Back home and got all the “good pics” out of my camera so I can post about all the fun we have had lately.
The holiday party for Bass Center patients. Walking in I noticed the sign….”survivors party”. This was the first party of its kind…for some reason I expected it to be only current patients. But it was also for past patients. I would be lying if I said it wasn’t hard to read the word survivor on the sign…But onto happier things….
She was so excited about this for a few weeks. Jennifer adores her drs and nurses and couldn’t wait to show them off to her brothers and her brothers off to them. I am pretty proud of my little family and JLK certainly is too. I have some pictures of them together…not sure if its appropriate to share…But if it is I will add it in later. You can just see the love and bond that has already formed with her oncologist …and its obviously mutual.
Immediately I was able to go back and check out all special gluten free food that had been purchased especially for her. There are so many patients all with different needs…it meant so much for my daughters dietary needs to be addressed. It meant we were all able to let loose and enjoy the night.
First up were the capes. All our kids got super hero capes that they picked out and their initial was then embroidered on it. All 3 big kids picked out capes that perfectly suited them. Then they moved onto making a craft. It was necklaces….I was apprehensive about letting Jennifer do it since I am not sure how hard it is with double vision, but she did quite well with just a little help.
She loves face painting so we went there next. Nicholas wanted the same thing as sissy. While we were waiting for him to get his done “Roar” came on and we danced and sang together. I held her in my arms and even though nobody else was dancing we danced with no shame.
They had times to meet Santa and ours was up. He was amazing…And they were able to all spend a good amount of time with him. All the kids got to pick out a present from his elves. Big toys…so they were very happy.
We ate and Mrs Claus came for a visit. I’m not sure what it was exactly but this night was emotional for Tony. I think we are lucky that we seem to trade off struggles…since mine came this weekend. But he was often moved to emotion through out the party. 
Back in the main room we did a photo booth and Nicholas Jennifer and I danced again. All the kids got to win gift cards in the dance contest. JLK was so excited to have won…I mean seriously thrilled! The next day we 
went to Target to spend her gift card and she wanted to buy a gift for herself and one for her friend. She wanted lots of bigger things for herself but stuck to the idea of one smaller for her so she could buy something for her friend.
And I danced with her. And I laughed and I smiled. In that moment we were just mother and daughter and brother on the dance floor. I am so thankful for those moments. 
Back at the apartment all the kids went to bed really well together…And Tony and I got to watch the glitter photo shoot video together for the first time.
Radiation the next day I blogged about http://unravelpediatriccancer.org/?p=277
And then we went to the park. It was the first time in what felt like forever all 3 of our big kids got to play in a park together. It was simple and wonderful. 
I think it must be hard to be the parent who is not at the radiation treatment every day. Don’t get me wrong, it’s hard for the parent who is… but for the one at work it must be compartmentalized and just must crash down on you all at once. I’m so sorry you guys have this struggle to go through. Sending positive vibes for whatever its worth…
We lived in Gilroy for 27 years and I agree that even though it’s grown a lot it still has a small-town feel. Gilroy was very good to us. My daughter was in the Dispatch several times.
Our daughter Leslie passed away last year after a lifetime of struggles. She was born with a severe heart condition which led to seven heart surgeries, and ultimately a heart/double-lung transplant and a subsequent kidney transplant. The transplants were all done at Packard and Stanford. I can see you in my mind’s eye walking those halls. I spent hours doing the same thing.
When Leslie was born I also had a 2 year old and a 3 year old. Thank God for my mom because she would come and stay with them whenever we were at the hospital with Leslie, which was much too often. I’ve been left with a sense of guilt that I didn’t give as much time to them as I did with Leslie, but all we can do is live in the moment and do the best we can. Don’t beat yourself up because children have an innate ability to understand something even when we think they don’t. On a positive note, my other two kids turned out just fine.
From the very beginning we knew that Leslie’s chances of living a long life were slim, but she actually made it to age 31. I know all too well the feelings of wanting to cram as much into what time she had as possible. I wanted her to experience everything she could. For 31 years we lived with the knowledge that we could lose her at any time. There was always a sense of waiting for the other shoe to fall. That is a sentence I wouldn’t wish on anyone.
Because of her heart condition Leslie was unable to do much of anything physically, but her mind was amazing. She was absolutely brilliant. She was also warm, loving, thoughtful, and funny. We often said that what God didn’t give her physically he more than made up for in her mind and personality.
At the end, Leslie was on life support and we had to make the decision no parent should ever have to make. She may have been 31 but she was still my baby. I had poured my heart and soul into her from day one. I got in bed with her, held her, and sang songs I knew she loved, including one of her favorites as a toddler. I held her until she took her last breath. I was blessed to be her mother.
You are a good and loving mother, and your kids are very fortunate to have you. I feel your pain as you make your way through this nightmare. I’ve been there. I know the sheer terror, the sick feeling in the pit of the stomach, the uncertainty, the frustration of not being able to do anything to change the ultimate outcome, the worry about your other kids and what this loss will do to them. I know the bittersweet feeling of every birthday and holiday and wondering if this one will be her last. I know the toll it takes on you mentally, emotionally, physically. I know how it impacts your marriage, no matter how strong it is. *Side note: my husband and I are still together and still strong. He’s my best friend.
Keep doing what you’re doing. Your memories will be there to comfort you for the rest of your life. You will really appreciate them, as well as every photo you have. Allow yourself to grieve. Support groups are incredibly helpful. I helped start one when Leslie was a baby. Now I’m in a grief support group.
My heart goes out to you, it really does. If you need to talk to someone outside of your immediate support network, I’m here. Please reach out. Sometimes it helps to talk with someone who isn’t involved yet still understands what you’re going through.
You and your family have my heart, you really do. I won’t wish any platitudes on you; I know how empty they sound and feel. I will say you’re doing an amazing job of handling this. Keep doing what you’re doing, but do allow yourself the time to grieve over the situation you’re in. Do whatever you have to do to keep yourself sane.
Many blessings during this difficult holiday season.
This is not for publishing, but to ask your permission. One of your family pictures from this blog is on Google images. It would be ideal for an emotional literacy training manual that I am writing. I have been deeply moved by your blog, and by Kathie’s response. Would you let me honour Jennifer LK by having the family picture with Mr Claus in a manual? I shall show you the manual, and acknowledge its source on the back page. The manual for ‘Emotional Logic’ is to help people adjust to difficult change in life, turning distress to constructive action – like your party.
Trevor Griffiths