myfaithsjourney

I’ve been buying hand sanitizer by the gallon for the last 9 years. My children have been able to properly wash their hands, without prompting since they were 5 and 8 years old. My daughter wears a mask in public during flu season and my son schools from home when cases of influenza are high. I’ve sanitized my shopping cart without exception for the last 9 years and just in case the store is out, I have my own sanitizing wipes in my purse. We check restaurant health inspections before we dine out and we avoid dining out when cases of community spread viruses are high. When we travel on an airplane or attend a movie I wipe down the area where we will be seated with those same wipes I used in at the grocery store.

For a long time, I’ve dealt with judgement from passers by of being that over-protective germaphobic mom. The reality is I basically believed that to an extent myself. Until one infection that Faith had left the greatest doctors stumped and took the CDC eight weeks to identify. That hospitalization left me studying how I can make sure I am on the top of my game when it comes to viruses and germs that can harm a weakened immune system.

The reality of having a child diagnosed with a life threatening illness hits you in waves. Other parents from our community share that had they known the whole picture from the beginning it would have been too overwhelming to deal with. I don’t disagree with that. Had I known the day we were told Faith was sick that she would go through so much I’m not sure we would have handled it all the same way. We often had some time to get used to doing things differently than everyone around us.

We also had to get used to so much loss. Loss of normalcy, loss of control, loss of friends. While some things you never get used to…..it still makes me feel like I can’t breathe every single time we lose someone from our medically fragile community. These moms and dads we stand with in the scariest of times become our community. Where as a parent of a healthy child you make community with your sons football parents, we make community with our fellow warrior parents. We suffer with them, when they go through seasons of heightened illness….we cry with them over the little stuff that seems so important sometimes…..like another birthday in the hospital or another scan……and when there is a loss we grieve.

We grieve for the child. We grieve for the siblings. We are sick with grief for the parents. It makes you relive every close call your child ever had and every like diagnosis of the loss child. You have a burning sensation in your throat for days and you dread the thought of telling your daughter about her friend she met in Denver who died from a disease your child has too. And just when things start to feel close to ok again, it happens again……and it doesn’t stop.

I’ve considered separating myself from the community, because the grief is so consuming at times. But the reality is, these are my brothers and sisters in life. They understand our journey with no explanation. They understand what I mean when I say, I feel like I am unable to even utter the words to explain where we are with this infection. That my tongue feels like it is cemented to the roof of my mouth and to separate it will cause me so much harm……I can say this to my medical moms and they say, yes girl, I know.

Four years ago when Faith was spending more time in the hospital than she was at home we made the what seemed impossible decision to fully homeschool her. The truth was she was picking up more secondary infections at school than we could successfully deal with at home. She was sad. I was sad. I was angry that her body wasn’t able to work well enough for her to be at school. Truthfully it was a she’s lost so much, how can she loose this too….but that kind of thinking really doesn’t work for us.

We have really had to focus on what we have rather than what we’ve lost. As Will and Faith get older I realize all of this has had somewhat of a silver lining. My kids are fantastic.

Yeah, I know, everyone thinks their kids are, but they really are. They are 14 and 17 and they love each other more than anything. Not only are they best friends, but they are one another protectors. They value family and the relationships they have with the people they love. They are empathetic and caring and they always put others first….sometimes to a fault. They both have a desire to serve others and to do their part to make the world a better place. If you don’t know them you have to trust me here…..they are not your average human.

Often people remark to me what a great job we’ve done raising our children. And while there’s a small piece of me who wants to say, THANKS……its hard for me not to explain. The most important job we had as parents to Will and Faith was to love them through all the loss. As parents, we want to fix it. We want to give our children the world and make sure they have what they should have. I couldn’t give my daughter the healthy body to attend school with her friends. I could love her though the tough decision to keep her home. I could love her through the loss.

I know that so many of you are struggling with making the right decision for your children this school year. And while I am not an expert on Covid I am an expert on having to live the way you’ve all been introduced to living over the last six months. I feel like there is so much I can offer you as far as staying sane and making sure you don’t allow this season to change who you are at your core. But that’s not the message I have for you here.

My message is this……love them though it. Your children who are not likely accustom to life with a lot of loss are feeling the loss this year. Regular school, normal hangouts, mask free visits with grandma, graduation, the list goes on and on. The loss is all around us. And while it’s easy for me to sit back and say, it’s a year guys, you can do this…..the reality is, we have had so much practice and in the beginning it didn’t feel easy. What has always felt easy, was loving my children through the loss they were dealing with. Because often their loss is your loss so your suffering together.

Faith had a pretty big medical scare recently. We have been dealing with serious health challenges for so long and this had me on my knees. Faith was septic and had a very high fever, she was saying so many things that made no sense, but at one moment with doctors and nurses surrounding her in the resuscitation bay she grabbed a hold of my face and said, I am so sorry if I die mom, please keep living and make sure Will is ok. Promise me.

I have been known to pass out and when she said those words, I felt my hearing leave and the room was moving around me….something gave me the strength to pull myself out of it. I knew I needed to be present with her at that moment but my body wanted to fall onto the floor. It is amazing the strength you can show as a parent when you feel like you can’t for one more second.

She turned around pretty quickly and was out of the hospital in less than a week. I have not healed so quickly. I still am having trouble sleeping, I can’t get that conversation out of my head and the dialogue in my head over that whole illness make my legs weak. She said to me a couple of nights ago, its way harder on you than it is on me…..I don’t remember half of what happened…which is good, since I promised her a kitten.

My message for you is simple…..they will get over this way before we do. Kids are resilient as hell. They will learn from the loss and be better for it, as long as you as parents love them through it and allow them to grow from it. The best advice I ever got from one of Faith’s doctors at Mott was….since you can’t fix it, roll with it. Meaning, at some point we have to stop talking like all of the precautions we are taking are the end of the world….this isn’t going to be a disease you are fighting with your families for the rest of their lives…..so stop talking like it is….

My girlfriends daughter was exposed to Covid and she started calling the virus Rona……since then we’ve coined the term Damn Rona……in this house. With our life experience we’ve learned its best to talk it out….the losses that are happening because of Rona…..No Grad Party for Finn….Damn Rona, No summer vacation……Damn Rona…..you get the idea. When making your decision for the upcoming school year, just remember there is no right answer. Don’t put so much pressure on yourself. It will be ok. Your kids, while they will experience another loss, will be ok…..because you will love them through it. Damn Rona.

I am not a writer. I don’t enjoy it.  I do it mostly because my therapist and some of Faith’s doctors had suggested it.  I find that most of the time it makes me feel everything, more than I like to feel it. I’ve been contacted on a few occasions about putting my writing into a book. One of the people who gave me this feedback, a writer herself, said you have so much story to tell.

But that’s just the thing, to me it doesn’t feel like a story. To me it feels like taking a picture of whats happening inside of our lives, a picture for everyone to see.  Its something I think about, all the time, oh, I should write about that, but honestly, sometimes it just takes too many of my emotions to do so.

Lately, its Faith.  She’s the one who really seems to benefit from my writing.   She reads the blog and usually laughs, but sometimes she cries….its good for her I know, but really sometimes, I feel way too much.

I like to update people through my blog. Because for the love of all the things, the grocery store always ends up being the place where I see everyone, and almost inevitably the conversations turn to how Faith is doing, or even more often the assumption that since they haven’t seen pictures of us in the hospital, that she must have been cured.

I know, we’ve been doing this forever, but I hate this kind of talk.  Because if you aren’t in what I call my little circle, chances are you need to be updated…….but for some reason, still all these years later, the fact that I can’t say, its a miracle she’s all better still makes me feel like someone is ripping out my throat.

I, for most of my life was known as the eternal optimist……I was the annoying person who smiled and greeted every stranger I walked past……now, I am the person hiding behind the jug of milk.

I grew up in a small town, I still live in that small town and I am surrounded by people from just about every single stage in my life…..they are everywhere.   Nearly every time I am in the grocery store I spot one of them…….. someone I really liked in school, but someone I would have to choose honesty with. So, like any reasonable person might do, I use my environment to escape….the milk cooler.  Now,  the cooler being clear isn’t protection enough so I have to hold up a milk jug, to cover my face.

Now, I can tell you, that thankfully I am at a stage in my life that standing with my head in a milk cooler doesn’t feel awful.  It actually feels pretty good, except for when that person who your hiding from, runs into your high school teacher and they decide to catch up just steps behind you.   That teacher who is a loyal reader of my blog, caught my eye…..and knew I was trying to avoid them, pushed the conversation to a different area, and winked as he did so.

Interestingly, I’m not sure I felt any better about the missed interaction.  That same night, I had to come to the rescue of one of my fellow medial moms.  Ok, not the literal rescue, but she definitely needed me. On her facebook she posted about the fact that she would not allow people to make her feel bad about continuing to use a straw for her medically fragile child……Person after person chimed in with solutions for her…..suggestions for her…..products for her…..so she could discontinue her plastic straw use.  These are her friends, people that love her…..and it really made me mad.

This mom, has a child who has defied all the odds…..it isn’t easy.  Keeping her healthy is a struggle, every single day of her life and more work than any mom of a healthy kid could ever possibly imagine. Med after med, surgery after surgery, specialist after specialist. And they want her to use straws that she has to sanitize…..and I am wondering, when would she find the time to do that, and I wonder if ID would want her doing that…..

Then, it hit me. THEY DON’T GET IT. How can parents of healthy kids get it…….

That’s what it is, you can’t possibly.  When I see you in the store, when I’m hiding from you it’s that you don’t get it and there is no way for me to explain it to you.  Now, if we had time, like we had coffee, or sat for a while, I could let you in.  But its just a glimpse, I can’t possibly explain where we are, its pretty inexplicable.

Last week it was Faith struggling with not having classmates and I was struggling with all the kids in homecoming suits.   And Will was realizing its almost flu season. On top of a new Supreme Court Justice that isn’t a choice for kids with chronic life threatening illnesses and three insurance denials. Her health, has been stable, and she is aways in the hospital by this time of the year, so obviously, homeschooling is worth it………right?

Sometimes, I just want to sit across from Dennis and drink a glass of wine and listen to him talk about football…I don’t want to verbalize everything in my head because, its the same thoughts over and over again.

I am grateful for the journey. I am grateful that she’s here with us, and I am blessed to take care of her.

Faith and Will see an amazing psychologist.  Truthfully, she’s probably one of the finest in the Nation.  Working with her has kept the kids well.  Mentally well.  They speak up when they are sad, scared, angry…..happy.  She validates the fact that, the situation is hard, and making the best of it, is the best we’ve got.

She’s also inspired me to think about the wellness of the caregivers for these amazing children.  We are not taking care of the moms and dads and siblings of these kids.   My son gets physically ill when he walks in the elevator at Mott. I spend way too many nights awake and worried about health care and how to make sure we do everything the best way.

To be truthful, There are some people I don’t hide from, my medical mommas……I can tell you I would do just about anything for them.  I don’t have to say much, because they just know.

For a couple of years now, we have been trying to start a foundation. The Will and Faith Foundation.   A foundation who assists the families of chronically ill children.  The WILL to carry on and the FAITH to know you can…… Its a great plan, but foundations take time and money.

Until we have the time to get the foundation started we have started work on a conference for parents and teenage siblings of chronically ill children.  It will be a one day conference in Ann Arbor.  The purpose of the conference, SUPPORT.  Mental health support, resources, support groups, training, care giver self-care…..

We have lots of work to do, and many different opportunities for volunteers.  We are looking for a non-profit organization to work with to help with funding the conference.  Make sure you let me know if you want to get involved.

The thing is, I know, with the right training, I won’t have to hide. I will know what to say, how to field the difficult questions that make me feel like I’m going to start crying in the middle of the grocery store. Until then, if you see me hiding behind the milk jug, its me, not you.

The specifics of what is happening with the nurses at Faith’s hospital Mott Children’s in Ann Arbor, I haven’t a clue about.  It is not that I don’t care, because I really do.  I think it is a matter of, I am dealing with as much mentally exhausting stuff as I can right now, and honestly, I’m not sure I can handle the details. Mott, is our place, our second home, and it has been since Faith was about four years old.   I see it as kismet honestly, the fact that no matter how hard the world has pulled me to other places, no matter how much it seemed home wasn’t going to be where I grew up, I ended up here….physically home, and just fifteen minutes from arguably the greatest children’s hospital in the mid-west.

So what I feel the need to do, is not argue the points of whatever it is that is happening….because I know there’s something about concierge medicine and nursing coverage, which literally could send me into a place not only mentally but physically that would not be good….That’s not my place. But to tell you what I am the expert of, being a mom of a chronically ill child who depends on the nurses of Mott Children’s Hospital.

When I decided something needed to be said from a parents perspective, I took a few notes about things I wanted to be sure to cover.   Specific situations, specific nurses….My list grew and grew…..I considered talking to Faith about this. Asking her for her expert opinion and then I realized, If I did that, I would have to explain to her the reason for speaking up, and she would know, her nurses, who love her and know more about her than you can imagine, are dealing with some troubling issues. And honestly, she doesn’t need another worry.

The nurse who comes to mind in my first memory of Mott is Melissa.  I was a new Mott mom then.  Faith wasn’t even diagnosed at the time. She spent our first few days with us, preparing Faith for a biopsy, that would eventually diagnose her.  We knew literally nothing.  I was terrified and not even able to hold a conversation with the doctors.  She suggested to me I take notes of the conversations and then, I could remember what follow up questions I wanted to ask. From day one, I realized the nurses at Mott, were all about taking care of Faith and me too.  They wanted both of us to be ok.

On our fourth day of admission Melissa had a day off and Faith was sad about not seeing her…so when she came back she had this bag of stuff she had gotten for Faith…to cheer her up because Faith had been on her mind the whole day on her day off…..the Hello Kitty t-shirt is still in my nightstand, as a reminder of how far we’ve come.

Then there was Laura. Laura and I didn’t have the same kind of relationship as I had with Melissa…Melissa was someone I wanted to take home with us….she was a nurse that I could literally live with.  Laura was different.

She was all about teaching me to do what it was that I needed to do.  There were times I thought I didn’t like her. I felt like she didn’t possibly understand how hard all of this was for me.  The reality was, she did.  She knew I had to suck it up and learn everything I needed to learn to take care of my kid.  And she was my great teacher.  One time she challenged a pain medicine Faith was on and I literally thought I would smack her, looking back, as an educated mom, how amazing is it that there was a nurse, willing to put herself on the line to be sure my daughter didn’t end up dealing with withdrawal symptoms on top of everything else.

When Faith got her first colostomy and I first saw her intestines out of her body, I passed out….I laid next to Faith’s hospital bed and cried and asked Laura how I would ever take care of her when I can’t even look at it…..She promised me she would help me.  She did.  Less than three days later, with Laura by my-side I changed that bag….and I’ve been changing them ever since. I could tell you story after story about Laura….She’s been with us through the whole journey. I am so grateful for tough nurses like Laura.

Also from way back in Faiths young years there was Jenny.  Jenny still takes care of Faith.  Even if she doesn’t, she always makes a point to come in and check up on her when we are admitted.  She knows everything about whats happening in our lives and truly cares about how everything is going.

Because Faith has a central line and has for much of her life, we make more frequent trips to the ER.   You see when Faith gets a fever, we have to go.  They have to be sure that the fever isn’t due to an infection in her line which could lead to a serious illness called sepsis.  On one of our early ER trips, we met Leah.  Leah was a nurse that instantly seemed to know everything I was worried about…..come to find out Leahs child is diagnosed with an illness that has similar issues to Faith.

Leah is one of the people who has transitioned from Nurse to friend.  She’s always up for bringing us whatever we may need when we end up admitted and on precautions.  If you were to ask Faith, who of the nurses at Mott have we become friends with, her answer would be different than mine.  She really believes they are all our friends…

When people ask me if Faith has a nurse, who specifically cares for her I would tell you that is Jayne.  Jayne has worked for pediatric surgery since we first came to Mott.  When I tell you how I love this woman, you can trust me that the word is not an exaggeration.

She is there when we need her.  She is always willing to problem solve and help to figure  out what is best for Faith.  She is thoughtful, smart, and extremely patient.  She’s one of the people on Faith’s care team that I truly believe loves Faith.  Sometimes Faith has to have things done that are not pleasant, maybe even painful.  Faith’s first question is, can Jayne do it…..if you have a child with a chronic illness, you now get why I love her.

I could tell you story after story about the nurses at Mott, really I could call so many of them out individually. Because make no mistake, these nurses are difference makers in the lives of kids like Faith.

To sum it up, the importance of nurses who make such a difference, I would have to tell you about Ann.  Now, when we started this journey with a rectal biopsy eight years ago I had no idea the journey we were up for.  I can honestly say, we don’t really have easy days, there are good days and bad days, but we’ve left easy carefree days behind.

Ending up admitted, doesn’t always mean a bad day.  Really, we don’t like when Faith is admitted, but not all admissions are bad.  Usually we are there for IV antibiotics which tend to make Faith feel her best and its, well ok.  Every once in a while, an admission is a bad day……

The one bad day I am talking about was one where Faith was admitted with a fever to rule out sepsis.  Unfortunately, when they drew her labs her broviac also quit working.  Which meant, another surgery and regular IV would need to be started.  For some reason the mention of the IV sent Faith, who was eleven at the time into absolute hysteria.  This child who had been given hundreds of IVs was suddenly terrified.  She was screaming, and I mean really screaming.

As close as Faith and I are, and as much as we had been through together I could not calm her down. I myself was becoming a bit hysterical.  Thats when Ann who was the nurse in charge that night came in the room.  She asked me if I wanted to go walk for a minute and she excused the other people from the room.  She sat next to Faith and held her hand.  I could hear her from the hallway telling Faith she totally understood why she was so upset.

It wasn’t long she had her totally calm and had the IV team in the room to place the IV without any issues.  She talked lovingly and quietly to Faith the whole time.  When they finished, she basically explained to everyone in the room that no matter how many times you go thought this, its never easy, and none of us can understand what she’s thinking. She then helped Faith get ready for bed and without saying much turned the lights off for us to try to sleep.

Faith had not said a word to me, but looked over at me a while later and said, Ann saved me tonight mom, I really wasn’t ok, I love Ann.

I am that mom when we are in the hospital.   I take care of my child.  I don’t want the nurses touching her ostomy bags or feeding tubes. I question every vital sign taken and medicine given. I watch every single move they make.  These nurses have never given me a single reason to question them, but I question every move.  I am certain I make their job more difficult. I can’t tell you how many times an admission I am asking them to page a physician.  I know on more than one occasion I have put them in the middle of a difficult situation.

Why do I tell you this, that I am so difficult? Because if you want to know how good your team really is you put them up against the toughest opponent and you see how they perform.  The nurses of Mott win, every time.  We have spent hundreds of nights at Mott…we have seen hundreds of nurses, and this mom, this overly aware, critically thinking mom, who would do anything she can to make the experience better for her child has…..nothing.  Your nurses are the best there are, and if you want them to stay the best, you will listen to what they need, you will listen to what they believe, you will know those nurses are loved and supported by people who put their children’s lives in their hands.

I really hate nearly everything about the end of the school year.  The parties, the picnics, the graduations, the salute nights….all of it.  This year was particularly bothersome, as my son graduated from eighth grade.  Now, I’m not that mom that doesn’t want to see my kids grow up….in fact its the opposite, I enjoy seeing them grow and learn and mature…..except when there are milestones that remind me, just how not normal life is for my sweet children.

Will didn’t want to participate in the graduation ceremony or the end of the year picnic performance.  He wanted to attend, but he wanted to sit in the audience with me.  I think he didn’t participate because he heard Faith tell me she wasn’t comfortable going…but if Will did the graduation she would go.

The event was at our church and I let Will know, I wanted to sit in the corner.  The minute we walked in I found a mom who I love, who is safe…..By safe I mean, she gets it.  She herself has had a very serious health crisis.  She lives life from the perspective of understanding why even though I have always been known as a very outgoing person, I want to hide in the corner and not make eye contact with anyone.  She helped me to feel safe that night.

Now, let me be totally clear, these parents and teachers and kids are all pretty wonderful. They are all loving and caring and they want to be supportive, but the reality is, there’s not much they can say or ask that isn’t hard to answer…..How’s Faith…..Has Faith been at school much this year…..Is she coming to the pool party…..every single question makes me want to close my eyes and walk quickly to my car…..

The reality, this school year has been pretty sucky.  She’s been in and out of the hospital all year and we’ve been dealing with some crazy bacteria in her blood that the CDC finally identified and has no idea how she got. In fact, there are no published articles on the bacteria.

It was a bad flu season and we spent most of the winter hiding out to try and keep her healthy….and as far as a pool party, she can’t go to pool parties….though she would love to because she loves to swim. Pools are scary when you have central lines, and her other tubes let water in and we just don’t know if its safe.

Will sat close to me and kept his eyes fixed on me and the stage where the performance was.  During the end of the year video he did his best to distract me, I think I had mentioned to him last year it makes me sad that Faith is never in any of the pictures with her classmates….

Then it was over, Will walked me to the car and said, I know that’s hard mom.

That’s it. It’s hard.  You have these dreams for your children, you want them to be able to experience life, and have some normalcy, and sometimes its just hard to swallow that this, this is our normal.

Faith’s big event in June isn’t the end of the year parties all of her classmates are going to, her party is Event on Main.  Every June since she was kindergarten age she’s been going. Her magical relationship began with Charles Woodson when my friend Tammi asked Faith to participate in an event they were having. The event was to raise money for the Woodson Clinical research fund. We are taking raising money to do life saving research for kids like Faith.  As you can imagine we were happy to help.

Our passion to help with this cause is fueled by our desire to make things easier for our daughter, and the other kids who deal with a life that’s harder than they deserve.  I remember when we explained to Faith why we were working with the foundation she said, so all these people here want to help cure my disease? She was seven at the time and I remember her looking around the room studying the people that were there, looking at the people who wanted to help, she said to me, I just can’t believe this many people care.

Over the years she’s gotten more and more excited to go.  Every year her dad buys her a new dress and this year she’s wearing heels. She’s always excited to see Charles when she’s all dressed up.  She recognizes people from the years before.  And of course they all talk about how much she’s grown up, they ask her what she’s been up to, and what her plans are for the summer….and they just don’t ask how her health is, and I think its because they know….they know Faith has a chronic illness and they are there to make her life better….she’s like a visual reminder that this child has been dealing with this for as long as they can remember and the cause that they stand behind has a very real face.

For me, it’s different than the school picnic. Here, I like to make eye contact and smile at everyone.  I hope that they can see my gratitude.  This year when the infectious disease doctors told me there was a bacteria in Faith’s blood and they couldn’t identify it, I realized how every bit of scientific research is so important.  I don’t expect to find a way to fix the nerves that don’t work in Faiths body or add nerves where they are missing in her lifetime.  I do think we can find a way to keep her healthy without IV medication.  And I dream of a day when she has no ostomy bag or central line.

Honestly, I dream most of little things, like her being able to go to a birthday sleepover or swimming in her dads pool.  I know that I want life to be easier for her.  I want her to stop missing out on normal kid stuff because her body isn’t cooperating.

We are so grateful to have so many people who want to make life easier for kids like Faith.  Her team at Mott, Dr. Newman, Jayne, Dr. Kullgren, Scotty, Aamira, Gene, Kristin, and of course Charles.

Charles has done a pretty remarkable thing.  He has used his gifts to do so many life changing acts of goodness. It’s funny because when people ask Faith about her friend Charles they go into his football stats and she just smiles…..his football is so secondary to her.  His legacy in her eyes is his work with Mott as a motivator and an educator about the need for research and to raise money to fund that research….sure he happens to be one of the greatest football players of all time…..to her he will aways be Charles, her friend that did all he could to make her life easier.  The love we have for him is real. The Michigan community is blessed to have him and so are we.

So this Thursday, we will be headed to Main Street in Ann Arbor, to celebrate with 500 of our closest friends…..and we will be raising money for research, research for all the kids, kids like Faith, who miss the school picnics.

I sat at a bar in my little home town of Dexter with two of my oldest and best friends a few weeks ago, its a new place, but really, an old place.  It’s been there since we were just middle schoolers.  It’s changed names and owners a few times, but it has always been a place, that I felt like home in.  Now, that may make it seem like I frequent bars, I do not.  And it may make it seem like I am a drinker, I am not.  It is just a place, that I have always felt a part of.  Until that night, sitting there with two of my best friends, that night I had never felt so out of place and completely alone.

We were surrounded by Dexter people, or people who have now made Dexter their home.  People I have known for years now, people who know how I spend my time.  But that night there was someone there who said something, something that has stuck with me ever since.  He was talking about his former wife, and how she for the most part had cut ties with their mutual friends.  I said, well, she’s still friends with me….his response is what I play over and over again in my head…..That’s because she feels sorry for you.

I looked to my left, and noticed my girls were listening, I waited for one of them to chime in……they didn’t.  Unfortunately, neither did I.  I left shortly later to go home and take care of Faith.   I knew that she was the person I could talk to about this, she would make me feel better, because she understands the stupid things that people say, but the thought of telling her made me so sad.

She feels sorry for me…….

The next week, with this conversation fresh in my head Faith and I run into a parent from the school that Will and Faith go to. She knows me from Will and comments that she hasn’t met Faith.  She says, in front of Faith, she’s the sick one, right? I ignore the question, introduce Faith and we walk away.

She’s the sick one……

That night Faith and I talked, about when people refer to her as being her illness…..That she wants to be more than the sick kid, that she doesn’t want that to be her definition.

We are in this entirely difficult position, we are definitely confined by the illness she has, and there are moments where it literally seems to control every area of our lives, but in no way, not even for a minute do we let it define who we are.

She is not an illness. She’s not the sick kid.

It’s entirely unrealistic to think that people won’t correlate Faith with being sick, or me with having to care for my sick child. But to let it define us, does who we are such an injustice.

Faith is a self defined, Book Nerd.  She loves to read, and she loves art.  She loves her dogs, and would rather spend time with her brother than just about anyone.  She loves to watch mystery movies, and can often figure out  the ending way before I do. She has two best friends, one is a famous football star, who has stuck with her since she was 4, and never once questioned Faith about her disease…..Then there is Addy…..who is more like a sister than a friend.  Her cousins are her light and she laughs nearly every minute she’s with them…….and she has a baby brother and sister….that literally make her squeal with joy.  She wants to grow up and be like my brothers girlfriend Amanda, her “most favorite person ever.”

Her great-grandfather turned 90 recently and they had a big party for him.  When they left, as he always did, he reached into his pocket and pulled out some cash for the kids….Faith took that money to downtown Ann Arbor with her that evening.   As we walked by some homeless people, Faith gave her money to one of the young men.  The next night we saw that same young man smoking pot on the street with his friends.

One of her friends said, you probably paid for his drugs Faith.  Her response reminds me,  that while this illness controls so much of what we do, it also has shown us, taught us, a compassion that not many life experiences afford you.

“We don’t know his story.  We don’t know why he’s homeless, or why he lives on the streets. People don’t choose this life.  Maybe he fought in a war, maybe he has PTSD, maybe he’s sick…..maybe that marijuana is the only thing that will get him through the day today.  If so I’m glad I could make life a little easier for him.”

This is my daughter, so Don’t feel sorry for me.

She’s not the sick kid.

I can’t even tell you how long it has been.  It was on the 27th of October, lots of years ago, the last time his hand was warm.  I was holding it when he started to take his final breaths…..I knew it was happening.  I had just told him where everyone was, and that Jamie was asleep on his shoulder.   I told him I was there. I reminded him then, how strong I was.  He was always so proud of that, a few minutes later he was gone.  I kept touching his hand, it was never warm again.

My dad was a kind and giving man, and everyone that knew him would tell you that. He was also brave and strong, or at least it seemed that way.  What I’ve come to realize over the last few years is sometimes those of us, like me and my dad who act so strong and brave and independent, are likely just as scared and burdened as those who show their emotions more feely.  I like that I am like my dad, but I often in the past few years have had to remind myself that I don’t want to end up where he did, and I would have to figure a way to balance my brave and deal with my worry and stress at the same time.

Most of my brave started out when I was young, I loved hearing him tell people how tough I was. I felt that it made him proud and that was very important to me. I was his girl, in a family of eventually three children, my brothers having an obvious connection with him through working together, or just the fact that by the time my younger brother was growing up, my dad was getting older and softer, I often teased him.  Regardless the natural father daughter bond wasn’t exactly easy for us……

Then we met at Murdock.

My Aunt and Uncle were selling some land and Will and Faiths dad and I met dad over there to see if it would work for the home we wanted to build.  My dad was basically like, how can you go wrong, it was a beautiful piece of property and it was less than two miles from his home……Funny, I’m sure he had visions of watching his grandchildren grow up so close to him….obviously it was a sure thing in his mind.

What I never realized was how much it would change us.  Now as a sports fan we always talked sports, trades, and all about the deer he didn’t shoot that day, but it seemed to be sort of entry level bond.  I never really imagined we would be much closer, but Murdock changed all that.

8591 Murdock Drive……We spent eight months building my very own dream home.  Dad and I worked on so much of it together. I would spend all day there, meeting with the contractors talking about the home and making sure we never failed any inspections. He was so proud of how efficiently I managed the construction of that home.

I remember staking the house out and dad saying to me, that’s the view out your front door, now that’s a beautiful view. I remember when he built the foundation he decided the garage wasn’t big enough that he went ahead and made it bigger. I remember him teasing me about the huge island in the kitchen was,  where we often stood to eat pizza or bbq as we were working. He would often call me with a question and say, meet me at Murdock….it was an amazing eight months that changed us forever.

I remember we dug out the window wells together and I was amazed at how strong he was.  I remember near the completion of the house coming in and announcing to him and my father in law that I was pregnant, with Faith ironically.

Everyday I would watch him pull into my driveway and we would talk about the day and what we had gotten done.  He always stayed for at least a beer often two.  It was the best thing that had ever happened to my dad and me.  And I loved that house because of it.

Now, several years later, I have a new job, taking care of my sweet Faith. I really realized almost right away that I couldn’t afford to live in that beautiful home anymore, but I was convinced that I could make it work. I kind of always expected Faith to get better and me to go back to work……life had other plans.

You see, I think its possible, I could have found a way to continue living there. But finding a way, did one thing to me, it made me terribly stressed…..I remember thinking of the irony of the whole situation, and the logical me, said it was time…..honestly it was time way before I was actually able to say the words, its time to sell Murdock.

For maybe fours months before I made the decision I would wake up from a sound sleep in a panic and I would think I was at my childhood home.  It was so scary to me. I even talked to a doctor about it, because I felt disoriented when I woke up and that had never happened to me before.

I hadn’t even considered moving to my moms house, my childhood home, until one day, I woke up and out loud asked my dad if that was the message he was sending me…..the ball started rolling that day and its hasn’t happened again.

The house is now for sale.  And someone is going to get an absolutely wonderful place. It needs some new flooring, but honestly, I love that home, just as it is……

I am actually ready for it to sell. The amount of stress that will be lifted from my shoulders is exciting to me.  I am ready to not have the stress that comes along with being a home owner. The kids love my childhood home, thankfully my dad built this one too and its really big….and it feels like home now.

It’s been a long time since we’ve met at Murdock.  After he died I would say out loud to him when I was missing him, I’ll meet you at Murdock. I am grateful for the gift of building that home……I’m pretty sure he’s fine with changing our meeting place, but I will never forget meeting him at Murdock.

 

It’s been way too long since I’ve written anything.  Faith loves reading my blog and asks me all the time to please write more. She said she thinks it helps her, she reads some of them over and over and often asks me to read them to her.  Sometimes she cries when she reads them, and she often laughs.  She gets me. She understand my humor.  

I wish I could say that I’ve neglected the blog because Faith is doing so much better.  But unfortunately that’s not the case.  Tonight I ran into one of her student doctors who hasn’t seen Faith for a few years.  She asked all about how she was doing….I realized I didn’t have anything exciting to tell her about Faith and her health.  Which lead me to wonder, if I just get sick of telling the same story.  

It’s like when someone asks me how she’s doing. I usually say, okay.  What I mean by okay is okay in her world. But not anywhere close to okay in a healthy child’s world.  

This week we are dealing with systematic yeast.  Yeast has always been one of those things that makes me hold my breath.  She was five when she became septic with a yeast infection in her blood and I’ve never been able to shake the sick feeling I get when I see yeast on her body. 

We’ve also started some new treatments for her disease.  Which she absolutely hates.   I do one of the treatments every night at 3am. But one of them I can only do while she’s awake and it honestly sucks.   Tonight she cried a lot about it.  

Of course I act very matter of fact about it, it has to happen, it doesn’t matter if it makes you sad, when silently it’s ripping my heart out to see her so sad about it. 

I repeat to her our mantra….none of this seems fair, but there’s a greater plan we just don’t understand. We believe that.  I don’t believe for a second that any child suffers in vein.  There are times when I am crazy disgusted and angry as hell for the cards she’s been dealt. Today I sat down in the middle of Lowes and cried. A sweet old man thought I was sad that the generators were sold out, and I just nodded my head and gave him a smile. 

When I am alone I replay our conversations we have and sometimes it hits me in strange places….today it was her telling me that she can’t be in sports because she sometimes feels like she can’t even walk.  Boom. Smacked me in the face as I walked into Lowes.  So I sit down on some box and I think of how much fun I had playing sports in school.  

Then my friend Sherry posted all these pictures on Facebook of us in Middle School, not far off for Faith. Our friend commented on what a great childhood we all had and she was so right….but all I can think about now is Faith not having the childhood I wanted her to.  And that she doesn’t even know what she’s missing and that makes me breathless. 

Receiently, we made the decision to sell the home I built with my dad before he died.  Sad. But no where near the heartbreak you would think it would be. Why…..because in the middle of all this madness I’ve gained new perspective. 

I am grateful to be able to take care of my daughter.  Do you know there are children with diseases like Faiths who live in the hospital.  I understand why.  But can you imagine how much more of a loss it would be to have your home be a hospital.  

I want to give Faith the opportunity to experience as much life as she can. Because experiences make memories. She’s not going to play basketball and have sleepovers at her friends houses but she will make memories.  And who says her memories will be any less memorable than mine were?  

I pray every morning that the good outweighs the bad. That she wants to continue to fight to be healthy. That she doesn’t decide she’s had enough.  And then after her 3am treatment I lay in bed next to her and hold her hand.  

I love to feel her slow and steady pulse….because that means she’s not in pain. I love to feel her dry and cool hand….because it tells me she doesn’t have a fever.  I hold her hand every so slightly so I don’t wake her up… Because it comforts me. It tells me she’s okay. That we are going to be okay. And then I kiss the back of her hand and bless her with the sign of the cross….as I whisper he chose you, my love, you will move mountains. 

And I really believe she will. 

 

We’ve been on this journey over six years now….a journey that has been filled with the darkest and lightest days of my life. A journey that has been blessed with the most amazing people god could have ever chosen to accompany us.  Today, one of those people, left us. He’s the person I tell people saved my Faith.

So, while I know that this loss is inconceivably hard to his family, friends, and his colleagues, I will do my best to tell you what the loss of Dr. Teitelbaum means to us, a family who was blessed with his brilliant mind and masterful care and thoughtful education of those who will continue to care for our Faith.

I think that it would be easy for me to ask WHY….and HOW…..could something like this happen….it’s unbelievably hard for me to not angrily question how someone like this man, who prevented suffering and death of children could be taken from us….but when I think about Dr. Teitelbaum and the way he was, I know that he would want me to instead concentrate not on his death, but on his life and how he chose to live and how we can learn….

Faith’s case is complicated. And from the beginning Dr. Newman told us about this amazing doctor that worked at Mott who specialized in the care of diseases like Faith’s…She said he was one of the best in the Nation. In fact, she may have said he was the best, and after years of working with him and meeting many of his colleagues around the Nation, I’d have to say she was right. He was the best.

That may seem like a bit of an inflammatory statement. But I assure you, that it is not. It is the same opinion held by countless other mothers of children that have been cared for by him.

It’s possible, probable really, that you will never understand the unbelievable fear you have when you have a sick child, who just isn’t getting better.  That was my Faith at the beginning of her diagnosis.  We knew what was making her sick, but the treatments that should have made things better just weren’t working….and I was so scared.

When we first met Dr. Teitelbaum he wanted to know everything. With his hand on his face, he would sit back and LISTEN to every word we said. He always really listened.  He rushed nothing, and he would hear every word.  As a parent, you worry, that you will tell them all that they need to know, that you will tell them enough, that you won’t leave out an important detail, with Dr. Teitelbaum, that was never a worry, because there was no rush, ever

….from him we can learn to LISTEN.

As time passed by I learned something from Dr. Teitelbaum that surprised me.  I learned that while I wanted the doctors on Faith’s team to be confident, it was extremely important to me that they were humble.  The saying, you only know, what you don’t know…well, Dr. Teitelbaum never answered a question he didn’t know the answer to.  Maybe that seems like an obvious statement…..but it’s not. If there isn’t an answer, and it’s just your opinion, I want to know that. He was always looking things up on his phone, or getting back with me after he had done some research.  Sometimes he would call his colleague from the other side of the world to get his opinion on Faith.

….from him we can learn to be HUMBLE.

When you have someone who is willing to tell you, they don’t know the answer to every question you have but is always willing to find an answer it builds TRUST.  When you have a child with a chronic illness sometime you try things that work well and sometimes things don’t. There is an art to medicine, its not always cut and dry. Dr. Teitelbaum built trust with Faith and he built trust with our family. I always trusted his opinions and always felt assured after talking to him that Faith was in the most capable hands. When he left the room, I always felt like we had a plan and it was one we could live with, I trusted him.

…..From him we learn to build TRUST.

I can tell you when you have a rare disease your health care team literally works around the clock for you.  Sending photos and questions happens more often than I would like.  The great thing is having a doctor that will answer your question at 2am…what a reassurance.  What was also reassuring was that he wanted to learn more and more.  He would come into the room and say, I was reading this study and I wanted to go over it with you.  Then he would open up a medical journal and read a study with us…..Many doctors would give us the results without explaining how they came up with them, but Dr. Teitelbaum understood, that as Faiths mom, I was his most important student about her disease and he challenged me to understand what I was reading.

Dr. Teitelbaum wasn’t practicing medicine for the last year of his life so its been a while since we’ve seen him, but he would be happy to know that I’ve kept up with reading the medical journals and studies that he taught me about….Parents who want to know everything there is to know, do not make doctors jobs easier, in fact, I know for a fact, that I can be a pain in their side, but Dr. Teitelbaum taught me that learning to learn was one of my most important jobs as Faith’s mom.

…….From him we can learn to LEARN

Our first week in-house at Mott was tricky.  I took to Facebook to ask what a resident and attending doctor even meant.  Quickly, I learned the ranks…..but Something I respected so much about Dr. Teitelbaum is the way he taught.  He would speak with the same respect to a first year medical student as he would his fellow attending physicians. His style of teaching was all inclusive and he involved Faith as much as he could.  One day when he left rounds in our room, my teacher girlfriend said to me, I think I just got the best lesson in education in my entire life, and I believe her. His teaching style is one of the things about him, that can never be replaced….but certainly carried on by his students.

…from him we learn to TEACH.

The last thing I want you to know about this man that we will miss so much involves a story.  When Faith was six it was determined that her colostomy bag alone wasn’t doing the job and her entire colon would have to be resected.  It was a scary surgery as they had to also do some work on arteries that supplied the blood to her lower part of her body.  I handed her off in the care of Dr. Newman and Dr. Teitelbaum.  They thought it could take as much as six hours to compete.  Faith was an expert at the OR at this point and didn’t need the pre-med to go back to the OR. As they wheeled her away I listened to her talk to her doctors.

Three hours later we received a page.  The doctors wanted to meet with Faith’s dad and I in the consultation room. I remember looking at each other scared out of our minds that it went so fast something had to have gone terribly wrong…When we got to the room Dr. Teitelbaum pulled out his phone and said I want to show you something.

I gasped for air and then looked at the smile on his face…..NO WAY was something wrong he was beaming….with a smile from ear to ear….He showed us a video he had taken of Faith singing in the OR  just before she had her surgery. She sang to him about going bowling with her colon, with a big smile and lots of dramatic hand gestures…..She understood how serious this surgery was, but she trusted her team that much!  That she took the time, to make up a song for them…apparently a first for him, because he was pretty excited about it….he asked our permission to share the video, and said it had a great impact on him.

He then shared that the surgery was a success and she was doing fantastic….But I loved what he couldn’t wait to share with us was the video, not to tell us about how amazing they had just done in the OR but how amazing our daughter was to him.

Dr. Teitelbaum knew he was leaving us and made sure that his patients were going to be  well taken care of in his absence.  I truly believe there is no replacing this man, but I know Faith is in very capable hands. I fear the day I have something new come up and the reality of him being gone takes my breath away like it did when I first heard about his illness.

I mourn the fact that his brilliant mind isn’t working on curing Faith’s disease. I will miss seeing him and having him watch Faith grow. I tried really hard to reach out to him once I heard about his diagnosis to thank him for everything he had done for Faith, but how do you thank someone for giving life when they are losing theirs?  Luckily, I have strong spiritual faith that this man now knows exactly how strongly I felt about him and what he has done for our family.

When I told Faith Dr. Teitelbaum had died, she was pretty hysterical.  Worse than I had expected because we knew he was going to die.  Once she had calmed down, I asked her what about it made her so sad and she said, “I just know he really loved me mom, and I really loved him.”

…. From him we learn LOVE.

 

 

It’s rare disease week.  Actually, rare disease day falls on the last day of February every year…ironically the very next day we celebrate Faith’s Birthday.

Faiths disease is rare.  Rare enough that when you try to research it  you will come up pretty empty handed.  You see many times, even in our case on the legal medical papers and diagnosis they call it by a related disease.  Pseudo-hirschsprungs….when in fact she isn’t a classic hirschprungs case, Faith has hypoganglionosis . Hypoganglionsis is believed to be a congenital defect, caused as she was developing in utero.

Faith struggled for the first nearly 5 years of her life undiagnosed.  Thankfully, when we took her to The University of Michigan Mott Children’s hospital they had her diagnosed in days and she began to receive life saving treatment.  There were three physicians taking care of her in the beginning, and our primary surgeon sat us down and let us know that this wasn’t going to be an easy road, but a long one. And that they were there to make the ride go smoother.

You really have no clue what that means when someone says that to you….I was so taken back. These were the days in my life where I wanted to hear the good news, and wish away the bad.  I loved this woman already, but I remember thinking to myself that someday, I would give her feedback that that is such a harsh reality to say to a parent whose child just got out of  an operating room after a 6 hour surgery….looking back I realize, she was so gentle with her words…she was so hopeful…there was absolutely no way to prepare us but to let us know, it wasn’t going to be easy.

And it’s not easy.  It is a struggle, everyday. I’ve thought so much lately about what makes it so hard. I think because I’ve realized lately that what makes it so hard for me is so different than what makes it so hard for her.

I think for me, what has always seemed so overwhelming is her care, and making sure I am doing everything I possibly can to give her the best shot at good health.  Faith has a broviac, a feeding tube, an apendicosty, and a colostomy bag…she requires a great deal of health care and many things 24 hours a day to keep her in as good of health as we can.  We receive 14 large boxes delivered to our house every month filled with medial supplies.  We deal with 4 pharmacies and 3 medical suppliers, she sees 5 specialty doctors.

And when you have a rare disease, so much is trial and error….thankfully we are in the hands of physicians who answer emails around the clock and as Faith says, they never give up on me….

But the care isn’t what is hardest.

Faith’s birthday was two days ago and her friend Addy had a snow day, Faith was so happy as we headed to pick Addy up. The girls were going to play with dolls all day long.  But all day long she kept going into a room by herself acting as if she was angry about something. Finally, I called her into my room and asked what was bothering her, truthfully, I was a bit irritated as I worked so hard to make the day super special…..She burst into tears crying saying to me, I JUST WANTED ONE DAY…..finally, when I calmed her down we talked and she explained that normally she’s fine with feeling crummy….that she’s used to it, but she had prayed and asked god to help her feel good just for her birthday, and she was crushed that it didn’t happen.

So that’s it..it is crushing to me, it is hardest for me that I can not fix this…I can’t give her the one good day she asked for….she told me that night when we were doing her treatment that she didn’t remember the last time she felt great. And she hates the fact that she feels better when we are in Florida than in her own home.  I stay so strong when she talks to me, because she hates to see me cry, but that night she said, its ok mom, I know this makes you sad…I don’t think sadness describes it best, I think helpless…because while it makes me sad all of the time,  the helplessness is what hurts me the most.

For Faith its simple, she just wants to be a regular kid.  She wants to have more than one or two friends that never forget about her (boy am I thankful for them) because with kids, its out of sight out of mind….but not for her.  I plan the only free time I have in my day around picking up her brother so she doesn’t have to come and see the school that she cant seem to get well enough to attend.  She just wants to be a regular kid, and people tell her all of the time she is, well news flash….that might be the PC thing to day but it is also 100% untrue.  There’s nothing regular about the way she lives her life and by telling her there is, tells her you totally have no clue what we are dealing with.

These posts aren’t easy to write…I sit here with tears streaming down my face and a lump in my throat that burns every time I swallow.  But this post, is important.  It is important for you to know that there are children suffering from rare disease and we need advocates.

For Faith, we have the Charles Woodson Clinical Research fund…There is no private institution that will ever fund research to cure Faith’s disease because there is no money in curing rare childhood diseases. Which is why we are so grateful for The Woodson fund and the research it allows.

Faiths disease has no cure, but since her diagnosis there has been advances in medicine that help her everyday.  There are safer drugs, there are new treatments, mainly thanks to advances in medical technology made possible by people who want to make life easier for children like Faith.

I have a dream for Faith that when she is older she is able to say, I had a bad day today, but that’s okay, because it was JUST ONE DAY.  With the help of great Doctors and great people who believe in medical advances I think we can make my dream reality.