The Joy of Jacob: Here Comes the Sun

Tuesday, January 15, 2013

Here Comes the Sun

Today marks exactly two months since our sweet Jakey boy passed away. It still seems surreal. We find ourselves missing him terribly...some days are better than others, but not a day goes by that we don't miss his smiling face or the way it felt snuggling him in our arms. Our precious memories just don't seem to be enough. We continue to find comfort in visiting Jake's gravesite and like bringing him fresh flowers or special mementos each time we visit.

These are the super colorful blue flowers that we brought for Jakers today -- they're freshly cut too!

Some days when we visit Jake we are pleasantly surprised to find special gifts, notes, or flowers that others have left for Jake. We can't begin to tell you how wonderful it is see these tokens of love for our little man because they always bring smiles to our faces to help combat the tears.

This cute little monkey greeted us today with a cheery smile : )

I came across this quote the other day and it really resonated with me. In fact, I think it's a perfect reflection of our Joy of Jacob blog and how we've chosen to live our lives despite the circumstances...in JOY!

These milestone days (2 months) are definitely more difficult for us. While it has been devastating for us to deal with the loss of our little boy, we continue to try and seek out the joyful moments in each day. Today's most joyous moment came in the form of a song that came on the radio right after we left the cemetery -- "Here Comes the Sun". This song became very special to us after Jake's diagnosis when Jake's grandpa Paul sang this song to him, while playing the guitar. We are fortunate to have a video of this special moment in time and used to always play it for Jacob -- he LOVED that song! We sang "Here Comes the Sun" to Jake the night before he passed away and it was also played at his Celebration of Life service. Even though we hear it often (by our own choosing), we never hear it on the radio...until today. Josh and I both looked at eachother and said "Jakey's song!" Just when the sorrow was seeping in, our little angel brought joy back into our day.

2 comments:

AnonymousJanuary 16, 2013 at 5:44 AM
I too love 'Here Comes the Sun,' along with most other Beatles music. Their tunes just seem to mellow me and make me happy when I'm struggling in any way. I hope they have the same effect on you.
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Cathy JohnsonJanuary 16, 2013 at 9:03 AM
Oh Sarah, I was thinking of you so often yesterday. I am so sorry that you have to have these milestone days and the tears that come with them. "Here Comes the Sun" is such a soothing, healing song - no wonder Jake loved it. And I am always so amazed at the way Jake sends you those little reminders just when you need them most. What an awesome little soul he is! xoxo
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Niemann-Pick Disease

Niemann-Pick Disease is a lysosomal storage disease, which causes fatty substances called lipids to collect in the cells of the liver, spleen and brain. The disease is genetically-inherited, but it is considered a recessive trait. In order for a child to have Niemann-Pick Disease, both parents must be carriers of a genetic mutation causing Niemann-Pick. There are three main types of Niemann-Pick Disease -- Types A, B and C. Types A and B are also referred to as acid sphingomyelinase deficiency (ASMD).

Genetic testing revealed that Jacob had Niemann-Pick Disease type A/B (also referred to as an intermediate form), which is a combination of the most severe and the least severe form of the disease. His body produced a very minimal (3%) amount of an enzyme called acid sphingomyelinase (ASM), which helps break down fat. Since Jacob’s body didn’t produce much of this enzyme, his body had great difficulty getting rid of ASM. The sphingomyelin had nowhere to go so it accumulated in his cells, eventually causing cell death and the malfunction of major organ systems.

Those with Type A typically live to be only 2 to 4 years of age, whereas, patients with NPB generally have little or no neurologic involvement and may survive into adulthood, though there may be health complications. Type B individuals usually have enlarged livers and spleens, and respiratory problems are common. The enlargement of organs and the respiratory problems can cause cardiovascular stress. With Jacob, it was unknown what the exact progression of his disease would be. Shortly after Jacob's diagnosis, it became apparent that his disease was presenting in a more aggressive form and he did have neurologic impact. There are approximately 1,200 cases of type A and B worldwide with the majority being Type B. Unfortunately, there is currently no treatment or cure for the disease and care is mostly supportive.

The Joy of Jacob

Tuesday, January 15, 2013

Here Comes the Sun

2 comments:

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