Sunday, February 15, 2009

Roller Coaster

Today was a roller coaster. After I wrote about Brian this morning and his fitful night, he fell asleep around 8:30 this morning until around 11:00. Then, he woke for about an hour and fell FAST asleep again for several hours. He has been in the recliner in the family room this entire time. The hospital bed was delivered around 11:30 and ready to go around noon or so. I wanted to get him into the bed which has an air mattress pad to alleviate the pressure points caused by Brian's dead weight (aka his right side). I tried a few times to wake him around 1:30. He could not be stirred. I tried again and again he would not even budge. I know that one thing we can expect with this brain tumor is that Brian will sleep more and more until he slips into a coma and most likely passes in his sleep. I became worried that he may be unresponsive forever. I don't know what to expect.



I gathered the support of a couple neighbors assuming that we would have to literally carry Brian to the living room where we have set up the hospital bed. Around 4:00, I broke down with my head in Brian's lap and sobbed, broken and defeated. Within a couple minutes, he woke up. He was very alert and I explained what was going on again. He was very confused. I sought the neighbor's offer for help and they came to get Brian into the wheelchair and into his bed while he was alert enough. He actually took a couple baby steps and was much more stable and steady than just a few hours prior. The transfer from the chair to the bed was easy and uneventful, thankfully. I had learned with Brian throughout the years that tears don't usually help me get my way. Unexpectedly and thankfully, this was not the case today, although no malice was intended.



For the next several hours, visits from Brian's family poured in as the word spread that Brian had taken a sudden turn for the worse. Brian was very alert and conversational. He made more sense than last night as he talked nonsense (albeit funny nonsense) with the shift changing to actual interest in events and people around him. When I sensed he was well cared for and surrounded by love and support and the boys were in the same situation, I went up to my bed and took a long nap.



When I woke, Brian was still alert and asking many questions. He not surprisingly doesn't remember the last 24 hours. He keeps asking where the bed came from and why he is in it. He is very confused as to the time of day and whether or not it is day or night. One minuted he proclaims how early it is and the next he proclaims how late it has become.



I have had to explain to him several times today that he is in the bed because he has been very sick the last day and can't really walk. That the cancer is affecting his balance and memory and hearing and thinking. He spent a small portion of the day angry. I think I won't explain that the cancer is causing this again. I think I will just explain that he has been having some problems and some balance issues. I don't know for sure. I will play that by ear. I don't want him angry. I want him peaceful. I think he is reliving the painful realization that there is nothing left to do and that he is dying over and over again. I think once is enough for that.



He fell asleep again around 10:00 pm. He has been sleeping for the last hour very peacefully. As soon as I finish writing this, I will sleep next to him on the trundle that we have placed in the living room. I want to ensure I get adequate rest.



I put the kids to bed tonight. I talked with them again about what is going on. Grant is more affected right now. He saw me crying earlier in the day and told me to stop crying. I told him I was just so very sad. He hugged me tightly and said, "Cry in my shoulder, Mommy" I sobbed in his shoulder for a while. He started to pull away and looked me straight in the eye saying, "If you need anything, just tell ME, and I will get it for you." I guess sometimes it is okay for the roles to reverse. He also said tonight when I put him to bed that he is sad and thinks it isn't fair for Jesus to take Daddy now. He wants Daddy to go when he is a Grandpa. I couldn't agree more.



My mom is staying with us until further notice. I have two aunts from St. Louis here tonight as well. We have offers pouring in from people as to what they can do. I will just remind everyone that they can send a personal note to Brian at this email address:
brianoneill1972@yahoo.com
and they can contact Kayre (pronounced Carrie) to see what can be done:
karyes@cmcousa.com
309-691-6930 (home)
309-922-9239 (cell)

Brian requested some McDonald's for dinner. He didn't eat much at all. He said it tasted awful. While some may agree that McDonald's often tastes awful, this is an unusual statement for Brian. Still, he has been able to identify and satisfy the urges to urinate and drink today. He has not vomited since last night.



The boys spent some time snuggling in Daddy's bed this evening with him watching some TV. It was cute and they all looked great, don't you think?



I will write more when I get a chance. We do not have a laptop. The desktop is RIGHT next to Brian right now. It makes me happy to be able to hear and watch him in a peaceful slumber AND write this at the same time.



KEEP BELIEVING

39 comments:

  1. Thank you sooo much for the update. You guys have been in our thoughts every moment today. Seeing three O'Neill boys smiling in that picture is a welcome sight.

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  2. I love the picture Angie. Praying, Paul & Cheryl

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  3. Continuing to pray for you and your family, Angie. I hope you get some rest tonight. That is one beautiful picture.

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  4. Your men look great! I am praying for you all. I hope your son will know that Jesus isn't "taking" his daddy, but that when the time comes, Jesus will receive him.

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  5. That picture both makes me smile and breaks my heart. Have someone else take one with you in it to, will you?

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  6. This is so bittersweet. I can't sleep tonight, so will spend time in prayer for you. This is just hard, and it hurts, but God...

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  7. Praising God,after this roller coaster day.
    Brian ended up getting a good sleep in.
    Praising God,for all the people that are around you,so that you can have some sleep as well.
    During the rest times, the body,mind and soul, work together, building up strength for the awake times. Speaking a peaceful, restful night for all of you. Love you Marjo

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  8. I will pray constantly that Brian has as much enjoyment of you and the boys as possible.
    I will pray that you are at peace and comfortable with your decisions.
    I will pray that Gavin and Grant have memories of all the good times with their Daddy.
    God, please surround Angie, Brian, Gavin and Grant with your protection, love and gentleness that they may have peace and serenity.

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  9. You are a wonderful wife and an incredible mother. I have tears in my eyes imagining the young men of your house. How wonderful of you to let them comfort you when they can. I'm sure this is helpful to them too. God bless you all, may God be with you every second of every day.

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  10. Fabulous photo....thank you for keeping us updated as you can. In the midst of all you are doing please remember to get yourself some rest as you can. You need to be taken care of as well. Thinking of you and praying!
    Gretchen

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  11. What to say? It's all been said. Just know that you guys are loved by HUNDREDS of people. Try to see the little miracles that God is performing all around you. With so much love, Kara

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  12. Angie, it is so normal to feel angry about things and overwelmed. I'm glad you were able to get some rest knowning that Brian is being looked after by other family members and friends. I'm also glad that your mother is staying with you to help you in this trying time.
    You are loved by tons of people, who will also continue to pray for you. May you feel God's love surround you and give you peace.
    :) hugs.

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  13. Angie, Thanks for the update. Will pray all day over you and Brian and the boys. I have asked the Lord to prompt me to pray when you need it most urgently. Much love, Shawn from TN

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  14. I'm so glad you had a reprieve and that both of you were able to rest. I know God is with you and that his loving hand is on Brian now. Your son sounds like a little angel.... How sweet and brave for him to share his shoulder with you!

    Sending thoughts and prayers...
    Roban

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  15. Angie- I am praying. On my face praying. I am with Shawn, I will pray that the Lord will signal me, when you need prayer and I will act on it.

    Thank the Lord He gave you those beautiful boys! They are such rocks for you, it seems. How brave and grown-up.

    Hugs!

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  16. Geez Angie I am going through the same thing in my life right now with my father..Your blog has made me feel I am not alone. I know we have our heavenly father with us at all times but I can relate with your pain and feelings. I have broken down and cried also. It is so hard to watch one minute of normal conversation and the next minute total confusion. You are in my prayers, sending you love from michigan.

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  17. Thank you so much for the update! Good or bad news is ok. We (all your blog-world friends) just want to keep up with you & know how to pray. Even when all you can eek out is a few words, that's ok. We love ya & are praying for you unceasingly. HUGS from Texas!

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  18. I am a friend af Cheryl and Sean's and have been following your blog for a few months. You have handled your situation with dignity, strength and humor. You should be extremely proud of yourself. You are not only setting a wonderful example for your children but to anyone who has read your blog. Your family is an inspiration to all. God bless you all and I'll keep all of you in my daily thoughts and prayers.

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  19. You really have wonderful sons. I pray for them and you!

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  20. What a great pic of your guys...that will come to mean SO much to those kids in the coming years. I'm so thankful that you had "Brian" for a little while today...and will pray for continued stolen moments during this trying time. You are all SO LOVED by so many people...we are all still praying and will KEEP BELIEVING that He will provide you the strength you need to make through...no matter what. Thank your mom for me...it brings me great comfort to know she is there with you all.

    Loving you all,
    Kris

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  21. I grew up with the Oneills. Our back yards met. He and I did everything together growing up. I had not heard of Brian's status for a long time and just happened onto the blog last night. Please tell Brian I said hello. You are in my prayers continually.

    (Pastor) Chad D. Kendall

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  22. Angie- every post you write is so poignant. I don't comment all the time anymore, but Brian, you, your boys & family remain in my prayers. You are so incredible in your strength and bravery and an inspiration to us all.

    Big Hugs!!!

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  23. I was directed to your blog by Karen and Fresh Fixin's. I am praying for you and your family!

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  24. Your strength is inspirational. Thank you for keeping us all so informed. Wishing you many moments of peace and comfort in these difficult times.

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  25. What a beautiful picture of the men in your life. Just beautiful.

    Janell

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  26. I'll say a few quick prayers right now. I'm sorry for the physical & emotional roller coaster, Angie. You are grace in motion.

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  27. Look at him with that smile and trust in his eyes.
    What love.

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  28. Angie, I know I don't need to tell you this, but I also know it's easy to forget sometimes...

    Don't forget to let your heavenly Father hold you in his arms. You can't bear the weight of all this, so don't try to. If you do, you'll inevitably fail and feel worse. Allow yourself the strength of the Lord. He is with you. And He is with Brian, and Gavin, and Grant. He is crying too.

    Love you.

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  29. I think your son is fantastic for telling you to cry on his shoulder. Really, in this time of such saddness, you and Brian should really be so proud of them!

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  30. What a wonderful picture of your three men! I am glad that your mom is there and that you are able to get some rest. You need to do that. I am praying for you all. Just rest in Him, knowing that He is enough for you.

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  31. You captured a beautiful moment with your menfolk.

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  32. You and your family are constantly in my thoughts and prayers. Hugs to all the boys in your house, and what an amazing family you are blessed with.

    Still praying for peace and wonderful times.

    Sending you lots of Hugs!

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  33. Oh Angie, I am so sorry for this sudden turn of events.

    Thank you for taking the time to update us all.

    Praying for you in Ohio...

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  34. Great photo of your "boys"! Thanks for finding the time and energy to write an update. Your family is in my thoughts all the time. Sending you love & prayers. ~Laura~

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  35. What a lovely picture. Hugs, prayers and thoughts - all for and yours. XOX

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  36. Angie,
    Your writing paints such a vivid picture each day, and each step in the process that you're going through. I can only begin to imagine how difficult this part of the journey is ... to see such strength and wellness one day, and such a turn around the next. Never knowing what you'll find each time Brian wakes up. Your story has such a purpose for others going through something similar. Your words are sure to guide another through such difficult times.
    I pray that both of you are resting comfortably tonight, and find peace in your morning.

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  37. I came across your blog tonight...and I'm so touched by your family. I will be praying like crazee for all of you

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  38. Still praying for you - thanks for being so diligent in updating the blog and keeping us informed. The photo is a wonderful addition and yes I agree - they all look great. Make sure to take care of you, or let other people help take care of you and things so all the burden is not on you. I am so glad to hear that your mom is there to help.

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  39. We are praying for you all, that's all I can think to say.

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