The one thing about the conversation that was the hardest was toward the end when we talked about where we are at in the journey. Our social worker talked about how the end can feel so far away for so long and then suddenly it is right in front of you. I asked or said (I can't totally remember through the tears) if it is right in front of us. I have always asked our hospice team to be transparent in letting us know when it is time to prepare for next steps. Yesterday the conversation ended with, its time to start having extended family and friends visit. Partially so when the end is near we are not in crisis mode having people come. Instead we can be proactive, allow people the time and allow us to control the influx. Then when it becomes truly time for us to spend the quality and intimate time, we will be able to focus on our family and Logan. Logan has had good days and tougher days lately. We expect that the good times will continue to shorten. Children proceed through the dying process differently than adults and children with neuro degenerative disorders throw even more curve balls. We have no timeline right now but don't want to regret not taking what we are blessed to have and make the best of it.
Of course I went to work after the meeting. What a bad idea! It ended up being a short day. Thankfully Lauren was off school that day and at a friends so Joel and I met up and talked over a few things. Thanks Ginny! Joel decided to take the day off from work today. Some days are just too hard to hold it together and we need our time to process. Yesterday evening I also had a great visit with friends. My group of gals are the best. I sent a text message in the afternoon in crisis and by that evening was crying and laughing with them. They are an amazing group of women who each live with the normal challenges of parenting and the added challenges of differing children's abilities. We all share a common bond among our children that is unexplained.
Today wasn't as heavy. I was exhausted but not overcome with emotion. I admit I did come home crabby which is not fair to Joel and Lauren. There seems to be so much to do right now. So much planning and communicating. Joel and I will need to sift through things in the next week or two. As we do, we may reach out to others for help. If you are friends and family and feel the need to see Logan please email me or message on facebook or call. My email is rnzacher@gmail.com. If you know my number or facebook please reach out that way too. We will need to be protective of our time and emotions but also want to ensure we are allowing our support system the opportunity to say goodbye. Please don't take goodbye as an immediate end but a well wish to Logan for his future journey. If you have other ways you would like to reach out with a letter or email that would also be appreciated and we can share it with Logan.
And for those that worry about our Lauren, we worry too. Tonight she came to me and emptied her school folder. She said she worked all day on something for Logan. It was a beautiful picture with a snowflake. She said that she was scared that Logan will die this year. She said it with a sad but straight face. She then said, "mom I don't want to talk about this at bedtime tonight otherwise I will have bad dreams". I asked her to sit on my lap. She really didn't want to but I made her. I was blunt and said that Logan will die this year and that we are all sad about it. I asked her if she had been hearing us talk about it. She said she had. I told her it is ok to be scared and sad. We do share things when she is present and we express emotions around her. We do censor some things but in the end we feel it is better for her to be somewhat in the know than totally blindsided when the day comes. She was pretty quick to end the conversation but that is how she operates. We take her lead and don't push. She is a smart and intuitive kid. I have no idea where she gets it!
Thank you for the continued prayers and well wishes. This is such an intense process that is testing our strength every day. Logan is the most incredible human being I know.
Rachel,
ReplyDeleteEvery time I read one of your updates, I find myself thinking what an incredible person you are. I barely know you, yet feel like I have learned so much about you as you have shared your family's journey on this blog. Because of that, I will withhold from saying the tradition things people tend to offer up in these times, because I have a feeling you would not have had your life any other way. I will just simply say that Logan and Lauren are blessed to have you as their mother and, likewise, you are blessed to have them as your children.
For what it's worth, I think you should write a book about your experience. You are an excellent writer. I think your words could be so powerful for other families trying to find their way through having a child with a terminal condition. Actually, I think your words are extremely powerful for anyone dealing with any of the unexpected things life throws their way. I often find myself with a new perspective or outlook to a completely unrelated problem after reading one of your entries. You have shared lots of good stuff, and I think there is all sorts of wisdom and kindness inside of you that needs to be shared with the world. Just my two cents:)
In the meantime, thank you so much for sharing your journey with an often silent audience. Whether it be a simple thought for a good day for Logan, or a wish that despite all the 'heavy' things Lauren has already experienced, she still finds happiness in 'kid' moments, or a prayer for you and Joel to get a moment to catch your breath, you have all been often in my thoughts over the past 6 years.
Hugs to your family,
Jo Quisberg