Jacob's viewing, funeral and memorial services

I don't think there is any way to adequately thank you for the amazing outpouring of love and support. It has been incredible and I am so humbled to be the recipient of such love. Thank you.

Funeral services for Jake will be held on Saturday, April 30, 2016 at 11:00 am at the LDS Paradise Valley Stake Center, 3601 East Shea Boulevard, Phoenix, AZ.

Friends may visit with the family Friday evening, April 29, from 6:00-8:00 pm at the same address, or Saturday morning from 10:00-10:45 am prior to the funeral services. 

We welcome all of our friends and family members and their families to come and visit and remember and celebrate Jake's life with us. All are welcome, especially your sweet children who have prayed so faithfully on his behalf.

A memorial service will be held on Tuesday, May 3, 2016 at 11:00 am at the Heather Ridge Stake Center, 450 East 2000 North, Orem, UT. 

Friends may visit with the family from 10:00 to 10:45 am prior to the service.  Interment will be in the Eastlawn Memorial Hills Cemetery, 4800 N. 650 East, Provo, UT.

In lieu of flowers you may donate to the Robertson Children’s Fund.

In Arizona, funeral arrangements are under the direction of Regency Mortuary, 9850 W. Thunderbird Blvd, Sun City, AZ 623-875-7500.

In Utah, funeral arrangements are under the direction of Serenity Funeral Home, 12278 S. Lone Peak Parkway, Draper, UT 801-225-2801.

Donations

Donations can be made to a fund to support Jacob's children by clicking here:

If you would like some additional ways to donate, please see THIS POST for more information.

April 23, 2016

I don't even know how to begin.

Jake died this morning at 9:29 am.

I still can't believe it. All day I just keep thinking over and over and over Jake is dead. Jake is dead.

And part of me is dead too.

It was not a peaceful passing. He was in great distress and breathing a mile a minute.

All week he had been declining. But it was peaceful. He was asleep for most of Monday, Tuesday and Wednesday. He would drink some water each day but ate nothing.

Thursday he was very alert. He was awake and smiling as we talked to him. He was able to answer my questions with a yes or a no and spent some good time with our children. He was able to tell me that he was sorrowing and did not want to leave us.

After all of that talking and heaviness, when we were alone Thursday evening I was lying on the bed by him and had the idea come to mind to ask him if he wanted to watch tv. He relievedly nodded yes and so we watched a tv show together. It was a gift. It felt so normal, and although he may not have been engaged the whole time we just sat together and held hands and let all of the heaviness dissipate around us.

We prayed and said I love you before going to bed and he slept peacefully Thursday night.

He woke up on Friday and near noon I started to feel his left arm shaking. I was worried it was a small seizure so I gave him more medication. After a time he started to have some tremor like movements in both arms and legs. It would last for a few seconds at a time but was disconcerting to him. I asked him if he could feel it happening and he said yes.

As the day progressed he started to get very warm and sweaty. His skin was hot to the touch. The tremors continued and he wasn't able to sleep. He was still very aware and able to answer questions and squeeze our hands. I didn't know but what he was squeezing them because he was in pain, he was squeezing so hard.

I asked him if he was hurting and he said yes. He suffered through it for most of the day. He was not able to share his experience, but I could feel that it was not easy for him. He was very heavy. It was a definite change from normal and I could sense the distinct difference.

I got the kids to bed and then his Dad and brother Matt helped move his hospital bed right next to the side of our bed so that I could be close to him during the night.

He seemed to settle down and be less agitated by the time we went to bed around 10:30. I read him Jacob 7 and a chapter on the resurrection from a book by Dallin H. Oaks. I have been reading the Book of Mormon out loud to him since we came home from the hospital with the bad news in March. It was comforting to read those words and Jacob seemed to be much more at peace.

He slept well until just before 3:00 am. I woke up to hear his breathing very labored. He was rapidly inhaling and exhaling. I gave him some medication and his breath remained steady but quick. I think I fell back asleep for an hour or two.

Tommy woke up just before 6:00 and I got him up and then Jacob's parents arrived. They took over Tommy's care so I could go back to sleep. Jacob was still breathing rapidly, but unchanged and I slept another hour.

I woke up close to 8:00 and found him still the same. But just a few minutes later he seemed to be choking. I quickly raised him more to a sitting position and tried to help alleviate his pain. He found his breath and I waited. Some minutes later he seemed to gag again and was in great distress so I went to his parents for help.

They had loaded the kids in the car for Ellie's soccer game. I was grateful the kids were loaded because I did not feel like they should see Jacob like this. His dad came into the room with me and his mom took the kids to the game.

The next hour, from 8:30-9:30 was an hour I will never forget.  I find it too difficult to share the details, other than to say that his body and his spirit fought to live until the last possible second. His heart was so strong with the good care he has taken of his body, and I knew that this spirit still yearned to stay with me and our kids.

I was able to be right by his side and hold his hand. I had prayed for weeks that I could be there at the end. That I could just hold his hand. God heard and answered my prayer.

I spoke to Jake and had time to tell him again all of the things in my heart. More than anything else I tried to communicate my love for him. I needed him to know how much I love him throughout his entire being. I also assured him that I knew how much he loved me. That he could leave knowing that I felt of his love for me in my entire being.

Jacob's dad was in the room and said that he seemed to calm down as I lay by him and spoke in his ear. I hope I was able to bring him some comfort as he has comforted me a thousand times over.

Finally, he was unable to draw in any more breath and his heart stopped beating.  He exhaled the air in his lungs a few times and then was still.

I laid by his side for some time and cried and cried and cried. Then his Dad held me and I wept some more.

The kids came home a half hour later and I told them the news. The girls all cried and spent the next hour just lying by Jake, holding his hands, kissing his face, and letting us hold them in turn. Sweet Tommy said he wasn't going to cry but still kissed Jake and got his doctors kit to give him a checkup. We kept the room dark and it was a blessing so they could be near him without fully seeing the change.

There was such a comforting peace in the room.

His sweet mom, his brother Matt and his wife Jessica were able to see him and say goodbye.

And then the mortician came and his physical body was gone.

It is still surreal. It is a day I have imagined since January 2014, but it was so different than I thought it would be. Nothing prepares you for it and you just hold on hoping you can make it through.

I love Jake. I will always love him. He is part of me and I am part of him and our children are our complete combination. God was with us through this day. I had no great spiritual manifestations, but felt a constant, encompassing, calming peace that only the Spirit can bring. I pray that peace will continue as we now face the days ahead.

Currently

I hope it is clear that the last few posts are catching up from events that occurred months ago.

I have had more time to sit this week than I've had in the last long while and wanted to get those birthdays and work experience documented. I am grateful to have this record of our family.

Jacob has now been in bed for an entire week. Apart from helping him to the shower last Saturday, April 9 he has not left the bed. His body is weakening every day. Over the weekend he was awake for many hours of the day, but then on Monday the 11th seemed to be struggling. The nurse called in an antibiotic for him since me and two of the kids had strep throat and that seemed to help him feel better on Tuesday and Wednesday. Thursday the 14th he was quite alert during the afternoon and evening hours and got to listen to each child tell him about their day and respond with his amazing smiles and eyes filled with love. He can hardly speak, but is still able to say "I love you."

Jacob's set up in our room

Tommy loves to show Jake the heart poster Lauren made him every day.

Thursday night he seemed unsettled and said he was not tired. I got him some pain medication and we listened to General Conference until he was able to fall asleep. He slept all Thursday night Friday day and Friday night. It was hard for him to open his eyes and he did not want anything to eat and only sips of water to drink. Today, Saturday the 16th, he was more awake in the afternoon and wanted to drink some cold smoothie. He has such a fighting spirit. His will to live is unrelenting.

For us, though, it is so sad to see him diminishing. I lay by him every night and am grateful that I can still hold his hand and feel his fingers squeeze mine as I do. I love him. I just love him. I love him so much it hurts.

My view of Jake from our rocking chair at his bedside

My perch

I originally titled this blog "Enjoy the Ride" to reflect my idealistic outlook on life. And also because Jacob and his friends on our semester in DC nicknamed me the J-train. I always assumed that if you did your best things would work out and life would be wonderful. Oh silly, inexperienced, naive me. I had no clue.

In fact, when I initially made the roller coaster header you see every time you visit, I wanted to convey the concept of a fun ride that is enjoyable and exciting. Because roller coasters are fun, right? Little did I know what a real roller coaster ride our life had in store for us. A white knuckle whirling twirling pit of despair fear inducing gut wrenching kind of ride. Not so fun or exciting.

Jacob's parents sit by his side when I need to help wit the kids.  His dad being a great sport and wearing a crown Ada made him. Both of his parents are so good and I'm very grateful they are here.

I've always loved this quote from newspaper columnist Jenkin Lloyd Jones that President Gordon B. Hinckley recited in a BYU devotional on September 25, 1973.

"Life is like an old-time rail journey- delays, sidetracks, smoke, dust, cinders and jolts, interspersed only occasionally by beautiful vistas and thrilling bursts of speed. The trick is to thank the Lord for letting you have the ride."

He is right. Most of life is full of that inconvenient, unfair, difficult, trying kind of stuff. Only occasionally do we have a beautiful vista or a thrilling burst of speed. But throughout it all I am learning that the trick is also true- when you thank the Lord for letting you have the ride you can still have joy along the way.

With Ellie

With Ada

With Thomas

With Lauren

Gratitude is something Jacob has taught me over and over. I still kneel at his bedside every night so we can pray together. A few times earlier this week he said the prayer. He can hardly speak, but when he prays he says "I'm grateful for..." again and again and again. He, the man with the GBM diminishing day by day in a hospital bed, still has a grateful heart.

He is incredible to me.

Lauren is 10!

On February 10 our Lauren turned 10 years old. Her golden birthday! I always told the kids that their golden birthday would be a special one and by the end of the day Lauren said it was her favorite birthday ever.

We started out early in the morning. I had talked to her friend's moms about kidnapping her and taking her out to breakfast before school. So I left the house at 6:15 am and picked up her bright eyed friends. Lauren was awake, but still in bed when we came bursting into the room. She was so surprised and happy and excited all at the same time. One of her friends had made her a birthday shirt saying "My friends love me" and all of the other girls a shirt saying "We love our friend" and they wore them the whole day. 

We all loaded up in our two cars and headed out to breakfast. Lauren LOVES breakfast food and Village Inn is one of her favorite places. The girls were so polite and well mannered and we all went around the table and said three things we like about Lauren. We finished up just in time to drop everyone at school 5 minutes before the bell rang. 

The girls then had their school day, but were ready for round two right after. My sister Claire was in town and able to lend a hand with the driving since Jake was not able to drive. We picked up the same group of girls, came home, opened presents and had sang the happy birthday song over Krispy Kreme donuts, her favorite. 

Then we all got ready to walk to the mall. For her "party" Lauren requested going to the mall with her friends to play. We started at the giant bubble place, where the kids got in these giant bubbles and rolled around for a half hour. They had a great time crashing into each other and were completely sweaty when it was over. Then we went to the other end of the mall and did the animal riders. They are these fun animal scooters that you can steer and drive all around the mall courtyard. We got to ride those things forever and the girls did every kind of race imaginable. Even Tommy and my nephew Will got a chance to ride on some darling animals just their size. 

After our rides we walked to the food court and bought Panda Express for dinner- orange chicken and chow mein. The kids had worked up an appetite. Then just before 7:00 pm we walked home and found their mothers waiting to pick them up after the long day. These girls were together from sunup to sundown and I never heard one unkind word. Lauren really has such wonderful friends and we are so glad they could spend the day with us celebrating her. 

Before bed we opened up her family presents and danced to Stevie's Happy Birthday song. It was a full and magical day for our sweet double digit child. Lauren has so many good qualities. She is bright, funny, inquisitive, responsible, and has a calming presence like her Dad. She is a wonderful example to her siblings and loves being creative. She is a great writer and crafter and enjoys organizing like her Mom. Lauren has a very sensitive spiritual nature and feels a great closeness to her Father in Heaven. We are so grateful for Lauren and love her so much.

The Office: cleaning up and closing out

I have wanted to write for some time about Jake's work.

He was an attorney for Perkins Coie (formerly Brown and Bain) since we arrived in Phoenix in 2006. I have always been grateful for his law firm and for the people he worked with, but have come to have such an increased appreciation for his employment, his coworkers, and his treasured work experiences since the beginning of his disease.

I wrote in my journal the day after we cleaned out his office and will include some excerpts here. My journal reads much like this blog and is much like how I speak. I share what I think and how I feel and am grateful that I recorded my thoughts on that day.  Jake actually stopped working and went on long term disability in February of 2015, but was able to keep his office until December of that year. We arranged care for the kids with our amazing babysitter Christine and spent December 7 together in his office.

And I wrote....

"Yesterday I went with Jake to clean out his office. It was a hard thing to do. Like you see in the movies, we took in some boxes and loaded them out with all of his personal effects inside. I don't know if I went with the best attitude, but after going through everything I came away so grateful for this good man who put in so much time and effort at his work to be able to provide for our family. He singlehandedly took care of us for a decade and as we went through his drawers, binders and folders I could get a sense of the commitment he made to provide for me and our children. That is a true indicator of a man- a person who will hold to his commitments to care for those he loves and I am so grateful to know that Jake is that kind of man.

We got to his office at noon and went to the famed 21st floor holiday lunch. Its been a tradition for years and only the attorneys and staff who work on the 21st floor even get to go. We walked into the room and were so warmly greeted by everyone there. Many people gave us hugs, inquired about Jake's health, and said they were keeping up on the blog.

We then went into his office and started going through it. I would open drawers and take things out and then have him decide on what to keep or toss accordingly. He had some toothpaste and floss from after dentist visits, nuts and sardines, stamps and breath mints and pictures of our family around his desk. He had a collection of Arizona Attorney magazines as well as handouts from CLE's over the years. He had about 30+ legal pads- he would write on the first few pages of each one in connection with each new brief or case and throughout the office that made for a good supply. He had his office trophies- trinkets handed out from his various cases that were meaningful mementos to him. He had his framed diplomas on the wall along with his AZ bar certificate.

As we sat and went through all of the papers, people would pop in to visit. They'd say they heard we were there and wanted to say hi. It was so nice to see so many of the people Jake loves and has worked with for so long. I always knew he worked with wonderful people. Not just qualified attorneys and staff, but really honest, loyal, good to the core people. As different individuals came in throughout the day it was confirmed to me again the caliber of people that Jake got to associate with in his work days. I couldn't have asked for anything more than to know that he was surrounded by such wonderful people each day at work and that reality was obvious to me today.

A secretary from the lunch brought us leftover cupcakes to give to the kids along with giving me the beautiful floral centerpiece they had at the luncheon. Each of those acts of kindness softened what was surely a sad experience for Jacob and me. Even as we were faced with the hard fact of closing up his office and admitting his work was over God was there, right in our midst, sending love, sending help, sending peace. I could see His hand through these good people and felt so much that it was His way of softening the blow.

We finished up at about 4:30 and after some teasing Howard helped Jake carry his boxes down to the car. Even remembering it brings tears to my eyes as I know he has such a soft spot for Jake. We drove home with our own reflections and were both on the verge of tears the whole way. We got the kids, ate dinner and did bedtime and then had time to talk and cry together."

I don't know the full measure of what it means for a man to be done with his career, but I know it wasn't easy for Jake. Ever since he was a teenager he wanted to be a lawyer. He set his sights on a legal career early and took the steps and paid the price necessary to achieve it. And he is a fabulous lawyer. He loves research. He loves writing. He loves finding a nugget of gold in a mound of documents and using it to craft an argument. He loved his work and found a lot of fulfillment in his career. I am so grateful for my lawyer husband and for how his hard work always has, and will continue, to provide for our family.

Ellie's baptism

Ellie was baptized a member of the Church of Jesus Christ of Latter-day Saints on December 5, 2015. It was such a special day for our family and the highlight of the day for Ellie was that her dad got to baptize her and give her the gift of the Holy Ghost. 

She was the only child from our congregation being baptized that day so our family was able to participate in all parts of the program. Ellie's aunt and grandpa said the prayers, her grandmothers spoke- one on baptism and one on the Holy Ghost, and her uncle played the piano and her grandpa led the music. Ellie played a Primary song on the piano and then our dear friend Mariah sang the beautiful closing song "What Heaven sees in you." 

It was a beautiful program and Jake and I were able to sit with Ellie on the front row and take it all in. We are so grateful for all of our family members who made the trip to be there and for our friends who were in attendance. It was a beautiful sight to see our sweet girl surrounded by so much love. 

I am so grateful for ordinances- sacred acts performed by the authority of the priesthood. These acts enable us to make covenants with God which bind us to Him in a way that nothing else does. I am so grateful that Lauren and Ellie have been baptized that that they have that additional fortification to help them through this storm. I await the day when Ada and Tommy will have the same opportunity. Our covenants, made at baptism and in the temple, mean everything to me and Jacob and are the act through which our family can be together forever. 

Arrived at the church ready to change.

Ellie and Dad in their baptism jumpsuits

Waiting for the program to start

Ellie after the baptism and confirmation

Mom and Dad and Ellie

Family pic on baptism day

Romney family members

Ellie with my parents

Robertson family members

Ellie with Jake's parents

Our beautiful Ellie girl

At the Phoenix temple

With her Daddy

With her mom

Ellie is 8!

Ellie had a great and happy birthday back in December. She turned 8, which in our church is the year that a child can choose to be baptized, and she was thrilled to have the opportunity. More on that in the post to follow. 

For her birthday, we opened a great slew of presents. Ellie had a few things she wanted and we tried our best to make her dreams come true. She got a new alarm clock, a magic 8 ball, a lego set and her ears pierced. We decided that 8 is the age you can get pierced ears in our family and Ellie has been very responsible to care for her ears and enjoyed changing out her earrings. 

She went to school and had a fun day and Tommy and I surprised her at lunch.  She played in the afternoon and then came time to eat her requested dinner- ribs. She is a girl of grown up tastes. We sang happy birthday to her and ate leftover cake from her party. 

Two days earlier, on a half day off of school Ellie had an incredible birthday party at Pump it Up. It was amazing! So many of her friends were able to come and they ran and played for two hours on those fun blow up toys. Jake and I especially liked this party as the only work required of us was to show up with a cake. Check. 

It was fun to see all of Ellie's friends give her their gifts and their excited faces as she opened them. She was one lucky girl and still plays with presents from her birthday party today. Jake was feeling good that week and Ellie loved having him jump and play with her and her friends. 

Ellie is such a light in our family. She has a lot of spunk and personality and is very driven. She is also very aware of the needs of those around her and has an innate desire to serve others. She is Tommy's other mother and so loving and fun with him. She is inquisitive and curious and always up for playing soccer. She has great faith in God and loves to go to church and learn from the scripture stories. 

We all sure love our Ellie B.