Saturday, August 28, 2010

Glimpses into the future...

It's hard to say what the future holds. It's hard to say how I will feel in the future... only time will tell.

During the day the kids are usually running around doing their own things. Eden is at school, Oliver and Jaren play games, watch tv, or play around with each other while I'm cleaning or tending to Finny's needs. I'm not used to being away from Oliver for any long periods of time. Yesterday Ollie went trout fishing with my brother, Bryan, and was gone for the entire afternoon and into the evening. They were still gone around dinnertime and so we started eating without him. As I sat there and looked directly across the table at the empty chair where Oliver usually sits, I suddenly felt sick to my stomach and teared up as I thought of the future... possibly without him here physically. His laughter, his quick one-liners, his smile... how am I going to be able to handle the sadness that will come? I feel like I've been grieving from the first moment of diagnosis.

I've had someone say (behind my back) that I need to get it together because it's just going to get harder. Oh... ya think?! How am I supposed to be behaving??? It's interesting how people are toward me now. People don't talk to me as much anymore. There is more talking around me and not to me. People actually look at me and turn away. I know that people don't know exactly what to say so just say 'HI' or 'I'm here if you want to talk'... something... ANYTHING. I watched an episode of Dr. Phil the other day about a parent who has an ill child and they talked about this exact thing. I was thinking... 'EXACTLY!!! That's exactly what is going on right now." I just don't get it. Google it... google 'What to say to a parent with a terminally ill child'... I'm sure something will pop up. 'It's just too much work', 'I don't know what to say so I'll just ignore her' -- these what I feel people are thinking -- it's definitely what is portrayed. Actions definitely speak louder than words.

I've been keeping to myself lately because of certain things that have been happening and the distrust of others that has arisen. I know it's probably a coping mechanism, but I feel like I have to be guarded right now. I feel like I can't be honest with people anymore. People either can't handle it or they just don't care. Anyways... it's been difficult to feel so alone since I'm a social person. I'm just sick of putting myself out there to be judged and shrugged off.

I've started to see a counselor which has provided a safe outlet for me to speak freely and confidentially. It seems like lately people act like they care and then can't seem to keep their mouths shut, twisting things I say in the process. That is where the distrust of others is stemming from lately. It's helpful to be able to get an unbiased view of what is going on in my life and to have someone that knows about the grieving process be able to help me cope.

Please continue to pray for Oliver as well as my entire family. Pray for Oliver to continue to improve physically as well as mentally, emotionally and spiritually. He's been doing really well physically, but he's been struggling emotionally. He has also seen a psychologist, but he didn't care for it. The psychologist asked Oliver if he was afraid and Ed said that Oliver just started to cry. Who wouldn't be afraid?! I think it's difficult for him to realize and think about what is actually happening to him. He will change the subject or leave the room if something is bothering him. We just let him cry and offer an ear and a shoulder to cry on. We understand that it is the tumor that is affecting his emotions. These things were the first symptoms of his tumor, but we didn't know it at the time. Looking back, around October/November of last year (2009) he was more anxious, frustrated, aggressive -- things that he never was before. We were going to talk to his teacher and counselor to see what we could do for him. Back then we thought it may be signs of depression or side effects from his asthma medication, but now we now it was a symptom of the tumor. We are grateful that he is doing well physically. Today he was tossing the football around with Ed with his LEFT hand again! VERY good to see!

Please pray for Eden that she will be comforted at this time while we are concerned about Oliver. I'm sure she feels like everything is about him even though I try my hardest to divide my time and attention on all of them.

Please pray for Jaren and Finn as they are not aware of what is going on at this time. I pray that they will be able to enjoy the time they have with Ollie.

Please pray for Ed and I that we will know what to do and what to say to Oliver if and when he asks us questions. Please pray that we will be strong and filled with the Spirit so that he can feel love from Heavenly Father. I pray that I will be able to feel that love as well.

Sometimes I feel as if people think we have given up. We have chosen to stay in Iowa with family and not travel for medical care, thus splitting up the family. We have chosen to forgo chemo at this time because we don't want Oliver to be sick. We feel that there just isn't enough evidence that it helps lengthen life. It just destroys the quality of life. We have been able to go places and do things as a family and watch him play and fish and laugh and run -- things he wouldn't be able to do otherwise. I know that we are in the minority in our decision. As parents we have to make those tough decisions and not judge others by what they feel is best for their child and their family. I haven't given up on Oliver. I haven't given up on the prospect of a miracle. I believe in miracles and I believe that he can be healed IF it is Heavenly Father's will. It doesn't matter how much faith we have, but WHO we have faith in and having faith that His will be done. He knows the when and the why. I pray that I will be blessed with peace to deal with whatever comes... whatever emotions come my way. I pray that we can get through this time together -- make memories that will last this lifetime and sustain us until we can be together again, if that is His will. I'm trying to prepare spiritually for what will happen emotionally later on. It's been a struggle I'm not going to lie. This has by far been the hardest thing I've had to go through. I've never imaged that I would be dealing with the possible death of a child... never ever thought this would happen to me, but it is and I have to go through it. I have to do what I can and rely on Heavenly Father for the rest. It's in His hands... it always has been.


meghan said...

What a beautiful post. I am sorry you feel so isolated and like you can not trust anyone. I hope you know I am always here, when you want to talk. I am glad the counseling is going well. You guys are in our prayers always <3

Christi said...

Hugs--- You're in our prayers, as well... constantly.

Rachael M said...

What a beautifully honest post!

Oh, Stacy, I wish I could punch those stupid people in the nose for you! Not that it would probably help, but it might feel good anyway! ;-) No one has the right to judge the answers YOU and YOUR FAMILY receive from the Lord.

I wish I were close enough to be of some really help to you! I think of you guys so often and hope that you are receiving comfort in this time of such profound trials. EVERY time we go to the Temple, I add each member of your family to the prayer roll-- which is such a small thing, but I hope it helps in some way.

Lisa said...

I'm glad you've been able to do things with Oliver and that he's not having to deal with chemo side affects too. I'm sure you've been guided in your decision. We will continue to pray for you and your family!

lisalisa said...

I can't even imagine what you are going through. I am sorry you are feeling so alone. Sometimes I just don't understand people.

We think of you and your family often and you are in our prayers!

eureka1951 said...

My heart breaks reading this post. I pray for compassionate, loving people to enter your life and be a blessing to you all! Just know there are people you don't even know that are out here praying for you and loving you. I pray your true friends step up to the plate and do what they need to do!!!

eureka1951 said...

Not for posting! Dear Stacy, I don't know how I came to follow Oliver's story. I think my kids might know you? Ryan and Sarah (Hasty) Arends? Not sure if you know them tho. Anyway I just wanted you to know if I could EVER do anything please let me know. I'm a grandma to 10 and retired. I am available for help anytime no matter what it would be. Please know I'm praying for you, Oliver and your entire family!! I love that little boy even tho I've never met him!!! Vicky Arends, CF, IA

arendsintexas said...

I'm praying for you and your entire family! I hope that you have at least a few people that you can confide in and trust completely. I will pray for that as well.

Sarah Arends

M said...

I'm so sorry that you have this on your plate. I am an MRI tech, so I have met a few DPIG patients and they all tear me apart. Your little boy is a doll and I know that you know that Families are Forever! Please feel free to e-mail me if there is anyone you want to chat with. I am LDS and sometimes it helps just to have someone to bounce ideas and thoughts off of, even if they can't "solve" the problem! You are a very strong Mama and I know that when the time comes, you will have the Spirit with you to know what to say. Please know that there are people in your corner, even if they are not in your local town. Keeping you, Oliver, and the rest of you Family in our thoughts and prayers...Mariah P.

Amy said...

meghan took the words right out of my mouth.

Mardee said...

You don't know me, Just a friend of a friend who has been reading your blog. The following is a song by Hilary Weeks. It's amazing and I hope the words might comfort you.

I believe that everything happens for a reason.
We’re not just tossed by the wind,
or left in the hands of fate.
But sometimes life sends a storm that’s unexpected.
And we’re forced to face our deepest pain.
When I feel the heartache begin to pull me under...
I dig my heels in deep,
and I fight to keep my ground.
Still, at times the hurt inside grows stronger.
And there’s nothing I can do but let out...
Just let me cry.
I know it’s hard to see.
But the pain I feel isn’t going away today.
Just let me cry.
Till every tear has fallen.
Don’t ask when...
and don’t ask why.
Just let me cry.
When I agreed that God could put this heart inside me.
I understood that there would be a chance that it would break.
But I know He knows exactly how I’m feeling...
And I know in time He’ll take the pain away.
But for now...
Just let me cry.
I know it’s hard to see.
But the pain I feel isn’t going away today.
Just let me cry.
Till every tear has fallen.
Don’t ask when...
and don’t ask why.
Just let me cry.
I have felt joy,
the kind that makes my heart want to sing.
And so my tears are not a surrender,
I’ll feel that way again.
But for now...
For this moment...
Just let me cry.
I know it’s hard to see.
But the pain I feel.
Isn’t going away today.
Just let me cry.
Till every tear has fallen.
Don’t ask when...
and don’t ask why.
Just let me cry.

Piepee said...

You said a while back that we were both on the same path. And it resonated. In many ways we are. And there are some huge differences to. I have had the same feelings. It has been really lonely. And I did and still do feel judged. I saw you yesterday and so wanted to talk, but alas I had my son so I could not. I can tell you what I have done to change to brighter future it could help you. Perhaps not. Only you will know cause I have not traveled your path.
I started with our scars remind us the past is real and our future should be different. Our past need not define our future, but our past does matter. It is where we learn to give and receive messages. It sets a pattern for our lives. Till we change it. I could never change it till I could finally understand. Only God has a perfect love for us. Everyone else is doing the best they can based on their life experiences this far. Every one in this world either acts out of love or fear. Once I realized this I could forgive myself and others for actions and reactions. Lori gave me the next part. I can for give almost anything. But I can not tolerate everything. Forgiving heals us personally. Tolerating everything just hurts us and our families in the long run. There will always be others who think they could do a better job then us. But they do not see the big picture. They don't have to. As I ave always told you. I think you are an amazing woman doing an incredible job in a impossible situation. I can't completely understand I have as I said I never traveled your path. But from what I have seen, if I ever do I pray the lessons you have taught me. I would use. I believe you are suppose to begin grieving at diagnosis, not necessarily for your son. Perhaps, just maybe your grieving the dream of what the future as you saw it would be. I have begun to accept the future will be different but good. Like I said I don't know if this will help. It may not. It's just what I have learned. But please don't ever lose sight of the fact you are first and foremost a beautiful daughter of Heavenly Father. And I believe he is amazed by everything you do.And any mistakes you may feel you have made well, he understands you've never traveled this path before. You are an amazing Mom Wife and friend. And it shines through my dear. Never forget to take time for you. No one can handle the load you have and are carrying right now. Take time to enjoy things just for you. I do love you and to some degree I do understand. I've never seen a sign of you giving up, and I do not believe you will. Love you. call me if you need to. Whether it is just to chat,or to tell me I am so wrong. 235-0180

Piepee said...

You see from where I am standing you are incredible daughter of our Heavenly Father. Doing an outstanding job in an impossible situation. The thing is when I saw you on Sunday I felt so happy. Because neither of us have ever given up. The thing I finally understand is God is the only one with a perfect love for us. The rest of us we are doing the best we can with our life experiences so far to love every one around us. Everything everyone does well it stems from either love or fear. That I can accept. Now I do not feel alone. I hate that you feel alone. I don't have your # if you want to just chat I'm here. 235-0180. Love you

Piepee said...

Did I say 2 songs that are helping What faith can do by Kutless. And an old one I didn't know my own strength by Whitney Houston. When life gets too much I listen to these 2 songs. And I'm reminded I am a strong person. And with faith any thing is possible. Did I say I love you. And you are a great example to me. Perhaps a Thank you is in order. Yes it is. Thank you

Kathryn said...

You are dealing with God's will. He is crying with you. Remember to take one day at a time. There is no right or wrong when it comes to what and/or how you are doing. God loves you and your family and will keep his loving arms around all of you.


I don't really have anything to say except your family is loved and Oliver is a very special spirit (your posts remind me of what I remember you being at Ricks :). People can say what they want, but you know as his Mom what is best for him, it is your God given right as his mother.

Prayers and Love to ya'll.

Barb said...

Stacy, what a beautiful and honest post. I am so sorry that the people you felt you could trust have let you down. You are such a wonderful and faith-filled person. I pray for you and your family daily as I know so many people do. You are all so very loved.
<3 Barb

Ana said...

Loving and praying for you all. Everything you are feeling is just what you should feel in all of this. Your comments about faith reminded me of this talk -,5232,23-1-22-22,00.html - it meant a lot to me at a rough time and I hope it gives you some comfort too. Faith is not knowing the future. You don't have to do that. Christ is all you're required to have faith in. Beyond that it's all about submitting to God's will. You are doing much better than you think!