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.