Sacred Grove

On our way to our ward temple trip a few weeks ago we had a few moments to stop at the Sacred Grove before our session began. We weren't entirely sure if was going to be such a good idea because that is and still remains a precious memory to us. We had many wonderful memories as a family of four and a walk through the Sacred Grove is among one of my favorite. In fact, the Sacred Grove is the location for many treasured memories....

The first was when Robert purposed to me.  We were headed to the Palmyra, NY pageant and Rob wanted to go early so we could walk around Sacred Grove together. We were meeting some friends who were going to save us a good seat so we didn't feel like we had to rush. It was a beautiful day...except it rained most the time we were there. Thankfully, the trees are so dense that it doesn't really bother you when you are there. Robert purposed to me in front of a "witness tree." There are several witness trees in the Sacred Grove that were said to have been there when Joseph Smith had his first vision about the Book of Mormon. We walked for what seemed like forever and when we finally found one...there was a group of girls sitting on the bench next to it. To make a super sweet and long story a little shorter, we waited till they left and when we walked over he knelt down in the mud and asked me to marry him.  (I said "yes")

We had visited the Sacred Grove many times while we have lived in Upstate New York. Each time, Alexis learned a little more about why it was so special. We visited with Robert's family from Utah and went with our friends on several occasions. Not one memory of our visit is short of a wonderful experience. I love that when you walk through the grove you can see the temple through the trees.

The Sacred Grove is also the place that we were as a family for the last time before Drew had his first seizure and ultimately left our family. We were headed home and despite Robert's usual sense of direction, he took us a little off course and consequently we drove right though Palmyra. We loaded up the stroller and had a wonderful walk through the Sacred Grove that day as a family. We even went back to the witness tree. It was the first time we had shown Alexis where Robert had purposed.

It was a wonderful moment as a family that we were able to share together before our lives were turned upside down. 

I guess the witness tree has witnessed many miraculous things...

FINALLY!!!

I titled this post for two reasons...

First, I FINALLY have found the motivation to starting writing on my blog again. I suppose I had to take a small break from all social media including this blog because I lacked motivation to read about other peoples lives (I know, selfish right?!?) But I am also having a hard time formulating a post that didn't entail an extreme about of negativity and sadness. The past few weeks have been a serious struggle for me. I have been having a hard time in social situations because I often find myself unable to cope with any measure of pressure, anxiety, stress...even joy. I find peace and joy in being home, reading and going about my rather boring life.

Second, We FINALLY got an appointment with our team of geneticists to start the genetic testing! It has been very frustrating waiting for our insurance to give any indication of whether or not they would help us pay for the genetic tests we need to get to better understand what took Drew away from us. To no one in particular's fault it is just an incredibly slow process. I was also beginning to feel like I was being cut off from blessings of any kind or any type of communication with God. I suppose I thought that maybe he wants to throw me out and see how I do after all the guidance he has provided for me and Robert over the last few weeks.

Here is what happened to get to where I am today!

I met with one the members of our Stake Presidency several weeks ago. He was just checking on me to make sure I was doing OK. I told him what I was struggling with, and he shared an amazing piece of insight with me that has been incredibly true in my life, especially right now. He shared with me this scripture from Joseph Smith History:

After I had retired to the place where I had previously designed to go, having looked around me, and finding myself alone, I kneeled down and began to offer up the desires of my heart to God. I had scarcely done so, when immediately I was seized upon by some power which entirely overcame me, and had such an astonishing influence over me as to bind my tongue so that I could not speak. Thick darkness gathered around me, and it seemed to me for a time s if I were doomed to sudden destruction.

But, exerting all my powers to call upon God to deliver me out of the power of this enemy which had seized upon me, and at that very moment when I was ready to sink into despair and abandon myself to destruction--not to an imaginary ruin, but to the power of some actual being from the unseen world, who had such marvelous power as I had never before felt in any being--just at that moment of great alarm, I saw a pillar of light exactly over my head, above the brightness of the sun... (v15-16)

I could finally understand how God gives us blessings...right at the moment when we feel like we will absolutely self destruct and can't handle life anymore. But here's the trick. We have to go to Him!! This is such a powerful scripture to me. I can think of this example in my life dozens of times in just the last few months since Drew got sick and passed away.

I have also been reading a fabulous book called "Divine Signatures" by Gerald N. Lund. He is a descriptive and inspirational author. This book is focused around our communication with God and how He makes it apparent that blessings are given in a way that we can know with a certainty that they came from Him. Sometimes when we receive a blessing, God wants us to know that it comes specifically for you because of the timing of the blessing. It comes at a time when you know there is no way it could have happened that way out of coincidence.

I have been slowly digesting this book and pondering what President Richards taught me in that meeting when an absolutely amazing experience happened. I hope you aren't disappointed because I didn't see angles. No one descended from Heaven. But this experience has extreme power to me.
I was sitting at my desk at work when I received a call from one of the genetic counselors. I feel like I have talked to him so much in the last few weeks that I could recognize his voice out of a crowd! He told me that Ambry genetics got back to him about our insurance and he had good news. According to our insurance policy they decided that genetic tests are covered at 80%..........I was blown away. I was standing in an empty classroom and I started crying. What a huge blessing. Although we have the money set aside in a trust fund for the test (giving our insurance company wouldn't pay for any of it), we now have a window to help others! We went from having a test cost $14,000 to just over $2500!
Here's the most incredible part. I was having an excruciating day. I felt like I could burst into flames because I had so many emotions running through me. When the genetic counselor called, it was exactly six months since Drew died. As I was pondering this significance after I got home, I heard a small voice enter my heart... "This is from Me!!" I knew exactly what that meant!

Our Goal

I am so excited to announce that the Memorial Trust set to help our family get genetic testing has reached it's first huge goal. I say first because the fight will never really be over...whether for our family or another one. We now have the needed $14,000 to get the genetic test through Ambry Genetics, with the hope that they will be able to pinpoint a genetic mutation that was likely to cause Drew's disorder. From there the road could be long if it is a mutation that has never been seen in a human before.

I owe this big feat to my husbands family. They embarked on the task to help us raise the final $5000...through a fundraiser in Utah! They did more than raise that...they raised a total of $6000! It truly brings tears to my eyes to think that individuals who live on the other side of this country would be that generous to our family.

Drew was the most beautiful and special little boy. When I held him, I felt a deep sense of peace and joy from being his mother. I have to admit that I frequently hogged him because it was so hard to put him down. The one person I shared him with openly was my husband, Robert. He is still so proud to be his father.

Thank you everyone....Aunts, Uncles, Nieces, Nephews....for making the sacrifice of time to raise money for our family. I know that Drew is proud of the family he was born into. We all are making him proud.

Baby Tress and Garden Stones

This year we tried to establish a small tradition that we know we can follow through with and do ever year. We decided to have a small evergreen tree in our home for Drew. I know this doesn't seem like much but the baby tree we bought was real and planted. We bought a real tree because there is an old folk tale from a group of early settlers to America. They were amazed at the Evergreen tree because during the harshest of winters, it remained green and beautiful! They called them immortal trees. Due to their nature they would gather branches of these trees and put them in their home during the winter to remember the loved ones they lost and to decorate during the most difficult months. Our baby evergreen tree is a tribute to our baby Drew and his immortal soul! His body may not have stayed with us very long but his spirit will be apart of our family forever!

We plan to eventually plant this tree when the ground defrosts and we hope by then we can put it in the yard of our own home!

For Christmas one of my very best friends gave my daughter and I a fantastic present. She is an OT at a preschool and by nature she finds awesome project kits! She gave us a kit to create a garden stone. It had beautiful stained glass and stamps to write a message in the stone. I gave Alexis the option to create this stone however she wanted. She was very excited when she woke up over break and I asked her if she would like to try to make the stone. She replied "yes!! And I would really like to make it a Drew stone that we can put in a garden someday with our baby Drew tree!"

She loves and misses her little brother so much. At these moments it reminds me that she is mourning too. It makes sense but I forget. She is a smart little girl! I am so grateful for her.

Christmas Vacation

We have had a decent holiday vacation and made it through our first Christmas as grieving parents. Alexis thoroughly enjoyed herself on Christmas morning!

I felt ok until we went to Church and sang the song "Away In A Manger" it talks about how peaceful and beautiful Christ was. I couldn't help but remember how peaceful of a baby Drew was! He was always so content..a stark contrast from his sister! It felt like a deep hole was ripped into my soul. I long for his sweet spirit and beautiful eyes. It keeps getting harder and requires more and more out of me to maintain a somewhat normal life.

But I do know one thing...I love the Lord! Without the daily reassurance that I will be with my baby again is what pushes me through this life. At moments when I wish Drew was here to share wonderful family moments with I think to myself "I can't wait to hear his stories..they will be much better than mine!"

Elephant In The Room

The Elephant In The Room

There's an elephant in the room.

It is large and squatting, so it is hard to get around it.

Yet we squeeze by with, "How are you?" and, "I'm fine"...

And a thousand other forms of trivial chatter.

We talk about the weather.

We talk about work.

We talk about everything else-except the elephant in the room.

There's an elephant in the room.

We all know it is there.

We are thinking about the elephant as we talk together.

It is constantly on our minds.

For, you see, it is a very big elephant.

It has hurt us all.

But we do not talk about the elephant in the room.

Oh, please, say his name.

Oh, please, say "Drew" again.

Oh, please, let's talk about the elephant in the room.

For if we talk about his death,

Perhaps we can talk about his life.

Can I say "Drew" to you and not have you look away?

For if I cannont, then you are leaving me

Alone....

In a room...

With an elephant.

Appointment Details

We went to the genetics appointment last week and found out some very interesting information. We are so incredibly grateful to the team of doctors and geneticists from Upstate University. They have worked so hard to help us keep fighting even though the disorder took Drew's life. We were essentially given two options for testing to try and determine the genetic mutation or gene that caused this disorder. Our goal is to finally receive a genetic confirmation about which subtype Drew had and prevent future children from experiencing severe symptoms. In knowing the gene that is associated with this disorder, the hope is that we can test before other children are born. If future children present with this mutuation as a dominant trait (recieving both mutated genes from Robert and I) then we would be able to begin treatment immediately instead of waiting for the symptoms to begin.

The testing option Robert and I have decided to go with is called Clinical Diagnostic Exome testing through a company called Ambry Genetics. They are the company that pioneered the Human Genome Project. I attached a link to this post if you want to check out more about what they do. They only began this type of testing for individuals like our family within the last year. It is very detailed in how they do the testing but essentially they will pinpoint the known genes that cause this disorder and match any mutations we both have. Then, through the process of elimination they will get rid of any mutations that Alexis has because she is healthy; those could not have caused the disorder. It is pretty amazing that they can do this. Robert and I fasted and prayed this past week and feel strongly that we should pursue this testing. It will not only help our family to have more children in the future but we can pass all this information on to ensure that what happened to Drew, won't happen again.

Here is the kicker...the test costs $14,000!!! Thankfully we have just around $9,000 in the memorial trust fund that was created after Drew passed away. That means we are about $6,000 short right now. However, we are not giving up that easily. We will keep fighting.

http://www.ambrygen.com/ClinicalDiagnosticExome.html

Thank you all for continuing to remember Drew and our family as time passes. We will never forget him but it is comforting to know that he touched so many peoples lives in his short life.