I finished reading an amazing book a few weeks ago. It is called I Am A Mother by Jane Clayson Johnson. I was thinking about a few of the passages from the book this morning and wanted to share this quote, along with some of my thoughts. The quote (which is from the book) comes from former New York Times reporter and Pulitzer Prize nominee Ann Crittenden. She writes,
"Any woman who has devoted herself to raising children has experienced the hollow praise that only thinly conceals smug dismissal. In a culture that measures worth and achievement almost solely in terms of money, the intensive work of rearing responsible adults counts for little. One of the most intriguing questions in economic history is how this came to be; how mothers came to be excluded from the ranks of productive citizens. How did the demanding job of rearing a modern child come to be trivialized as baby-sitting? When did caring for children become a 'labor of love,' smothered under a blanket of sentimentality that hides its economic importance?"
Last night, I was catching up with an individual when, after sharing details about the job she was currently working full-time at, she asked me, "What do you do?" Once again, I found myself conceding with a twinge of embarrassment, "Oh, I just stay at home and do the 'mom thing' with Hunter." The look on her face encompassed the first sentence of the quote I shared above.
Since I started this blog, a few people have joked with me that blogging is the pastime of every stay-at-home mom. I believe there to be some truth to this, and this morning, I want to assert to all of my fellow mothers that, "The world can only value mothering to the extent that women everywhere stand and declare that it must be so." (I Am A Mother, 8.)
I know that I need to stand a little straighter and declare a little better that there is NOTHING more significant I could be doing with my life then mothering my precious son. "Motherhood is not what was left over after our Father blessed His sons with priesthood ordination. It was the most ennobling endowment He could give His daughters, a sacred trust that gave women an unparalleled role in helping His children keep their second estate." (I Am A Mother, 50.)
Motherhood matters-I feel it in my soul and it makes my life sweet everyday!
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Bryson, Emily, Hunter, Eleyna, Rockwell & baby Bria
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Marrying your best friend
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)
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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.
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.
8 comments:
Hi Em! I LOVE your post. That's so interesting because I was talking to Rob about that same thing the other day. Why is it that productivity is only associated with money? The only difference, for example, is that I don't wake up thinking, how can I make a company better, it's how can I make a child's life better...and then work towards that. Having a career is a way to be productive, but it's not the only way. Anyway, thanks for the thought-provoking post. I love you Em!
Em - wonderful post. I've noticed myself feeling almost embarrassed when I tell my fellow classmates that I plan on becoming a mom when I graduate. It shouldn't be that way! Thanks for making me feel excited for my future role as a mother.
Em-Andee left a comment on my blog and told me that you had a blog too. Awesome!! Congratulations on the baby news. I'm very happy for you guys--what a lucky little girl to come to such a wonderful family.
As for this post, when I was in grad school I used to joke with my students that I was going to hang my diploma above my baby's crib. I was pregnant with Marcus for most of my final year there (he was born just 4 days after my thesis defense). I really feel that all the skills I learned in school have only made me into the mother I am now. I feel blessed to have had that experience, and now I feel blessed to be having this one.
Being a stay-at-home mom is a wonderful and I am grateful that Marcus and I get to be such buddies.
By the way, thanks for the info on your sidebar about Hunter. It is so helpful to know more, because I never know what questions to ask about him. I'm glad I understand a lot more now! He is a very cute and sweet boy and lucky to have you guys as his parents.
Thanks for the reminder! I coudn't agree more about being a mother, and although no one has ever cheered me on while I change a diaper or make dinner, my relationships with my children are an eternal reward that I wouldn't trade for anything. I love being Mom. I am putting this book on my list of reads! Thanks!
I loved your post...it was the perfect thing for me to read after a tough and long day with the boys. It is hard at times, but I am really trying to cherish this time when the boys are young and I am fortunate to spend all my time with them. Days when I feel isolated at home I will think of your words and remember how lucky I am! Thanks
Hey Emily! Thanks for commenting on our blog, glad you found it! This will be a fun way to keep in touch. I too am glad you told about your son and am so amazed by all that you do with him! He seems like a precious boy! Congrats on the baby girl, we are having a baby girl too April 29- hooray for little girls! Well, it will be fun to look at your blog! Hope all is well!
I think you are the best at explaining things! The info on the side is amazing and what a blessing Hunter is in your lives! He is a sweet boy:)
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