EMYSON AND CO.: Friendship

Monday, June 28, 2010

Friendship

I've been thinking about friendship recently. If pressed how many friends would you say that you had? What is a real friend? Two weeks ago we had a lesson in SS about David and Jonathan. Some of the scriptures we read that day really impacted me. As usual the scriptures gave a voice to my own feelings in a much more eloquent manner than I could ever express.

"And it came to pass, when he had made an end of speaking unto Saul, that the soul of Jonathan was knit with the soul of David, and Jonathan loved him as his own soul." (1 Samuel 18:1)

Then, in 1 Samuel 20:42 it says: "...The Lord be between me and thee, and between my seed and thy seed for ever."

I'm so grateful for the friendship of these two amazing women. I feel like our souls are knit together and I know the Lord will be between us forever.

Heavenly Father helped us find each other and I'm amazed at His direct involvement in my life.

2 comments:

April said...: Oh Emily, You have such a beautiful way of tying the scriptures to the feelings of your heart. Thank you for the blessing of your friendship. I am so thankful that Heavenly Father helped us to find each other. I will cherish you forever. xoxox; June 29, 2010 at 8:34 AM
Becky said...: I don't even have words. I love you dearly and feel the same way. Thank you for expressing it so eloquently. And I can't thank you enough for you being there when I needed you most.; July 1, 2010 at 3:00 PM

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Words to live by

"I don't want to drive up to the pearly gates in a shiny sports car, wearing beautifully tailored clothes, my hair expertly coiffed, and with long, perfectly manicured fingernails. I want to drive up in a station wagon that has mud on the wheels from taking kids to scout camp. I want to be there with a smudge of peanut butter on my shirt from making sandwiches for a sick neighbor's children. I want to be there with a little dirt under my fingernails from helping to weed someone's garden. I want to be there with children's sticky kisses on my cheeks and the tears of a friend on my shoulder. I want the Lord to know I was really here and that I really lived." ~Marjorie Pay Hinckley (emphasis mine)

Lissencephaly

The following is a "quick" explanation of lissencephaly, the condition our handsome Hunter was born with.

Lissencephaly is a malformation of the brain in which the brain surface is smooth rather than convoluted. In man, the surface of the brain is formed by a complex series of ridges and valleys. The ridges are called gyri or convolutions, and the valleys are called sulci. In children with lissencephaly, the normal convolutions are absent or only partly formed, so the surface is smooth. Lissencephaly is usually diagnosed based on interpretation of either a CT or MRI scan of the brain. (Hunter was diagnosed from a CT scan.)

Lissencephaly is only rarely suspected at birth or soon after. Some of the problems parents are likely to notice first include failure to develop visual tracking, poor feeding and weight gain, and seizures. In most children, slow development is recognized between 2 and 6 months of age.

Hunter's specific lissencephaly syndrome is called isolated lissencephaly sequence (ILS). Children with ILS have profound mental retardation with abilities limited to brief and inconsistent visual tracking, brief smiling and some spontaneous movements. They are floppy (due to low muscle tone) and significantly less active than normal children. Head control is poor and they often arch their head and trunk backwards. Seizures are a part of everyday life. Anti-seizure medications can help keep the seizures under control, but total control is nearly impossible to achieve. A child with ILS has a much shorter lifespan than normal.

After some genetic testing, we discovered that Hunter's lissencephaly is the result of a genetic abnormality. He is missing a very small piece of chromosome 17. Since neither Bryson nor I have any missing genetic material, Hunter's condition is not hereditary. (Therefore, the chance of any of our other children having lissencephaly is virtually nonexistent.) In Hunter's case, what happened can be compared to a smudge on a Xerox copy. Genetic material, for whatever reason, simply wasn't copied correctly.

I know people wonder if we are able to have meaningful interaction with Hunter. Parenting Hunter is very interactive and meaningful! Not just anyone could step in and know how to read his cues, but I know that we know Hunter and that he has a personality. It is such a joy to care for him. He is the snuggliest, sweetest boy ever! Knowing that our family is going to be together forever, and that we have the chance to embrace a resurrected Hunter someday, makes the tough days worth it.

If you want to know more about Hunter's life, check out his blog.

EMYSON AND CO.

Monday, June 28, 2010

Friendship

2 comments:

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