moving on
A week and a half ago John and I picked up the document stating that James’s cemetery site was paid for. We were very close to his spot, but we didn’t have time to visit him because I had to meet someone at my new school so I could move into my classroom. It felt wrong to rush off to the next thing, and ultimately it feels like a betrayal to be leaving him behind at all. Going back to work is like turning my back on our time together. It feels like I am walking out on a vigil I am supposed to keep. I loved teaching, and I missed it when I left, but I didn’t want to come back to it like this.
The day before I went back to work, John and I spent time at James’s site for the first time together since we chose it the day after he died. On that day the tropical storm had refreshed the lakes and created new pools all over the cemetery, and I had cried so much my contacts had clouded over and I could barely see. This day was sunny and cool, and the tears still came, but they aren’t the continual stream they used to be. I think my vision has cleared, too, and not just my eyesight.
We snapped off the pansy seed pods, brushed the dirt off his photo, and talked to him a little while. John remembered his beautiful smile and his ready laugh of “Hmmm!” Lizards stalked stiffly along the shady crevices of the marble slabs. I thought how James would have enjoyed them.
Recently I read that one of James’s HPE blog-buddies turned five this month. Hopefully everyone reading this can appreciate what a milestone that is! Ryland has the same degree of HPE that James had, severe semilobar, with a new problem of possible seizures. Ryland’s mom described her idea of a wonderful day, and I could completely identify: seeing him smile, not being in the hospital, watching him learn something new, or hearing a doctor’s good report.
That was my life, too. It felt so limited at the time, but there was a heightened joy and hope and thankfulness that was the flip side of the sadness and pain of disability. I miss that life. That complicated, exhausting, intense, but beautiful life of singleminded service.
I don’t want to move on, but I have to.
Our Journey, Our Journey (chronological) | Comments (10)10 Responses to “moving on”
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As usual, very meaningful and poignant words from your giftedness with words.
Surely all that God did in your life through James will always be a part of your character. You will bless others with those fruitful traits for the rest of your life. You’ll never be the same. You’ll be more fruitful than ever for Christ as a result of all you’ve been through…James lives on that way seems to me……
Love
Patty
Thank you for continuing to share James, and to share yourself. I check your blog regularly for updates, and I am always so uplifted by what I read, despite the grief surrounding the loss of your sweet boy.
James’ life was important, and even though I never met him – or either of you – it meant something to me. I just wanted you to know.
Again, thank you.
Continued prayers for you and John, with hope of healing. Each transition can only be scraping on a raw wound. Eager to learn how God uses this in your life, to His glory!
I remember in July and August, as Xiao’s condition was getting worse and worse sometimes it seemed by the day, having a sense of how temporarily I needed to be on such a heightened level of caring for him. At the time, I hoped it would be because of a miracle God was going to perform and Xiao’s tumor would just disappear or at least stabilize and then we would begin a journey of rehabilitation to get him stronger again. At any point, even now, I would be completely willing to go back to those days. Since Xiao didn’t have physical pain in his dying, I would be happy to go back to any stage of it and just stay there. Even though it was incredibly stressful and exhausting, it was worth it because he was there and I enjoyed that.
I trust that God wants my family where we are now though, and so I surrender to it, believing it to be part of God’s good and right plan for our lives. So, I am forced to “move on” as well. But I continue as we did in the midst of Xiao’s cancer to take today as it is, focusing on the blessings today offers. As Xiao prayed throughout this summer even after he got to a point when you could barely hear what he was saying, I claim that “This is the day the Lord has made. Let us rejoice and be glad in it.” There is amazing strength and power in that for me.
I sometimes feel guilty for having happy moments. And I certainly have a hard time relaxing or wanting to enjoy something I used to enjoy, because I was so used to needing to lay that aside to care for Xiao. And I was happy to do so. But now God has given me a different kind of life, and there’s satisfaction and happiness to be found in it, too. But I have to focus on today to really experience it.
I’m glad to see a update and was even more surprised that you mentioned Ryland. I often find it hard to believe that it’s been 5 years. April 2004 was the first time I heard the word Holoprosencephaly, Ryland was 4 1/2 months old. The Hospital stays, ER visits, doctor appts and many thearpy appts have not been easy but the one thing I find the hardest is having to see other HPE children pass on and wonder why I’m so lucky to still have Ryland.
At the end of your post you talked about how miss that complicated life the James had and it reminded me of another family I got to meet. Alec didn’t have HPE but was just 2 months younger than Ryland, he passed away last Nov. and in one of his moms last posts after he pass away she said even thought it was hard at times she would love to have the complicated life back just to see her boy again.
I still have the Thank You from James birthday on my fridge and look at it everyday. I know the holidays won’t be easy, you will be in our prayers.
~Summer mom to Ryland 5
You are in my heart and prayers.
James is a bit of a habit for me. I have looked forward to hearing about him for so long- to hear your hearts poured out in such beautiful words- the way you poured your lives out for him. You touched on things that resonated with me as a mom, but things I had not taken the time to think through… and yes, I always hugged my kids tighter and appreciated moments more that would have passed unnoticed. In a way, James and you have given me a bit of life that would have been lost back. My life is fuller because of James and you. I am looking forward to your book and your continued updates- I check everyday.
This very seldom happens to me, but the day before Thanksgiving when I was praying for you, a clear image darted across my mind. A lively, smiling James ran and jumped in front of a baby girl, I assume Dora. He was telling her what a wonderful mom and dad he had. I felt prompted to share that with you. We are praying for you this holiday season, especially as Dec 4 approaches. Love in Christ, Susan
Like many before me I am one of the strangers happened across your blog, somewhat unexpectedly, and since earlier today have been reading the entire thing, with tears in my eyes. I am a nurse in Colorado and before having my own child was drawn to the NICU. I want to echo what many have said in saying your story is amazing. I have been so drawn in by James’ bright eyes and charisma. I have also been touched deeply by your faith. My mother died 4 years ago, and it was only by God’s unending presence that I was able to find peace and joy after that loss. I have always believed that I will see her again, in a joyous reunion beyond my ability to comprehend, but I have been amazed by the ways her presence continues in my life. I can only imagine that James and Dora will bring you those same kind of moments that will make you smile and remember. I will wait patiently for Abby’s book, I was so happy to see that she is writing one. I will keep you in my prayers and I wish you God’s continued peace. Blessings, Katie
The word for pansies in French is pensees, which means ‘thoughts’…So it’s completely appropriate and right to put them by James’ body’s resting place.