*Music - whether it's a church hymn or a song on the radio, some phrase or word will trigger an emotional reaction with me. Several songs that I've heard lately have talked about loss or death and will cause me to think of what will happen in the future.
*Driving - I will see a sign for funeral homes at a stop light or drive by a cemetery and immediately my thoughts turn to his funeral. When will it be? Who will come? How much time do we have left to spend together? Also... I heard on the radio just last night about different symptoms of various cancers and just broke into tears.
*Other media - I was reading in our church's magazine a talk that my bishop recommended and while flipping through it, stumbled across a talk about a man living with cancer. I've been reading up on things dealing with cancer and different fundraising activities and groups like the University of Iowa's Dance Marathon and I read about some of the children and started bawling as I read about some of the kids in the past tense. They had lost their battle and immediately I thought of Oliver.
*Church - While it gives me comfort to have a knowledge of the gospel, it is very difficult going to church because everything talks about returning to live with Heavenly Father again. I know it's why we are here on earth, but it saddens me to think that Ollie may be gone too soon. Too soon for ME.
*Sayings - "My batteries are DEAD", "I was DYING laughing", "I just DIED" (Playing a video game), "I could have KILLED him", etc. It's amazing to me how many different phrases have the words "dead" or "dying" in them.
It's been really rough because I never know when, where or how strongly my emotions will get to me. I've had a breakdown in a restaurant, in a grocery store, in church. It's very overwhelming to try and process what is going on right now. At those moments I wish I could just open up a trap door or hide under a rock. I just feel eyes upon me and some may know what is going on, but most people don't know. It's hard to try and explain how I feel right now. It changes so much from one minute to the next. One minute I will feel strong and know that it is because of the spirit that I am able to stand and the next minute I am a blubbering mess. I start out each morning praying for strength to get through the day and try to keep it together as much as possible. I pray for peace and hope for the future, but I know that his prognosis is grim. I am trying to prepare myself for the inevitable, but HOW do I??? My step mother said that I can't think of the future, I have to live day to day.
It's been rough because I know that this is bringing back hard memories for my stepmom. Eight years ago my step brother, Alex passed away from a brain tumor. Oliver was only 6 months old. Christmastime is a hard time of year because we found out about Oliver's brain tumor on the 23rd of December and my stepmom found out about Alex's brain tumor near Christmas as well. He lived for a year and passed away on New Year's day and I believe he was only 23. I remember some of the things that he had to deal with as his disease progressed and I am worried that Ollie will have to go through some of the same things. It's hard watching your children go through pain and suffering especially when there is nothing that you can do to ease it. I can pray for him and try to make the best decisions with regard to his medical care, but I personally cannot take this away from him. My heart aches for my stepmom at this time. The day we found out about Oliver I wanted to call her because I knew that she was one of the ONLY people that could say that she knew what I was feeling and that she would know what road I was about to start down. Her and my dad came by the house and talked and cried with me and Ed. I know it was difficult for her to hear and I've been thinking about her so much lately. It meant a lot to my mom for her to come over and support us as well.
It's been overwhelming these past two weeks to see the outpouring of support and love for our entire family. Friends and family who have been supportive always, people who have forgotten grudges, friends of friends, aquaintances, co-workers and perfect strangers have offered up prayers on our behalf. I KNOW that without their prayers, I would not be able to function. Although I've had my breakdowns, I've been able to think clearly most of the time and cling to my spiritual knowledge... my testimony of the plan of my Heavenly Father. I truly feel that this has strengthened my relationship with Him. I've come to Him in constant prayer and have truly 'prayed without ceasing'. I know that I've struggled with forgiveness on some levels and I know that my heart is being softened... that I am being refined at this time. I have been brought to tears when thinking of the future, but I've also been greatly blessed by the spirit to remember where Ollie will be going that he will be taken care of by members of our own family that have gone before us. It brings to light the importance of doing our family history, to get to know who our ancestors are. We've talked to Oliver about who may be there on the other side to meet us whenever we may pass away. We need to know about these people to be able to tell our children who may be there to greet us at that day. It's scary to think about death when you don't know exactly what to expect.
Again... I've been singing some hymns and really listening and pondering the words. I always sing "I Am a Child of God" to my children, but lately the words have had a greater impact on me.
I am a child of God
And He has sent me here.
Has given me an earthly home
With parents kind and dear.
Lead me, guide me, walk beside me
Help me find the way.
Teach me all that I must do
To live with Him someday.
I am a child of God
And so my needs are great.
Help me to understand his words
Before it grows too late.
Lead me, guide me, walk beside me
Help me find the way.
Teach me all that I must do
To live with Him someday.
I am a child of God
Rich blessings are in store.
If I but learn to do his will
I'll live with him once more.
Lead me, guide me, walk beside me
Help me find the way.
Teach me all that I must do
To live with Him someday.
The last part of the song really touched me as I thought to myself, "Have I taught Oliver what he needs to know in order for him to live with Heavenly Father someday? That day possibly coming sooner than I had ever imagined?" Coming to terms with the possible outcomes of this has really brought some important questions to my mind. I've thought more fully about why I am here... why I became a parent... what I'm supposed to be doing... It really makes you take an inventory of your life and makes you look at your priorities and what things you need to change and take more seriously. I want to be an eternal family. I want to live so that I can be with my family forever and be able to raise Oliver in the next life. Life is hard and I don't understand everything. I don't understand why he's going through this, but I do know that someday I will understand. I do know that it is in Heavenly Father's hands. Today at church we sang a hymn about the Lord's will being done and I just lost it. I have to admit that many things make me emotional anyways, but I was just in tears. Our submitting our will to the Father is the ultimate gift that we can give to Him. I need to align my life and refocus so that I can truly be happy and the only way that I am happy is when I'm with my family and my loved ones.
Okay... that's enough time in my mind for tonight. It's late and I am exhausted. I need to have energy to start another week of traveling to and from the hospital...
13 comments:
I am just amazed by your courage and the way you are able to put together this blog. I read this and thought to myself would I be able to write this if I were in their shoes. I wouldn't. It just makes me remember that Heavenly Father has a plan and a purpose for each an everyone of us. Hold tight to that when the times get rough and rougher, you have been chosen to fulfill a path set forth by your Heavenly Father. I have to say that you are doing it and doing it well. God Bless you and your family!!!
What a lucky boy Ollie is to have a Mommy who loves him so much. Thank you for letting me into your life to see your thoughts and feelings. You have more courage then you give yourself credit for.
Stacy,
You are an amazing woman and have an amazing family. I'm so sorry that you all are going thru this. But for you to have this blog its a good way for you to work thru this and to keep friends and family up to date. If there is anything that I can do, please let me know.
Bless you all. Sean
Stacy -- Your post is so familiar to me! Our son Caleb was diagnosed with a pontine glioma in April 2008. It was a difficult journey with him, and now without him, but we are sustained by the love of God and and the prayers of our Christian brothers and sisters.
We are adding you to our prayers, as well.
If you would like to talk with other parents who are on a path similar to yours, I encourage you to check out a yahoo health group for DIPG parents. Here is the link:
http://health.groups.yahoo.com/group/DIPG/join
If you'd like to talk with another mom, please drop me a note at Kim@JustOneMoreDay.org
You and your family are in our family's prayers and the prayers of others as well.
Blessings -
Kim Spady
Caleb's Mom
www.carepages.com/carepages/keepingupwithcaleb
Stacy-
What a beautiful testimony! Oliver is lucky to be surrounded by so much love. We love you and will continue to pray for strength for you and for your family.
Oh Stacy... what an amazing light you hold. We are praying for you, your husband and your children individually. I can not begin to say I understand, but please know I do feel for you all tenderly. There are many who love you and wait to provide what you will need. Do what you do best- hang in there with a smile!
Thank you Stacy. I love you! You are a powerful example to me. Your words are a reminder to us all of the true reason we are here on this earth and to cherish our relationships with our family. I think about you and Oliver every day. You help me to be a better mother. I miss you and I SO wish we lived closer. Do you know how many times I STILL laugh thinking about Jaren petting your leg saying "Meow"?! You crack me up girl.
My dear friend,
I always thought that I was a strong person, but I realize that I am only blessed with true strength when I am faced with true trials. I see that in you...you have a strength that has layed in rest, waiting for when you needed it most. I know that Heavenly Father has blessed you with that strength! And the strength of Ollie just blows me away! What love our Heavenly Father and Savior have for our little ones! You are awesome! I love you and pray for you...always!
Stacy,
I, again, cannot imagine your pain. The moment your dad and Ellen told us the news I hugged Ellen and we cried because it did bring back so many memories. I sat with Alex for many days and although I wouldn't change that for the world it was so hard and I was just the cousin, not the mom. You ask how to prepare or deal with this and I have no answer for you. But I do believe Ellen is right, just take it a day at a time. Cherish EVERY day, every minute and just be as happy as you can with him. Be silly (which I know you are a pro at). It doesn't matter who's watching, all that matters is that each and every precious day he has left on this earth is special in some way and he knows he is loved beyond words. You are a wonderful Mommy and he is wonderful because of you. I think and pray for your family every day. I can't think of the "right" things to say but I just want you to know that I love you and am here if you ever want to talk. Give me a call if you need someone new to come visit. I don't want to intrude because I'm sure you have a lot of close friends and family with you but I would love to visit with you sometime. Stay strong and be silly!
Love,
Lindsey Eibey
Stacy - we love you so much and you continue to be in our prayers! Thanks for sharing your thoughts and most personal feelings on this blog, and letting us all into your heart. I have called a couple of times and left messages for you, just so you know we love you and are praying for your family. However, last night I sent a quick text and it was returned to me...so, I realize I have two numbers for you in my address book. One must be wront - can you send me the right one?
Also, had a thought come to mind this week. We have heard "...in my Father's house are many mansions..." and I was thinking if this were one of my boys, wondering if giving them a mental picture of being the first to go and start working on the family mansion might help. Maybe silly, just a random though while trying to process how to explain all this to a child and it came to mind. We will all be blessed to live together as families in our next life, and what a wonderful thing to have your family with you!
We love you so much - if I've been leaving messages on the wrong number, I'm so sorry - we are thinking about you and praying daily for your strength to get through whatever comes your way. You guys are awesome!!!
You don't know me, I saw a link to pray for your son, Oliver on facebook. I have been reading your tender posts. My heart is touched and aching for you.
We lost our son Michael to a brain tumor when he was just three. I do understand what you are saying about how things suddenly are so much more noticeable. My son was in Primary Children's hospital in SLC. I used to look out the big pictures windows onto the valley below. People were shopping, going to movies and just having fun and I was in agony. I would sit and wonder why it was my son out of all those people. I went through a stage where I would stare at the Prison and be so angry that it wasn't one of them instead....so many emotions.
I did like you and prayed non-stop and after the first few weeks of initial shock and anguish I started to feel more and more peaceful. I know that prayers were carrying our family. I had a six week old baby when we found out. How blessed we are to know where we go after this life even though we are profoundly sad at our loss. Stay close to the Lord and your husband and love every minute with your family.
I know it is so hard to have that constant worry in the back of your head---will he survive? I pray that you will have the peace to not let it worry you --as much as possible. I know that the Lord will give you the strength to endure and it will bless your family so much. I hope I have not said more than I should but I wanted to share my feelings with you.
Take care and know that the Lord loves you dearly and knows that you are very strong to take care of such a sweet boy. Terra Anderson in Ankeny, IA
I know I keep replying to post and what not with this, but I just can't seem to say it enough. I love you! You all amaze me and I'm so blessed to count you as one of my friends. You inspire me. Okay, I'm at a loss (big for me). Just...thank you.
Thanks for sharing Stacey. You are inspiring. I never got the chance to meet you or Ollie and that makes me sad. But, even without meeting you I feel your spirit through your blog. I also get the distinct impression that Ollie must be a very very valuable spirit for Heavenly Father to ask so much of him. Some day maybe not in this life we will all understand and you and your family will be blessed. Much love and prayers to you all ~E
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