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. 

No blog post from May 30, but a CaringBridge. Then both from May 31. Finishing up the month of May on June 24 feels like I will never quite catch up, but I will try to do my best!

CaringBridge May 30, written by my sister:

“It’s Not Easy Being Green” has been running through my head today when I look at Samantha.  She was wearing an adorable green onsie and it made me think of that song that Kermit the Frog would sing.  I’m sure it’s not easy for her.  She seems to be in a lot of pain every time she gets moved.  Although on the other hand she does seem much more peaceful since she’s been home.

Today Samantha got to be with her whole family – nana and papa arrived early afternoon, plus Travis’s family is still here, so it was a special day.  She was awake for quite awhile this afternoon and even had some fun with a toy which was so sweet.  She did have some issues with her 3:00 feeding and did some throwing up after it, but otherwise it was a good day for her.

We are so thankful for all the people that have been bringing food.  It has been such a blessing to not have to worry about the shopping, preparation, etc. for meals, but instead to be able to just enjoy the time together as a family.

We did have someone that was able to run errands to Conroe for Stephanie and we’ve also had a volunteer to help hang the shelves.  There is a requst for help to unload a moving truck for my parents on Wednesday afternoon/evening.  I will put more specifics on time when it is a little closer.  Thank you to everyone that has helped to fulfills the needs/wants of the family at this time.  We are so appreciative!  Most of all thank you for all the prayers!

I want to close by sharing the lyrics to the song I sang for Samantha’s baptismal remembrance on Sunday:

Before you had a name, or opened up your eyes, or anyone could recognize your face, you were being formed, so delicate in size, secluded in God’s safe and hidden place.

And with your little tiny hands, and little tiny feet, and little eyes that shimmer like a pearl.  He breathed in you a song, and to make it all complete, He brought the masterpiece into the world.

You are a masterpiece, a new creation He has formed, and you’re as soft and fresh as a snowy winter morn, and I’m so glad that God has given you to me, little lamb of God, you are a masterpiece.

And now we’re holding you, your life’s a miracle, everytime I look at you I stand in awe.  Because I see in you a reflection of me, and you’ll always be our little lamb from God.  And as your life goes on each day, how I pray that you will see just how much your life has meant to me.  And I’m so proud of you, what else is there to say, just be the masterpiece He created you to be….

You are a masterpiece. (by Sandi Patty ~ some words adapted)

Samantha is God’s precious masterpiece.  We are so thankful to God for her.

CaringBridge May 31, written by me:

Today we had a visit from several hospice folks – the social worker and chaplain came together to talk with us, and then Samantha’s nurse came. Samantha got a bath, and we learned that her head is still getting bigger. Despite having pretty good days the last two days, we know that the growing size of her head is a reminder of the road we are going down. A member of church came to put up the shelves we asked for help on, and we also had some friends come to visit.

In addition, we said goodbye to Travis’ family. They had to fly home to Tennessee. We’re so thankful they could come and spend time with Samantha this weekend. We are also overwhelmed by the outpouring of gifts, food, monetary support, and especially love and prayers from everyone.

Besides Samantha’s health issues, please keep praying for all in our extended family. I (Stephanie) went to the doctor today to work on getting my blood pressure better taken care of. A new medicine will hopefully help with that. Cousin Gabie has her tonsils out tomorrow, and Uncle Mark is having his decompression surgery next week. Lots of health things going on in our family this year, but we continue to remember that God is good, all the time.

To close, here are a couple of links we want to share with all of you.

The first is a link to a video of Samantha, from before she got sick. I took it while she was on my lap one day, wiggling and doing her thing. Enjoy.

The second is a link to a blog post written by a hospice chaplain. We have been so blessed by the support we have gotten, but we know that this is not always the case when people are struggling with death and dying. Please pass this on to your friends so that when they are trying to comfort others, they can remember what is really needed. We want others to feel the love and comfort we have received from so many of you.

God bless you all.

Edited to add: there are issues with the links. I will try to fix tomorrow but in the meantime go to my blog for working links.

Finally, my blog post from May 31, originally titled “Feeling numb”:

How on earth do you parent a child who is dying? I wish I knew the answer to that question. So many people keep commenting on how strong I am right now. Ha! I’m not strong. I just have this ability to communicate my feelings and cry through it when I’m writing. But I’m not strong. I vacillate between numbness and despair most days. I try to avoid talking a lot about it with people. Today was especially tough as I had to go to the doctor. Our doctor is in the same office as the pediatrician Samantha was going to. I spent most of the appointment trying not to think about the last time I was in their office, when Samantha was starting to get sick. Everything about how she presented screamed that she was gassy. And when I heard someone (can’t remember if it was there or in the ER) mention a spinal tap I thought, “no, please don’t stick a needle in my baby’s spine!” But until they did the lumbar puncture, we didn’t know how sick she really was. Ok, I take that back, it was when she stopped breathing. It’s awful that she could get so sick so fast, and you couldn’t tell from blood work or her color or anything.

And now I’m terrified of what is to come. Her head has already grown 2 cm in circumference since Saturday. How much bigger can it get? And how strange is she going to look before the end? Her forehead is already looking huge. And her head is getting softer every day. I love her so much and I am so scared that the end is going to be awful. Travis keeps reminding me that hospice is really good about helping to control her pain. I know we’re not even into using morphine for her at this point. But how long until we’re having to do all of her feeds by tube and she can’t be picked up at all? I’m trying to not think about that right now, which is probably the best. I have to remember to take each day for the day that it is.

I already shared these on our caring bridge site, but I really do want to make sure people see them. The first is a video I took of Samantha back at the beginning of April. I had her on my lap and she was wiggling and just being HER. So I took the video on my cell phone. This is the first day I got it to upload to YouTube. Enjoy meeting our baby girl if you haven’t already.

The other is a blog post written by a hospice chaplain. I wanted to share it not because we have been hurt by well-meaning people (everyone has been so wonderful) but to help pass on some helpful information. Share it with your friends so they know what it means to care for those who are grieving.

I will try to do better with writing more in volume and frequency, but it’s tough when we’re also trying to spend time with people as much as possible. Please know how much you all mean to us.

Next post coming this afternoon.