Sons Phil and Nick were in college. So their schedules were different than the rest of the us. Phil lived at home and Nick was away at school. Husband Harry worked during the day and in the evenings could be found either at the hospital with Steven, or home watching TV with Steven. I was either at the hospital with Steven or at home doing chores.
I would spend late nights on the internet searching for answers. Any possible information that would provide hope and a better understanding of our son's diagnosis was analyzed and file away. Statistical data was reviewed and file away for future questions to our oncologist.
Late nights were a time of quiet in our home. This time was used to sit in front of the computer and provide daily updates to family and friends. I hated fielding phone calls and providing the same information over and over again to well intentioned callers. Over time my email network began to grow. Co-workers, friends of family and friends of friends were now receiving my updates. It became pretty obvious that our story was being sent around the country and parts of the world.
We regularly met with our medical team. We sat down with Barb our clinical nurse practitioner to review the chemotherapy schedule. The "Family Information Folder" was starting to grow in volume as more and more information was being passed along to us. The folder contained a section for each topic related to pediatric cancer from "the medical team" to "medications" to "medical terms" to "educational issues" and so on. The folder was a step by step guide to assist us in our "journey". The folder gave us some helpful direction and resources, and for a while I found myself carrying it back and forth to medical appointments. Finally, it became too heavy and I removed the sections I needed (like the calendar of chemotherapy treatment and important phone numbers) and placed them in a light weight carrier.
In addition to the medical team I had to visit with Steven's high school teachers, school counselor and school psychologist to review his educational plan. Thank God his educational team was proactive (and Thank God I have the educational background to know my son's legal rights to an education regardless of medical issues). So Steven had a Educational Plan (called a 504 Plan) that included home tutoring. Home tutoring was incredibly helpful thanks to Steve's great guidance counselor.
Family and friends felt helpless. What could they do? Some suggested to bring dinner to our home. Which was wonderful, but after a month or two I started to gain weight. It seemed that as my son was loosing weight, I was putting on the pounds, which is my way of handling stress. Although the generosity of friends and family was filled with love and kindness, we needed to put a stop to the food deliveries. In fact at one point Steven commented "what is this a funeral?" In addition, our older sons (Phil and Nick) weren't always home to receive the dinners...it just came to be too much! We needed our own meals and style of cooking. Thank God, we all can cook!
It was about this time that my feeling a lack of control set in. Although I was able to manage my son's schedule, medications, injections, lack of appetite or unusual appetite, I began having panic attacks. Although they were small I felt like I was having a heart attack. What was happening to me? I really didn't identify the nature of my problem. I telephoned my physician and after a brief visit I was informed of my problem and placed on a low dose of Paxil. Now, not everyone can take medications for anxiety, but this worked for me. The drug lowered my blood pressure and heart rate (which was a good thing) and enabled me to take on each day with an increased sense of purpose and calm. I was able to manage my anxiety and put it on a shelf. There is no room for stress and anxiety when parenting a child with cancer. Steven needed a mom who had her act together!
As I began to create routine for myself, Steven and our family, I realized that there was something I needed to do: Ask God For Help!
Now from the beginning I asked everyone to pray for us. But within a very short period of time I knew that my current religious practices were insufficient. I knew that even though I went to Sunday School as a little girl, read the Holy Bible with my beloved mother, sang in the choir as a teenager, taught Sunday School when my children were young, and helped with our youth group, that wasn't enough! Something was missing in me! But what was it?
In the Orthodox Christian Faith there is a term called the "nous". The "nous" is the spiritual soul, the part of our humanity that connects us with God that has nothing to do with our mind. It is not logical. For some it might even be referred incorrectly as blind faith. But it isn't blind at all. It is the awareness that God exists in all of us and that the only way we can commune with Him is through constant prayer.It is the give and take that occurs when we reach within ourselves and find peace through constant prayer. I knew that if I was going to turn to God for help that I needed to communicate with Him.
I began to ask questions of my spiritual father. I read about the Saints and their sacrifices. I read the Bible and about the Orthodox Faith. The studied the prayers written to help people like me find a way closer to God. I went to confession. I asked God for forgiveness. I read the prayers and was overwhelmed by the beauty of the language and the obvious sincerity of the authors. For example many of the psalms were written to help us communicate with God and ask his forgiveness. Do know Psalm 142?
"Lord, hear my prayer,
In your truth, give ear to my supplications;
in your righteousness, hear me.
And enter not into judgement
with your servant,
for no one living is justified in your sight,
For the enemy has pursued my soul;
he has crushed my life to the ground;
he has made me dwell in darkness,
like those who have long been dead,
and my spirit is overwhelmed within me;
my heart within me is distressed.
I remembered the days of old;
I meditated on all your works;
I pondered on the work of your hands.
I spread out my hands to you;
my soul longs for you like a thirsty land.
Lord, hear me quickly;
my spirit fails,
Turn not your face away from me,
lest I be like those who go down into the pit.
Let me hear your mercy in the morning,
for in you I have put my trust.
Lord, teach me to know
the way in which I should walk,
for I lift up my soul to you.
Rescue me, Lord, from my enemies;
to you have I fled for refuge.
Teach me to do your will,
for you are my God.
Your good Spirit shall lead me on a level path;
Lord, for your name's sake,
you shall preserve my life.
In your righteousness,
you shall bring my soul out of trouble,
and in your mercy,
you shall utterly destroy my enemies.
And you shall destroy all those who afflict my soul,
for I am your servant..."
Sometimes a prayer like Psalms 142 is hard to remember. There are briefer prayers. But one prayer is highly recommended for our daily and constant use. This prayer is called the "JESUS PRAYER".
Lord, Jesus Christ, Son of God, Have Mercy on Me a Sinner.
or simply
Lord, Jesus Christ Have Mercy On Me.
After a time, I felt better. I knew that my prayers were being heard and I began to experience HOPE.
A rational person knows that HOPE is vital to successfully fighting any cancer. HOPE is what gets you up in the morning and HOPE puts you to bed at night. If you don't believe that your child will recover, then it is likely that he will not survive. You must have HOPE. So we did. We had HOPE. But in order to Believe in that HOPE you need to pray and pray and pray. You need to have Faith that God is going to be by your side every step.
I cannot begin to tell you how transformed I felt. Although I knew the severity of my son's situation, I had
(and have) a Faith In God that will not be taken from me.
Do you recall when Jesus said "Get behind me Satan!" to his disciples? They doubted Him. Doubt is not welcomed in my life. When doubt enters the Jesus Prayer is said fervently. I am reminded of Who is in control: God.
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