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.

Happy Memories

Tonight I went to decorate Gavin's grave with Valentine's Day decorations. As I was sitting there I was reflecting on some of the happiest moments of my life. Instantly this picture came to mind. I don't think I ever blogged about the circumstances around this picture . . . but every time I look at it I laugh. This picture was taken at PCMC in October during one of our physical therapy sessions with Gavin. Poor Gavin had just had too much fun for the afternoon and fell right to sleep in his Boppy pillow on the floor during physical therapy! We tried and tried to wake him back up, but he seemed to be so comfortable, so we just let him sleep on the floor. I laid there for about an hour with him and I talked and sang to him. Yeah, I know he wasn't able to hear - but I guess it's a mother's instinct to talk to her son. This was one of the happiest days of my life. I treasure the memory of laying on a hospital floor (gross - I know) and singing to my sleeping son. It's one of the moments I felt like a "normal" mom and I cherish these happy memories.

Aren't these pictures great?! NO NICU CRIB!!!!! :)

What a cute little sleeping bug!

Momma's Boys

Ok - so my awesome sister-in-law Allison taught me how to do digital scrapbooking with PhotoShop. I am nowhere near Allison's level . . . but I thought I'd "display" one of my first pages. Of course it's of my boys. This is the picture that reminds me I am a very lucky wife and mother. . . I have the two best boys ever.

Happy Birthday Mabel

This week my niece Mabel celebrated her birthday. I just wanted to tell everyone how much I love her. She is a wonderful niece and I feel so lucky to be her aunt. I love it when we get to play "princess" and it was so fun to go to DisneyLand a few years ago with her and her fun family. These pictures are from that trip . . . she totally made my day with how excited she was for the Princess Dinner. However, she was not thrilled when Uncle Jason told her that he was going to the Princess Dinner with her. She always tells me, "Uncle Jason is so silly! He thinks he's a girl!" We love you Mabel! Happy Birthday cutie!

Love,

Uncle Jason and Aunt Lindsay