This blog post is part of a series that I began for telling our story. You can read the first post here.
From this point forward, I’m going to be sharing the text of posts as they were written at the time. Some will come from this blog; others, from our CaringBridge site. I may from time to time write my own reflections after re-reading, but mostly I will just be sharing words as they were written. So much of this journey for me is revisiting what happened, and realizing just how difficult the journey was for us. And now, seeing how far we’ve come since that time.
I really want to catch up with the dates on the calendar, but to do that means I need to double-up my posts even more than I already have. So bear with me as I will post twice a day for a while, in an attempt to get better caught-up. Thanks for your patience.
In June of 2011, I did not write much on my blog. When there is something to share, I will definitely do so, but most of these will be CaringBridge posts.
From June 1, written by me:
Today we followed the advice of the hospice folks and met with the funeral home director. Thankfully he came to our house. We made most of the pre-arrangements that we could, making decisions about casket, cemetery, obituaries (which papers to print it in), and headstone. We’ve decided to purchase three plots, one for each of us and one for our two children. This also involves having our stillborn son, Jonah, exhumed from where he is buried in Nebraska. But we want to put our family together. Tomorrow we will go to the cemetery to pick out the location of the plots.
As we talked, we discussed putting little pictures by each of our names. I sat there thinking, “who decides what is significant for her whole life at the age of 33?” Travis wants a picture of an airplane. We’re going to put a picture of a teddy bear by Jonah’s name and a picture of a bunny by Samantha’s name.
I know that God is working through us to speak to so many people right now. I know my faith has been challenged and come out stronger. Whenever someone commends my strength, I think they are crazy. But the strength is from God, not from me.
We did get the unfortunate news today that insurance will only cover hospice, so we can’t have a home health nurse at night. But the nurse that comes from hospice three times a week will work with us to teach people how to give her food and medicine if anyone is willing to give us a night off. Please let us know if you are willing/able to do this, and please realize that we will be somewhat selective in this process. We don’t want to offend anyone but we do want to be comfortable with whoever is taking care of our daughter.
For those of you praying for our extended family, Gabie’s tonsillectomy this morning went well. She has been mostly sleeping all day since then.
Keep praying – we know that the prayers are helping hold us up!
Also by me, from June 2:
This morning we went out to the cemetery and selected our burial plots. It’s a surreal thing to do in your 30’s, believe me. But we chose three plots in the newest annex to the city’s cemetery. We’re going to have a large headstone with all of our names on it. There is something wrong about us having our family of four buried together. Children are supposed to grow up and get married and eventually be buried by their spouse! Or at the very least, be the ones picking out the plots/headstones for their parents – not the other way around.
On a brighter note, Samantha has been doing well since we’ve been home. She’s much more responsive and has been enjoying spending a lot of time being held. We left her home with her Aunt Allison and cousin Elie this morning while we went to the cemetery, and then this afternoon she got to go for a ride while we ran some errands. She and I hung out in the car while Travis and my dad ran in and out of stores – it’s just too hard to undo her new car seat. The hospital sent us home with a special car seat that allows her to lay flat. The downside is that it doesn’t have a nifty snap-in base like regular infant seats, so we have to thread the seat belt through the straps each time we take her in and out.
Tomorrow we will have another visit from her hospice nurse, who will be helping us figure out some things for having additional help from friends at night. We have been so blessed by this community in so many ways. And the medical community in the entire area has been doing so much for us. From the hospice team to the local hospital to all of the people we have met throughout this process. I want to take a minute to highlight a few of them.
Magda is an OT at the downtown hospital. She loves Samantha and helped us a great deal in learning how to feed her, not once but twice. The first time she helped us move Samantha from feeding with a tube after she was extubated into bottle feeding. The second time she helped us re-learn bottle feeding with Samantha’s specific brain injuries. Because of the nature of her disease, holding her upright for feedings is no longer an option, so we now feed her while she lays on her left side. Magda will always have a special place in our hearts, especially when we think about “code peanutbutter-ball.”
Martha was the CNA at HealthBridge who gave Samantha a bath every day. She loved to do it and waited with anticipation for us to go to lunch so she could take care of weighing and bathing our baby girl without interrupting our time with her. You could see in her eyes and in her touch how much she loved our little girl. Sadly, she was on vacation when we were transferred back to the hospital, and she may not even know what is happening to our little girl.
Dr. Jones – I have to smile about this, because we actually had two Dr. Joneses helping with Samantha towards the end. The first is an experienced neuro surgeon who had to share with us the difficult news that her brain was mostly destroyed. When he talked with us, he had a great deal of compassion, even cried. What a blessing. The other Dr. Jones is a neo-natologist who helped us navigate this move into home and hospice. We did not meet either one until the last week at the hospital but both of them were such blessings to us.
I’m going to try to highlight a few people every so often who have made a difference. The folks who work to help save lives every day have been such a blessing to us. Medicine could only help our little girl to a certain point, but they did everything they could and loved her the whole time. We are blessed by them. Thank you.
Next post coming tomorrow.