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!