I love to tell stories about the "cute" and frustrating things my kids do. And several friends tell me I should write a book about my life - (yea, I agree... "Really?" is what I have to say to that idea too!) And my friends with older kids tell me that I will miss these days, so every so often, I want to record the things that I will supposedly miss... This is mainly for my benefit, but you are welcome to read along...
They say I will miss...
Peanut butter smeared on my couches and windows
Being awakened at 5 am on the weekends to a little boys banging in their rooms - building an addition onto their house as Mark says.
Turning shirts around so they are on the right way
Putting seat belts on the kids every time we get in the car
Reminding climbing monkeys to get their feet on the floor and to stop scaling my furniture
Fishing toys out of the pool that were thrown over the baby gate
Hearing Ryan alternate between, "Mama" and "Mine"
Brushing little teeth
Wiping noses.
The goofy grown up teeth that are way to big for their head
The toothless grin that Ryan has
Snuggles when they don't feel well
The way their head fits perfectly on my shoulder when I am carrying them on my hip
Their excitement about getting on the bus and the hugs when they get off the bus
How Zach calls Mark, "Mark"
Eating the apples non-stop
Ok, so a few of these I will miss... Stay tuned for my next rambling, non-sensical message!
Monday, February 28, 2011
Saturday, February 19, 2011
Why can't it be enough?
I don't really know how to start this post. I don't exactly know how to say this without sounding bad for a variety of reasons. So, I'm just going to jump right in...
Last summer one of my work besties lost her son in a horrible motorcycle accident. I have witnessed first hand how God sustains her. I have seen Jesus be her only hope and comfort. I have felt useless as I see her struggle through the pain.
Last week, one of Agape's missionaries in Haiti lost their four year old daughter to cancer. And while I don't know the Whittakers, my heart is breaking. I can't imagine the pain, but I have better idea because of Patti has shared her struggles with me.
I often feel sorry for myself because I will never be a grandmother, I will never be a mother-in-law. In a sense, I mourn my boys' futures.
And then, I think about Susanah's parents. They won't be able to walk her down the aisle or hold her newborn baby.
And this is where I get so mad at myself. I get to see the joy on Zach and Ryan's face when they are happy. Or the tears when they are upset. I get to snuggle with them in the morning. I get to kiss them good night. I get to receive hugs when they get on the bus each morning. I get to put them in time out when they do something they shouldn't. So while their future isn't what I wanted when I started to dream about being a parent, but they have a future. They have a Jesus who created them exactly as they are for a purpose only they can fulfill.
Why can't it be enough for me? Why does it take someone else's pain for me to put my life into perspective? Why do I continually act like the brat that didn't get her Christmas stocking filled?
How do I make this perspective stick?
Last summer one of my work besties lost her son in a horrible motorcycle accident. I have witnessed first hand how God sustains her. I have seen Jesus be her only hope and comfort. I have felt useless as I see her struggle through the pain.
Last week, one of Agape's missionaries in Haiti lost their four year old daughter to cancer. And while I don't know the Whittakers, my heart is breaking. I can't imagine the pain, but I have better idea because of Patti has shared her struggles with me.
I often feel sorry for myself because I will never be a grandmother, I will never be a mother-in-law. In a sense, I mourn my boys' futures.
And then, I think about Susanah's parents. They won't be able to walk her down the aisle or hold her newborn baby.
And this is where I get so mad at myself. I get to see the joy on Zach and Ryan's face when they are happy. Or the tears when they are upset. I get to snuggle with them in the morning. I get to kiss them good night. I get to receive hugs when they get on the bus each morning. I get to put them in time out when they do something they shouldn't. So while their future isn't what I wanted when I started to dream about being a parent, but they have a future. They have a Jesus who created them exactly as they are for a purpose only they can fulfill.
Why can't it be enough for me? Why does it take someone else's pain for me to put my life into perspective? Why do I continually act like the brat that didn't get her Christmas stocking filled?
How do I make this perspective stick?
Tuesday, February 8, 2011
Wanting a place to "fit in"
I am surrounded by incredible family and amazing friends and people who would do anything for my family. But I'm lonely. I want a place for my kids to fit in. I want to have a specific name, explanation, foundation, for the "funk" my kids have. I am not sure why it's so important to me, it just is. Oh, I know plenty of people with special needs kids, but they all have a label, an explanation. Sometimes I just want to talk to a parent who has exactly what my kids have. Sometimes I want to talk to someone who has both of their kids with the funk. When I'm feeling all boo-hooey because neither of my kids are "normal", I want to talk to someone who is in the same boat. And I am not sure why I want that so badly, I just do. I don't need anyone to fix my kids - I just need someone who gets it because they are right there with me.
So we have been on a 9 year quest to figure out what is up. It started with Zach when he was six months old and it continued when Ryan was labeled with low muscle tone and 12 months. We've done tens of thousands of dollars worth of tests (thank you, Blue Cross/Blue Shield and Aetna!!). We've seen numerous specialists including a metabolic geneticist who conferenced with us and a metabolic neurologist.
I'm beyond the point of fixing my kids; I've moved on to helping them fit into this world and be boys filled with joy. But I'm still willing to pursue the name of their funk.
Last April we did some pretty cool x-linked mental retardation tests. We had to go to great lengths to get the blood drawn and sent to a lab in South Carolina. I even had the perfect excuse when I mess up... I'm half-retarded. I found out today that they came back normal. Yep, once again, my kids are declared "normal". If you know my kids - you would find that as funny as I do.
We also did a second chromosomal microarray analysis. I haven't heard the results because the pediatrician didn't send them to the geneticist. But I expect them to be normal as well.
Anyway, today we visited our geneticist and she examined the boys and shared her thoughts. Basically, there is so many new syndromes being introduced on a monthly basis. New DNA tests are being created monthly and old tests are becoming more effective. She told me that two months after our last microarray analysis, they updated it! (It is kind of neat to see these evolve - we did the very first type four years ago.)
She pretty much ruled out x-linked syndromes and is now refocusing on autosomal recessive syndromes. (If you remember your Punnett Squares from high school biology you will remember that in order to have the recessive trait, both parents have to contribute the recessive trait.) I am not sure of specific syndrome names, but she did mention retesting for Fragile X. She said the boys have the hallmark traits even though the previous tests showed they didn't have it. Apparently, they greatly improved the test and she thinks it's worth a try.
Later in the day - after a side trip to Ikea - we visited the neurologist. We have seen Dr. Fernandez several times a year for the last 9 years - I have such respect for his determination to figure out these kids! After telling him about the genetics visit, he said, "You will find out what is wrong with these boys." He has never said that before and it gets me excited... Scientists are learning so much everyday and it's only a matter of time before we can put our finger on it.
So now I will be cautiously optimistic about this round of tests. I've been optimistic before and was let down - I tend to lean on the pessimistic side, but today's appointments give me a good feeling!
So we have been on a 9 year quest to figure out what is up. It started with Zach when he was six months old and it continued when Ryan was labeled with low muscle tone and 12 months. We've done tens of thousands of dollars worth of tests (thank you, Blue Cross/Blue Shield and Aetna!!). We've seen numerous specialists including a metabolic geneticist who conferenced with us and a metabolic neurologist.
I'm beyond the point of fixing my kids; I've moved on to helping them fit into this world and be boys filled with joy. But I'm still willing to pursue the name of their funk.
Last April we did some pretty cool x-linked mental retardation tests. We had to go to great lengths to get the blood drawn and sent to a lab in South Carolina. I even had the perfect excuse when I mess up... I'm half-retarded. I found out today that they came back normal. Yep, once again, my kids are declared "normal". If you know my kids - you would find that as funny as I do.
We also did a second chromosomal microarray analysis. I haven't heard the results because the pediatrician didn't send them to the geneticist. But I expect them to be normal as well.
Anyway, today we visited our geneticist and she examined the boys and shared her thoughts. Basically, there is so many new syndromes being introduced on a monthly basis. New DNA tests are being created monthly and old tests are becoming more effective. She told me that two months after our last microarray analysis, they updated it! (It is kind of neat to see these evolve - we did the very first type four years ago.)
She pretty much ruled out x-linked syndromes and is now refocusing on autosomal recessive syndromes. (If you remember your Punnett Squares from high school biology you will remember that in order to have the recessive trait, both parents have to contribute the recessive trait.) I am not sure of specific syndrome names, but she did mention retesting for Fragile X. She said the boys have the hallmark traits even though the previous tests showed they didn't have it. Apparently, they greatly improved the test and she thinks it's worth a try.
Later in the day - after a side trip to Ikea - we visited the neurologist. We have seen Dr. Fernandez several times a year for the last 9 years - I have such respect for his determination to figure out these kids! After telling him about the genetics visit, he said, "You will find out what is wrong with these boys." He has never said that before and it gets me excited... Scientists are learning so much everyday and it's only a matter of time before we can put our finger on it.
So now I will be cautiously optimistic about this round of tests. I've been optimistic before and was let down - I tend to lean on the pessimistic side, but today's appointments give me a good feeling!
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