Wednesday, September 19, 2012


Sure has been a long time since I've written, huh? Wow, almost a year. Sure do have alot to fill you all in on, but most of it is just the usual. So, one might ask "Why start again now?"  I'm not sure, other than I feel this need to share.

Brigitte is in the hospital, again.  Seems to be the never ending story of my life. She had surgery on Monday and isn't recovering as quickly as we would have liked, but; nonetheless, its a story that has been written time and and time again.  Seems like the never ending saga. But, that's not why I write tonight.

I wanted to share what's been going on with "me!!"  Yes, me.  Some things have changed for me over the last few months. I'm not completely certain why its finally happening, but it is and instead of running away from it like I have done so often; I am embracing it.  It feels amazing.  It feels right.  

In May, I applied to be a LEND Fellow at Children's Hospital in Boston.  I remember the day I sent my application in.  It was the deadline for it being due, and I totally did it on a whim, never imagining I would get in, and secretly wishing I wouldn't, because that would mean I would have to get out of the protective little box I have found myself in for the last six years.  The interview is a complete blur, except I do remember thinking to myself, "I am so under-qualified for this, I'll never get it."

Much to my surprise, I got a call in June that I had been accepted.  For the first time in my life, I didn't know how to feel.  I was torn in two distinct directions.  One side of my brain telling me that it was amazing and that my life was finally going to change in the direction I had wanted it to for a long time.  I finally had a purpose that meant something other than wiping boogers and making lunches.  I was being recognized for all the hard work I had put into "Saving Brigitte."  Literally and figuratively.  Then, there was the other side of me that was already plotting to sabotage this opportunity, much like every other one I had been given.

You see, for the last six years, I have done what I thought every mother would do for their children.  I have fought, I have advocated, I have been "that mother," because I just assumed that is what every parent does for their child.  I have managed to make it to every single football game, every single cheerleading competition, every single school event.  I have balanced what's right for Brigitte and also balanced the life of three other very active children who might not have special health care needs, but need me as much as she does.  I have realized that most of the time this doesn't happen.  Most of the time, people listen to the doctors,educators, and professionals.  They nod their head and just to whatever it is they tell them to do. They don't question things, they don't research, some even do nothing.  Yes, they exist.

Over the past year, I found myself advocating for Jake at school.  He has been passed along as "such a good boy,"  "he's just immature, he'll catch up."  Only to find out that I should have followed my instinct a while ago when I thought something was wrong.  I was lucky to have an ally in his fourth grade teacher, whom to this day, was instrumental in getting him diagnosed after so many others just ignored a very obvious problem.  Jake was diagnosed with NVLD in February.  

Again, I was immersed in a world I really wanted nothing to do with, but was learning as much as I possibly could learn.  Pushed into a community that I now realize so desperately needs me and my passion to do what is right for these kids; not only my own, but countless others.

Its been two weeks since I started on my new journey as a LEND Fellow.  I proudly describe what it is.  I have a confidence about me that I didn't know existed because I am constantly down-playing just how critical I have been in my children's development and subsequent successes.  It was pointed out to me again on Tuesday, as I sat in another training class that started this week.  I am taking a course on Educational Advocacy through the Federation for Children with Special Needs.

We were going around the room introducing ourselves and what our affiliations were, when the Executive Director stopped me to tell the class just how elite the group of LEND Fellows were.  At first I was embarrassed, but then it happened.  This wave of pride came over me and no matter how hard I try, I can't get it to go away.  I am finding myself fantastically overwhelmed by all the knowledge I am gaining from both of these programs.  I wake up every. single. morning., EXCITED about my future and that of my children.  Excited to finally put my knowledge out there to help others.

I will admit, it has been very difficult to leave the hospital for my classes this week, but as my good friend Cristin, a former LEND Fellow,( said, "giving yourself over to the class is an investment in her and her future."  How right she is!!!  With any luck, it will also be an investment in the future of children and families who walk the road of disabilities.

Saturday, August 13, 2011


Last night was one of the most memorable nights in my life. I will never forget it.

We are a HUGE football family. We lived for the day that Jake would take the football field and follow in Buppa and Uncle's footsteps. Naturally, we just assumed that Sean would follow as well.

This time last year, I was a nervous wreck, but was calmed and reassured by so many family, friends, and WILDCAT family that bleeds blue, just like us. Sean was going to have what would be the first of two major brain surgeries in two months time. He certainly wouldn't be tying up his cleats each night with Jake. Instead, he would watch his big brother from the sidelines every Sunday with a 6 inch scar on the back of his head. A constant reminder of what was.

This year practice started about two weeks ago. Sean had clearance to play, but made the decision not to play. It just wasn't his thing and he didn't want to do it. No big deal. Would save me from having to have 3 kids on 3 different teams. Phew.

Thursday night that all changed. He was begging me to play. Part of me was thrilled, the other part of me was enjoying the thought of having one night during the week of not having anything to do at all. Family dinners at the table every Thursday night. Sean felt left out.

So, last night, Sean sat on the stairs lacing up his cleats just like his big brother, just like his uncle, just like his Buppa.

Not even 12 months later, my baby, the one I put in a NeuroSurgeons hands TWICE. The baby who had one piece of his skull removed during the first surgery and had another piece of synthetic material placed in his brain during his second surgery......was PLAYING FOOTBALL! I have visions of my boys playing together for years to come. People are going to whisper "That's those Kaiser out, they are THAT good." Most will never know what one of those boys went through physically nor what the other went through emotionally...watching his little brother being wheeled to the operating room twice, not knowing if he would ever come out the same way.

Enjoy life. Live Life. Love Each Other. Be Thankful.

Matthew 17:20

And He said to them, "Because of the littleness of your faith; for truly I say to you, if you have faith the size of a mustard seed, you will say to this mountain, `Move from here to there,' and it will move; and nothing will be impossible to you.

Wednesday, August 3, 2011


So summer is in full swing...almost seems as if it is over. Goes by so fast, doesn't it?? We are spending our days squeezing in appointments and our nights at football and cheering practice.

We came back from vacation to the harsh reality of Bryan putting in 72 hour work weeks and spending 14 hours a week commuting. I know we should be grateful that he has a job when alot of folks don't. Another negative of an economy like this is that prison system gets busier. Good for our wallet with the amount of overtime available, but sad in a sense that people get more and more desperate to do what they need to for their families.

We are in our own desperate situation on a few fronts. I alluded in my last post that things weren't all that great for Brigitte. Sometimes that's even hard for me to believe when she had a good night like tonight. I spent the morning in at CHB meeting with her team once again. They are planning an admission for this month....or I should say, we are hoping it happens this month.

For three long years, we have been playing the gtube-central line game. A few weeks ago, we went back to playing the GJ tube game against our better judgement. Unfortunately for Brigitte, I should have held my ground and not moved forward with it knowing it wasn't going to work out. It lasted longer than I expected, but we wound up at CHB last week having it pulled because it migrated back into her stomach. Brigitte isn't like most kids and the complex web of her intestinal organs don't make for a smooth placement in Interventional Radiology. She needs it done in the OR. We can't be going to the OR every few days or weeks to replace GJ tubes, so we made the decision to call that experiment quits. So here we are again with the whole "is she or isn't she" idea of whether or not she is in complete intestinal failure. Its a game I am not going to keep playing. Her emotional status is far more important for us to continue to experiment on a 5 year old. So, we have agreed to one last admission on this issue. The only reason I have agreed to it is that there has been alot of question over the years as to whether or not her issues are behavioral, pain, or a combination of both. This admission is hopefully going to give us some clarity on this. I say hopefully because I am totally jaded at this point. Her team is putting together a very good plan of action and I just hope that all the "to-do's" on our list are accomplished before Brigitte, her team, or myself get to frustrated and call it quits. They are anticipating this to be at least a two week admission.....and that to me means more likely than not, a month. I hope I am wrong. So wrong. The plan is to take her off of her TPN and see how she does. If her behavior escalates due to advancing gtube feeds, we know this is a problem. Then we need to find out whether or not narcotic pain medication can help us push forward. If not, we decide whether to switch to a full psychiatric admission in the psych unit of CHB...if that isn't the way to go, we finally accept that she is going to need a central line and be given IV nutrition for the rest of her life. For those of you who don't know, you can't survive forever on TPN without significant liver damage. At that point talks of liver transplants as well as transplanting intestines etc. begin. So this isn't an easy road to begin walking down on alot of levels. Never once in my life did I think I would be hoping that psych issues were a blessing...but in this scenario, you can live a long life with psych issues. "There are no blessings that can't become a disaster, and no disasters that can't become a blessing." ~~Richard Bach

So, on another side of read earlier that Bryan is spending over 86 hours a week away from the house. This leaves little time for any kind of family life. He is so exhausted on Saturdays that it takes half the day to recover and get a little bit of sleep, I am exhausted because I have been home alone doing everything by myself....and then we have Sunday and it starts all over again on Monday. One day a week to be a full family? Not acceptable. We are spending more money than we can afford in gas with Bryan going back and forth to work, and me taking Brigitte to CHB which has been roughly twice a week if not more this summer. Its been old for a while, but has just gotten that much worse this summer. Did you know that the divorce rate for parents of children with special health care needs is roughly 85% ? This is not what we want for our family. We have worked far to hard and for far to long to become a statistic. My kids have been through enough and I deal with far to much on a daily basis to add divorce to my evergrowing list of stressors. I cannot and will not let it happen. Soooooo.......we are moving. Fast. Seriously. *insert scream, sigh,* LOL!!!

We have a found a very nice house in a north of Boston suburban home....and we think it is really going to take so much of the strain we have financially, emotionally, etc. off of our plate. I am scared, excited, anxious, nervous....umm, yeah, I'm shitting my pants. We're moving in less than three weeks. I have a child that will probably be in the hospital and the kids will be going back to school. I can do this. *again, insert cheering section and lots of positive affirmations here* Please and Thank You.

I'm sure alot of you are wondering how in the hell we are going to pull this off and get ourselves together in three weeks. One thing I have learned through this journey is that there is always going to be stress. It's a given, especially when you love and adore a child like Brigitte. I have watched that child fight when not a single one of the premier doctors at Children's Hospital thought she had any fight left in her. She's still here. Still driving me to drink on more days than I'd like to admit!!!!!! (Actually, I gave up drinking and diet pepsi, so I am a stark. raving. loony.) So how dare I sit here and say that I cannot do something. Life is hard. Some days more than others. Some hours more than most. I have watched far to many of my good friends lose their daughters in the last year. There may be a day when I am that mom......but in the meantime, my only goal is to make the most of every single day my daughter has on this earth; and make it a damn good one. Thats it. END. OF. STORY.

Wednesday, July 20, 2011

The Good.

Hi Everyone!

Hope this finds you all doing well. I wanted to share some recent pictures of our summer and show you how big Brigitte is getting! Tall....not wide! LOL!

We were blessed once again by my father and Robyn taking us on a vacation last week. Despite the bumps in the road we encountered while we were away, I was so thankful to just be with my family. Dad and Robyn stayed with us for 4 days, then we had the rest of the week to just be a family.

I will follow up this blog post with some more details of our vacation, and some difficult decisions we are facing regarding Brigitte's care over the rest of the summer.....but before all the sadness, I want to leave you all with some wonderful pictures of Brigitte and our family. We do try our very best to make the best of the good days when we have them as we know that they are short lived and that our future is very uncertain. One Day At A Time. Live for the Moment. Live Like You Were Dying.

You get the picture! Now here are some beauties!! Enjoy!

Shhhhh.....don't tell the doctors at CHB she was swimming! She LOVED it!!!! I so wish we had a pool or hot tub for her to go in all the time. She was like a fish!!!

Wednesday, June 29, 2011


What an interesting few weeks it has been. The one thing I keep finding myself saying is "Seriously?" Really, sometimes I can't even believe the things that happen in our everyday. I don't think I would even believe it if I weren't living it. The thing about all of it is that I don't know whether I really am going crazy or not, because all I can do is laugh. I can't cry. No more tears I guess. Not complaining, because I KNOW there will come a day when I really can look back on all of this and say "COMPLETELY UNBELIEVEABLE" and realize that at the same time it was making me, the kids and Bryan.....who we are today. Sometimes though, there is just a small piece of me who wishes that we weren't given all of these tests to pass. Give someone else a chance...but I know there are reasons behind them and so far we continue to make the best of every situation and chalk it up to just another day in paradise.

Brigitte has had a very, very tough few weeks. She literally is in a psychological crisis, most likely induced by pain and medical trauma. You are right in reading that my four year old (almost 5!!!) has really been driven crazy. She is on more meds than I can list and none of it seems to be helping. She has become combative to herself and others and until two nights ago, was running on less than a few hours of sleep a night. She was admitted to the hospital for a few surgical procedures, specifically switching her Gtube to a GJ tube. What was supposed to only be an hour under anesthesia turned into four hours and when she finally came to, she was a child we had never seen before. Completely delerious. Thankfully, we are finally picking up on what is really helping, and its pain medication. The poor little thing has been in so much pain, it literally made her crazy.

We came home from the hospital on Sunday night.....only to return on Monday night. Not with Brigitte, but with Sean. Again. Remember the pattern??

Sean decided to take a header off his scooter. I took him to the local urgent care because he needed stitches to his forehead.....also turns out he broke his hand.....and while we were at it, decided to have a spinal fluid leak from his ears. So off to Children's we went. THANKFULLY, the leak stopped. He got 6 stitches and orders to come back on Wednesday to see the hand surgeon since the swelling was so bad they couldn't cast him. Today it was a bit better. He does have a displaced fracture, but the doctor is optimistic it will heal nicely. Got himself a fancy cast....and back again in 3 weeks for more x-rays!

Saturday, June 18, 2011

Exciting Fundraising News!!!

As many of you know, Brenna is an all-star cheerleader at East Celebrity Elite in Tewksbury, MA. This is her second season there.

At the end of the season last year, we got to know a few people in the gym as well as a couple of the owners. I was asked if they could do a fundraiser for our family. One of the great things about this gym is they teach the athletes that life isn't all about cheering! They are taught to become good people on and off the mat. They are constantly reminded that they are very lucky to be a part of such an expensive and time consuming sport and that there are plenty of children who aren't able to do what they do for one reason or another. Last year they held a "tumble-a-thon" for another little girl who became an amputee due to a rare bacteria. ECE was able to raise over $13,000 to help defray medical costs and to contribute to and extreme home makeover making her house handicapped accessible. This year, they have chosen us.

First off, I was completely overwhelmed, and again very humbled that people actually care enough about our family and genuinely want to help. As you can imagine, I am sure, after reading some of the more recent blog entries, is that things are again becoming increasingly difficult for Brigitte and therefore financially for our family.

A tentative date of August 12, has been set as a Stunt-Fest at East Celebrity Elite! It really sounds like a lot of fun! I am so grateful to all of the parents, cheerleaders, coaches and owners for helping us with this!

Brigitte LOVES, LOVES, LOVES to be outside! A kind gentleman, Eric Buck, from Pollock Land Planning has donated his services to plan a new deck and patio for us. As many of you who have been following the blog for a while may remember, a year ago Brigitte got a nasty infection in her central line that came from a bug that only is found in the dirt. We have no idea how she got this, but now have to be very careful about where she plays. We are hoping that we can somehow incorporate an outdoor play area next to this so that she can go outside and enjoy the fresh air. Pollock Land Design has almost everything donated for labor, but has struggled with getting decking materials. We are working with Santosuosso/Applewood Construction to get some decking material at cost and we will be using the funds from the Stunt-Fest to help pay for this, as well as helping to defray costs associated with our constant trips to Boston.

I cannot emphasize enough how generous people have been to our family. I would strongly encourage anyone who needs construction work to utilize the services of Santosuosso/Applewood Construction or if you are in need of a great landscape designer, please call Eric at Pollock Land Planning.

Our other fundraiser is "Saving Brigitte Bracelets!!" They are pink and we have two versions of them. They are being sold for $5.00. If you would like to purchase one, please send a self-addressed, stamped envelope to me! Shannon Kaiser 1 Chestnut Hill Drive Londonderry, NH 03053 I will ship them right out to you! Or you can also purchase one at East Celebrity Elite in Tewksbury!

On a medical note, Brigitte is being admitted to Children's Hospital Boston on Friday, June 24. She is going to have an endoscopy, laryngoscopy and a bronchoscopy done. Her voice has become excessively hoarse over the last few months and is slowly getting worse. We aren't sure if there is a "problem" going on in there or if it is muscle deterioration. She is also going to have some botox put in her pylorus to see if her stomach can empty a bit faster, as well as have her GTube switched over to a GJ tube. We are hoping that we may be able to get her to tolerate feeds better by bypassing her stomach and putting the formula directly into her intestine. This is going to be a very long procedure and the last time we tried it, it didn't go very well so we could really use your thoughts and prayers for this to be successful and that she tolerates the anesthesia well.

I will continue to keep you posted! In the meantime, enjoy this wonderful weekend. Happy Father's Day to all the dads out there....especially, mine! Dad, I love you!!

Friday, June 3, 2011

Newest Update......

Hi Everyone,

I am writing this update so I can apologize upfront if I am a little distant. I am taking some time to just "feel badly" and am hoping to get back to another new normal soon. I am also not writing this for anyones sympathy. As I stated when I started this blog, it is for me. It is a document for Brigitte to see when she is older, but also as an outlet.

Over the last few months, it has become apparent that Brigitte's condition has been slowly deteriorating in certain areas. When we went back inpatient in April to have the line placement it was the beginning of a new reality for us. While we were there, the Director of Metabolics approached us, along with Brigitte's Cardiovascular Geneticist. They wanted to do a "team" consult on Brigitte and talk to us about a few things. This talk turned into 3 hours of bedside conversation. Intense bedside conversation. It ended with a slew of blood and urine being taken from our sweet girl and an apology. "We're really sorry, but we are going to take care of her as best we can."

Over the last few weeks, new information has been trickling in. We have also had some new symptoms starting. Some that make us very uncomfortable, others just a subtle warning that things are changing.

We had two big appointments this week. One was a follow up with metabolics to go over more information and to report results of the lab work that has come back. The other was a multi-disciplanary (all her specialists) care conference called for by her hospital, not by my husband and I. Instant red flag. When the team wants to talk to you, you know something is up.

I will cut to the chase. Brigitte is finally being diagnosed with Mitochondrial Disease. We are not sure whether this is a primary mito or a secondary (the result of something else). We have been asked permission for two prominent doctors to write a proposal for full genome sequencing to be done. This alone is over $300,000 and has to be approved by the hospital. Only certain centers across the country do it and it can take years. There are over 300 billion pieces of DNA that need to be looked at. The doctors feel that she likely has two genetic defects and that the combination of the two are causing her mitochondria to malfunction. We have only identified the first. What does this mean?? It basically means that Bizzy's DNA is a train-wreck that is screwed up at a cellular level which in turn causes problems in every organ system in her body.

What do you do? What happens? There are no easy answers to any of these questions. The first thing we are doing is slowly starting her on a "mito cocktail." This is a combination of vitamins and enzymes that help the body make energy. There are usually 12 different medications that make up the cocktail. We have opted to start one at a time so we can be sure what caused the problem if her body were to have a reaction to something. It will be a long process. There is no cure for Mito, but this can help.....and vitamins and enzymes can't hurt, so we are game! After that, we are just treating symptoms as best we can. We are going to have the PACT team take a more active role in her care. This is not hospice. It is a team of people that will help us make decisions that best fit a quality of life aspect versus a quantity of life. Brigitte is still a full code and by no means says we are giving up. Just the opposite. When you hear from a room full of doctors; all who have their head down and have a hard time looking you in the eye, tell you your child has a progressive disease it is scary as hell. But, if you know me, you know I don't quit or give up that easily. I should have gone to law school, not my husband because I like to fight like hell. Which is just what I am going to do for Brig. It's funny, as I am writing this my email is going crazy with messages from her team. I am thankful that over the last few years I may have been labeled as "that mother," but it has been apparent over the last two months that this isn't a bad thing. I am a well respected part of her team and her doctors value my input. We have a few here and there that don't prescribe to our "plan" but we are weeding them out when we have good people to replace them with. I would also be remiss if I didn't acknowledge the "team" I have put together at home too. I have family. Some so amazing I wonder how I got so lucky to have them in my life, others not so much....that drop everything and do what I need. They know who they are. They know why I can't name them by name for the backlash from those who I don't name will be far harder to deal with than hearing "your daughter is dying." Fuck the rest of them who only seem to want to "deal" with us when we are in the hospital. I have an amazing friend, who's daughter died last year, but she is so fantastic that she doesn't let me do ANY of this by myself despite her own hell she lives every single day. She has guided me when I am right and has no problem telling me when I am wrong. Karen, you rock! I have an amazing nurse at home that lets me know when its not ok to let simple things go by because I don't "feel like" heading to Boston. She was the one who picked up on the seizures that picked up in intensity and led to Brig finally being put on medication. She lets me know its "OK" for me to have alone time. Maria, we LOVE you. You are family! We have an amazing community that has taken Brigitte under their wing and thinks of us during every season....not just football and cheer. We love being part of the Wildcats and East Celebrity Elite.

So, as hard as it is to think that I am going to outlive my daughter, I have to live in the present. She is kissing my arm and has said "Mommy, I NEEEEED you" 100x today.....yet, she has no idea how much I need her. We will have times when we spend days in the hospital trying to "fix" the latest crisis.....but we are going to "live it up" as best we can, for as long as we can! My dad sent me an email today. It said "Brigge is a fighter. Always has been. Always will be. I believe in her strength and her perseverance." I do too, Dad. I do too. So we will fight the good fight for as long as she'll let us and always remember we aren't "Saving Brigitte" nor have we called her "The Christmas Miracle" for nothing.

Wednesday, May 11, 2011

Dropping the ball.....again.

It's 11:15 and I am sitting here, realizing that I have done it again. Done what you asked? Well, actually, its a matter of what I didn't do. First time I felt bad, this time, I feel downright incompetent. Actually, I just realized I have done it three times. Now, I feel like an ass.

Last week I was supposed to have dropped off a gift card for teacher appreciation week. Forgot to do it. At least the mom was nice enough to remind me and really understand. I still felt bad. It was that same night, that I realized that I had never sent in the money for the Father/Daughter dance. You know, the dance that my child hasn't wanted to attend for the last few years, but now all of a sudden does. So I emailed again, with apologies again...and got a "Please send the money in tomorrow!" Ok, done.

Today, I was supposed to make macaroni salad for teacher appreciation week. Except I thought it was tomorrow.....not today, and the luncheon is RIGHT NOW. I am the ass of all asses and there isn't a damn thing I can do about it except apologize.

I hate to use Brigitte as my excuse, but sometimes she is all I have. I am trying to manage a busy household of 4 kids....and a husband who doesn't come home much during the week because gas prices are too high and he's exhausted.

I am juggling 2 baseball teams, all-star cheering, private tumbling lessons, therapy sessions, IEP and 504 meetings, doctors appointments, food school, a husband, a dog, etc. There is no time for me....and I don't allow myself to make mistakes. Yet, I have made 3 BIG ONES in the last week all at the expense of the three children who deserve it the least.

Today's post is a total vent. Not looking for sympathy or excuses....just getting it out on paper. Being accountable for it and admitting it. Realizing that I really cannot do it all.

Thursday, April 21, 2011

She tried.....

So in my last post, I alluded to the fact that things hadn't been great for Brigitte for a while. Sadly, they haven't gotten any better.

I went to Florida with Brenna for her National Cheerleading Competition back in March. We had a wonderful time together and I was finally starting to feel a little normalcy. It was wonderful to be away and I couldn't help but think about how great the summer was going to be. We arrived back home from Orlando on a Monday night at 10:45.....Brigitte hadn't been doing all that well on Monday, and she was admitted to Children's on Tuesday morning at 9:00 am. I didn't even get 12 hours at home.

We spent the next 10 days inpatient, where she underwent 3 different surgeries. During one of them, her blood pressure dipped dangerously low and she needed a very strong medication to avoid a code. The last was to remove the port she had in place because it was infected. She has been without central access since then....and it has been a downhill slide since then.

We knew that this was a big concern and I have to be honest and tell you that nobody on her team was comfortable with the decision that Bryan and I made to take her home without a line. But, we needed to put all of the "can she do it" wondering to rest and give her the opportunity. So for the last month, we have struggled and struggled with trying to feed her and keep her hydrated. From a health standpoint, we have also battled a pneumonia as well which hasn't helped things. From a nutrition standpoint, it is hard to ever recover from illness when you are are not optimizing nutrition and hydration. Brigitte is now below the 30lb mark....she will be 5 in August. Her size 2T pants are falling off of her. I feel like I am going to crush every little bone in her body when I hug her. It is so sad.

Thankfully, she has had a good week at school. It is the only place she is happy. It is the only place where everyone just leaves her alone and lets her be a little girl.

Her behavior has been absolutely horrendous. She is hitting herself, throwing temper tantrums, and slamming her head against the floor. We are attributing this to the fact that dehydration makes you feel just plain crummy and she can't express herself and this is how she reacts. It is awful to watch. My heart truly, truly aches to watch her like this. Add to this that food in her belly really just makes her sick, she is gagging and retching with quite a few of her daytime boluses and we spend every morning holding her hair back with a towel in front of her face waiting for her to say "I all done" while she vomits from the intolerance to the overnight feeds.

This is no way for a little girl who is typically so happy to live. None. Its not fair.

So, next Thursday her surgeon will again use up another precious access spot (you only have so many in your body) and place a central line. She will resume TPN and hydration immediately following the surgery. I honestly don't know where we go from here. I don't know what her future please, don't ask me. I just wanted to keep you all up to date and again ask for prayers for Brigitte. Thank you so much for always thinking of us. It means so much to us. It really does.

Thursday, April 14, 2011

It's been a long time......

I wish I could say that things have been so gloriously good and that is why I haven't written...but that would be a lie! But that isn't what today's post is about. I will save you all the gory details of the drama of the last few months for another post on another day. Today instead, is about my oldest daughter, Brenna.

Brenna will be 10 on Saturday. I simply cannot believe it.

Was she not the most beautiful baby?!?!? I know I am biased, but I don't think there is a single one of you that can look at that picture and not say she was a gorgeous child. Not only is she beautiful to look at, but she has become a beautiful person with more determination and compassion than I could have ever instilled in her.

Brenna had her banquet with East Celebrity Elite last night. I walked in there thinking how amazingly proud I was of Brenna this year. Although it was not her first year as a cheerleader, it was her first year at a gym of this caliber. She walked through the doors of ECE last May not knowing a soul and only having a tumbling skill of a cartwheel and a roundoff. She competed nationally and her team placed 3rd in the Nation at the UCA Nationals in Orlando this past March. She learned what hard work really was and also that if you put your mind to something, anything you want can happen.

The last few years have been anything but easy for Brenna. Growing up the oldest child of a large family is a job in and of itself. Being the oldest girl in a family with a child with severe medical issues is another story. Brenna has learned to rise to the occasion. She is wonderful with Brigitte. Her patience is that of a saint (she does not get this from me!!!) and her grace is something we should all strive to acheive. She has always been a good girl and my dad is right when he says that she is always happy. She truly is. She has become quite the little comedian and I am finding that she is developing a bit of my, ummmmm, sarcasm! It has been nothing but sheer joy to watch her grow over the last few years.

Last night, though, I saw her change in front of me instantly. The banquet consisted of the owners of the gym, coaches from various teams, parents and of course all the girls on the mini and junior level teams. Each set of coaches from each team got up and said something about each girl on the team and then had a few "specialty" awards to give out. One of them was the unsung hero award. As they were describing this cheerleader, they said "she is a girl who always did what we asked of her," "she is a girl who never complained if she were in the back row," "she volunteered to fill a void whenever we needed her to," "quietly one day this girl said "I can do my double backhandspring, want to see it?"....and then landed it perfectly. The Unsung Hero for Junior 3 is........Brenna Kaiser.

I was in a room full of people and just wanted to cry. I have never been so proud, with the exception of the day I gave birth to her.

The definition of an Unsung Hero is: a person who makes a substantive yet unrecognized contribution; a person whose bravery is unknown or unacknowledged

Reading this definition this morning, I realized that this award couldn't have been more fitting. Brenna certainly did her share and earned that award all on her own. But she is the unsung hero of our household as well. She has taken a backseat over the last four and a half years. She has sacrificed and been brave far beyond any 10 year old I have ever met. She never asks for anything, never complains and yet, just when I think I am going to lose it on Brigitte some days, Brenna walks around the corner and takes her by the hand to the other room and plays with her. She does all of this and yet NEVER, EVER asks for any recognition. None.

She is amazing. She is beautiful. She is smart. She has worked to land backhandsprings and tucks. She has a wonderful imagination. She is determined. She is compassionate. She is my daughter. And I am the luckiest mom in the world to have her.

Happy 10th Birthday Brenna!! I love you with all of my heart. You make me so proud every, single day.