Kami...
It's almost noon. Jason is laying down, because he hardly slept last night. Kami is walking around the house looking for something to do. Aly is drawing. And Taylor is lounging in the bathtub. And Dave (our basement dweller:) until he gets married next month) is gracefully playing the piano. But I have a weird heaviness looming over me today... I think it's a combination of things.
I'm used to that feeling of "I should be doing more", or me wondering who I've disappointed lately, and the obvious is the weekend of Easter. Isn't it strange how flippant we are in saying "Jesus died on the cross for our sins. He rose again"? I notice it especially when I hear Taylor say it. It's just strange really to hear a child talk of a person's torture, and then of the miraculous followed by questions of what we are doing for the day like this happens all the time or something. So I am trying to linger in the truth of who Jesus is, what he has done for us and the beauty he has brought into my life in knowing him. This will be a constant for me this weekend. And I want it to be a large part of the conversations I have with my girls this weekend also, but there is another gut punching blah feeling in me that is removed from that.
Kami...
She has a very sweet group of friends that love her, and I believe even look up to her. Some are church friends and some from school. She is a strong leader, and really unafraid to be who she is. She is the littlest of her friends. I'm 5'8" and Jason is 6', so maybe she'll grow eventually. Aly is two years younger than Kami, but they share clothes, because they are the same height (nice for the budget).
Kami was born with Moebius Syndrome. She wasn't diagnosed until she was about six months, so up to that point we only knew what we could see. First, that she was a darling olive skinned baby with tons of curly black hair. But at the moment of hearing her first cry I saw her hands. Her right hand was webbed and her left hand was very different. Then I saw her crying face squeezed on one side, but nothing on the other side. Those six months of unknown saw lots of tears from me and Jason.
Just this week we were at the ophthalmologist, who every time we see him says to Kami, "You are the most beautiful girl I've ever seen with Moebius Syndrome". Well, I think so. She has is a very mild case. Most Moebius patients have zero facial function. Thankfully, Kami only has partial facial anomaly.
God has without a doubt given Kami a strong spirit (the strong-willed part is not my favorite, but I'll take it). She is definitely ok with how she is, and even likes how she is... usually. I'll never forget in my fragile post pregnancy state after Aly was born the first thing Kami did as a two year old big sister when she saw Aly was examine her hands. Ugh...broke my heart. Then there was a time a few years ago that Kami told Jason that she didn't think any boy would want to marry her, because of her hands. And last year a 6th grade boy should've feared for his life as Kami told me of him getting frustrated at her, because she was trying to hurry him along at the locker, so he abruptly turned to her and said, "Your hands are messed up and so is your face." Holy cow, boy, you are messing with the wrong mother!! Thankfully, we are friends with the assistant principal, so we addressed it through him to avoid a prison sentence. The boy did sweetly come to Kami and apologize. We were reminded that hurt people are the ones that typically hurt people, and he was a hurting boy. On occasion Kami will have different kids ask why her hands or face are the way they are, and she gets annoyed with that if it's over and over. Even her own littler cousins will ask. We have had a lot of fun coming up with what she could say...
We talk about it off and on, but don't ever want to make it a big deal, because Kami is not Moebius Syndrome and she is not the girl with the hands or smile thing. She's a child of God, who is adored by her parents and sisters (sisters...most of the time), who loves to dance (if you haven't seen her last dance it's on my facebook...I'm a little proud), talk:) and do nails.
Yes, do nails. The girl has a stash of nail polish that could make about any nail design you desire. So a few weeks ago one of her best friends invited Kami to her 13th birthday party, and they were going to go to a nail spa to get manicures. She was stoked, but the heart to heart conversations that we have at bedtime lead to her saying, "I just wished my hands were normal". Choke. She has maybe said that twice in her whole life. She really is typically glad to have her hands different than everyone elses.
So she went to the birthday party, sent me a picture of her hands with all the other girls hands too after they were all done. She said "mine are the hands with the purple polish". Ha:) as if I couldn't tell which hands were hers, which is what I love... She really doesn't dwell on it, and I think she forgets that she is different. But it made me tear up. Tears of "ugh! I just want her to feel comfortable with her friends and not feel bad", but also just thankful that she wants the world to see her nails...not her hands, but her nails.
... I guess that is Easter, right? Jesus' hands and nails? Weird. Didn't mean for that to all come together, but apparently God is sitting here whispering to me heart.
"In this world you will have trouble" (this is just a little ache in my heart for my girl that I love, so not a huge trouble, but our reality), "but take heart for I have overcome the world". Thank you, Jesus, for the little metaphor you spoke into my ache today.
I'm used to that feeling of "I should be doing more", or me wondering who I've disappointed lately, and the obvious is the weekend of Easter. Isn't it strange how flippant we are in saying "Jesus died on the cross for our sins. He rose again"? I notice it especially when I hear Taylor say it. It's just strange really to hear a child talk of a person's torture, and then of the miraculous followed by questions of what we are doing for the day like this happens all the time or something. So I am trying to linger in the truth of who Jesus is, what he has done for us and the beauty he has brought into my life in knowing him. This will be a constant for me this weekend. And I want it to be a large part of the conversations I have with my girls this weekend also, but there is another gut punching blah feeling in me that is removed from that.
Kami...
She has a very sweet group of friends that love her, and I believe even look up to her. Some are church friends and some from school. She is a strong leader, and really unafraid to be who she is. She is the littlest of her friends. I'm 5'8" and Jason is 6', so maybe she'll grow eventually. Aly is two years younger than Kami, but they share clothes, because they are the same height (nice for the budget).
Kami was born with Moebius Syndrome. She wasn't diagnosed until she was about six months, so up to that point we only knew what we could see. First, that she was a darling olive skinned baby with tons of curly black hair. But at the moment of hearing her first cry I saw her hands. Her right hand was webbed and her left hand was very different. Then I saw her crying face squeezed on one side, but nothing on the other side. Those six months of unknown saw lots of tears from me and Jason.
Just this week we were at the ophthalmologist, who every time we see him says to Kami, "You are the most beautiful girl I've ever seen with Moebius Syndrome". Well, I think so. She has is a very mild case. Most Moebius patients have zero facial function. Thankfully, Kami only has partial facial anomaly.
God has without a doubt given Kami a strong spirit (the strong-willed part is not my favorite, but I'll take it). She is definitely ok with how she is, and even likes how she is... usually. I'll never forget in my fragile post pregnancy state after Aly was born the first thing Kami did as a two year old big sister when she saw Aly was examine her hands. Ugh...broke my heart. Then there was a time a few years ago that Kami told Jason that she didn't think any boy would want to marry her, because of her hands. And last year a 6th grade boy should've feared for his life as Kami told me of him getting frustrated at her, because she was trying to hurry him along at the locker, so he abruptly turned to her and said, "Your hands are messed up and so is your face." Holy cow, boy, you are messing with the wrong mother!! Thankfully, we are friends with the assistant principal, so we addressed it through him to avoid a prison sentence. The boy did sweetly come to Kami and apologize. We were reminded that hurt people are the ones that typically hurt people, and he was a hurting boy. On occasion Kami will have different kids ask why her hands or face are the way they are, and she gets annoyed with that if it's over and over. Even her own littler cousins will ask. We have had a lot of fun coming up with what she could say...
We talk about it off and on, but don't ever want to make it a big deal, because Kami is not Moebius Syndrome and she is not the girl with the hands or smile thing. She's a child of God, who is adored by her parents and sisters (sisters...most of the time), who loves to dance (if you haven't seen her last dance it's on my facebook...I'm a little proud), talk:) and do nails. Yes, do nails. The girl has a stash of nail polish that could make about any nail design you desire. So a few weeks ago one of her best friends invited Kami to her 13th birthday party, and they were going to go to a nail spa to get manicures. She was stoked, but the heart to heart conversations that we have at bedtime lead to her saying, "I just wished my hands were normal". Choke. She has maybe said that twice in her whole life. She really is typically glad to have her hands different than everyone elses.
So she went to the birthday party, sent me a picture of her hands with all the other girls hands too after they were all done. She said "mine are the hands with the purple polish". Ha:) as if I couldn't tell which hands were hers, which is what I love... She really doesn't dwell on it, and I think she forgets that she is different. But it made me tear up. Tears of "ugh! I just want her to feel comfortable with her friends and not feel bad", but also just thankful that she wants the world to see her nails...not her hands, but her nails.
... I guess that is Easter, right? Jesus' hands and nails? Weird. Didn't mean for that to all come together, but apparently God is sitting here whispering to me heart.
"In this world you will have trouble" (this is just a little ache in my heart for my girl that I love, so not a huge trouble, but our reality), "but take heart for I have overcome the world". Thank you, Jesus, for the little metaphor you spoke into my ache today.
Wow...very powerful writing about a very wonderful girl!!
ReplyDeletethank you for sharing, Kami is beautiful! Her story is not yet over, God will continue to use her. If you haven't heard of Nick Vujicic I encourage you to learn who he is & let his life bless you, http://www.attitudeisaltitude.com/
ReplyDelete(note from Priscilla)
Kami is beautiful, inside & out, just like her mother, thanks to Jesus!
ReplyDeleteYour daughter is absolutely beautiful! I can relate to everything you just wrote. I also have a daughter with moebius syndrome and it only affects her right side of her face. Also my daughter was born with webbed fingers on her right hand. They diagnosed her with Poland syndrome because of her right hand is smaller than normal. My daughter has a strong spirit as well, she does not let her syndromes hold her back from her achievements. :)
ReplyDeleteVeronica, Thank you for your sharing. I'm so curious if we have a mutual connection or if you just happened to come across my blog. I told Kami about your daughter, and she was wondering how old she is. It's definitely been a learning journey, but so rewarding. Feel free to find me on facebook and message me (Heidi Cortner-Holdridge). I'd love to stay in touch.
ReplyDeleteI happen to have a patient right now who is suspected to have a Mobius sydrome. Though i read about it, i never encountered one yet not until today. This made me search more about this and thats when i came across your article. Your daughter is indeed so lucky to have you with her. She is strong and confident now because of the support that you have given her. I admire mothers like you. I am quite a normal person, but I seem more living like a handicapped. Continue encouraging her in all aspect of her life, and she will be the best in her crowd. God bless
ReplyDelete