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!