Sophie's Rainbow Magnet

I am slowly but surely putting some of the ideas I had into something real. As I said before though, things just seem to take much longer than I anticipated.

Anyway, the above picture is of a car magnet that is currently in production and should be available for purchase through Sophie's site in a few weeks. This is just the first step in raising funds for a new project that I am starting to help other families dealing with what our family did last year. The funds that we raise will be divided into three parts to be used to support and help families in three different ways.

I am planning to give one third of all funds raised per year to St. Jude. You know how strongly we feel about supporting St. Jude because of the wonderful care they gave to Sophie, and for all the help they give to families who are faced with catastrophic diseases.

Another third of all funds raised per year will be given to the Prayers From Maria Foundation. This is another foundation that is very near and dear to our hearts because of the relationship we have with Ed and Megan and because of the personal help we received from them and their foundation. You also know that this foundation helps families through their website, and also provides money for grants so that further research can be done, through "traditional medicine" as well as alternative therapies.

The final third of the yearly funds raised will be dedicated to funding a meal program to provide a small amount of help for families afflicted with gliomas.  The idea is that the family can apply for a dinner here or there as needed and we will ship it to them on dry ice.  I know I was greatly blessed by Kim Walters and all the women who so generously volunteered their time and talent to provide meals 3 days a week to my family for many months while we were spending all our time caring for Sophie when she was battling her tumor. Those meals were a Godsend as it was one less thing I had to worry about each evening (as most were large enough for 2 nights!!) Because I know how much of a help it was, and also because I think this is a great way to honor Sophie's love of cooking, (she always wanted to "help me in the kitchen," even as a toddler), I want to be able to do the same for families all over the US. I am looking for a company to be the supplier of the meals that we can purchase...hopefully at a discount. My hopes are that regardless of where the family is, the meal can get to them. I am planning to start small and then grow as able.

So, as a way to not only get these projects up and running, but also as a tribute to my beautiful daughter Sophie and as a way to raise awareness, I came up with the idea for this magnet. J.J. Lipski's  parents, who created the gray ribbon for pediatric brain tumor awareness and are selling them through their website icouldbeyourchild.org, were so kind as to allow me to incorporate the ribbon into my magnet design. As J.J.'s mom said, "awareness is not copyrighted." All proceeds from the sale of this magnet will go directly to this Smiles For Sophie fund.

As of right now, we do not have non-profit status, but are hoping to work towards that very soon.  We are going to establish an account with the remaining money that was donated to us during Sophie's illness and will add to that as we find other ways to raise funds.  In addition to the magnets, we will soon have rainbow headbands and the "Sophie & Maria's Rainbow Connection" puzzle available for purchase.

Stay tuned as we again get the website and paypal kinks worked out. We are hoping to be able to sell here on Sophie's website using paypal. If not, we might have to do it the old-fashioned way with mailed checks. Nonetheless, the magnets are in production and will soon be available!!

Thanks for the continued prayers and support!! Together we can all make a difference!

Held

Just a short post to reflect on today as the one year anniversary of Sophie's diagnosis and the day our lives were forever changed. Included at the end of this post is a song entitled, "Held". (You just have to click on the arrow to hear it.) Megan told me about this song a few months ago, and I've wanted to include it in a post since. The lyrics are an accurate description of how I feel everyday. I know I am blessed to be here and to have survived this ordeal. God has gotten me through the past year and reminds me everyday of my ultimate goal of being reunited again with Sophie.

"For I know the plans I have for you," says the Lord. "They are plans for good and not for disaster, to give you a future and a hope." The Lord says, "I will guide you along the best pathway for your life. I will advise you and watch over you." "I command you - be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go." "When they call on me, I will answer; I will be with them in trouble. I will rescue them and honor them." "Don't be afraid, for I am with you. Do not be dismayed, for I am your God. I will strengthen you. I will help you. I will uphold you with my victorious right hand."

JER 29:11 PS 32:8 JOS 1:9 PS 91:15 ISA 41:10

I miss Sophie more than anyone could begin to understand, and would give anything to hold and hug her again. Somedays I still get angry that this happened to Sophie, but then I force myself to think about how much fun she is having in heaven. I thank God for getting me through each day. I thank God for bringing so many of you into my life. Often times, I am amazed that I did survive, but I know that it was nothing that I did, it was all the work of God.  Even though Sophie died just 4 months ago in October, I really feel like the "sacred was torn from our lives" one year ago today. Today and everyday I am "HELD," and for that I thank God and all of you.

One year ago today, our life was normal, we were happy, we spent our days with Sophie and she was the highlight of every day. Today, she is only here in spirit and her beautiful body is buried beneath the frozen ground a few miles from our house. Gosh how we miss her. To those of you who are lucky enough to spend each day with a miracle(s) hug them extra tight today and realize how blessed and lucky you are. Live each day as though one year from today you may not be with them.

Sophie, we love you, we miss you, you are forever in our hearts.

NATALIE GRANT lyrics

Happy Valentine's Day Sophie

Happy Valentine's Day Sophie! We miss you so so much. I know you are sending us the beautiful sunshine that we have today.

Sarah wore the Valentine's shirt that you wore when you were her age. She looked so cute. She got it all dirty, so we had to change her into the Valentine dress that Grandma got her. I was sad though, because Grandma said she had another in 5T just for you, because she bought them last year on clearance. I miss not being able to put you two in matching clothes!

These pictures were from Valentine's Day last year. Remember all the snow we had? We had so much fun sledding. You had a hard time smiling for the camera. Now I know why you tired out so easily, and why you had such a hard time climbing up that little hill.

I miss you Sophie girl. You are my tootle bug and you are in my heart always, but today I'm holding you oh so close!
XOXOXOX

One Year Ago Today

I was looking through some pictures as I often do, and found this one from exactly one year ago. Despite knowing what was going on in Sophie's head, I remember this day as a happy one, so I thought I'd share.

I'm sad when I think about the fun Sophie and Sarah would be having.

Four Months Without Sophie

I'm late with my update again. I don't have an excuse, unless Ash Wednesday can be an excuse. Ironic to me that an anniversary of Sophie's death would fall on this significant beginning of time of prayer and repentance. This month not only marks the anniversary of Sophie's death, but also the anniversary of her diagnosis and many "lasts". I cannot believe a year has gone by already. At times I feel like I lost the year 2007. Actually I wish I could lose that year, or just skip over it!

When I think about last February, I now can clearly remember so many things that were "different" about Sophie. Last year, while doing the Valentine's cards for her preschool class, she wanted to stop signing her name after only a few. Looking back, that was surely a sign, because now I can remember how eagerly she decorated and neatly signed her name in cards for people in February of 2006...and she was only two and a half!

Sometimes I wonder why she was given the gift of such intelligence. Why was she chosen to be the child who had an amazing memory, and knew all her letters by 18 months? At the time, I didn't know that it was a big deal, until Sarah turned 18 months in January, and couldn't identify her letters, yet we consider her to be very bright.   I think Sophie was an old soul, filled with wisdom beyond her years. When I reflect back on her intelligence, kindness and vocabulary, it's hard to believe she was only three and a half when diagnosed and four years old when she died.

The hurt and the pain do not go away, and it still hasn't gotten any easier. I miss her just as much, if not more than the day she died.  Lately, I have been haunted by all the "what if?" questions that seem to flood my mind. Even when she was healthy, it was my nature to second guess decisions, but after having been through a terminal illness and death of a child, I go over and over every decision we made regarding Sophie.

When Sophie was diagnosed, and we were given the prognosis, I believed the doctors when they told me she would only live 6-12 months.   I didn't stay positive and think that we could prove them wrong.  Initially it was not an easy decision for me to do radiation.  My first instinct as a parent was to forego radiation and allow the disease to run its course with the comfort of knowing that we could spend as much time at home with Sophie in her familiar environment.  I just wanted her to be happy.  I instantly realized that selfishly I wanted Sophie with me as long as possible, but that her ultimate home would be in heaven; a place that I believe is happier than I can even begin to understand. So I struggled with the question, "Why would we put her through this?" if it would only be to give ourselves time with Sophie.   

After much discussion, encouragement, and great recommendations about St. Jude, we decided to continue with radiation. Only because then, I changed my thought process to believing that maybe through prayer and a miracle, Sophie might be cured. I prayed and believed that radiation might buy us time to find the cure.   It was then that I thought we could prove the doctors wrong.

When radiation did little to shrink Sophie's tumor, and she continued to show symptoms, I felt very guilty that I had put her through all the days of sedation, blood draws, steroids, not being able to eat when she wanted to, our limiting food when her body said she was hungry, torturous baths and the dreaded enema.  I wondered if the radiation did an adequate enough job of stunting the tumor growth just enough to give us the time we needed to find the cure.

People tell me "If you didn't do radiation, you would be asking yourself the same questions." That is possible, but I always have a gut feeling about things, and I had a gut feeling that radiation wasn't going to help her.  I'm writing from my heart, telling the feelings that a parent who has a child diagnosed with a terminal disease has when forced to make medical decisions with their child's best interests at heart.

After radiation, all the treatments we pursued were in the hope of a cure. When I saw Sophie getting worse, I didn't for once want to prolong the inevitable, but I did think that since we tried radiation we should try the other alternative therapies that we discovered.  And although it is obvious that they didn't work, I do believe they made Sophie's physical suffering less. She really never complained of pain in the months after progression. It was only in the last weeks that it seemed she was trying to tell us her leg hurt. But still, we aren't sure. I know that the last hour of her life, with the labored breathing, must have been painful and scary. Her emotional suffering is what I worry about. Especially because she lost the ability to speak the last months of her life, as well as the ability to walk, eat, drink, swallow, and use her arms...things that so many of us often take for granted.

I say to Sophie every day that I am sorry. I am sorry that she was the one who had to suffer. I am sorry I held her arms down so that the nurses could come at her with a needle to put in her chest. I am sorry I gave her so many bites of applesauce with medicine in it that she hated the food she once loved. I am sorry that we had to go away from home to a place that was unfamiliar. I am sorry that we pushed you to walk as much as possible, even though you didn't want to. I am sorry that you couldn't eat what and when you wanted to. I am sorry we had you sit through numerous exams with doctors and nurses asking you the same questions over and over while you should have been playing Dora House. I am sorry you threw up every day and became accustomed to having a bowl at your side at all times. I am sorry you had to suffer. If your true calling was to be home with the Lord, then I'm sorry I didn't let you go sooner.

What comforts me today, even though I am haunted by many of the decisions we had to make, and the suffering Sophie endured, is the fact that she is in heaven with Jesus, and all those who have been welcomed into God's heavenly home.

Please don't forget about the prayersfrommaria.org Sunflower Soiree Fundraiser that is coming up on February 23.  All are invited to attend and show your support for the foundation that is dedicated to helping families and finding cures for gliomas.  We will be there and hope you will too.  If you cannot attend, please consider making a donation to the foundation.  For more information please visit  www.prayersfrommaria.org/docs/invite.pdf

We thank you for your continued prayers and support.  Please pray for the families fighting this battle and for those who have lost children.  May God bless you and keep you healthy.