Roscoe's Legacy

Roscoe has exited this life and we are powerless to undo that change. Alisha and I are left with the choice of what to do in this situation. I read all of the blog comments, facebook posts, and email messages that I receive about how Roscoe has impacted people's lives. As a parent you never want to lose a child, but if you do it really softens the blow to know that there was meaning behind the loss. Roscoe didn't live long (9.5 months) and wasn't great in stature (23.5" tall if he were standing), but he's had a great impact on people's faith. His prayer map is filled with spiritual supporters around the world and the blog post about his last day of life has been viewed over 15,000 times. As Alisha and I weep, there are many around the world weeping with us (Romans 12:15).

NOTE: If you haven't yet taken the time, please add yourself to his prayer map. It is a great encouragement to us and we plan to print it out for his baby book. Over 750 markers have been added so far.

I hope that Roscoe has a continuing spiritual impact upon the world. Many people have said that by hearing Roscoe's story unfold, it taught them to pray a little more earnestly and believe a little more deeply. I hope that in this age of minuscule digital attention spans, Roscoe's impact does not fade quickly. If you take away anything from Roscoe's story please let it be the following:

1. Never let an opportunity pass
   There are constant opportunities that float by without being seized. I thought that I'd lost all opportunities to say goodbye to Roscoe on June 14th when he was facing his end. God granted us another 38 precious days with Roscoe. Some were tumultuous and some were sublime, but in all of them we affirmed our love for Roscoe and kissed and hugged him as much as we were able. Never let the opportunity to show love to your children pass by. You never know what tomorrow may bring.
    
2. Pray with meaning
   Roscoe gave adults and children a specific reason to pray. We heard from people all over the country that praying for Roscoe was something that united the church with a common petition. Now that he's gone, there are still other reasons to pray with fervor. Some reasons make us plead with God. Some reasons make us express our thankfulness. All of those reasons give us a purpose in speaking frequently, plainly, and honestly with God.
    
3. Find good in every situation
   There were lots of things wrong in Roscoe's life. He was plagued with physical problems, tormented with needle pokes, struggled to breathe his entire life, and never got to experience a life without cords attached. Alisha and I were powerless to change the situation; we could only change our perception of it. Trying to find appreciation and enjoyment in small things kept us positive through murky waters. Roscoe continually found the strength to smile from ear-to-ear in dark circumstances. If you find yourself frustrated or let down by life, please learn from Roscoe's story. Change your focus to the good things you do have, rather than focusing on what's wrong or lacking. Roscoe didn't know what he lacked, he only knew what he had and what made him happy.
    
4. Appreciate the little things
   Roscoe lived a very atypical life, so Alisha and I looked forward to many small things that often go unappreciated. We started to see great pleasure in being able to hold your baby without permission or in a room alone, seeing your child's face with nothing stuck to it, taking your infant on a walk outside, holding your baby without any wires attached, and being able to sit in a noise-free environment while your baby slept. Look for small blessings like these and enjoy them if they are granted to you.

Each time a parent hugs their child just a second longer, or tells them an extra time how much they love them, or prays with words more heartfelt, or finds a positive way to look at a negative situation, or appreciates a small experience with their child ... we feel that Roscoe's legacy will continue. Please give Roscoe's life meaning by letting his short life impact your own.

If you feel so inclined, please share how Roscoe has impacted you in the comments section below.

NOTE: We don't plan to have a funeral or memorial service for Roscoe. Very few of those who cared about him actually got to meet him in person (even some of his closest relatives didn't get the opportunity). I feel lucky that I got to spend just about every day of the past 9.5 months with such a special boy. We felt it would be most appropriate for the communal grieving process to happen online through this blog, since that's how most of you came to know and love him.

Our Little Clown

The last pictures we took of Roscoe were ones where we put a little clown nose on him. It was a nose that my mother bought us to entertain him with, but we thought it would be cute to put it onto him instead. It almost made his trach ties look like a clown's collar and bow tie:

First reaction to something on his nose, scrunching up his face

Wondering when we will take the nose off

Looking at us, wondering what is so funny

Tribute Video

This montage of snapshots from Roscoe's life was created by one of the blog readers within a few hours of his passing. For those who hadn't seen it on facebook yet, I wanted to post it here as well:

Why I Hate Tuesdays

Over the past year, I have really grown to hate Tuesdays. Many of Roscoe's surgeries and procedures happened to fall on Tuesdays. Also we learned about his fatal brain hemorrhage on a Tuesday, but those aren't the reasons why I hate Tuesdays. The reason I hate Tuesdays is because of fasting.

Our original 20-week ultrasound appointment was on August 5th, 2013. Since we learned of possible problems in that appointment, I have fasted every Tuesday* since by avoiding any form of food or non-water drink all day (at least 24 hours). I prayed and pleaded with God to give Roscoe any energy I would have received that day from food, to extend his life just that much longer. All told, I fasted for 53 or 54 days during this past year. That translates to over 100,000 calories or 28 pounds of fat. A few weeks I fasted twice if there was a big procedure, and once I fasted 3 days. One Friday I fasted for Phin. As every Tuesday drew nearer, I started to dread it. As each Tuesday night drew to a close, I felt relief that it wouldn't come for another six days.

My experience with fasting improved my ability to control myself in other areas, but my main focus was to show God how earnestly I wanted Roscoe to be saved. He knew how much I loved Roscoe, but maybe he just wanted me to prove it to myself. I don't know if my fasting had any impact on Roscoe's outcome, but I made a promise to God that as long as he kept Roscoe alive I'd continue fasting every Tuesday as long as he was in the hospital. When I started fasting in August, I thought I'd be done with it by December and Roscoe would come home, but God had other things in mind. The fasting stretched out through January, February, March, and then after April I started realizing I didn't know how long it would last.

I tried to keep my mind focused every Tuesday on an attitude of earnestness, dedication, and prayer. Sometimes my attitude wrongly became "If you do this for me, I'll keep fasting" which was really me attempting to manipulate God into saving my son. After fasting so much, I had to actively remind myself why I was doing it and keep the focus on Roscoe and prayer. I don't bring all of this up to draw attention to myself (Matthew 6:16-18). Mainly I want to give everyone a complete picture of how hard we tried to save Roscoe and perhaps why God let him live so long beyond September 17th, 2013. We did everything we could and we have no regrets about what else we could have done. No stone was left unturned.

Next Tuesday, I won't be fasting. Roscoe's last day of life was my last day fasting. It will be a strange feeling to eat normally, but it will be an even stranger feeling to not pray for my son's health or visit him in the hospital.

*Full disclosure: Some weeks we had a work event where they served food, so I'd fast on Mondays those weeks. Just in case anyone from work reads this and thinks I was bending the truth. :)

Family Portrait

This family portrait was taken on Sunday, along with some others that we previously posted. The nurse who was watching Roscoe talked to us about her fondness for photography, so we asked if she'd mind taking our family portrait. We hadn't gotten a portrait together in several months:

Quite a bit has changed since our first family portrait shown below, yet many things still seemed the same:

Finally we got one with everyone smiling and looking at the camera (mostly):

Though it saddens us that we will no longer be able to take new pictures or share new developments about Roscoe, we were thankful that God gave us the time and opportunity to share another photo together. It was a happy, stable day and that was good to look back on. We still are sorting through the remaining pictures and videos that we'll put out over the next few days.

Dreams of a Father

Part of living as a parent means looking back at the good and bad that have happened. Part of being a dad is training and enjoying kids while they are with us. Still another portion of fatherhood is looking forward in anticipation to the things that will come. There are many things that I was looking forward to with Roscoe. Some of them would have happened the first day that he came home healthy, and some of them wouldn't have happened for many years.

I was looking forward to seeing Roscoe's face the first time he heard acappella singing at church. He listened to music from his music box and Alisha's iPod, but there is nothing like the sound of real voices making sound. I don't know whether he would have been shocked into crying or whether he will just gaze in amazement, but I was anticipating the day when I can see his reaction to that first sound. His face was so expressive and I'm sure it would have been wonderful to see when he first heard real music.

I was also looking forward to Roscoe being able to smell food. His nose worked just fine, but since no food is allowed in the ICU at Kaiser or UCSF he never really smelled the variety of food that we eat each day. I tried holding a peach up to his nose, but such a faint smell was most likely drowned out by the hospital smells and air being pushed into his trach. I wanted to see how he would have reacted to smelling food being prepared and cooked in the kitchen at home, how his nose would have led him through the transitioning smells that occur during a simple dinner preparation.

Alisha and I used to go on walks fairly often on the walkways around our house, prior to September 2013. Another thing I was anticipating taking Roscoe on walks along those same pathways. There are birds, rabbits, trees, fields, and a pond that Roscoe would have experienced along that path. The pathways are something of a metaphor for our lives. The route we commonly walk is the route along which I proposed to Alisha with an oversized ring box and ring that I'd made out of a hula hoop:

To bring Roscoe along that path would be a symbol of the next major step in our lives being taken. I wish we could have taken that step with him in our arms.

Peering into the near future I was awaiting the day when Roscoe would have been able to play catch with a ball, play with our dog, ride his tricycle, and toddle around the house. Looking further into the future I longed to see how much he'd enjoy developing a network of friends, who he chose for a wife, and what he picked as a career. A prayer for Roscoe to be healed was a prayer for a father's dreams to be realized. I thank you for those prayers. God heard them and now we have his answer.

How it Feels

Many people have offered words of support and condolence, saying that they don't know what we are going through. I thought I might try to describe a little of what we are feeling, for empathy's sake.

The whole situation is still very surreal for us. We have been conditioned since October 6th, 2013 to spend each day and night at the hospital where Roscoe is staying nearby. Since that day, there hasn't been a single day that passed when Alisha or I didn't go spend time with him. As he got more interactive and matured, Alisha would spend 8-10 hours each day at the hospital and I'd spend 4-5 hours after work. Most recently at UCSF, we spent an average of 10 hours a day with him at the hospital. After this quick series of events, now Roscoe is no longer with us and we won't visit a hospital today for the first time in almost a year.

Coming back has been a bit of a shock. For over a month we've lived in a foreign location, in weather that felt like late fall, around people we don't know, and at a hospital we're not familiar with. Within 24 hours, that has all changed. We're now back at home, we don't have a son, we don't visit the hospital, and the weather is hot. It feels like we've been living in an alternate universe where we had a son in the hospital for the past year, and now we've returned to "real" life in mid 2013. It will take us time to come to terms with everything that has happened.

In our conversations with each other, Alisha and I alternate between talking about mundane things like what to eat for dinner and reliving special memories we had with Roscoe. We might be in the middle of a conversation and one of us will instantly break down saying something about our little boy. Often we speak of him with a smile. Sometimes the words don't make it out of our mouths because they are blocked by hurt and blurred by tears.

We still feel like this isn't real. Roscoe was so resilient that each time a problem occurred there was an alternate path we took toward stability. Alisha and I keep waiting to get a phone call that tells us to come back to the hospital, that they've come up with a new plan, and things may possibly work out.

Alisha and I watched Roscoe "die" many times before it actually happened. We were prepared for him to be stillborn or not survive his birth. Another time we were in the room when his lung collapsed. The Saturday after his trach surgery we were convinced he wouldn't make it. This past Saturday he had several very scary drops that mirrored these prior events. When he finally passed earlier this morning, it eerily felt like a road we'd walked down many times before, only this time there was no recovery.

We feel like we are returning to a life we once had, with memories of a life nearly forgotten. We are having to re-learn what it feels like to sit at home at night, to not be scared whether our son can breathe, and to not have to constantly flinch when we hear a beeping sound that sounds like a monitor reading a bad value. We hope that by describing this, we can share in the mutual feeling of shock that you are all feeling, and that we can help you better understand our road so that you can walk it with us.