Two Little Words . . .

I have to vent about something. Something that I can say I am truly grateful for; but in the same breath I can say this drives me crazy as well. Health Insurance. Who knew these two little words could provoke such an emotional response in an individual?!

Working through the health insurance information for Gavin is well . . . a nightmare. We actually are VERY fortunate and have coverage by two insurance companies, but keeping things in order is overwhelming. My little multi-million dollar baby has left quite a mark in our family filing cabinet! I can't even begin to explain the paperwork we are still receiving for his medical treatment. My expando-folder can't expand any more!

The frustrating thing is that it's hard to move on financially (emotionally is a whole other topic) when you are waiting for the other shoe to drop. I have called both insurance companies multiple times asking about claims processed, claims denied and claims pending. I can't get a clear answer on what will or won't be covered. I feel like there will never be an end! It's hard to sit back and wait for the bills to come in. Will we have bills? Will we get lucky and have his costs covered mainly by insurance? Or (as I often worry) in one, two or three years will the final bills come rolling in? UGH . . . it's just the anxious part of me that wants to know the end of the insurance story. I know there are many of you who have had to deal with this as well. Any suggestions?

An Angel is Hard to Find

I have been thinking lately about all of the people who have lost children and have had struggles with their children's health. I feel so ashamed that it has taken this kind of personal experience for me to truly empathize with people who have to carry these very difficult burdens. This poem was given to us by one of the kind receptionists at the mortuary here in Las Vegas when we went to dress Gavin. It's simple and sweet . . . and for those of you that hurt, I hope you can find a smile today. We are thinking about you.

When God calls little children

to dwell with him above

we mortals always question

the wisdom of His love.

For no heartache can compare with

the death of one small child.

Who does so much to make this world

seem wonderful and mild.

Perhaps God tires

always calling the aged to his fold

and He picks but a few

to make the land of heaven

more beautiful to view.

Believing this is difficult

still somehow we must try.

The saddest word that mankind knows

will always be "good-bye."

And so when little ones depart,

we who are left behind,

must realize how much God loves children

for Angels are hard to find.

Sometimes I Wonder . . .

. . . what would Gavin be like today? Today he would have been eight months old! So many questions run through my mind on birthdays and anniversaries that remind me of him. Eight months old. What does an eight month old do? If he were here and healthy, would he smile? Would he laugh, cry and make funny faces? Would he sit up or roll over to his tummy? Would his bright blue eyes shine the way they used to? Would his hair have stayed so blonde? What would we like to play with while daddy was at work? Would we go on walks around the park when daddy came home? Would we laugh and roll around on the ground and play with him? Would we read him books and sing to him at night? Would we bring him to our bed on Saturday mornings to cuddle and love him?

I hope this isn't too negative, but we wonder these things because we sometimes feel a little cheated of earthly-parent experiences. Even with feeling cheated, we do know that we truly have some amazing blessings as well. Blessings that we can't even comprehend at this point in our lives. And because I am starting to understand the bigger picture I wonder other things too . . .

. . . what is Gavin doing today? Is he running and playing with other little boys and girls in heaven? Is he showing and teaching people about the truly important things in life? Is he helping fulfill a greater cause than we can understand here? Is he watching over us? Does he know that we are so grateful we had three months with him? Does he know that his sweet pictures still make us laugh? Does he know we love him and miss him? Is he counting the days to be together again like I am?

Just a few things I wonder about on days like today . . .

March Madness

So, this past weekend started the Madness that is March in our home. I have to be honest, I usually look forward to and even participate in the madness. Each year we fill out brackets with both families and it's fun to compete and compare picks. However, after eight hours of non-stop basketball I need to get out and do something else. I just don't know how these boys don't get tired of watching game after game! I am usually a fairly good wife about the basketball madness and last year I even encouraged a weekend in front of the tv when I recommended we stay in and order pizza. That's what a good wife does, right? This year I haven't been quite as supportive (so sorry Jason) but I intend to change. So, Jason, I promise this upcoming weekend will be spent in front of the tv watching games and eating pizza!

Easter 2008

HAPPY EASTER! This weekend Jason's parents were in town and we had a wonderful Easter morning with them before they headed back to Salt Lake City. After church, Jason and I met up with my parents, siblings and grandparents at the cemetary to spend some time with Gavin before our Easter dinner at mom and dad's house. Easter has a more personal meaning to us this year. Of course, I have always believed in the resurrection . . . but I now find myself looking forward to that day on a more personal level when Jason, Gavin and I will be together again. I thought it would be a difficult holiday for us, but it actually turned out to be a sweet and uplifting day. I loved being in primary and hearing the children talk about Easter and what it really means to them.

I just wanted to post a few pictures from today!

These are apple dumplings - and they are SO good! This was the first time I made them, but they were perfect for Easter breakfast with Jason's parents.

Jason and I took an Easter basket over to Gavin in the morning.

Jason's parents brought Gavin a cute little bunny for Easter.

My family had a nice time visiting with each other and spending a little time with Gavy.

Uncle James, Uncle Matt and Daddy visting with Gavin.

An Answer to Prayers and A Window to My Fears

Perhaps you may think the title of this post is a contradiction or paradox. But this is the feeling in the Bailey house this week. We actually have some great news. This week I spoke with the geneticist again and my OB and they have all officially cleared us to have future children. I asked the geneticist the question, "Are you SURE?" about a million times and each time she said, "Lindsay, there is no reason to not get pregnant." Of course, as we have been told multiple times, there are no absolute guarantees in genetics but they all feel very confident that this was a one time situation. With the CHG array test that returned negative, they are pretty sure that Gavin's mutation must have been a single isolated occurrence that is too obscure to be detected. It was very exciting conversation and it is truly an answer to many, many prayers. This past week as Jason and I discussed the final word, I felt so much joy. Our future children will never replace Gavin - he will always have his momma wrapped around his finger. He will stay one of my constants throughout the rest of my earthly existence and will keep an extra special place in my heart. However, this being said, the thought of having another baby brings so much joy and so much worry. I feel like I can maybe, just maybe feel real joy again. Maybe I will get to be a mom like all of the other moms I see. It has been such an answer to prayers and we are so thrilled to have this news so quickly. We had been anticipating months if not a year of testing and wondering. We are so blessed to have had this process go swiftly.

Now to the second part of the title . . . my fears. While we are so happy to receive this news it does bring about a great amount of worry and anxiety. Since we don't know what Gavin's syndrome was, the doctors can't give us a number - meaning they can't say "you have a 1 in 100,000 chance" or "you have a 1 in 2 chance." This means our decision is going to be made solely on faith and hope. With all the excitement of thinking about a new baby, I also thought about how mentally exhausting the pregnancy will be. No test would have picked up Gavin's mutation. There was NOTHING we could have done to prevent or predict Gavin's problem. We didn't know until he was born that he had problems. So, in turn, we will worry until the day a baby is born. There will not be a moment that the thought won't be in our minds about the chance that this child may have issues comparable to Gavin. I worry I won't be able to enjoy this pregnancy the way I enjoyed Gavin's pregnancy. Things are just different now.

We are feeling such a mix of emotions. We are happy, excited, nervous and terrified. If we are able to get pregnant again it will once again be a roller coaster.

Moments That Take Our Breath Away

This is most most recent creation using Photoshop

All Little Boys Pick Their Noses

Boys are boys, aren't they! I have been going through some of our favorite Gavin pictures and found these. I thought all you moms with little boys would get a kick out of these pictures. Really and truly . . . we DID NOT POSE his hand. Jason was rocking him and we aren't sure if he discovered his nose or if he decided he had had enough of his NJ feeding tube down his nose.

It's so funny to see my sweet little boy trying to stuff his fingers up his nose!

Gavin's Memory Box

Gavin has a wonderful daddy - Jason just loves him so much. This week is Jason's spring break and for the past few days he has been hard at work in the garage finishing Gavin's memory box that Brent built in November. Brent did such a beautiful job on the wood work and Jason has done an equally beautiful job painting the box to match our bedroom furniture. We decided to paint the box black (not because we are morbid - it really matches our bedroom furniture) and distress the corners to give the box and antique look. We still have to finish the inside of the box, but I thought I would post some pictures of our progress. Good job Jason! It will be a wonderful place to keep all the special memories we have of Gavin.

Nothing like daddy's hands hard at work!

Doesn't the box look beautiful?

We put the letter G on the front of the box to give it a little "personality." :)

Happy Bert-day Jamesy!

Today my brother James turns 23! I can't believe it! I look at this picture from his first day of Kindergarten and I am so happy I am his big sister. For those of you who don't know James, he is one of the kindest, most sincere boys. We had so much fun growing up and planning "things." Before our family would go on a vacation to Disney Land, James and I would sit outside on the swing set and plan our route around the park. We also love the memory of the bus stop where he was sprayed with shaving cream by an older boy . . . but I took care of that boy. Nobody was going to mess with my little brother! :) That's what big sisters do! We have so many fun memories and I just want my Jamesy to have a happy bert-day (he had a lisp as a kid . . . that was the way he said birthday). You are a wonderful brother and I love you!

My Red Shoes

Some things just never fade in life, no matter how old you get. I guess for me, my thing is red shoes. I just love my new red shoes (in the above picture). As I was looking through an old scrapbook tonight I realized that I must secretly have a thing for red shoes. As a little girl I LOVED the Wizard of Oz. I was so infatuated with Dorothy and her make-believe world that my mother made this Dorothy dress for me when I was in Kindergarten. I still remember coming home from school to our old house and my mom holding up the dress. I was so surprised, I didn't know that she had been working on it every day while I was at school. I honestly remember sitting on the stairs and trying on the dress. I, of course, needed the red shoes to go with the ensemble along with a puppy in a basket. Well, my parents didn't let me have a real puppy, but mom did take me shopping ( to Payless - I remember) to buy my "ruby slippers."

Everyone . . . Please Don't Laugh At Me!

Well okay, laugh if you must . . . but last night was the first night I have EVER made anything with zucchini. I don't know why, it's not that I dislike zucchini or anything, I guess I just don't know what to make with it. In fact, the only reason we had it in the house was because it came in our Winder Farms organic produce box this week. Jason was dropping hints for me to make zucchini bread, but if I have something that like that around I will eat it - and I can't afford those calories! :) So, I decided to just bake the zucchini and have it as a side dish for dinner. I roasted the sliced zucchini with garlic, salt and pepper and it was DELICIOUS! I've really been trying to cook new things - but I am awful in the kitchen. Well, maybe I would be better if I had more time, but by the time I get home from work and the gym I am exhausted and the last thing I want to do is cook. Now I know a healthy and quick side dish and maybe, just maybe I can start trying to cook more. And yes, I realize that posting about zucchini is way lame. :)

Grandpa Dave's Baseball Enthusiasm

If you know my father well, then you know that he loves baseball. It doesn't matter how good or bad the Cincinnati Reds are during the season . . . he will watch or listen to every single game. He loved baseball as a kid and had hopes and dreams of one day being a professional baseball player. Well, like most little boys with a dream of being a professional athlete, his career didn't turn out the way he thought it would. Instead of playing baseball, my dad is a very accomplished and successful medical malpractice defense attorney, a wonderful and supportive father and best of all . . . GAVIN'S GRANDPA! Grandpa Dave loved every minute he could spend with Gavin. On more than one occasion while we were at PCMC Grandpa Dave would just appear at the hospital! He would wake up in the morning and decide to catch a flight from Las Vegas to Salt Lake City to spend some quality grandpa-time with Gavy. Often Grandpa Dave would run ahead of the rest of us as we walked through the hospital so he could be first in line to see Gavin. So, what does a loving grandfather do with his grandson this time of year? Baseball spring training - of course! Last week Grandpa Dave went on a mission to find a little baseball glove to leave with Gavin. So now, Gavin has a cute little baseball mitt and baseball by him. Gavin is such a lucky boy!

Do You Really Want to Ask the Baileys to Babysit?

Tonight I was able to babysit a sweet little boy in our ward while his mom went grocery shopping. As I was rocking him I remembered a really funny story about Jason and babysitting. During our first year of marriage we were still in college at SUU in Cedar City, UT. One of our neighbors had a night class twice a week and asked if we would watch her six month old son, Liam during her classes. We said yes - and it was great birth control for about three years after that! Just kidding, he was actually a very sweet boy. So, one night while we were watching Liam he had a diaper blow out. You know the kind . . . the-up-the-back-and-down-the-legs kind of blow out. I started changing his diaper (Jason had nonchalantly left the room when the messy diaper was discovered) and realized it was going to be a two person job. I have younger siblings and I have changed a million diapers, but Jason . . . he was on the younger end of his family so he didn't know a thing about diaper changes. I told Jason I needed to clean off Liam's back and asked if Jason would help lift his bottom off the floor. He looked at me confused then proceeded to grab Liam by the feet and hold him upside down for me to clean him up. Poor kid! I don't know who I felt worse for . . . Liam for being held like that or Jason because I burst into hysterical laughter! So, there we were in the middle of the living room trying to clean up this little guy while Jason kept shooting glances at the diaper with a horrified expression - like it was the most terrifying object he had ever seen. Poor Liam. Who knew a diaper change would be so intense?!

The Sunflower

I just have to share a book with all of you. Shortly after Jason and I came home from Salt Lake City in October, one of my friends brought over the book The Sunflower by Richard Paul Evans. I feel so bad it has taken me so long to read it - but I thought it was a perfect opportunity to spend the weekend reading since Jason was gone for a few days visiting his family. Saturday afternoon I ran all of my errands and then sat down to read and never put the book down. It was such a simple but amazing novel about what is truly important in life. I don't want to give away the book for those of you who may want to read it - but the story takes place at an orphanage in Peru where an American doctor has taken in some of the street children who have been abandoned or sold by their parents. It's such a beautifully written true story which has once again opened my eyes to the truly important things in life. I know I talk about this all of the time, but reading this book made me ashamed of the things that I continue to preoccupy my worries and time with. There is a quote in the book from the Dr's journal which says, "American culture is a curious thing. We fret over a sport's star's twisted ankle or the ill-fated marriage of celebrities, yet lose no sleep over a hundred million children living in the streets."



Just think about it for a second - I did. What are you preoccupied with right now? What are your biggest worries? What are you so consumed with? I'll go out on a limb and tell you what I worry and think about the most . . . MYSELF. Isn't it true? Maybe you don't do that, maybe it's just me . . . but how often do we find ourselves thinking and consumed with what we don't have and how much we want it. Are we really justified in thinking we NEED a new car, a boat, or brand name clothes when there are literally millions of children living and starving on the streets? For me this defines necessity. I am embarrassed that I am so consumed with myself, my grief and the materialistic aspects of life that I consider to be important. If I put half of that energy into serving others or helping those that are really in need . . . I may be able to make a difference for someone else.

Too often I find myself heartbroken, preoccupied or sad with some of the cards life has dealt to our little family. There was another quote in the book that really hit home for me. "We carry around in our heads these pictures of what our lives are supposed to look like, painted by the brush of our intentions. It's the great, deep secret of humanity that in the end none of our lives look the way we thought they would. As much as we wish to believe otherwise, most of life is a reaction to circumstance."

I know this post is kinda a rant . . . I didn't intend for it to be that way. Sorry. I actually just wanted it to be a book review. I should be actively trying to make another person's life better - not so utterly consumed with the things I want.

Cautious Optimisim

It would figure that after I type up that huge post about our genetic situation I get a call from the geneticist on Friday. Yep - I finally talked to her and it was a very encouraging conversation. Since we last spoke she learned about the CHG Array that was performed on Gavin's blood. This is a fairly new and very detailed test on DNA. It can pick up MOST additions, deletions and rearrangements in the DNA strand. So, how did the test come back? NEGATIVE. It was completely negative for any additions, deletions and rearrangements. This is great news. If he did have an Otopalatodigital syndrome, it SHOULD have picked it up. But, as we have been told before nothing in genetics is a 100% guaranteed. Because of the test results the geneticist here decided to talk to the geneticists at PCMC to get their input.

She spoke with Dr. Rope at PCMC who is the doctor that worked with Gavin while he was alive. Dr. Opitz was the geneticist at the autopsy. Well, because of the negative CHG array test they are back to thinking Gavin might possibly have had CHARGE. However, the CHARGE test came back negative as well. About 40% of the children diagnosed with CHARGE have no genetic showings; meaning that their CHARGE tests came back negative as well. They just receive a clinical diagnosis and assume that's what their syndrome is. They are really thinking this could be the case with Gavin since they still can't find anything genetically wrong through these tests. We know that he had some type of syndrome, but the mutation must have been so small and isolated that it cannot be located. But - CHARGE is a syndrome de novo, meaning that we don't have an increased chance of having another child with CHARGE - if that's what this is.

I asked the geneticist if they ever encounter this . . . children without a confirmed diagnosis. She said, "All of the time." I then asked her what they tell parents to do about future children if they can't ever identify the genetic mutation. She told me that almost all of the time these parents go on to have children that are 100% healthy.

The geneticist here is still working so diligently. She told me to call back at the end of this week. She is still conversing with the PCMC geneticists, but we should have a better idea of their thoughts towards the end of the week. She told me that even if we get pregnant and have a healthy child they will still continue to work on Gavin's case until we say stop.

We are VERY encouraged to receive this news . . . but we are once again being cautiously optimistic. That seems to be our motto for this phase of our lives. We are so grateful for all of the prayers and thoughts on our behalf. We know the Lord truly knows our hearts and our righteous desire to be parents. How grateful I am to have the knowledge that I can turn to the Lord and receive direct inspiration. Having another child without a diagnosis for Gavin will be a huge leap of faith . . . but I feel that through this process we are getting closer to being parents again. YEAH!

Tennis Anyone?

Many of you know that I love tennis. I used to play in high school and we try to get out every now and then to get in a good match. Well, tonight my mom and I went to the Tennis Channel Tournament here in Vegas. We were able to watch the mens double match and let me just say . . . some of the boys were from Greece. Enough said! But really, it was fun to go out to the Darling Tennis Stadium and spend some time with my mom. Nothing like watching a great tennis match to get you motivated to get out and play again. Maybe I should add that to my list of "to-dos" . . . play more tennis!

How Much Ice Cream Does It Cost To Buy a New TV?

Last night Jason and I were at our friends' house and we decided to get Port of Subs for dinner. Well, we sent the boys to get dinner and what did they come home with after 45 minutes? . . . An arm-load of ice cream. Literally. Jason walked in with two pints of Baskin and Robbins Cookies and Cream AND Mint Chocolate Chip ice cream. Wasn't quite what we were expecting but he didn't get any arguments from me! Well, a little bit into the evening it came out that it had taken the boys so long to pick up dinner because they had gone to Best Buy first to look at new TVs. Hmmmmmm . . . boys are gone for almost an hour . . . they come home with A LOT of ice cream . . . AND they went TV shopping? Anyone else think there was alterior motives in the ice cream treat?

These Are The Days of Our (Genetic) Lives

I have had so many people asking questions about the genetic testing and the results we are finding. And I thought I should answer some of them. :)



Q: Have we gotten any results back yet?

Well, as of right now, we still don't have any results. In fact, we still don't have a lab to do our tests yet. I am THE WORLD'S most impatient person and I called the geneticist last week to see if she had any news. As of last week, she had JUST received Gavin's medical records from the hosptials and was going through them with "a fine tooth comb." Since Gavin had oodles of medical records from his three months in the NICU - they had to copy and mail the records and well, that just took a few extra days. Our doctor is SO nice though, and I just can't complain about her being ultra-specific while reading his records.



Q: So, did Gavin have a syndrome, or not?

That's a freaking great question. Yes. Gavin had some type of syndrome. It's just that we don't know what syndrome he had. He did not have an IDENTIFIABLE syndrome, but he did have some anomalie or mutation within his genes. According to the geneticist at PCMC, "Everything is genetic. Good or bad."



Q: So what are they looking for?

The problem with Gavin was that he didn't fit the criteria for any specific syndrome. However, he did have many characteristics in a class of syndromes called Otopalatodigital and this is what we are testing for right now. I know it's bad to do your own research, but as I read about it online I found that he really does fit a lot of the criteria. Within this cluster of syndromes there are four or five different specific syndromes. Some of them have only been diagnosed a few times . . . EVER, but they know exactly what tests they need to run to look for this family of syndromes. The sad thing is that if this is what Gavin had . . . there is a chance that it's hereditary and our future children will have it too.



Q: How do you get an Otopalatodigital syndrome?

OK - I'll try to explain this the best way I can . . .



1) It could be a syndrome de novo which means that for some random reason that specific gene in Gavin mutated during his development. The chance of having a child like this is the same for every mother. Nothing could have been done to prevent or predict this. I guess we could consider this a freak accident (but I would never call Gavin that - he was this way for a purpose)



2) It could be an X linked problem. I'll try to be as brief as I can, so here it goes . . . Every woman has a XX sex chromosome and every man has a XY sex chromosome. When a baby boy is conceived the mother passes on an X and the father passes on a Y. Well, if I have a mutated X gene and pass that on to my son . . . he will have that mutation as well. So, why doesn't the mutation present in the mother? Since the mother has 2 Xs the one that is normal can compensate for the X that is mutated. Therefore, as a woman you can be a carrier but not have the syndrome. If this is the case and I have this specific mutation to cause an Otopalatodigital syndrome all of my children will have it, but it will always be lethal in my boys because their Y can't compensate for the X that is mutated. Yeah, I know I just babbled . . .



Q: Do you think it will happen again?

My gut used to tell me that this was just Gavin and that this wouldn't happen again. But with all of these new possibilities and syndromes we are looking into, I am just not so sure anymore. We don't know that he had an Otopalatodigital syndrome . . . but so many issues these children deal with sound a lot like Gavin. And there isn't a little boy with this syndrome that has lived past a year old. This makes it a very real and critical decision. I just can't say I feel one way or another about the chances yet. I think I just need a little more information first.



Q: What happens if the tests come back negative for Otopalatodigital? What do you do then?

Another great question . . . and we ask each other that all of the time. Yes, we think we may be headed down the correct path with this "lead", but what do we do if this syndrome isn't the diagnosis either? I guess that means we have to try something else and start this process all over again. The thing about genetics is that you can dig and dig forever and still not find an answer. It is a lengthy process, but it's a necessary process as well. We are just praying that we find some type of answer.



So, there you go. I know there really isn't any answers to give yet but at least we have a direction. Maybe it will turn out, maybe it won't. The important thing is that through this process we depend on each other, our families, friends and the Lord. I am sure that someday we will know - it just may take awhile. Ugh! More patience!

My Vacation to Holland

I actually heard this "parable" a few years ago in college from one of my friends who was teaching a church lesson. Recently, another friend emailed this to me. It reminds me that there is joy in everything. Even when life doesn't turn out the way we thought it would - there are beautiful things we need to notice and appreciate. I would feel ungrateful if I ignored the amazing three months Jason, Gavin and I spent together here on earth. I can't say that I only imagined having my son for three months, or even that I would have such a high needs child . . . but there was so much joy and beauty. Just a different type of joy and beauty than I planned for. Maybe we all feel that way from time to time.

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.



After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.




The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.





It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.





But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."





And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Happy Birthday Trisha!

Today is my sister-in-law's birthday! I know she'll hate me for bringing it up . . . but, Happy Birthday Trish! I am so happy I have great sisters in Jason's family. I feel so lucky to have married into a family with such great siblings. We have had a lot of fun times. Here is a picture from the college days in Cedar City hiking the Narrows in Zions National Park.

Oh - and Trish . . . they are looking for someone to work PAPT TIME at Lupita's in Cedar City! HAHAHAHAHAHAHAHAHAHA

Gavin's Headstone is FINALLY Finished!

Gavy's headstone is finally finished. I am really happy with the way it turned out. The picture on the front looks kinda red in this picture, but it's actually a sepia color. This was the last physical thing left to do for Gavin and it's been kinda hard knowing that there isn't much else we can physically do for him. However, I know that the most important thing we can do for him now is to live our lives so that we can be an eternal family. Sometimes when I sit down and really think about this situation - I realize that I am truly a blessed mother. It is hard to have empty arms, but I think I may be starting to find joy. I find joy in knowing that I have a son who is so valiant that he didn't need to stay here and I find joy in knowing that I will someday be with my son in a perfect state. Someday this will all make sense and we will understand the plan . . . but for know I will trust that God knows the bigger picture for my family.

On Saturday Gavin had a few friends from the ward take him some fresh flowers and a pink clay flower. It is so nice to know that he is still remembered. Children are so "in tune" and are so accepting and kind. I am so happy Gavin has such wonderful friends.

Happy Birthday Jason!

Happy Golden Birthday Jason! Yep, I'm gonna give his age away . . . today Jason is 28. Look how cute he is in these pictures! He looks just like Gavin, huh?! I know I've said it a million times, but I am so lucky to have such a great guy. He is a wonderful husband and an amazing father. A year or so ago I was going though some of my old high school boxes and I found a list I made when I was about 13 years old of the qualities I wanted my future husband to have. It was so funny to find the list and read the things I wanted my husband to be like. He was EVERYTHING I wrote down - even the silly little things. He's everything I could ask for and more. I hope you know I love you Jason! Have a wonderful day!

What Makes You a Mother is The Feeling in Your Heart

A friend of mine emailed this poem to me and I thought I should share it. It's so sweet and it brings the "big picture" into view. It's been difficult to be a mom without a baby here to hold, but this is such wonderful perspective.

I thought of you & closed my eyes & prayed to God today.

I asked what makes a Mother & I know I heard Him say,

A mother has a baby, this we know is true.

But God can you be a mother when your baby's not with you?

"Yes you can", he replied with confidence in His voice.

"I give many women babies when they leave is not their choice.

Some I send for a lifetime & others for a day.

Some I send to feel your womb but there's no need to stay."

I just don't understand this, God, I want my baby here.

He took a breath & cleared his throat & I saw a tear.

"I wish I could show you what your child is doing today.

If you could see your child smile with other children & say,

We go to earth and learn our lessons of love and life and fear.

My Mommy loved me so much I got to come straight here.

I feel so lucky to have a Mom who has so much love for me.

I learned my lesson very quickly, my Mommy set me free.

I miss my Mommy oh so much, but I visit her each day.

When she goes to sleep, on her pillow is where I lay.

I stroke her hair and kiss her cheek and whisper in her ear,

I am your baby & I am here."

So you see my dear, sweet ones your children are OK.

Your babies are here in my home and this is where they'll stay.

They'll wait for you with me, until your lessons through.

And on that day that you come home, they'll be at the gates for you.

So now you see what makes a Mother is the feeling in your heart.

It's that love you had so much of right from the very start.

32nd Annual KSL Radiothon for Primary Children's Medical Center

http://www.ksl.com/?nid=352&sid=849464

Thanks to my cousin in Salt Lake City . . . I found out about the 32nd Annual KSL Radiothon taking place February 25th and 26th in Salt Lake City, UT. The site above explains more about the broadcast, but it basically is a fundraiser by a radio station to help PCMC raise money. To date, they have raised more than 5.5 million dollars and that may sound like a lot, but I know there is a need for much more help. There are so many babies and children who are in need of intensive medical care. I know the fundraiser is over today . . . but donations are always accepted. Here is the link on their websitefor donations . . . http://intermountainhealthcare.org/xp/public/primary/giving/donate/.

I don't have to tell you how much PCMC means to me. Tears flood my eyes just thinking about the facility and staff who helped us and Gavin. PCMC was the hospital who offered to take Gavin after we had been turned away by three other hospitals because it would "cost too much" to have him occupy a bed for an undefined amount of time. We had specialist after specialist work with Gavin and they pushed so hard to find an answer for us. They never gave up on Gavin, and other children deserve the same opportunity.

One of the things that is so wonderful about PCMC is that it is a non-profit hospital. They are not out to make money . . . they are there for the children and are able to do this because of donations. Our bills from PCMC have been substatially lower than our other hospital bills and it is only because of the donations made to PCMC through events like the Festival of Trees and the KSL Radiothon. Children like Gavin are multi-million dollar babies (yes, I really mean multi-million) and when you are in the middle of a situation like that, the last thing you are thinking about is money. But the worry of money does become an issue when the situation balances out and you receive the insurance statements and hospital bills. We are in a very fortunate situation to have had Gavin at PCMC. I just wanted to give a little plug for PCMC today . . . I know I will contribute as much as I can for many more years to come. I owe PCMC and Valley Hospital here in Las Vegas for giving me three months with my son. Without these two hospitals and the amazing staff and friends we made there, we may not have had Gavin as long as we did.

Here are a few pictures from Gavin's flight to PCMC. The PCMC flight crew came to get him in Las Vegas and flew him on a life flight jet. We always said that Gavin knew how to travel in style! HAHAHAHAHAHA

Look how big Gavin looks in the transport bed!

The PCMC flight staff was so wonderful.

HORRAY! Saturday Night Live!

As many of you know . . . I love Saturday Night Live. Anything with Will Ferrell, Chris Farley, Cheri Oterri, Amy Poehler or Molly Shannon will make me laugh. Needless to say I was so happy to have a new episode to watch this weekend. I think I watched and re-watched the "Annuale" commercial about a million times and I laughed hysterically at Amy Poehler playing Amber, the one legged woman. Hahahahahahaha! If you haven't seen this episode hosted by Tina Fey, it is a must! A good laugh is never a bad thing!

The Storm

This past week has been an emotionally difficult week for me. Jason and I seem to take turns with this whole grieving process. Sometimes I struggle and other times he is the one who struggles. A few weeks ago I was driving home from work and I thought I was doing pretty well - I felt more "okay" (and that's a relative term) than I had since Gavin passed away. I thought maybe, just maybe I was accepting what had happened. And then, out of nowhere the grief set in again. A few nights ago I was having a really difficult time understanding why God would do this to me. It just hurts so bad. I love Gavin more than I can explain - and if God loves me as much as I love Gavin . . . He would make it better. I would do ANYTHING so that Gavin wouldn't have to suffer - why is God letting me suffer so much? Why does He let me cry and ache and mourn when He could change it ALL? He could have healed Gavin while he was alive and now, He could raise my son from the dead - I have read about it in the scriptures and I know it can happen. And if He won't heal my son or raise my son from the dead - He could take away my pain. He could make it so it doesn't hurt so so much. I know this thinking pattern is not very reasonable but it was my attempt to understand. I found as I started thinking this way I became very angry with God. In this situation with Gavin there is no one to blame for his death - there is no one to hold accountable. He didn't die because of neglect or abuse or even an accident. So, logically (or illogically) this past week I have placed the blame on God because I KNOW He could have changed things from the beginning or He could take away my pain I feel now that Gavin is gone. I don't like being angry with God but, I also know this is a very human response to a situation that was SO out of my control. I decided that it's okay to be angry for a little bit, but it is how I deal with my anger that will make or break me. Will this break me? Will I just give up and be angry for years and years? Will I forsake everything I know and believe because I feel forsaken in these moments? Nope - not a chance. I can be angry and have all of these "human" responses and then I need to pick myself back up and move forward with faith and hope. Faith that my Savior understands and that God has a bigger purpose for my little family than what I can comprehend at this point in my life. I have to have hope that we will be happy again - that I will be a mom again and that I will be with my sweet baby boy again.

Jason and I have searched out much information on coping and dealing with the death of a child, specifically an infant. I have found much comfort in a book titled "Joy Cometh in the Morning." Last night I came home from the gym and sat down to read. While I was at the gym I had contemplated my week and the anger and emptiness that I have felt in the thought that God was not comforting me or forgetting me. As I opened the book, the first paragraph I read spoke volumes to me. In this paragraph the author quotes a 1998 Ensign article called "Understanding Our True Identity" it says: "Sometimes the Savior calms the storms. Sometimes He lets the storm rage and calms you." I realized that I must have faith to accept what I cannot change and have hope that the Savior will calm me while my storm rages. While my winds and waves of sadness and anger blow I must stay "in the boat" with the Savior. I need to have hope that through this process I will become a better person - and more empathetic person who truly understands the meaning of service and compassion.

I have thought a lot about "but-if-not" faith discussed by Elder Dennis Simmons and the way we should approach our trials and storms. Here is my "but-if-not" faith scenario: "My God will give me a healthy baby boy, but if not . . . My God will make my son whole and heal him from his infirmities, but if not . . . He will help my son avoid death, but if not . . . He will take away my emptiness and pain, but if not . . . I will still trust in the Lord." I have faith and hope that one day I will not hurt this bad. I may always have a missing piece of my heart, but I know that through the faith and hope I put in the Savior I can have my burden lifted. Perhaps I will always feel intense pain when I think about the loss of my Gavin, but I know the Savior can calm me in my own storm.

Gavin's Headstone

Last weekend my sister Rebecca came to Vegas for a visit. We took her out to see Gavin's headstone and then I realized I never posted about when they set the stone. So . . . here it is. We are still waiting for the pictures to be placed on the front and back of the stone. The front will have a picture of his sweet little face and the back will have the picture of Gavin's foot with our wedding rings on his big toe. The front of the marker is kinda hidden in this pictures but the bottom says, "Too small to pick up a stone; he moved a mountain grew weary and went home." The back of his stone is a portion of a poem I wrote for him. I think it turned out well and it's a wonderful monument to remember the life of our brave, sweet fun boy.

This is the picture that will be placed on the back of the stone after the poem.

Happy Belated Valentine's Day!

Well, life just sometimes gets too busy and we don't have time for things like Valentine's Day! :) Actually, Jason had school on Thursday night so we decided to go to Flemming's on Friday night. We had a really nice night out. It was fun to relax, eat a great steak dinner and be with a super fun guy. Oh . . . and the picture below is REALLY blurry - but I couldn't stop laughing when I looked at it. I just had to post it!

A Lesson in Genetics

Most of you know that Jason and I have been set up with a geneticist and a perinatologist who are working on figuring out if Gavin's "syndrome" was passed from one of us, or if it was just . . . Gavin. Finding out this information will help us have a better picture of what to expect in the future with children or if it's not a good idea to have any more children. Needless to say, we have been on pins and needles waiting to meet with the genetic counselor. We were finally able to get an appointment this past Wednesday and our meeting went well. It's not that the news is great . . . it's just more information. As we met with the genetic counselor we were informed that Gavin, in reality, had some type of syndrome because even a "lack of development" is caused from something genetic. In short - everything is genetic. A small mutation in a gene could have caused his brain to not develop correctly, etc. The difficult part is that they weren't able to find an identifiable syndrome or mutation with the tests they already did on Gavin. So, here is our new lead . . . the autopsy said that he had certain characteristics of two different clusters of syndromes, but that his tests were negative for the already known syndromes in those two areas. However, they know which genes mutate to create these syndromes - and we can test for that. Just to be brief . . . the two mutations we are looking at are 1) the Filamin A gene and 2) an X linked gene. The scenario is better if we find it's a Filamin A gene mutation. If they can identify a mutation in the Filamin A gene it means that this was just a fluke. For whatever reason, this gene mutated and created "Gavin's syndrome." Every single person has the exact same chance of having this happen to their child . . . and my risk doesn't even increase with my future children. This is the information that seems most promising - but they told us that they are overly cautious in genetics. If they only knew I LOVE THEM FOR BEING OVERLY CAUTIOUS! They have tests available to look at the two different types of mutations we are looking into however, the trick is finding a lab that will be able to do the tests. So, as of now the geneticist is gathering some more information about which lab will perform the tests and she is obtaining some of Gavin's blood from PCMC. We are just waiting to hear from her to see what the labs say. We are keeping our fingers crossed that we can find a lab willing to do these tests for us. There is nothing concrete about either of these scenarios, but at least it's a lead! We will take that for now! Patience is so difficult to learn, don't you think?

My ABC's

I found this ABC List on a few blogs . . . and I thought it would be fun to do ABC's for Gavin! I feel like I am very lucky to have been blessed with Gavin for three months, and I just want to share a little about his personality. So, here we go!

Oh - and sorry about the spacing on this entry . . . I don't know what I did to mess it up so badly!

A is for AFFECTIONATE

One day Gavin was holding onto my finger (like he ALWAYS did) he then reached up with his other hand and placed it ontop of mine. He knew how to show love.

B is for BUG

We always call Gavin "Our Little Bug." Before his trach he would lay on his tummy with a diaper that was too big for him and he just looked like a little bug in his bed - and the name stuck.

C is for CROSSED EYES

My cute Gavin couldn't keep both eyes in one place at the same time. Nothin' like two big, beautiful blue crossed eyes staring at you!

D is for DADDY

Gavin had a perfect daddy who loves him more than anything.

E is for EASY TO LOVE

So many people became attached to Gavin very quickly. He was so sweet and easy to love.

F is for FUNNY

We still laugh at some of the silly pictures we have of Gavin. Whether it was a gross diaper change, wandering eyes or the hiccups, Gavin made us laugh!

G is for G-TUBE

Gavin's method of eating was through a tube stitched into his tummy. Not ideal, but not as messy!

H is for HUMILITY ( AND HAIRCUT)

He taught us that we have to be humble so we can be prepared to accept the Lord's will. And Gavin was the only kid I know who was born NEEDING a haircut!

I is for INNOCENCE

Gavin's sweet, short little life showed the innocence and vulnerability of human life. In way way, the situation somewhat stole innocence from Jason and myself - life will just never have the same "carefree-ness" like it used to.

J is for JOY

Having Gavin taught our families what real joy is. Big homes, cars, hobbies and work is not what brings us real joy - our families and the gospel are what brings us true joy.

K is for KISSES

You couldn't help but cover Gavin's cute forehead with kisses! It was the perfect place to plant a big fat kiss!

L is for LOVES & LAUGHS

Without a doubt Gavin taught me true, unconditional love and he taught me to laugh. I never wanted to cry around him. I wanted him to know he made me happy - so we laughed when we were with him and loved him more than anything.

M is for MESSY

I knew a baby would be messy . . . but cleaning an oozing surgical wound wasn't my idea of cleaning up my messy son! And yes, Gavin could fill a diaper with the best of 'em too.

N is for NAUGHTY

Yes, Gavin could be naughty. Our cute nurses would tell us if Gavin had "misbehaved" that day aka if he had a breathing spell.

O is for OPERATIONS

Gavin had about eight surgeries/procedures and was such a trooper through it all!

P is for PEACEFUL & PATIENT

Even with all of the physical discomfort Gavin had to endure, he was so peaceful. I know I have said this before, but standing next to his bed I KNEW it would be okay, somehow. And patience . . . well, that is a virtue our families never seem to learn well. And we are STILL learning patience.

Q is for QUIET

With Gavin being on a ventilator and then a trach, we only heard a few sounds from him. The silence used to haunt me - then I learned how to embraced it. It was calm, peaceful and quiet when we were with Gavin. (I guess if you don't count the beeps and alarms from the machines in the NICU.)

R is for REVERENCE & RESPECT

The day Gavin was blessed and passed away there was a feeling of great reverence and respect for our little boy. All of the nurses and doctors spoke to us with hushed voices and I knew that Gavin's sweet spirit brought reverence into the room.

S is for STRONG

Gavin was a fighter. He fought as long as his sweet little body could hold out. He taught me how to be strong and how to endure.

T is for TRUSTING

I like to think the Lord trusted me and Jason to be parents of Gavin. I am still to this day, grateful that I am Gavin's mom. I knew that if he had to be sent to this earth with so many complications, I was glad he was sent to our family.

U is for UNDERSTANDING

Gavin understood my selfishness and desire to be a mom. He stayed with us until we understood his plan. He knew that I needed to have him for a little bit.

V is for VALIANT

Gavin is a valiant son - one who will always be the light of my life.

W is for WILD AND CRAZY HAIR

From the day Gavin was born he had an outrageous amount of blonde hair that never seemed to be tamed. Jason loved to mess it up and give him crazy hairstyles. Even doctors and nurses couldn't help but touch his beautiful head of hair.

X is for XRAY

I know this is kinda a lame word for X - but I just got the insurance statement for the Radiology Lab yesterday in the mail. Gavin had over 100 xrays. So, that speaks for itself . . .

Y is for YELLOW

Yeah, this is a silly word but did you see the color of his skin the last month? Gavin's jaundice was caused by the medications he had to take - but he was as yellow/orange as a pumpkin! (I say that with all the love in the world!)

Z is for ZZZZZZZZZZZZZ

With a virtually absent thyroid gland, Gavin slept A LOT! But he was beautiful when he slet - just like a little angel.

So, maybe this is a little cheesy, but I thought it would be a good way to share some of Gavin's personality quirks.

. . . And He Did It Well

The other day I received an email from Jason. All it said was, "Did I do everything I could for Gavin?" I wanted to call him to tell him he was the best father imaginable for Gavin. I know Jason did eveything a father could do - but I also knew that I have told Jason that a million times. In a desperate attempt to find comforting words for him, I forwarded his email to my mother with the hope that she would give me some advice with her infinte wisdom. This is what she said:
"You tell him that he was the finest example of a father imaginable. He gave his son life -- he loved him and then he turned him over to the Lord. Jason was not selfish. He was willing to learn from the Lord and his son and honor Gavin's wishes and needs. He had to do the most difficult thing I can imagine a father ever having to do. And that is to do the Lord's will -- even when he knows it will break his wife's heart and his heart as well. Jason had to do things that honorable, experienced crusty men in their 90's have not had to do. And he did it well."

The sentence that caught my eye was the last line. "And he did it well." So many times we are given trials in our lives. For some it may be as obvious as the death of a loved one and for some their trial may not be visible to the world around them. We all have trials - we all have our own crosses to bear in life. We have been told to endure. Whether it is enduring the deepest grief or the simple challenges of everyday life we are told to not only endure, but to endure it well.

I cannot say I have dealt with this situation perfectly. I have had my fair share of self-pity and "poor me" moments (um . . . my last blog entry) but I am TRYING to do this well. I don't only want to endure this life . . . I want to live it. Someday when I meet up with my little Gavin again, I want him to know he has a happy mother and that he was the reason for so much of my joy.

Life has a way of giving us the impossible. It may not be now, but someday we will all have to do the impossible. None of us will escape this world without trials. Some may have already happened, some are in the future. We will all know what grief and fear feels like - and in the moments when we see the impossible infront of us, we can do what we never thought we could do. This isn't easy but I need to do this well.




PS - this was our version of feeding Gavin with his Gtube. The milk is in the syringe taped to Jason's chest and it dripped into Gavin's tummy. What a good daddy!

The Truth

Am I faithless because I have a bad day? I try to convince myself that it's normal for a mom in my situation to feel this way, but I always end up feeling guilty for having a sad day. Like I don't believe enough or that people will judge me for not having enough faith. Today a friend of mine sent me a link to a blog of a mother in a similar situation. This mom is real and brutally honest and she said it perfectly, "I’ve heard it said of other mamas who have lost babies: Every conversation steers itself towards The Baby. It’s getting … tiresome. She really needs to move on. It’s not healthy." Perhaps you may be tired of hearing of my thoughts and feelings about our situation. But, this mother inspired me and I have decided I have to be real in this post . . . I just have to get it out. I try to always keep a positive attitude - I try to focus on hope and peace. I try to find these things because I KNOW there is peace and hope in our situation. We have every reason to be hopeful; however, I can't resist or supress my sadness at times. Hope doesn't fill a mother's aching arms. I feel like my work as a mother is unfinished. Jason told me the other night that he feels cheated. All I want to do is hold my Baby Gavin in my arms, kiss him and tell him, "I love you, I love you, I love you and I’m so proud to be your mama. I miss you so much."


After months of keeping his bedroom door closed, we moved Gavin's things from his room. What mother has to do this? My mom came over to help me pack his belongings while Jason and my dad moved the furniture. What grandparent has to do this? What father has to pack up a crib that his son never slept in? It was only appropriate that my mother was there to go through Gavin's things with me. She has been through every single day with me - she knows everything. Jason's brother Brent built a beautiful chest for Gavin's few belongings and as we packed the chest I felt sadness, despair, aniexty, fear, hoplessness . . . but I also felt a renewed sense of joy. Such conflicting emotions are confusing.

Jason and I often discuss this question, "Which day was more difficult . . . the day he was born, or the day he died?" Many of you may think this is an awful question to ask, but having been through such an intense, heart wrenching three months with him here, and now a lonely and desperate three months without him here . . . we can validate our thoughts on this question. Without a doubt we both say that the day he was born was more difficult. The day he was born I felt sorrow for myself, Jason and especially Gavin. Would he live? How different would be be? Would his life be painful? Would he have a life? The day Gavin left us I also felt tremendous sorrow for myself and Jason; however, I felt the most intense amount of joy for Gavin. I knew he would be happy. I knew he would be able to function. I knew there was work for him to do there that he would have never been able to do here. I didn't have one ounce of sorrow for Gavin. I am proud to be Gavin's mother - I am a lucky mother. And I tell Gavin that all of the time. Now, despite the moments of the heaviest sadness I’ve ever felt, there is love - more love than I’ve ever felt. Love for Gavin - love for my family - love for people I come in contact with - and more than ever, a love for my Savior.

I find peace in the knowledge of a merciful God. There are times I find myself angry with God, asking why He would take away my son. And then I remember His mercy. He gave me three months to be with my son and to KNOW my son, who in all reality never should have lived that long. In the midst of the anger, sadness and pain that accompanies every day, I choose to find peace. I choose to find hope and I choose to have faith. So there it is . . . the truth of my feelings. Some days are good and some days aren't. The emotions are mixed, the pain is real and the joy is real.