Tommy is 2!

Tommy is 2. If you ask him, he'll tell you that himself. His birthday was back in November and it was a fabulous day. He had just seen Ada celebrate her birthday a few weeks before, and knew that presents, cake, and some fun were in store. 

We started with the morning present opening and I think he got to open a few presents on his own. If he had any trouble though, three helpers were eager to lend a hand. He got a balance bike, iron man, rubber playground ball and helmet. 

We got the girls off to school and then Daddy and I took him on some errands. His favorite thing was when I got in the second child seat with him at the grocery store and Jake pushed us both around.

He was a good sport and let me take some pics of him in his sporty new clothes.

Then we came in and had his cake and sang him happy birthday before heading to dinner at the mall. 

When we asked him what he wanted to do for his birthday, he said "ride the carousel." So we took the whole family to the mall, ate dinner at the food court and rode the carousel...twice. Then with 20 $1dollar bills in our pocket we walked through the halls of the mall, letting him go on EVERY ride.

It was a toddlers dream come true. He rode on rides for an hour and would have kept going all night. The girls had fun getting on and off of rides with him and then we ended the night riding the train through the mall as a family.

Thomas is a gift from heaven. He has a very calm disposition, much like his Dad, and is almost always pleasant and happy. He is engaging and fun and full of love. All of us gravitate to him and are so grateful that he came to complete our family.

But me ye have not always

We are so grateful for all of you who continue to reach out to us. I have read Jacob every blog comment, email, and letter that we've received and they are a great encouragement and lift to us both. Today our yard was heart attacked with notes of love, encouragement and support from our dear church family. It is amazing to see how Heavenly Father shows His love to us through the unnumbered kindnesses of others.

Thank you so very much.

We are so grateful for the people who continue to donate to the Robertson Children's Fund. Those financial gestures of love and support mean a great deal to both me and Jake. I will thank you individually in the future, but wanted to say how much we appreciate that support in behalf of our children.

We are so grateful for our kids. They are such a tremendous source of hope and strength for us and every day we relish being with them, talking to them and feeling of their love. I can see Jake in each of them and am grateful for how their faith is being strengthened through this experience. We freely talk about how their dad is dying and although their hearts are sad they have shown such a capacity to love, to minister and to enjoy their dad while he is still here.

I have been learning a lot about dying. It is my first time seeing the process up close and personal. A friend of mine once mentioned how our culture is sanitized from death and I can see what she means. Most of us have little experience around a dying person, or our loved ones are in the hospital so we cannot have normal contact with them through their final days.

In that vein, we are grateful for hospice. From what I have gathered over the last few weeks, hospice exists to help an individual die in the comfort of their home with the medical attention they need coming to them. For two years we have had to arrange our lives and leave our home to attend medical appointments at the hospital, to get prescriptions filled, and to wait for normal office hours to have some of our questions answered.

Hospice takes away all of those needs. The nurses and doctors come to you. They send medications to your door. They bring in any needed medical equipment to your house. They are on call 24/7 for any questions or concerns and can send a nurse to your home at any time of day or night. It is a welcome change and after spending so much of our time at appointments and a relief to know we have help always available to us.

I've always thought that there are many parallels to the beginning and end of life. When a baby is born they require almost constant care to have their needs met. They cannot eat, get dressed, use the bathroom, get clean, or even move independently but are dependent on their mother and father to see to those needs. The same is true when someone is dying. Usually, dying happens at the end of life when it is more common that individuals face a decline in their abilities. For Jake it is happening when he is 36 (on the brink of 37) years old.

It is getting increasingly harder for him to take care of his personal needs. His ability to move, shower, use the bathroom, eat, and get dressed are deteriorating little by little each day. It is a terribly difficult burden for him. Jake has always been so very independent. He has always seen to his own physical needs and even with his disease has had the ability to take care of those needs for all but the last month. I am grateful for that. With four young children, and especially a baby, it would have been almost impossible for me to physically care for both Tommy and Jacob at the beginning of his illness.

But now it is my opportunity to care for Jacob. I don't think I can adequately describe what a great privilege it is to love my husband in this new, personal and tangible way. It is not something I anticipated when I thought about his death. Initially, thinking about him dying filled me with fear and inadequacy. I was not able to know at that point that caring for him physically would continue to build an unbreakable bond of love between us. I think it is a bond shared more often by couples late in their lives that we are humbled to experience now while we are young.

When our families were here I tried to explain these thoughts to them. I mentioned reading in both Matthew 26:6-13 and Mark 14: 3-9 in the last few weeks about a woman (Mary) who came to anoint the Savior with an alabaster box of very precious ointment. The disciples were troubled when they saw it and asked Him, "To what purpose is this waste? For this ointment might have been sold for much, and given to the poor." When Jesus understood their saying he said unto them, "Why trouble ye the woman? For she hath wrought a good work upon me. For ye have the poor always with you; but me ye have not always. For in that she hath poured this ointment on my body, she did it for my burial."

Each time I read this account I was struck with the understanding that this is my opportunity. Jacob is here with me, and now is my opportunity to minister to him. I cannot adequately thank his parents or my mother who have been here to substitute for me in the day to day care of our home and children. Their service has made all of the difference to our family and allowed me an unparalleled ability to care for my dear husband. And Jacob has so graciously and gratefully received my help and in turn blessed my life through the ways he continues to love and minister to me.

It is a sacred experience for us both. It is a gift of grace that makes this bitter experience so inexpressibly sweet, sacred and spiritual.

So although we woke this Easter Sunday knowing that Jacob's physical body is dying, the hope, reality, and meaning of the risen Christ make it possible to bear.

Because He lives, so will Jacob.

Hallelujah.

So much peace

I just wanted to write a few paragraphs about how the last two weeks have gone.

We left the hospital still pretty shaken up about the spread of Jacob's cancer and with the possible timeline of him having only a month or two to live.

The first few days we spent getting things in order and reviewing our previously made plans for this exact scenario. We had a few meetings with people from hospice and were able to get a lot of information from them. We spent most of those evenings talking and crying with the girls as they continued to express their fears and feelings about Jake dying.

While it was not a fun few days, it was also a very special time that helped us draw even closer as a family as we shared and talked about things together. Jacob's dad came down from Utah and was here to help his mom take care of the children. We talked about how my primary care will now be directed to Jacob and their primary care will be for our four children.

The next week (March 7-11), things returned to a more regular schedule. Jake and I slept in most of those days, his parents got the kids off to school, and we were able to sit and eat dinner together. The initial shock started to wear off as we all got closer to accepting this new outcome and adapting our minds to it. The girls had a good school week and were able to practice the piano, do homework and play with friends. It is indescribable how much comfort those normal routines and practices bring at times like this.

I think we initially assumed Jake's condition would rapidly deteriorate over a matter of weeks, but that hasn't happened yet. He seems to be physically where he was two weeks ago, with small declines each day. It is very difficult for him to say the things he wants to say. He can answer yes and no and can say simple words, but he has lost most of his ability to find the exact words he wants to say. For example, the other day he wanted a glass of water and it took almost 10 minutes for his brother and I to figure out what he wanted. He started out saying it was something he had every day, it went in his mouth, he pantomimed the shape of a cup, and finally we were able to deduce that it was water. He told me it is becoming harder to understand the things that he reads or listens to as well. His right arm hangs limp at his side and he no longer has any control of its movement. He can still walk, with me on his left side holding his arm and hand, but his right foot drags as he takes steps. I help him shower and dress and cut his food, but he is still able to feed himself with his left hand and has a full appetite.

We then had a wonderful weekend from the 11-14 of March with Jacob's family. I will add some pictures later, but each of his six siblings were able to come with their spouses and spend those precious days with him and our family. A lovely family in our ward gave us the use of their spacious home and it was a blessing to be able to accommodate all 19 individuals who were gathered together.

We spent the last two days catching up on things around home and me taking the kids to some dental/orthodontic/medical appointments they had. Jake slept a lot on Tuesday, probably recuperating from the weekend, but was able to spend the afternoon and evening with us. He is still so engaged in our life. Every day he reminds me of something I've forgotten in our schedule, of something a child needs or that we were planning to do. I am grateful that he is still participating in our lives.

The girls and Tommy are so sweet with him. I see each one, several times throughout the day taking a moment to hug him, say hi to him, or give him a kiss. They have been so patient with the change in caregivers and understanding that most of my time right now goes to their dad. I am able to spend time with each child every day and know that those moments are very important to reassure them and know of their hearts.

My parents and siblings are coming today until Sunday and we look forward to spending some days with them.

In these two weeks we have experienced a lot of emotions, but I can say that for me, for Jake and for our kids the prevailing feeling has been peace. I wouldn't have believed it possible, but every day we feel such an incredible, pervasive, tangible peace that really does surpass all understanding. We consider it a great mercy from our Father in Heaven.

Jake and I have also started to feel so much gratitude as our minds are drawn to the past and all of the wonderful experiences we have shared together. It is another contrary feeling that I would not have thought possible at this time, but being able to feel such great gratitude for our shared lives has opened my eyes to God's real goodness to us through the years. Every night when Jacob prays his words are those of thanks and gratitude to Heavenly Father for all of his blessings.

Thank you for your continued prayers in our behalf. I believe that a great measure of our peace and happiness right now comes from those sustaining prayers and hope you know that they are making a great difference to us.

El fin de la linea

Gracias a mi amiga Nelly por su traducción, quiero compartir las noticias de mi esposo Jacob en español. Les agradezco a todos nuestros amigos que hablan español por sus oraciones para nuestro familia. Han sido un fuente de paz y ayuda para toda nuestro familia. 

Es con gran tristeza que escribo lo que será el principio del final.

Nuestros corazones fueron destrozados el pasado jueves, 3 de marzo. Jacob tuvo una resonancia magnética en la tarde, y su cirujano, el Dr. Smith llegó alrededor de las 3:00 de la tarde y nos dió la noticia. La resonancia magnética se veía terrible. Encontraron cáncer en múltiples lugares, tanto en el hemisferio izquierdo y derecho del cerebro de Jacob, e incluso ha llegado a la base del cerebro. No hay nada más que puedan hacer.

Es surrealista el llegar a vivir el día que había temido desde el principio. El Dr. Smith entró con tres de sus enfermeras, una de las cuales ha llegado a ser cercana a nosotros estos dos años. Él nos habló sobre los próximos pasos y respondió a nuestras preguntas. Después él tenía que irse. Pero antes de salir de la habitación, se puso muy sensible y expresó a Jacob el privilegio que había tenido de ser su médico y que él sólo deseaba poder haber hecho más. Cada una de las enfermeras nos abrazaron y expresaron su amor y simpatía. En un mundo que es tan frío y cruel, su disposición a estar con nosotros en ese momento y llegar a nuestros corazones dolidos como seres humanos vulnerables, fue un acto de caridad pura. Siempre recordaremos nuestro tiempo con estos médicos profesionales maravillosos, dedicados y compasivos que hicieron todo lo posible para ayudar a Jake.

Jacob y yo tuvimos un tiempo a solas después que salieron y simplemente nos abrazamos y lloramos. Nuestros hijos vinieron con la madre de Jacob después de la escuela y les dimos la noticia a ellos y lloramos. Jacob y su madre llamaron a su padre y lloraron. Llamamos a mis padres esa noche y lloramos. Nos comunicamos con nuestros hermanos la noche del jueves y lloramos con ellos también.

Debido a la rapidez con que el crecimiento del cancer ha avanzado desde la operación del 29 de enero, el médico espera que Jacob probablemente muera en el próximo mes o en los siguientes dos meses. El procedimiento de hace unos días parece no tener ningún efecto, ya que su dificultad para hablar y mover el lado derecho es claramente causada por el avance del crecimiento del tumor. Esta dificultad seguirá aumentando.

Por fortuna, GBM no es una muerte terriblemente dolorosa. Más bien, Jacob seguirá perdiendo fuerza y ​​sus funciones y empezará a dormir más y más. Es un desvanecimiento tranquilo. Nos hemos comunicado con los cuidados de un hospicio para desahuciados y comenzaremos con sus servicios el lunes.

Planeamos tener las visitas de nuestros hermanos durante los dos fines de semana en las próximas dos semanas. Los padres de Jacob permanecerán cerca durante este tiempo y mis padres estarán disponibles también.

En realidad, Jacob sólo quiere pasar el resto de sus días en la casa conmigo y con nuestros hijos. Hemos encontrado una paz y una fuerza inexplicable al compartir tantos días preciosos como familia y confiamos en que siga siendo de esa manera.

Estoy segura de que habrá muchas cosas que planificar, organizar y orquestar. Regresamos a casa del hospital el viernes y sólo estamos recuperándonos y tomando un día a la vez. A menudo que las necesidades surgan, les pedimos que cualquier ayuda sea coordinada por los miembros de la familia y la organización de la iglesia. Ustedes pueden contactar al padre de Jacob, John, al siguiente correo, robertsonj229@gmail.com o para los que viven cerca, pueden contactar a Barbara Taylor a randbtaylor@msn.com para ofrecer su ayuda.

Por favor, póngase en contacto con ellos en lugar de mí con las solicitudes de ayuda.

He asumido la mayor parte de la organización y cuidado de Jake y el mantenimiento de nuestra vida, y por el tiempo que le queda sólo quiero pasar mis días al cuidado de él, empaparme y disfrutar de su presencia.

Como escribí en un post (entrada de blog) anterior, no hay nada como el estar rodeado del consuelo de confortadoras palabras. Apreciamos mucho saber de su amor, su simpatía y su apoyo. Esos mensajes nos elevan y motivan a nosotros.

Por favor, sepan que a pesar de que estamos con el corazón roto, sentimos una paz que es impresionantemente calmante. Antes de su cirugía en enero, leí la historia en Mateo 8: 24-26, donde Cristo entró a la barca con sus discípulos. A medida que se levantaba una gran tempestad, los discípulos lo despertaron por temor a que perecieran. Entonces Jesus, hizo calmar los vientos y el mar, y entonces sobrevino una gran calma. Estos versos han sido una respuesta para mí. Yo sentí eso, que al proceeder con la cirugía, habría una gran calma en su enfermedad y Jacob seguiría viviendo.

Pero en cambio, otro milagro tuvo lugar en ese día de la cirugía. Sentí que el miedo aterrador, que durante dos años sentí alrededor de mi corazón, se desvanecia. El temor asfixiante que había existido durante esta etapa, fue tragado y reemplazado por una gran calma. Ya no sentía miedo mas.

Cuando nos sentamos a la espera de los resultados de la RM, estaba leyendo en Lucas 8: 22-24 la misma historia de Cristo en el mar embravecido con sus discípulos. Y mientras lo leía esta vez sabía que la calma no estaría en la situación. Los acontecimientos venideros seguirían   causando estragos y serian extremadamente difíciles para nuestra familia. Pero esta vez, la calma se encontraría dentro de mí, y en el interior de Jacob, y en el interior de nuestros hijos y en el interior de nuestros seres queridos.

La calma es Cristo.

Así que a medida que leas ésto y sollozas, busca la calma en la fuente primera y única que existe.

Acércate a Él. Acércate a Él. Acércate a Él.

Robertson Children's Fund

I’m Jordan’s sister Claire, a CPA. Since so many have inquired about this, Jord asked me to set up some ways for people to donate to their family.

• Go to any branch of Mountain America Credit Union (locations here) and give to the “Robertson Children’s Fund.” You can also call and donate over the phone to this named account at 1-800-310-6228, option 0. You can ask to do a “shared comment” when you donate if you would like to include your name. You can also mail a check to Mountain America Credit Union at PO Box 9001, West Jordan, UT 84084. Please note the name "Robertson Children's Fund" on your check. 

• Donate via Venmo using @robertsonkids, Square Cash using $robertsonkids, or Google Wallet using Jordan's cell number or gmail address if you have them. If none of what I just wrote makes any sense, carry on and forget this paragraph entirely!

• If you would like to donate to the kids’ 529 college savings plans, below are links where you may do so. The 529 plans are held with the state of Utah. There is a tax deduction available for 529 plans to Utah residents, but unfortunately that is only for account owners’ contributions, so will not be available to anyone who donates here. Each child has her/his own account and the money can only be used for college-related expenses when they reach that point.
Lauren 

Ellie 

Ada

Thomas

Please note: if you would like to contribute to all four children's accounts at the same time and choose the "Online" gifting option from the links above, after you enter all your information, you can then enter the gift codes for the remaining three siblings at once at the very bottom under "Add additional gift code." The kids' codes are: LZBJNT (Lauren), 0R5684 (Ellie), 40UNSQ (Ada), and C26JIG (Thomas).

• Mail a check made out to Jordan Robertson to me. If you don't have my address, you can email me at wowclaireh AT yahoo DOT com and I will provide it to you.
•  
• Donate by debit or credit card via PayPal using the yellow Donate button below, or to the right on the sidebar of this blog. 
• 
   

Jordan will save the money for her four children’s marriage, college, and LDS mission funds (hopefully those events do not occur in that order), unless otherwise specified by you. If you would like to learn more about LDS/Mormon missionaries, please read here.

This is simply a means for the many who have asked for a way to help financially to do so. Please also let this be motivation for you to have short- and long-term disability, life insurance, and rainy-day savings in place now, should you ever encounter a similar scenario in your life. All money will go to a trust account set up with Jordan as the trustee.

Please note that any money you give is not tax deductible but is very appreciated. For 2016, one person can give any other person up to $14,000 and not have to pay gift tax on it. So, be sure to keep your donation under this amount and it will be safe from being taxable to you or Jordan by your state and the IRS.

If you have any questions, please contact me at wowclaireh AT yahoo DOT com. Thank you so much for all you have done for Jord and Jake the past two years and for your donations to their family. I couldn’t ask for a better sister and brother-in-law.

February decline

We wanted to express our gratitude for your amazing outpouring of love and concern.

We read every blog comment aloud to our children tonight and it brought such peace and warmth into the room. We tangibly feel of your love and concern and are so grateful for all the prayers that are offered in our behalf.

I know it came as a shock to hear that Jake is getting a shunt one day, to Jake is dying the next.

I wanted to fill in some of the holes.

And share some pictures. All are from Friday, March 5, before leaving the hospital.



Jake's speech has been slowly declining since December. We noticed the change, but it was so gradual that it was hard to pinpoint how exactly it was getting worse.

It started with word finding. Jake would want to say something, but could not bring the word down to his mouth or would use a different, sometimes related, word instead. We were able to crutch along though and figure out what he really meant to say.

As I wrote, his speech aphasia had us concerned before his January scan. When the doctor found some enhancing areas we knew what the problem was.



They operated on January 29 and took out all of the tissue they safely could, right up to the margin of his speech and motor area in the left hemisphere, but knew there were still cells remaining in the functional parts of his brain. The left hemisphere controls the right side of the body as well as speech. Those cells have continued to grow.

For the week right after surgery, Jake was doing well and seemed to be recovering. But then throughout the second week his difficulty with speech reappeared, as well as a new difficulty moving his right hand. At first it was just difficult for his fingers to grip. A few days later it was difficult for him to lift his right arm. A few days later his fingers lost more strength. A few days later his right arm could only lift to ninety degrees.



His right leg started to become heavy and harder to move. I remember on February 10 we walked home from the mall with Lauren's birthday crew and realized for the first time that I could hear his foot dragging as he walked. It wasn't completely clearing the ground as he stepped.

This was definitely concerning to us, especially as we had a family trip to Disneyland already planned. We called his doctor, and spoke to the nurse who gave him a steroid to alleviate what we thought was swelling. She also spoke with the doctor and he recommended scheduling the shunt surgery for the week we got back. They reasoned that with all of his past surgeries, Jake's chances for needing a shunt were increased and it would be better to get it done than let things get worse.

We were in CA from February 20-25 and Jake got on pretty well. We rented him a cart to drive around, but he was able to walk on his own. He had started to feed himself with his left hand, as his right hand couldn't grip the fork well enough and his right arm could not lift all the way up to his mouth.  His speech was difficult, but nothing noticeably alarming.



We had a wonderful trip. Truly a fun, entertaining, happy time. We all commented on how we seemed to leave our troubles behind us for the time we were gone.

We got home and rested. Jake was tired, as was expected after our big and busy days and that weekend he took things easy. He could walk and his right leg bore weight, but he had to concentrate to get it to go as he wanted.

He did start needing help with two handed tasks the last days of February. Putting on his shirt, opening a jar, brushing his teeth. His right hand and arm were becoming very inoperative.

The day before surgery, March 1, we spent several hours at the hospital. They did a CT scan to check for swelling, did his pre-op evaluation and we met with his surgeon. He evaluated Jake and still recommended going ahead with the shunt. He told us that there looked to be a spot on the right hemisphere, and asked if we'd like an MRI after surgery. Normally, with shunt placement they just use a CT scan and we immediately said yes to the MRI. Better to know what is there then spend a few weeks worrying about it.

So on Wednesday Jake walked himself in on his own power for surgery. His right arm by this time was very weak and he was almost not able to move his right hand. He hoped these symptoms would be alleviated, but when he woke up after the operation feeling the same as he felt before it was not a good sign. Jake was definitely discouraged.

He slept a lot that night and on Thursday morning he had the MRI. We talked and read while we waited for the scan. We talked about how there was probably something going on and wondered what, if anything, they could do about it.

Then they came in with the results.

I wrote enough about that in the last post.



We came home on Friday and Jacob's right side is very diminished. The fingers of his right hand cannot move on their own. His whole right arm hangs limp at his side. His right leg can drag along, but it requires all of his concentration to make sure his foot lifts as he takes a step. In addition, the right side of his face is more static, and even the right side of his mouth doesn't move to smile or talk like he wants it to. He is compensating for everything with his left side and has shown so much resilience and strength. I tend to think he can't do things, and then he goes and shows me that he can. He always likes to surprise people. He is tough.

These physical symptoms have come on so rapidly. We are grateful for that. Some people with this disease live with physical or mental or emotional deficits for months or years. Jacob has been whole, in body and thoughts for all but these recent days and we recognize now what a tremendous blessing that is. He has been able to care for himself until just recently, and with four young children, especially a baby turned two year old we are so grateful for that mercy.

His speech is difficult, but I am amazed how much I am able to still understand him. What he wants and needs and is trying to say. He can say many words, but making sure they are the right ones is the trick. He has a great mental capacity and works so creatively to use words, answer questions and gesture to help me know what he is saying. His intelligence is astounding.

So although this seemed to come out of the blue, we have had at least a few weeks warning that things were changing. Especially as he has always been so asymptomatic, these deficits were real red flags for us.



He is still himself. His Jacobness is evident just by looking in his eyes and seeing his smile or eyebrow raise. We laughed several times today, sat outside in the sun, talked about a few things he wants to do, and went on a drive with our children. He emanates peace and tranquility from his very being. He is calm and stillness personified and my hero and very best friend.

The end of the line

It is with a heavy heart that I write what will be the beginning of the end. 

Our hearts broke on Thursday, March 3. Jacob had an MRI in the early afternoon, and his surgeon Dr. Smith came in around 3:00 pm and told us the news.  The MRI looks terrible. There is cancer in multiple spots in both the left and right hemisphere of Jacob's brain, and it has even reached the brain stem. There is nothing more they can do.

It is surreal to live through the day you've been dreading from the beginning. Dr. Smith came in with three of his nurses, one of whom we have been especially close to for these two years. He talked to us about the next steps and answered our questions. Then he needed to leave. But before he left the room, he got emotional and expressed to Jacob what a privilege it was to be his doctor and that he just wished he could have done more. Each of the nurses hugged us and expressed their love and sympathy. In a world that is so cold and cruel, their willingness to be with us in that moment and reach out to our aching hearts as vulnerable human beings was an act of pure charity. We will always cherish our time with these wonderful, dedicated, and compassionate medical professionals who did everything they could for Jake. 

Jacob and I had some time alone after they left and just held each other and wept. Our children came down with Jacob's mom after school and we told them and wept. Jacob and his mom called his dad and wept. We called my parents that evening and wept. We communicated with our siblings late Thursday night and weep with them too. 

Because of how rapidly the growth has advanced since the January 29 surgery, the doctor expects that Jacob will probably pass away in the next month or two. The shunt seems to be of no effect, as his difficulty in speaking and moving his right side is clearly caused by advancing tumor growth. That difficulty will continue to increase.

Mercifully, GBM is not a horribly painful death. Rather, Jacob will continue to lose strength and function and begin sleeping more and more. It is a peaceful fading away.  We have communicated with hospice and will begin with their services on Monday.

We plan to have our siblings come together to visit us over two weekends in the coming two weeks. Jacob's parents will stay nearby for the duration and my parents will be available also. 

In truth, Jacob just wants to spend the rest of his days at home with me and with our children. We have found untold peace and strength as we have shared so many precious days as a family and trust that it will continue to be that way. 

I am sure there will be many things to plan, organize and orchestrate. We came home from the hospital Friday and are just getting our bearings as we take this a day at a time. Whatever needs do arise, we ask that any help be coordinated by our family members and church organization.  You can email Jacob's dad John at robertsonj229@gmail.com or if you are local you can email Barbara Taylor at randbtaylor@msn.com to offer your aid.

Please contact them instead of me with requests to help.

I have assumed so much of the organization of Jake's care and maintenance of our life, and for whatever time remains want only to spend my days caring for him and soaking up his presence.

As I wrote in a previous post though, there is nothing like being wrapped in the comfort of soothing words. We appreciate so much knowing of your love, your sympathy and your support. Those messages are a great lift and encouragement to us. 

Please know that although we are heartbroken, we feel a peace that is overwhelmingly calming. Before his surgery in January, I read the story in Matthew 8:24-26 where Christ entered a boat with his disciples. As a great storm arose they awoke him for fear that they would perish. He hushed the winds and the sea and there was a great calm. These verses were an answer to me. I felt that that as we proceeded with surgery there would be a great calm in his disease and Jacob would continue to live. 

But instead another miracle took place on that surgery day. I felt the vice grip of fear that, for two years, has been wrapped around my heart dissolve. The suffocating fear that has undergirded this journey was swallowed up and replaced by a great calm. I no longer feel afraid. 

As we sat waiting for the MRI results, I was reading in Luke 8:22-24 the same story of Christ on the raging sea with his disciples. And as I read it this time I knew that the calm would not be in the situation. Coming events would still rage and be extremely difficult for our family. But the calm would be inside of me, and inside of Jacob, and inside of our children and inside of our loved ones.

The calm is Christ. 

So as you read this and weep, seek calm in the One and Only source that there is.

Turn to Him. Turn to Him. Turn to Him.