Zachary left today to Pocono, Pennsylvania to run a marathon with the USNA marathon team so Grammy and Uncle Matt came to help me out this weekend- we did some shopping and of course went to Chick-fil-a. I have a problem.
Also today is Malia's 10 month birthday! She is just the sweetest little baby I've ever come across- the way she holds her baby and pats my arm every time I pick her up. And to add to that- now she's blowing kisses too and when I blow her a kiss it just makes her so happy- she loves attention and affection and I really think she's going to be such a giver and so very kind. I am so blessed to be her mommy!
When we went to the mall this evening something interesting happened. Matt was trying on some clothes at Eddie Bauer and so I was just standing with the two kids- a lady who worked there started talking to the kids and was commenting on how different their eyes are- I noted that my husband has blue eyes and I love that one of them has brown and the other has blue and she started talking about how she used to have beautiful blue eyes- talking about the rim was a different color than the rest and then noted that her eyes changed colors when she got lisch nodules. Recognizing that as a common problem for people with NF I said, "You don't have NF do you?" And she said she does. So I told her Liam did too and she gave me a look that is hard to describe. One that said, "I'm so sorry," and one that said "there's someone like me," and one that said "this is going to be hard" and one that said "but you'll make it." She is a first generation NFer like Liam is- no one in her family had it or had heard of it before but she has two kids- a boy and a girl- and her son does have it- her daughter doesn't. So one thing that I constantly have to keep in mind is that every doctor I have talked to about NF has said different things but one thing they have all said is that each NF patient is different. Some have a severe case and some have a mild case- each severe case looks different, each mild case looks different. But she told me a little bit about her son's experience and gave me some websites to look up that can be helpful. Her son graduated from high school on time but it was a tough road to get there- she said he's brilliant but just doesn't learn the same way that other kids learn and that sounds a lot like Liam already. So it was encouraging that this lady has a job, can carry a conversation and grew up to have a family. It's not what I would have chosen to experience out of the blue on a Saturday night but maybe this meeting wasn't for me- maybe it was for her. Maybe she needed to see someone that knew what she felt as a parent of a child with NF. Maybe she needed to give those resources to someone and know that her experience was going to help someone else. Or maybe it was for Liam- maybe he needed that extra story and the extra tight hug and the thirty minutes later than normal bed time- only God knows. But whatever reason there was for this meeting, I'm thankful for it. She made it clear that this is not easy and it made me think of how I'm going to help him through the tough times- this song came to mind.
I've had questions without answers,
I've known sorrow, I have known pain.
But there's one thing that I cling to,
You are faithful, Jesus you're true.
When hope is lost, I'll call you savior.
When pain surrounds, I'll call you healer.
When silence falls, you'll be the song within my heart.
When silence falls, you'll be the song within my heart.
In the lone hour of my sorrow,
Through the darkest night of my soul,
You surround me and sustain me,
My defender forever more.
When hope is lost, I'll call you savior.
When pain surrounds, I'll call you healer.
When silence falls, you'll be the song within my heart.
I will praise you. I will praise you.
When the tears fall, still I will sing to you.
I will praise you, Jesus praise you.
Through the suffering, still I will sing.
When hope is lost, I'll call you savior.
When pain surrounds, I'll call you healer.
When silence falls, you'll be the song within my heart.
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