Tears...

Thursday, June 9, 2011

It's amazing how much I want to be strong. I want to be able to gracefully get through this difficult journey -- to say that I have the utmost faith that everything will be okay... that my family and I can get through this... that Oliver will be healed. Most days I have the faith that everything will be okay and that one day we will know why this has happened. I know the things that I 'should' know, but I just can't wrap my heart around it. Today was not a good day.

I've been extremely stressed lately for many reasons. I've had a change in medication, have been having horrible headaches, stressing out over Ollie's benefit, fearing for what Oliver's MRI will show next Wednesday, saddened to hear of other children being diagnosed with cancer, with DIPG. It makes my heart ache... truly ache for these families because I know more than most what they are feeling. Granted... all of our journeys are different.

I've been learning how to create a slideshow on my own for Oliver's benefit and I've spent hours trying to fit things together while my 18 month old stands by my side whining to be picked up. He's a very clingy little stink right now! He usually sits on my lap while I try to figure it out. He loves looking at photos and watching home videos on the computer. However, today as I was working on it, I just burst out in tears... bawling. So many thoughts raced through my mind. Why was I making this video? How can I capture Oliver's personality and let people that come to his benefit truly see who his is? Will people ever know what a sweet boy he was and how funny he was if he loses this battle?

We are trying to make a wish come true for him. Things have changed a lot in the last 18 months and I want to do what I can to make him happy. I'm making a slideshow for my son that has a brain tumor that could kill him and statistics have shown that it most likely will. I'm making this slideshow to show at a benefit so that we can take a trip that may be his last big trip. This is not right. This should not be happening to us. I just can't do anything but cry and now I have a huge headache. GAH!!! I feel bad because people ask what they can do, and sometimes I don't know. I can't transfer my grief to someone else to take for a bit. I feel numb today. I know that I shouldn't have these thoughts, but again... I can't help it. They weasel their way into my head and wreak havoc on my mind. Some days I don't know how much more I can take. Everyone says that they don't know how I do it... that I'm stronger than I realize... if they only could see how I weep when I'm home in my room. If they only knew that I struggle so much with the will to live... struggling with wanting to end it all and be free from the emotions and pain of this life. I always thought that my mental illness was my biggest trial to manage in this life. That coupled with the reality of possibly losing a child is nearly unbearable. I really don't know how much more I can take. Day to day... hour to hour... minute to minute. I mean... really... minute to minute. At times I'm bawling and nearing the edge of all sanity and then 20 minutes later, I can deal with it. Sometimes I just return to the former numbed feeling and feel like I'm zoned out.

I'm hoping that I can get my medication figured out and these episodes will be fewer and further between. Most of the time I am sane and have fun with the kids. Other times... not so much. I've been lucky enough to meet a great counselor that I've been seeing since about a month after Oliver was diagnosed. I've also started going to group therapy for my mental illness and learning ways to try and manage the disease. It is a lot of work and thank God for medication. I am blessed to have found a counselor that I click with and that understands my illness and helps me probably more than she realizes. Climbing back out of the hole I've been in for the last day or two... waiting for this headache to go away. Going to bed and hoping for a better day tomorrow. I want to be well for Ollie's benefit on Saturday. I want to just BE WELL.

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.