child like Faith, who has been thru so much I knew she was in a lot of pain. I took off her colostomy bag and there was lots of blood. It was gross. It took a while to get it under control…She was just worried that I was missing the Tigers game. I bit my lip to avoid crying, because that’s just how amazing she is…Laying on our treatment table, worried not about her black and blue belly or the horrible infection around her once again prolasping stoma, or that her feeding tube got forcibly pulled out of her belly, but that I was missing a game, that she knows I really was excited to see all day long.
Suddenly, the game didn’t seem so important. These games have always been important to me, it helps me forget about everything else that’s going on around me, and its so fun when they are doing so well…and well….they really are doing so well. But right now, its hard to think of anything, but whats going on with Faith as important.
She needs to go to another hospital, however we have to fight to get the insurance companies to let us leave the state…Even though our doctors have admitted to the insurance companies that they are unable to take care of Faith and they don’t have the equipment needed to help to figure out the plan that will best work for her…Then we have to get her to the other state and stay there, as long as it takes to get her the help she needs…I dont sleep much at all anymore. I think, and think about what I could be doing differently to help her. She doesn’t feel good half the time, and when the infection gets like it is right now she gets fevers a lot, and she’s so tired all the time, and she’s in pain…which sucks to see your kid in pain.
I miss the days of laying awake at night because I was worried that Michigan could lose the game…or being sick to my stomach for 9 innings of a Tigers game. I know there has to be a solution to all of this. I wish it was as simple as a Brady Hoke W or a Verlander KKK…the stakes are so high here…truly, this is the game of my life.
I used to love being alone. Not all the time, because I am a people person, but I loved going running and I think half the reason I would run so far was because I loved my alone time so much. Now, I dread my alone time. There really isn’t all that much of it, but when I have it, it pretty much sucks. Today, I realized that it’s when I am alone that I really can think about what’s going on in my life. And for the first time, in my life, I have no direction. I have no idea where I am headed. I have no plan, and that is a very scary thing. I feel like I am in control of nothing, and I have no clue when that will change.
Faith has been out of the hospital for two weeks now, but her stoma from her colostomy is infected and she’s had fevers three times this week. She woke up this morning in pain and said, Mom, When am I going to be better? I can’t answer her. I have no idea. I am fairly certain her doctors have no idea.
Our dining room is now a medical procedure room, where I stick a red rubber tube into her colon and wash it out, hoping that the infection that makes her feel so bad will get better. We have to change her ostomy bag in there and treat the yeast infection and nasty infection around her stoma. Her last stoma prolapsed, meaning part of her colon that was supposed to stay in her body was now coming out of her body…so they cut that part of her colon out and made a new one…now, the new one, is also starting to prolapse. The ramifications of that, I can’t even consider at this time. We take care of her Mickey button, which is where she receives her tube feeds…She has medicines and other things we infuse thru her tube every two hours or so.
Her doctors seem to agree to disagree on her treatment. One says remove her entire colon, one says, keep as much as you can, one said her small bowel is messed up too. The bottom line they have no clue. They have no plan. That is what happens when you get a disease that is diagnosed once a year in the USA. Everyone says…go here, go there…doesnt matter. No one is treating her illness successfully right now, Mott is where she is comfortable.
I’ve done a great job, she has no clue how scared I am. Her brother may, he isn’t sleeping well, and asks me all the time when we are headed back to the hospital. I’ve convinced her that Kindergarten is not something she wants to do, that a ballet school is way more exciting. Even thou for some reason this is one of the hardest things for me, its such a monumental thing…starting kintergarten. I already play over and over in my head, I didn’t go to kindergarten I was too sick…I just am sad that she’s missing out. It’s just not fair. She would love it. And everyone wants an explaination…why don’t you try it…I assure you, no one has thought more about this than me, and I can’t talk to you about why. Because when I think about it I can’t breathe, so talking about it is out of the question.
So, My alone thoughts are way worse than any of this stuff. Our life is hard right now, and I seem to just feel happy for moments at a time. But those moments, I am so grateful for.
A friend, seriously offering to marry me so I have health insurance, an I-pad to make our hospital stays so much easier. A tweet from a friend that cares so much about my daughter, he thinks about it in the middle of a very busy life. A near stranger who tracked down my daughters last name to send us food from whole foods so we didn’t have to eat hospital food. Friends who continue to try to organize a fundraiser, for us, even thou my pride stands firmly in their way. A niece who can make my Faith forget she’s sick. Friends, who have come to clean my house that is totally overrun…An Aunt who’s there in place of my dad. My mom who takes over as mommy for Will the minute we get admitted again. My son who loves me no less even though as he just said this summer has been the worst, And someone to hold my hand, just to hold it.
I’m grateful for these moments, the moments that I forget I am sad. More than anything, I am a grateful for her, that god choose me to be her mom, because, really she’s amazing. And when I think of how amazing she is…those are the moments Im happiest.
I love Target. It has almost everything I need and since the divorce it’s where I get most of my clothes. Lately, since all of this with Faith I don’t have Target money anymore. Last week my girlfriend gave me a $50.00 gift card and I was so excited! Yesterday I decided I was going to leave the hospital and go get Faith something special from Target. Then Dr. Newman came to talk to me.
The disease Faith has is very rare. A couple of cases a year are seen in the US. She actually has two diseases, called allied diseases, which makes it even more rare. The problem when you have a disease that no one else has, the doctors have never successfully treated it. So they are guessing. Educated guessing, but guessing. Things have not gone as planned and things seem to be getting worse as we go.
Dr. Newman who Faith loves, came and told us there was something that they saw on her CT…they didnt know what it was, but they were concerned. they’ve also been concerned about obstruction, and function. They have no answers, they are as frustrated as we are. I asked Dr. Newman, what do I tell Faith? Will she be well enough to go to Kindergarten? Will she ever have her insides inside her again where they belong?? When do we get to go home? Dr. Newman who I believe really loves Faith, shook her head and shrugged. She has no answers for those questions.
So I left for Target, first I had to drop off Will, who cries so hard when he has to say goodbye. And I am sure would cry even harder if he was able to see me crying as I drove away. I drove to Target, excited to get myself a dress and Faith something fabulous to play with. I found a dress right away…maize, yellow is my color, easy choice. So I headed to the toy department.
I found a baby shopping cart, which Faith could push around the hospital, and with the chance of heading back to the OR this week, it would be important to get her to walk.
As I headed to the front of the store I passed the school supplies. Theyre all so inexpensive this time of year, so I looked for some things for Faith to use in the hospital. Then I saw her.
A young girl, Faiths age, with her mom. She was really cute, and small like Faith. I heard her mom telling her that when she was in kindergarten she didn’t eat lunch at school, and that she was lucky to get to go to school for a full day in kindergarten. The girl was picking out a lunch box, and I just stood there staring at them. Then I went and looked at every lunch box they had, unzipping them, seeing how big they were. Some lady asked me if I was okay, and asked if I needed a tissue. I was really crying and I didn’t even realize it.
Faith is supposed to be starting kindergarten. We are supposed to be school shopping. That mom and that kid in Target should be me and Faith. I want to pick her out a lunchbox, instead I’m trying to figure out how to tell her she has to be connected to her tube feeds 24/7.
As I walked towards the registers I passed the school clothes, there was really cute stuff, that Faith would love, but she has to wear dresses so her ostomy bag and feeding tubes don’t show. I want her to be able to wear what ever she wants, not what covers her medical mess on her belly.
So I was crying in the check out line…I didnt really even care. And I cry in front of no one! I drove to the hospital and took Faith into the procedure room to do her colon wash, as her 30lb body laid on that table, she noticed that I had been crying. She asked me what was wrong, and I was honest. I told her I felt bad that I saw a little girl school shopping and she was stuck in this hospital. Her response…at least were stuck in this hospital together.
So there is was, my lesson. And she is so right, three of Faiths friends lost their battles with their diseases this last week. And we are here together, as we should be. So I hate this, and I am not okay, I am scared out of my mind and I’m worried about how long I can do this, and how long Will can take all of this, and my house, that I built with my dad, how long I’ll be able to keep it, and that my kids both want their mom and I am only one person if I could divide myself, it would have happened, months ago.
When we went to bed Faith asked me to sleep with her, she kissed my eyes and said goodnight mommy, we can go to Target together soon.