Wednesday, July 15, 2015

1 Year

Dear Annie,

Well I can't believe that it has been a year since you returned to Heaven. How grateful I am for the lessons you taught me in your short time down here on earth. Yesterday I could feel you with me, comforting me. It made me happy to know that you were there watching over me.

Though your dad and I only had you for such a short time, I'm so grateful to know that you are going to be in the Celestial Kingdom, and be perfected like our brother, Jesus Christ. It's up to your dad and I now, to make it back to you. I look at families who have siblings and children who have gone wayward, and how hard that would be knowing that they may not be living with them forever. We were sent down here through Heavenly Father's plan, to have our own free agency. I hope that through out the rest of my life, I can make the best decisions so I can return to you, our family, and our Father in Heaven.

Last night, your dad and I went out to dinner and went up to East Lawn and sat there by your headstone for about 30 minutes. We talked about you, and the happiness you have brought into our lives. I am so grateful that your dad and I have been able to become closer to one another through out this journey. I love your dad so very much, and he is one amazing man, and I probably don't tell him that enough when I should.

Annie, thank you for the blessing you were and have been in our lives! We are so grateful for you, and the beautiful/amazing daughter you are. Though I talk about the  Gospel a lot, I am just so very grateful for it, and there is no denying it. I'm so grateful that I can share this blog and my testimony not just with you, but with the world! So many people love you, and are so caring and loving towards your dad and I. I have been wanting to go back and read the blogpost I wrote about the day you became an angel, but I am scared that I will be a wreck. I know with out a doubt, that the spirit is always with me when I write this blog and I am so grateful for that. I will read it soon, and know that you are with me. I love and miss you so very much my little Annie-girl!

Love,

Mom.

Baby's Breath for our sweet baby girl! And of course, a yellow ribbon:)

Your auntie Emily and uncle Jackson brought flowers up to you yesterday! They were so pretty! 


Monday, July 13, 2015

Updates for days! (From your Dad)

Apologies for the delay!  The majority of this was written the day after Father's Day but life can get pretty busy.  Thank you for reading.  

Dear Annie,

Since yesterday was Father's Day, I thought it would be most appropriate to share this post.  It has been awhile since I have had the opportunity to write on the blog to address my sweet little girl.  Annie, a lot has happened since the last time we wrote on the blog.  Of the many things that have happened since March, there was one in particular that we wanted to share with you.

At the beginning this year (2015), we were asked by Tara (Genetic Counselor) to come to meet with her and Dr Swoboda at Primary Children's Hospital on February 17.  That date has quite a bit of meaning for your mom and I.  That was the day we were sealed in the Temple for Time and All Eternity, so we knew something special had to happen that day.  From the day we received the call about the appointment and until the day of the appointment came your mom and I thought of a million possibilities of what this appointment would be about:

  • Are they going to tell us that they were able to confirm one of the many disorders they thought it could have been?
  • Will they tell us that they found nothing at all and your illness Annie, still remains a mystery?
  • Are they going to give us more insight about our ability to bare more children? And how that would be done?
  • OR will they strongly suggest we look for other avenues to have children through adoption?
All of the options were cycling through my mind and heart in the weeks, days, hours, minutes leading up to this very important update.  It wasn't until I was in the hospital waiting room that a strong impression came over me that made me think, "no matter what the outcome of this appointment, I have everything I need to be happy.  I have a wonderful wife who loves and cherishes me, despite some of the things I do, AND I have you Annie, a Perfected Princess in Heaven, patiently waiting for the return of her slow parents..."

We began to simplify our prayers.  Rather than asking for "the specific answer" we longed for we solely asked for "an answer."   We felt great peace and comfort knowing that whatever result was given, it was the result that was meant for your mom and me.  With that feeling in my heart, we were called into a room to speak with Tara and Dr Swoboda.  

Tara began to speak, by letting us know that they had received the results back from our Exome Sequencing Test (genetics mapping) that used the blood of you Annie, and the blood of your mom and I to map our genetics to determine how your illness came about.  At your birth, the Dr's believed the genetic mutation (denovo) was complete randomness.  While you were in the hospital, other Dr's believed that the genetic mutation was actually caused by a gene that both your mother and I carry (autosomal recessive).  The purpose of the Exome Sequencing test was to either confirm which of the two scenarios it was.  This answer was the difference between being able to safely have a natural birth, or run the risk of another scary situation again, OR take on a financial burden of genetics invitro and/or adoption.  Independent of the results, your mom and I committed that we would find a way to bring the rest of your younger brothers and sisters to this earth.  With that said, the way in which we will have children will be one of the following: a natural birth, genetic invitro, and/or adoption.  

Annie, through out your short life I found you teaching me principles without to saying a single word.  If it would have been up to the choice of your mother and I, you would still be by my side, but we quickly realized your life on this earth was not our decision to make, but instead, it was our decision to accept.

After a few minutes of small talk, Dr, Swoboda and Tara began to talk about the actual diagnoses, CLIFAHDD.  For those that want to research in more depth here is a link to the literature that was recently published just before our meeting with the geneticists.  In detail, Tara and Dr Swoboda began to explain that the the mutation that took place was NOT what they had thought and they confirmed that the autosomal recessive gene that they had believed to cause your illness was actually ruled completely out.  They confirmed with us that the mutation was a denovo mutation, which meant that your illness was even more rare than we had expected and the cause is till unknown.  What we do know is that your illness is one of fifteen cases ever recorded and your case was one of the most severe; which goes to show how special you really are!  With the mutation being a denovo mutation (completely random) your mom and I had to ask about the future of having future children naturally.  With a smile on Dr. Swoboda's face, she confirmed that your mom and I could have children naturally with a 1% risk of a repeat case, rather than the 25% chance of a repeat.  We had been given the answer that we had always hoped for, though we were willing to accept whatever answer was given.

The geneticist asked if we'd be willing to share your medical story with others and we absolutely agreed.  We also volunteered to be a resource for other families that have children with similar disabilities.  We honestly have learned so much from you Annie Girl and we do not want to hide that from the rest of the world.

Your mom and I are forever grateful for a loving Heavenly Father that knows us perfectly.  We are grateful to Him for the many blessings he gives us every single day.  We continue to thank Him for the opportunity we have to bear children and to bring more of your brothers and sisters to this earth.

I haven't told anyone this...  Sometimes your mom wonders why I enjoy cycling so much.  Well the truth is, I never feel closer to you then when I am out enjoying God's creations and I can feel your presence riding closely beside me.  That is my opportunity to spend some true daddy-daughter time.

I want you to know from the bottom of my heart that I will NEVER forget you.  You will forever have a place in my heart.  You will forever be a light for your siblings to look to when traveling through difficult times.  Your mission, though short, is complete.  You have accomplished the ultimate goal which is to occupy your mansion in heaven.

Until our next ride...  Love you Annie Girl.

-Dad

Friday, March 6, 2015

Balloons sent to Heaven.. Happy First Birthday!

Dear Annie,

Well my sweet girl... Happy first Birthday! Though, I wish you could be here so I could actually celebrate with you, I know that you've been with me in spirit all day. Today was a beautiful and perfect day. We were able to get together with family and go up to your graveside and release one balloon per person for your first birthday! We watched them all float up high in the sky. What amazed us all as we watched the balloons fly high in the sky, was all of the balloons stayed together - just like family stays together. Though, we may be far away, we are so close to you at the same time.

Annie, I just miss you so much. My heart hurts so much some days and I cannot even imagine what I would do if I didn't have the Gospel in my life to help me through the days when I am so down. I am so grateful to know that we can live together forever as a family and that even though we physically weren't able to celebrate your first birthday with you today, one day we will be able to. :) I have a sure testimony of the Atonement. I am so grateful that on the days where I feel so alone, that is when our Savior is with me the most. We are never alone, we always have our brother, Jesus Christ who died for not just all of the sins of the world, but all of our pains and afflictions. He knows us more than we know ourselves. Knowing this and having complete faith in that, I know that He is watching over me, and I know that you are too!

I still remember a year ago as if it was yesterday. I had to have an emergency C-section since your heart rate kept going down. You were born at around 7:30pm, and weighed 3 pounds, 4 ounces. You were just the smallest little thing! Right when you were born, they immediately started resuscitating you, and rushed you to the NICU. I wasn't able to see you until three hours after having you; your dad took pictures of you and I just couldn't wait to meet you! I remember being wheeled into my hospital room after having you, and seeing some of my side of the family and all I could say was, "I have the most beautiful daughter!" I was so happy to have such a beautiful, perfect, little girl as my daughter! When they wheeled me into the NICU where I got to meet you for the first time, I was so happy! I began to cry, knowing that there were going to be complications, but so happy that you were alive and grateful that Heavenly Father sent you to your dad and me!

One thing I don't even think your dad knows is, I remember that night waking up at around 3 a.m., I called the nurse and had her wheel me up to the NICU to see you. I didn't want to be away from you - I wanted to be with you all the time, my heart ached. I remember holding your little foot, and just crying praying to Heavenly Father, asking and pleading with him for everything to be okay. One thing I've learned through this whole entire experience is even though things didn't happened the way they were planned, that is just life. Heavenly Father had a different plan for our family! But I always have to remember: Life is short, compared to forever. And I'm so grateful to know that I will have you forever. But at this moment holding your foot, just having you, I didn't know what to expect, I was just so in love with you and didn't care what trial I had to go through, I just was so happy to have you as my little Annie-girl.

Annie, I just love you so very much. As I sit here in bed with your dad right now, we are missing you oh so very much. No one expects this to happen in their life, especially at such a young age that your dad and I are. We thought we'd be celebrating this first birthday of yours with you digging your face in a birthday cake, giggling, and playing around. But life can be short, but it is ever so sweet. And knowing that you are ours forever, makes today bearable. I love you my dear Annie, so very much. Happy first Birthday my sweetheart! Enjoy the balloons we sent you up to Heaven!

Love,

Mommy






























One year ago today, you were born! I love you sweet girl! <3





Thursday, March 5, 2015

1 Year

Dear Annie,

A year ago today was an ordinary day. I was 33 weeks pregnant and was showing quite a bit. I remember waking up that morning having enough energy to go on a run around the Provo Temple. Looking back now, I feel like Heavenly Father directed me to run around the temple grounds vs. going to the gym and running on the treadmill for a reason. I think he was trying to get me somewhat spiritually ready for what was to come that evening and for the next year.

Through out the day, I remember feeling a little sick and not myself. We were living down in Provo at the time and I was at your Grandma Janie's helping set up a shower. I had called the Doctor's to say that I wasn't feeling well and they said to call later if I kept feeling sick. As the shower was going on, I knew that something wasn't right. I remember going and asking my dad (your Grandpa Steve) if he would give me a blessing. I just needed to feel comfort in knowing that everything would be okay. A while had past after the blessing, and I still was getting the feeling that something was wrong. I called the Doctors yet another time, and they said that I should probably go into labor and delivery. Your dad had just gotten home from work when the nurse told me to go in. And to the hospital we went.

I remember being nervous but not expecting to have you come as soon as you did. I really didn't want to go to the hospital and get an answer that nothing was wrong and I was just having small contractions. Well Annie, that wasn't the case! I was effaced 90% and dilated to a 2. At 33 weeks, that is in no way normal. They realized that I had a lot more amniotic fluid that I should have had and so my body was tricking me to go into labor. The reason I had so much amniotic fluid (we would find out the following day), is because you weren't swallowing it.

That evening, your dad and I had no clue what the following day would be throwing at us, but how grateful I am for the Holy Ghost in prompting me to go to the hospital. I am beyond grateful for the love that your daddy has shown me, he is one amazing man. And as I write these letters to you, and relive these experiences - some, sad and some good, I am so grateful that I have written them to you! You are missed everyday! And as we celebrate your first Birthday tomorrow, I know that you will be there with us, only in spirit - free of pain and happy as can be! I cannot wait wait for that day when I can hold you in my arms and smile, laugh, hug, kiss, and talk to you! I love you baby girl! Families are forever!

Love,

Mommy


Your sweet daddy got me flowers today:) Boy do I love your dad!

Wednesday, January 14, 2015

Six Months... Half a Year

Dear Annie,

Oh goodness... today has been weird and hard for me to process; it has now come to the point where you have been in Heaven for half of a year now. As I type this letter to you and look at the walls with your pictures hanging, I miss you so much. I yearn for the day to come where I will be able to hold you in my arms again, but in perfect form. These past six months (and since the day you were born), my testimony on eternal families has grown a tremendous amount.

Last month your dad and I got the privilege to share our testimonies on the "hope through our journey". It was the first time I spoke about you in public since your funeral. It was so nice to be able to share my thoughts of how I felt and what our journey was like through having you and how strong you made your dad and me as parents. One thing I wanted to share with you that I said was, this story:
"I remember when Annie was born, I knew we were in for quite the roller coaster. Everyday I would kneel down and pray to my Heavenly Father pleading that everything would be okay. I would read these miraculous stories of Jesus healing the blind, healing the sick, and raising the dead. I wanted a miracle like this for my sweet Annie so badly, so I prayed for a miracle numerous times a day. But every time I prayed, I would only get a sweet feeling of comfort knowing that everything would be okay; only I knew that the "okay" I was feeling, meant that my Annie-girl would soon leave this earth and return to our Heavenly father, and I would have to wait to raise her [until the next life]. It was so hard for me to accept what Heavenly Father wanted and I brushed it off for a while. But as Annie started getting worse and worse, the feeling got stronger and stronger. Through hope comes faith, we must have faith in all things in order to live a positive life. So, through faith, I knew everything would be okay. Knowing that Annie was going to soon leave Sam and I for a short while, I knew through faith that it was what our Heavenly Father wanted and what Annie needed..."

Annie, as I miss you so very much, I know that my faith is what has helped me know that I will see you again. Even though it is hard each day, and even harder some days, I know that you are always watching over your dad and me. You have brought so much joy into our lives even with you physically not here. You have made us become stronger, better, and more faithful people. Our Heavenly Father loves us, knows us, and wants us to be happy - that is one thing that I tell myself each day. I know that our Heavenly Father lives, and that he watching over us. I know that you are watching over us too and checking up on us. You are constantly in my mind and as I miss holding your sweet little body, I know you are happy and free doing the work that needs to be done up in heaven. Please know how much I love you and miss you. I will see you soon my baby girl.

Love,

Mommy

Just all bundled up! Miss this <3
Visiting you on New Years!