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.

Thanksgiving

We made it though another major holiday. The anticipation of the holiday was much more difficult that the actual day itself. We decided to have a turkey dinner as a family a few days before the holiday because Alexis and I drove to Pennsylvania to spend some time with my grandparents.  As you can see, we had the usual fixings, turkey, stuffing, mashed potatoes, gravy, green bean casserole, etc. It was very yummy. Alexis also decided to dress up for the occasion. She was a pilgrim!!

 Robert and I wanted to make sure that as we celebrate the holidays this year, to slowly establish family traditions to remember Drew. We both felt that on Thanksgiving when we are especially grateful for all the blessings in our lives, that if Drew were to "peak" in on us, we would want him to know that we wish he was there with us...that we haven't forgotten him.We decided to do this by setting him a place at the table.

 We made it to Pennsylvania and had a nice visit with family. We ate Thanksgiving dinner at my Nana and Poppop's house. It was nice to be around family but Alexis and I both missed Robert (he stayed home because he had to work). I was so proud of Alexis. She volunteered to bless the food before our meal. She said a beautiful prayer in front of nine people!

 

 Here are my grandparents. They are both amazing people! I love them very much.

 After dinner we sat around and talked. Mark and I spent some time looking through Black Friday adds. We really didn't have any intention of going shopping until Mark found the ad for night vision goggles!

 It was a beautiful weekend in Pennsylvania. Saturday morning we went to a park near my grandparents house that I played at when I was little. Alexis had a great time. It was a great way to burn off some Thanksgiving calories!

We are home now and back to the regular routine. I learned a lot from going through this holiday. Being around family is important but it was hard to be away from our home. Alexis found it difficult to sort out her emotions, especially because she missed her daddy!

Appointment Date

I have a lot to share about what has been going on lately, but i couldn't wait to share this news. We have been waiting for weeks for an appointment with the genetics team to help us answer many of the questions we still have about Drew's disorder. We really are trying to figure out what gene causes the disorder to prevent future children in our family from having serious complications like Drew did. This knowledge will also help doctors and researchers know more about this incredibly rare disorder.
We have an appointment on November 30th, 2011 to discuss with the team our options to get more answers. Yes...I said options..plural. The genetic counselor was very positive about several different options including one very new way to test for genetic mutations. This was great news! I know it will be really hard to talk about everything that happened and relive it all but I think it is a big step in our grieving process...
I promise to post how the appointment goes and the information we get! Thanks to all my amazing friends and family we can actually pursue these options because the trust fund and your generous support. Thank you!!

My First

I wrote a memorial article about Drew and his disorder and submitted it to an organization that raises awareness about rare metabolic disorders. I was so excited to see it up on their website this morning! It will also be published in the next newsletter! You can see the article at http://www.oaanews.org/DrewParke.htm and if you want to sign up for the newsletter you can do that at the organizations website!

Halloween

I didn't think it would happen but going back to work has made it difficult to update my blog. I wanted to share my experience in going through the very first holiday without Drew. It has been especially hard for different reasons than most people who lose a loved one. During the holidays you create wonderful, fun and lasting memories of the people you love. I have read and heard people talk about how hard the holidays can be after the death of a loved one because you miss those memories or family traditions. For us, it is different, because we never got to experience the holidays with Drew. That makes me terribly sad. When he was born, Alexis started to plan out our Halloween costumes. She was so excited to finally have someone to dress up with. At our church, families always dress up their children in clever ways. One year a wonderful family dressed up as Dr. Seuss characters.

 Alexis finally had decided on dressing up as a princess (of course!) and Drew was going to dress up as a frog. Some of the other options were a monkey and a banana, a farmer and a pea...you can see why she chose the princess!! This past week has been tough because every time she put on her Halloween costume it reminded me that we were missing our frog. When we were trick or treating I even saw a little baby dressed as a frog and I just about lost it. I shoved a candy bar in my mouth and kept walking.

Now that Halloween is over and I realize how incredibly tough that holiday was I am nervous for Thanksgiving and Christmas (which do not usually end with large amounts of chocolate sitting on my kitchen table). I was so excited to share with him our family traditions. I would love to hear from readers what their family does during the holidays to remember someone they lost. I want to establish a new family tradition that helps us remember Drew during the holidays!

Just In The Nick Of Time

Growing up I had only a few friends but we moved several times so I never felt like I had close friendships. Throughout my childhood, like almost any normal person, we had many "issues." when I was in those moments I never felt like I had alone there to pick me up when I felt like I was going to fall apart. This ultimately lead to a fierce dedication to never fall apart.

I have had so many moments where I feel like I am going to crumble...and just when my natural instinct...rather, learned behavior starts to kick in...I get a text, phone call or visit from a close friend. Just in the nick of time. I don't even have to ask...it's like she knows exactly what I need...before I even realize it.

Tonight, for some weird reason, I had the urge to can a bushel of pears I got from a member in our ward. What was I thinking. It was a lot more work than I expected! But...just in the nick of time...as I began to tear up with dozens of pears in front of me...Marci calls me and says "I am bringing dinner over in a few and I am going to help you can your pears!" it wasn't the end product that mattered to me, it was the process.

I feel so incredibly blessed to have a friend that is two steps ahead of me. I don't know what I would do without her. In a small way I feel like Drew has been the instrument behind this blessing. I know he is watching over our family. I can still feel his beautiful spirit...the same peace and love I felt when I would hold him late at night when it was quiet and I could relax. In the words of his big sister "I miss you Drewber baby...you will always be my only Drewber...mom, do you think Jesus calls him Drewbers too?"

Yes.

Reality hits hard

It has been close to two months and I feel like reality has hit me hard. I am back to work and enjoying it as much as anyone could. It pushes me to wake up and do something everyday. However, I find myself on the verge of a complete meltdown all the time...when I least expect it I crumble. The hardest thing for me right now is figuring out how to help Alexis and Rob when I know they are struggling. It is so hard to comfort her while she is in tears because I can barely keep myself together. I end up falling apart. She has joined a youth support group that has been wonderful for her. She was so positive and talks a lot about Drew after. I think I need one of those.

I have a lot I am trying to work on to keep myself busy. One amazing project has been doing family history. I know that sounds weird but my mom recently gave me tons of family history that I have been putting into a family tree worksheet online. It is really fascinating. My great great great great grandparents had three babies pass away before they were three months old. It leaves me wondering if they may have had the same disorder as Drew.

No matter where I am, what I am doing, or who I am with, the only thing I think about is my little boy. I miss his sweet s lie and beautiful eyes. I pray everyday that my memories will stay strong and i will never forget even the smallest detail.

I appologize if this is a gloomy post. I am hoping to hear soon from the genetics team to start some testing. Maybe then I can post a more positive note!

Benefit 2011

The benefit we held on Saturday (Sept. 24) was a success! It ran smoothly and seemed like those in attendance were enjoying themselves. Although the large bounce house we anticipated didn't show up we had two smaller ones that kept the kids occupied while their parents were having a good time bidding on fabulous items. We had some serious bidding for the larger items...especially the gigantic Hess Basket! I wanted to share some wonderful pictures we took from that day. All the volunteers were wearing "Drew's Crew" T-shirts! Thank you to all of the sponsors who made that happen, especially Coast To Coast in Manlius who put our dream into action.

 Here is Marci, Angie and Rich!! I have been adopted into their wonderful family!! :) I don't know what I would have done without Marci. Her home became our "headquarters!" Every time I was ready to crawl into bed, my phone would ring and I would hear her positive, uplifting voice on the other end!

 Silly boys hanging out on the large chair that PartyCuse brought to the event! Thank you!

Although we were all EXHAUSTED after hosting the benefit we managed to get a picture of me, Alexis and my mom (Ann) before we all crashed!

I learned a lot from this experience. For me, it was part of my grieving process. I am not the type of person to sit around and do nothing. I have decided to dedicate my life to fighting for babies and children who have metabolic disorders and support families who go through similar trials. My goal is to raise $1 million dollars for research by the time it is my turn to leave this life. I know that might seem large...but I have my whole life to do it and amazing people to help me along the way.

It simply amazed me how generous people are. It was so difficult to walk into business, especially family owned/small companies, and ask for a donation. I know that the economy right now has impacted so many families and businesses yet they were so willing to help in any small way they could.

All together we had around 50 silent auction items and sold close to $2000 in raffle tickets. All the proceeds from selling food was donated by Ruddy's Pizzeria! We are happy to announce that the Drew Parke Memorial Trust is up to $8500!! We can now start the process of finding out more about the disorder that affected our little boy. Plus all information we gain from this, will also help other families.

It has been one month since Drew passed away. I miss him more everyday and my heart aches that I can't hold and cuddle him anymore. I find that the spark that used to propel me through life has a huge gap in the middle. We recently got the tiny hand print the nurse made for us after he passed away, I cherish it! His tiny fingers used to wrap around my fingers when I held him. I miss that.

Thank you all for helping me continue my fight for Drew. I know that his short life on this Earth changed my life in so many incredible ways. I love him so much and I know with a pure knowledge that I will see him again!

Great Grandma Lena

Today has been...one of those days. I have been running around getting things ready for the benefit. Today is my mom's birthday and she is 10 hours away in Virgina with family. Today is also the day my great grandmother passed away. At 2:15pm Lena Howerton left this life to join Drew. At the age of 95, she lived a full and courageous life. I always looked up to my great grandmother. When I was in elementary school I remember writing a report about her because she was such a strong and loving person. My grandmother has always told wonderful stories from her childhood, and my mom admires her beyond measure.

I was fortunate enough to Skype her over the past few days and speak to her for a few moments when we was strong enough to talk. She is such an inspiration to me. I miss her very much but have a small amount of comfort from the fact that she is with my precious little boy.

How grateful I am to have a strong, admirable, faithful example in my life. She is a beautiful daughter of God.

Information Overload

I have been trying really hard to absorb as much information about Drew's disorder. I hope to develop a foundation or support group for families who are faced with this diagnosis. When we were in the hospital with Drew and they described to us the metabolic pathway that was disrupted, we searched for days to find other people that might be able to help us. We found no one. I have searched through numerous scientific studies to gather more information but it seems like the more I read...the more questions I have. Here is the study I have been recently reading over and over: http://www.ncbi.nlm.nih.gov/books/NBK1328/.
Take a look and tell me what you think!

Busy, Busy, BUSY!!!

I used to complain when I was working full-time, going to school full-time while my husband worked two jobs and was finishing his MBA, that I was busy all the time. That seemed like a breeze with how busy my life has been this week. The memorial benefit is coming along nicely. There have been some wonderful people and business willing to help us out and donate items. I am so grateful to my friends and family who have been helping me not only organize this benefit but have kept me going over the past few weeks. Right when I feel like I just can't take anymore, they are there to help me along.

Although it is incredibly difficult to go into businesses and talk to people about Drew, it is healing in a way. I am dedicated to making sure that there is more awareness about this disorder and all metabolic disorders! I hope that someday I can be supportive to another family that might go through a similar struggle with their child.

Sweet Moments

I love sweet moments in my life right now that make me smile both on the inside and out. We were driving home from church today and Alexis was in the backseat with her scriptures open to an arbitrary point trying hard to repeat things she learned in Primary. It is always fun to listen to her because she tries so hard to remember her lesson. Today they must have been learning about the third Article of Faith which states "We believe that through the Atonement of Christ, all mankind may be saved, by obedience to the laws and ordinances of the Gospel"

Alexis was trying really hard to repeat this Article Of Faith but forgot the end. This is what she said instead "We believe all mankind may be saved...by boat!!" I couldn't stop laughing. It was so cute. When I asked her why all mankind was going to be saved by boat she said because Jesus spent a lot of time on boats when he was teaching. I sure do love her and for these sweet moments that bring joy back into my life.

When we got home she set up her room to conduct Primary Sharing Time. She used her doll house for a pulpit and her magic wand to conduct the music. She asked monkey to say the opening prayer but he was too shy so she had to help him! Thank you to all her Primary teachers who make such a big impression in her life that she desires to model your behavior!

How?

I really would like to know what to say. I find that now that I am venturing out into the real world I come across people who don't know what has happened in my life over the past two months. I suppose it is unrealistic to assume everyone in Upstate New York knows about Drew. Well...I was kind of hoping it worked like that. I find myself totally unprepared for these questions:

1. How many kids do you have?
*the obvious answer is two...but then I feel like I have to explain...but I don't so I then feel like a jerk!
2.How's your little boy doing?
3. Where is that beautiful baby boy of yours?

The absolute hardest question to answer is...How are you doing?

I don't ever know whether people ask just to be nice or if they really want to know how I am doing. The hardest part about this question is that I don't really even know how I am doing. When I sit down to figure it out, it usually doesn't look pretty.

So....How do I answer these questions. I suppose this a rhetorical question but it is what is on my mind today. I have come in contact with a few well intentioned individuals who have asked me about Drew. It is so hard to give them an answer. In those moments I want to turn around and run away. Do you think that would be rude??

Answers

When I was in college I majored in Science. I am the type of person that likes matter-of-fact answers. Psychology seemed too abstract for me.  I loved my first chemistry class because there were equations to memorize and when you mixed chemical A with chemical B, you always got reaction C!! It was splendid. When all was said and done, my degree was in educational psychology. Funny how life works.

Anyway, the reason I bring this up is because I am really struggling with a lack of concrete answers. We were able to find out so much about Drew's disorder before he passed away...however one of the super big questions is still lingering. We don't know the specific gene that caused the cobolamin defect. There are currently ten known mutated genes that can cause the disorder Drew had. They were unable to do any of those tests so we are still left with that unknown. I don't like unknowns...

We are hopeful that the geneticist can do some testing on Robert and I, however it is very limited considering we are only recessive carriers of this disorder. I am unwilling to risk another pregnancy without more knowledge. Even though we have great health insurance, genetic testing is still really expensive. I even wrote to Ellen DeGeneres for her help! I know that seems silly but I love her show...and I'm desperate. So...if you happen to see her in the grocery store, or walking down the street, please tell her to check out my blog and help us out! Thanks so much!