Saturday, May 31, 2008

Saturday update...it's been 2 weeks

Two weeks ago today I drove frantically to the hospital not knowing what was wrong with Jason, just that a family member was urgently needed there as soon as possible. I have prayed and prayed and told the LORD that I accept His will...I only ask that He help me get through it, whatever it is. He's had a few small surgeries the past couple of days including the placement of a cava filter. He had a tracheotomy and a g-tube for nutrition put into his stomach yesterday and he started getting that this morning. The ventilator tube is now placed into his trach and was taken out of his mouth which means that they were able to clean up his face and he looks so much better. For that reason we decided it was time for Alex to see his cousin today and we took him into the room with the consent of his nurse and my brother in law, Jack.

It was very sweet when Alex saw him, he held his hand and said, "Hi Jason, it's me Alex...get better and come home soon, I miss you...." and then Jason's head moved from side to side ever so slightly but enough to know that he was somehow responding to his little cousin. He's been taking one breath over the ventilator on his own every so often.

Through all of this and everything going on with my mom's diagnosis I feel that my faith will overcome my fear of what is to come.

Thank you to everyone that is praying for our family, I am so grateful.

Wednesday, May 28, 2008

A beautiful day!

I went to the hospital this morning expecting a very difficult day for our family. What I got was hope! The neurosurgeon came in to talk to us and said that he chased the organ donation people away and that Jason is showing brain activity and has now moved his arms and feet!! We won't know for a while what the extent of the damage is to his brain and there is always the chance that he will remain in a vegetative state but he also said "This kid has shocked me with how far he's come, he made it...he's alive" and that he might have some quality of life with lots of rehabilitation. For now we will take that because when we are given no hope and to have come this far you take anything you can get. We just keep praying and take it one day at a time.

Tuesday, May 27, 2008

Every day we get is a gift from GOD

I have truly learned the truth in that statement in the past 10 days. I know a few people have emailed and wondered why I haven't blogged in a bit here and the reason is we have had another family tragedy to contend with and I'm still reeling from it.

On May 17th I woke up to a frantic phone call from my husband telling me that I needed to get to the hospital because they needed a family member there to authorize treatment on my nephew who was in a really horrible car accident. My hubby along with his brother and sister were out in New Mexico for a long weekend to lend support to their mom as she is dealing with her husband in the final stages of cancer. I rushed to the hospital to find my 29 year old nephew, a best buddy to my Alex, fighting for his life in the emergency room. I later found out that he was not breathing and had no heart beat when they brought him into the hospital but that they brought him back and he was hooked up to machines to keep him alive and breathing until family could arrive.

Fast forward 10 days and so much has happened including Robert flying home from Hawaii to see his cousin and be here for support while I had to fly down to Florida in the midst of all of this and care for my mom for a few days. Through the advice of a caring social worker on my mom's care team I was able to admit mom into a nursing/rehab facility so that I could come back home and attend to my husband's family. Mom was very understanding and told me to go home and she would be fine and I am grateful for that because it made it easier on me to leave her there and fly home on saturday night.

Tomorrow should be a big day because the neurosurgeon who did the surgery to relieve the pressure in Jason's brain will be returning and hopefully all of the test results will be back and we will have some answers as to what needs to be done. I am amazed at the way this family has pulled together and become stronger through all of this. In the face of possibly losing his only child my brother in law, Jack, has made the hardest decision any parent will ever have to make and that is to give the gift of life to others if his son is not meant to continue on in this life.

I ask for prayers of strength for our family as we go through the next few days. I have a 10 year old little boy who loves his cousin and misses him so much already and doesn't understand why he can't go see him in the hospital. These two are such good buddies even with the age difference between them Jason always treated Alex like a little brother, not a cousin. He was always there for him and took him fishing or crabbing with him every chance he got. I hope and pray for a good outcome to this and if it is not meant to be I pray for peace for our family as we work through this tragedy.

Wednesday, May 07, 2008

Music brings joy

So it just goes to show you that music reaches everyone no matter what your circumstances and sometimes it helps in ways you can't even imagine. Mom has to flex her feet as much as possible when she is sitting in order to keep the circulation flowing in her legs and help with the edema. Well here we are watching American Idol tonight and enjoying a performance by Maroon 5 and I glance over and see this going on in the recliner next to me!! videoThanks M5 for a great performance and for getting mom so into it that her feet were dancing. Mom has always loved music and she and I share that love together and still do. I am truly cherishing these moments we are getting to spend together and we both can't wait to see Cher and Tina Turner on Oprah tomorrow--well I know mom sure is! I remember several years ago mom said to me, "Before I die I want to see Rod Stewart and Tina Turner in concert". Well that was a long time ago and a lot has happened since then but I am proud to say that back in August of 2003 I managed to get mom to a Rod Stewart concert and in the 5th row and boy was that fun...I don't think I'll ever forget that night. While I haven't been able to make her dream to see Tina Turner in concert come true I know that tomorrow she will watch Oprah and I'll be sitting there smiling as she enjoys the music.

Make the most of every day that the Lord gives you, no matter what your life has in store. Live each day like it could be your last and make lasting memories NOW while you have the opportunity. Enjoy every day to the fullest...listen to music, it does bring joy!

Monday, May 05, 2008

My name is Linda and I am...

...a caregiver.

I am in Florida right now doing my very best to take care of my mom, my best friend in the whole world who is battling brain cancer. I am amazed and so proud of her strength and her spirit and will to live.

I read some very uplifting words recently.

We all have lessons to learn throughout our lifetimes. Life evolves and sometimes our journey takes us through turbulent waters and other times the waters remain still. These journeys become a part of us and make us who we are. We are here to learn from one another and through these lessons we can heal our relationships and sometimes ourselves.

Becoming a family caregiver for someone you love is one of those heart wrenching and at times enlightening life lessons. Your role as a family caregiver can happen abruptly or creep in slowly-unnoticed until one day you realize you are caring more for someone else than you are for yourself.

You find yourself beginning to struggle with the day to day demands and somewhere along the way you realize you have lost your identity and have allowed the caregiving role to define who you are. Your new role as a family caregiver can become as frightening as the initial diagnosis. The journey can be a difficult when traveled alone; however, it does not have to be that hard and you do not and should not have to travel the road alone.

I am so blessed that I do not have to bear this burden alone and that I have the support of a wonderful husband and 3 amazing sons who have all gone above and beyond all of my expectations when faced with the challenges put before us lately. I am also blessed with friendships that I know will last for many years to come and with unexpected help from neighbors who have reached out to us when our lives are turned upside down.

I am blessed because I have...

Jim who is willing to give up his music studio in order to convert it to a bedroom if we bring mom to live with us. I know he will work tireless hours to also make the bathroom on the first floor of our house safe and accessible to mom.

Jesse who is there for his little brother this week while I am away from home. It is making this easier on me knowing that he is there to get his brother off to school in the morning and also after school when he doesn't have to be in class himself.

Robert who calls me to check on grandma as often as he can. I am thankful that he is no longer in harms way and finished up with his tours of duty over in Iraq. I know he is looking forward to coming home at the end of the year and being with his family again...Hawaii is such a far away place to be stationed.

Alex who is being such a brave and strong little boy while I am not home and have to be here in Florida to take care of his grandma. I remember the day before I left he was sad that he couldn't come with me and asked me to take a picture or video of grandma every day because he misses her so much.

Friends who know just what I need and when like a dear friend who just decided that I needed to see a concert at Jones Beach this summer and bought us tickets even though I may not even be home. Another who always knows just what to say because she has walked this path with her own mother and knows just what I am feeling.

Yes, I am blessed and even though things seem pretty hard right now I know in my heart that my Lord will not give me more than I can handle TODAY.