I decided that my facebook friends were becoming a little too, well, diverse (for lack of better term) and I decided to do a "Cleansing". I thought that if I knew at least 2 pertinent things about the person I was potentially "cleansing", that I would keep them.
After 2 days of working through my friends list (oh my computer is sooo slow) I voted close to 33 people off my island. Now, in my defense, I did not know 2 things about these people. But, when I got to the letter M, I started having friend deletion remorse. Because a TON of people had found me off of Laynie's page, and I figure if they work that hard to find me, they should get to keep me (ahem). So, to keep from babbling here, to make a long story short, I posted another post and said something like, if you are past the letter M, and I don't know 2 things about you, you better speak now or forever hold your peace. Look who wrote me and how precious this family is..... (This is why I won't do any more cleansings, because who KNOWS how many more Melissa Kitchens there are out there reading my stuff??? and I don't even know... for the love of reading!)
Listen to this precious story.....
Hello Lolly,
I realized after your status the other day that you probably have no clue who I am or why I'm on your friends list on FB. My name is Melissa Kitchens (I'm sure FB told you that lol) and I am a 25yr old mother of 2 special needs children. I was pregnant when I first learned of your journey with Laynie, through the Children's Miracle Network and then further through your blog and radio airings. I have a son who will be 6 in February, who has Autism and SPD but is the most loving, amazing child. He has conquered so much in his short lifetime already, and taught me alot about love. I also have a daughter who will be 1 this week. She was born with multiple birth defects and we are still in the diagnosing phase. As in, every time we see the doctors at Vanderbilt Children's she comes home with a new diagnosis. :)
I've become used to it in the last year. It no longer affects us when they tell us something she may not be able to do, or something she's going to endure. Because I believe as you have so constantly written, God is good- all the time. I have to trust in Him and I know that while she is my child, she is HIS child first.
When I was pregnant with her and found out at my routine Ultrasound that she had health concerns, I read where you wrote about Laynie and the scripture "She is fearfully and wonderfully made" from Psalms. It has held fast to my heart. Brooke has Ehlers Danlos Syndrome, microcephaly, VUR, a duplicated Renal system with shared arteries and free floating ureters, a heart murmur, Laryngomalacia, tracheomalacia with secondary GERD, absent acoustic reflexes in her ears, and she failed her vision screening at our last visit. She has Cranio, but we have opted to not do surgery as her brain and skull stopped growing months ago. We have been in Physical therapy and hope to add independent mobility to our list of accomplishments.
With her original assessments, we were told she wouldn't be able to maintain an upright position, eat normal food, self feed, become vocal, crawl, walk, and would probably be mentally retarded. That if the pressure in her brain didn't regulate that it could lead to a short life. It seems every time they say she won't be able to do something, she proves them wrong. With every step forward I repeat, God is good. After months of physical therapy, she can sit up, pull up, and crawl. She still cannot roll over, but seems content to skip it. She dislikes babyfood and will eat anything you fine mash for her, often feeding herself with her fingers. It takes an hour, and she wears more than she ever gets into her mouth, but she's doing it. She now signs "more" and "daddy" and babbles, even if she has no words. She is no longer cathed but able to wear a diaper and go as all babies go. Her joints dislocate constantly and we often hear "clicks" and "clunks" as she pops her little joints back into place, but she just keeps going. When we took her back to the doctor who did her original assessment, he told us that all he could say was this, "You know, I didn't do this. You didn't do this. GOD did this."
In between the various therapists that almost live in our home for both children and doctors visits, I find much that makes me think of your journey and Laynie. The stories you've shared and the faith your family has shown. You've been an inspiration to me, and to my family. I've shared your faith as an example many times. Looking at pics of my daughter, you would never imagine she has so much going on in her tiny little body. Often I've found when I've tried to share her story I have people say "oh, but she looks just fine. She doesn't look sick," and they are uninterested in the point I've tried to express. I know you are probably wondering why in the world I've emailed you this, but I wanted to share a little of our story. And I've also wanted to tell you how much of God's light shines through you. Even if it is halfway across the US on facebook. Thank you, for being you and sharing things so openly.
~Melissa Kitchens
I realized after your status the other day that you probably have no clue who I am or why I'm on your friends list on FB. My name is Melissa Kitchens (I'm sure FB told you that lol) and I am a 25yr old mother of 2 special needs children. I was pregnant when I first learned of your journey with Laynie, through the Children's Miracle Network and then further through your blog and radio airings. I have a son who will be 6 in February, who has Autism and SPD but is the most loving, amazing child. He has conquered so much in his short lifetime already, and taught me alot about love. I also have a daughter who will be 1 this week. She was born with multiple birth defects and we are still in the diagnosing phase. As in, every time we see the doctors at Vanderbilt Children's she comes home with a new diagnosis. :)
I've become used to it in the last year. It no longer affects us when they tell us something she may not be able to do, or something she's going to endure. Because I believe as you have so constantly written, God is good- all the time. I have to trust in Him and I know that while she is my child, she is HIS child first.When I was pregnant with her and found out at my routine Ultrasound that she had health concerns, I read where you wrote about Laynie and the scripture "She is fearfully and wonderfully made" from Psalms. It has held fast to my heart. Brooke has Ehlers Danlos Syndrome, microcephaly, VUR, a duplicated Renal system with shared arteries and free floating ureters, a heart murmur, Laryngomalacia, tracheomalacia with secondary GERD, absent acoustic reflexes in her ears, and she failed her vision screening at our last visit. She has Cranio, but we have opted to not do surgery as her brain and skull stopped growing months ago. We have been in Physical therapy and hope to add independent mobility to our list of accomplishments.
With her original assessments, we were told she wouldn't be able to maintain an upright position, eat normal food, self feed, become vocal, crawl, walk, and would probably be mentally retarded. That if the pressure in her brain didn't regulate that it could lead to a short life. It seems every time they say she won't be able to do something, she proves them wrong. With every step forward I repeat, God is good. After months of physical therapy, she can sit up, pull up, and crawl. She still cannot roll over, but seems content to skip it. She dislikes babyfood and will eat anything you fine mash for her, often feeding herself with her fingers. It takes an hour, and she wears more than she ever gets into her mouth, but she's doing it. She now signs "more" and "daddy" and babbles, even if she has no words. She is no longer cathed but able to wear a diaper and go as all babies go. Her joints dislocate constantly and we often hear "clicks" and "clunks" as she pops her little joints back into place, but she just keeps going. When we took her back to the doctor who did her original assessment, he told us that all he could say was this, "You know, I didn't do this. You didn't do this. GOD did this."
In between the various therapists that almost live in our home for both children and doctors visits, I find much that makes me think of your journey and Laynie. The stories you've shared and the faith your family has shown. You've been an inspiration to me, and to my family. I've shared your faith as an example many times. Looking at pics of my daughter, you would never imagine she has so much going on in her tiny little body. Often I've found when I've tried to share her story I have people say "oh, but she looks just fine. She doesn't look sick," and they are uninterested in the point I've tried to express. I know you are probably wondering why in the world I've emailed you this, but I wanted to share a little of our story. And I've also wanted to tell you how much of God's light shines through you. Even if it is halfway across the US on facebook. Thank you, for being you and sharing things so openly.
~Melissa Kitchens
You're choked up, aren't you? I know I sure was. Here is just one family, someone I haven't even met, and she read my stuff about Laynie, and let it resonate in her family. I felt like I was reading our story, reading hers. That's how God works. God. IS. Good.
I wrote her back and asked her if I could share this, and she replied:
I felt that you did need to know that you have been heard, and that you allow God to be heard through you. I don't mind if you share her story. She's doing remarkably well, and I feel blessed beyond anything I could imagine that she is having a considerably more "normal" life than they thought she would.
I can't complain about seeing all the doctors, and the issues she has going on. I know that there are children who face much, much worse, and I wish people were more aware of this so that they wouldn't take their children for granted. When I was pregnant with my daughter, someone asked what if our second child wasn't normal either. We just smiled and replied "we don't know what normal is, so I'm pretty sure God will show us what to do again." We aren't able to have anymore children, but I'm pretty sure I have 2 angels living in my house right now. :)
WOW.
Melissa Kitchens, I will never cleanse you from my friends, because now we are BFF's. I've never met you, or held your sweet babies (and they would love me, for I am SUPER LOLLY), but we are sisters in Christ, and we know, that children are a Gift from God, only given to us for safekeeping. He doesn't promise they will stay forever, whether it be 100 years or 100 days, children are a GIFT.
Thanks for reminding me that again, and Melissa Kitchens, you are a gift too. Special moms get the special babies, and you must be extra special.
God is good, All The Time.
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| Look at these sweet little cupcake cookies. |
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