It has been a whirlwind 12 days. At one point my dad and I drove around 2200 miles in a four day period. All of this travel, combined with the normal busyness of the Christmas season has left me somewhat physically drained while leaving me mostly too busy to think. Let me first say that the services for Stephanie were all very beautiful. It was good to see friends and family that it had been a while since I had seen. I only wish it had been under different and better circumstances. Thanks you to everyone that was able to make it and thank you to everyone that wasn't able to make it but sent their thoughts, prayers, and cards and flowers.
I wanted to take some time to recount some memories I have of Stephanie. These will be in no particular order and may take more than one or two posts for me to finish. Please feel free to include your own memories in the comment section.
I remember our wedding day. As the doors in the chapel opened I saw Steph and her dad about to walk in. She was so beautiful. So happy. Her face on that day is one of my favorite memories of her. After our vows and a few pictures we rode to the reception in a 1947 convertible her parents had rented for us. This was a lot of fun as we got lots of honks and plenty of smiles. The reception was also fun, we split up for most of it, but then we didn't know how to cut the cake or toast, Stephanie's mom had to correct us.
I remember our first townhouse together. It was essentially a dump. But it was our home, and we enjoyed our time there. I used to make Stephanie go pay the rent because our dish washer was broken, and the property manager would give her a discount because he always forgot to get it fixed. While we lived here we used to have to bum off of our friends to let Ruekie out because I worked in Tulsa and Stephanie would sometimes have school or work all day in Fayetteville. One morning Stephanie woke me up. She told me the rapture was happening, she had heard the trumpet sound. A few seconds later the "trumpet" sounded again as the train made it's way through Siloam Springs. I teased Stephanie about this until we later learned another friend of ours heard and thought the same thing. Then I teased them both. This is a good illustration of Stephanie in last few hours. She was ready to go. Just as ready as she was that early morning at home.
Stephanie's last days and weeks were tough. When we checked into the hospital after Thanksgiving I was very worried about her. It wasn't until the Wednesday after Thanksgiving, when we got the results from the brain CT that I began to have hope again. As Steph recovered from her hypercalcemia, we were hopeful she would be released soon, we would go to Tulsa, and begin some sort of a clinical trial. Stephanie never lost hope. She never lost faith. She knew she was going to get better, she knew she was going to have a life, and she knew she was going to get to conitnue to decorate our house in Tulsa. On Saturday before Steohanie went home the doctor on call for Dr. B came in with Stephanie's Dr. Heels. They spoke to Stephanie about decisions she should make now in the event she coded. They counseled that in the event of intubating Stephanie she would most likely never have the tube removed. When they left we hugged and cried. Stephanie told me she still wanted her miracle. She wasn't supposed to be having this conversation. She didn't know what to do. On Sunday Dr. Heels again came by and talked to Stephanie some more. Steph still didn't want to discuss anything as you can imagine. Later Sunday I asked Stephanie if we could tell our families what the doctors hed told us the past two days. She said yes, but I had to make sure they knew we were still looking for clinical trials. She wanted everyone to know she still had hope, that she was still planning on getting better. I couldn't bring myself to tell anyone that day. There was a consultation set up for Steph on Monday with the pallative care team of doctors that helps patients make end of life decisions. I decided that after Stephanie made a decision as to whether or not get tubed we could tell everyone everything at once. I still regret not telling our families. Although I feel this is what Stephanie wanted at the time, I wish everyone had been able to be more prepared.
On Monday, December 14th, Stephanie woke up to go to her radiation treatment and was having extreme difficulty breathing. She made it down to radiation, Dr. Fields was walking by and took one look at her and sent her back upstairs because she was in such obvious discomfort. This was my first clue something was possibly very wrong. Dr. Fields does not let people miss their treatments. We got back to the room and Steph's 2 favorite daytime nurses were there. They became immeadiately concerned with the issues Steph was having breathing. They called for the lung specialist to come see her ASAP. He ordered a chest x ray prior to showing up. I was able to see it. Her lungs looked terrible. Her left looked solid and her right looked fuzzy (full of fluid). This scared me. When the doctor came in so did the two nurses. Stephanie was sitting up in a chair and realy laboring to breathe. The doctor explained he wanted to send her to ICU. The nurse stepped in and told Stephanie that this meant she would get a tube in her throat to keep her breathing. Stephanie's eyes got wide and she shook her head that she did not want that to happen. Then the nurse asked her if she knew that this meant it was probably the end. Again her eyes got wide and she shook her head again. They decided to take her to the ICU due to her indecision. When we got to the ICU and they moved her to the bed there they connected her to the BIPAP machine, which forced air into her lungs when she took a breath, no matter how shallow. She was continually becoming more distressed. My mom arrived at some point. The nurses upstairs had called Stephanie's parents for me and they were on the way. The pallative care team doctor and nurse came in at this point as well as the critical care doctor. They began talking to me about whether or not they should intubate Steph. This was a decision I did not want to make. Eventually after remembering all the things that had been told us by all the doctors, and also after thinking long and hard about what Stephanie would want I tol them not to intubate her, and to make her as comfortable as possible. This is the hardest thing I have ever done in my 26years of life. They gave her some medicine and she calmed down finally. Steph's parents arrived and later on so did her brother. Eventually, around 5:00pm Stephanie woke up and was lucid. I am so thankful for this brief time that she was awake and able to communicate. Her first response was to try to pull the BIPAP mask off. Later while we were alone I told her that I had made the decision not to intubate her. She gave me a classic Stephanie look that said "Why?" I told her everything that had weighed in my decision, she closed her eyes and nodded. Then she began working on the BIPAP mask again. I told her that the mask was what was helping her breathe more than anything else and she had to leave it on. She continued acting like she wanted it off. I told her to wait, and I texted her mom for them to come back in. When her parents and brother arrived back in the ICU room she took time to tell us all that she loved us. She told me twice. I think she was assuring me I had made the right decision on the intubation. Then she asked for the mask to come off. A nurse came in and removed it slightly, enough for her to tell us "Let me go! Let me go!" but then she realized she really couldn't breathe with the mask off. We put it back on and asked if she still wanted it off. She shook her hand to indicate she was unsure, so we left the mask on overnight. As a testament to the impact that Stephanie had on people, at about midnight the number of people at the hospital had swelled to include 2 more people from Illinois, 3 people from Little Rock, and several more from Luling. You all know who you are, and your presence was much appreciated. On Tuesday December 15th at just after 5:00pm I asked the nurse to remove the BIPAP mask and place Stephanie on just oxygen. She breathed for approximately 15 to 20 minutes and then she went home to heaven. We wept. We wailed. We grieved. We rejoiced. Stephanie lived in excruciating pain for about 2 months before passing. For a week she was unable to catch her breath. For a month she was barely strong enough to make it around the apartment. She lived a short life. She lived a full life. She met our Lord and Sacior with a grace surpassing any I've witnessed. She was my helper. She was my best friend. I am sad she is gone, I am overjoyed she is no longer suffering.
These are some lyrcis from one of my favorite bands, Stavesacre, the song is "Gold and Silver"
Do I see God in all of this? maybe all along
It's just that we're so small, and simply not as strong
Strong like wings of silver, and feathers made of gold
To carry heavy hearts, to cover all our helpless souls
To cover all of us
Under wings of Gold and Silver sometimes we have to hide
For shelter from this bitter winter at least tonight
This is a poem Paula sent me:
THE WEAVER, by Benjamin Malachi Franklin (1882-1965)
My Life is but a weaving
between my Lord and me;
I cannot choose the colors
He worketh steadily.
Oft times He weaveth sorrow
And I, in foolish pride,
Forget He sees the upper,
And I the under side.
Not til the loom is silent
And the shuttles cease to fly,
Shall God unroll the canvas
And explain the reason why.
The dark threads are as needful
In the Weaver's skillful hand,
As the threads of gold and silver
In the pattern He has planned.
He knows, He loves, He cares,
Nothing this truth can dim.
He gives His very best to those
Who leave the choice with Him.
Grace and Peace
Home Sweet Home! by The Pioneer Woman
4 years ago
