Showing posts with label NF1. Show all posts
Showing posts with label NF1. Show all posts
Wednesday, May 3, 2017
Sunday, May 17, 2015
May 16 = 10 Months Day!
Good morning Liam! Each morning when I go to get him up, he is in some fashion halfway off the bed. Silly man.
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!
Side note:
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.
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.
Monday, March 30, 2015
March 17 = Hair Cut Day
So... for the first time, I forgot to take Malia's monthly picture on the 16th. This one was taken a day late. At eight months, Malia is getting so very close to crawling. She's making lots of sounds, "baba," "dada," "gaga," "ppppppp," "ehhhhh," ya know, things like that. She has started patting our arm every time we pick her up like a little hug. She waves. When she's excited, she can't keep her little hands still. She still likes her pacifier but is starting to really enjoy stuffed animals more. She may not be crawling but she's getting where she wants to go. She continues to be such a happy, content, loving baby and such a joy to everyone she meets.
In addition to taking monthly pictures, we decided to tackle Liam's crazy hair. I've been suggesting we cut his hair for several weeks now but it's been so cold so we've been putting it off. Well- today was the day and here is a before and after!
But before we did all of this, we had a genetics appointment at Walter Reed. I am writing this on the 30th... almost two weeks after the actual day so I forgot that the appointment was the same day as Malia's pictures and Liam's hair cut. We found out "today" that Liam definitely has Neurofibromatosis Type 1. One younger doctor began the appointment by doing a quick exam and seeing if we had any questions. I told her we were expecting the results from Liam's NF test and she said the results were in and they were positive. She did a great job of giving us the information right away, not making us wait, but also giving them to us with compassion. I knew they were going to be positive. The geneticist in Jacksonville told us she had never seen a child Liam's age with the number of cafe au lait spots he had that did not have the disease. That along with his small size, large head circumference and delayed development- I knew in my heart he had NF. I had prepared myself to hear that they were positive. When she left the room to get the genetics expert, Zachary asked me if I was okay. There was this tiny hope that I had let enter my brain that they'd say he didn't have it. That all these other things were coincidences and that there was nothing to worry about. So I had to deal with that not being reality but I was okay. I was okay and I am okay because I know we can handle this.
I firmly believe that there is a reason Liam has NF. Yes, something strange happened in Liam's DNA that made this mutation occur. But there's a reason that happened. Well, many reasons.
There are hundreds of people who have prayed for Liam. Praying for Liam brought them closer to God for the few seconds or minutes they spent praying for him.
Several of Liam's therapists have told me that he was the highlight of their day- that they looked forward to his appointments because, while he can be very stubborn, he's always cute and 95% of the time he's such a sweetheart. So because of Liam's NF, he has brought joy to Jen's and Amanda's and Elle's and Janine's days. And with his progress, they've seen a direct result of what their hard work can do.
Other parents who have heard about what Liam goes through and what we, as his parents go through, have expressed to me that they can't imagine dealing with what we're dealing with. While I think part of them saying that is to be supportive and empathetic, I can tell that another part of it is them saying they are thankful this is not something they have to deal with so there are many parents who, even if for a moment, have been thankful that their children are healthy and gratitude is a wonderful thing.
Zachary doesn't talk a lot about his feelings and thoughts on Liam having NF. He mainly makes sure I'm okay. He's also taken Liam to MRIs and EEGs. I can take Liam to these appointments and I will when Zachary is not able to but Zachary can handle the IVs and blood draws a lot better than I can so I let him do that.
Throughout elementary school and into middle and high school I was heavily involved in tutoring. This continued in college in a different way as I earned my education degree. I am ashamed to say this but I'm going to anyway. I was always so impatient with students who had a hard time learning. I remember thinking to myself, I would lose my mind if I had a kid like this one day. As I got older and realized there are many reasons and causes for kids to have a hard time grasping concepts whether it be a difficult home life, lack of interest, psychological issues, learning disabilities, etc., I discovered that the child rarely had anything to do with it. And then I felt guilty. And then I grew fearful that because of this attitude I had had with these students, God would give me a child who had trouble learning. A lot of people like to say that God won't ever give you anything you can't handle. They think this is in the Bible somewhere because they've heard it said so many times but it's not. There are some verses on how to handle difficulties- Psalm 55:22 says "Cast your burden on the Lord and he will sustain you." In part of our favorite passage in the Bible, James says "...whenever you face trials of any kind, consider it nothing but joy because you know that the testing of your faith produces endurance and let endurance have its full effect, so that you may be mature and complete, lacking in nothing." And instead of hoping God won't give me trials that I feel I can't handle, I focus on internalizing these two truths. Having a child with learning troubles is something I can handle. I thought it wasn't but God taught me a lesson.
There has been a big push for more politically correct language- there's a difference between a "special needs kid" and a "kid with special needs." While studying education, I didn't get it at first- I used the appropriate term but I wasn't sure why there was such a distinction. Now I get it. Liam, before all else, is Liam. Not NF, not special needs, not Malia's brother, my son, etc. He is Liam. When you say "special needs kid," his special needs define him. Since I once did not understand the distinction, I will not be bothered by people who don't know the perfect way to word things- it's hard! I was thinking today how difficult it must be to be the President. There's nothing you can say that will make everyone happy- no matter what he says, someone will be terribly offended. So acceptance and tolerance is on the rise I would say as a whole. But there are still bullies. There are still kids who just say mean things for fun. Liam will probably have someone make fun of him if he doesn't learn something as quickly as others and if he has visible spots on his skin. As a mother, it makes me tear up writing this. And it makes me resolve to teach both of my children that their worth is not determined by what mean people say or what any people say for that matter.
Malia will grow up watching a big brother go through some difficulties that not all of their peers will go through. He will be stronger for them and she will learn lessons of resiliency and perseverance simply by watching him. I bet she will learn to stand up for others who are unfairly teased. I bet she will be sensitive to seeing others' pain and I bet she will grow to be a compassionate and loving young lady.
So, you see, Liam isn't in this on his own. He has the fierce love of his parents, sister, grandparents, uncles and other extended family. There's not a two year old around who is loved more than this little boy. He's not loved because he has NF. He's loved because he's Liam. Because God knew what he was doing when he formed Liam. He's loving, sweet, stubborn, funny, silly, mischievous, helpful, eager, and adorable all in proportions that make him uniquely him. Oh, and he has NF. But there are several reasons he has NF- some of which are clear now and some which will be revealed in time.
In addition to taking monthly pictures, we decided to tackle Liam's crazy hair. I've been suggesting we cut his hair for several weeks now but it's been so cold so we've been putting it off. Well- today was the day and here is a before and after!
But before we did all of this, we had a genetics appointment at Walter Reed. I am writing this on the 30th... almost two weeks after the actual day so I forgot that the appointment was the same day as Malia's pictures and Liam's hair cut. We found out "today" that Liam definitely has Neurofibromatosis Type 1. One younger doctor began the appointment by doing a quick exam and seeing if we had any questions. I told her we were expecting the results from Liam's NF test and she said the results were in and they were positive. She did a great job of giving us the information right away, not making us wait, but also giving them to us with compassion. I knew they were going to be positive. The geneticist in Jacksonville told us she had never seen a child Liam's age with the number of cafe au lait spots he had that did not have the disease. That along with his small size, large head circumference and delayed development- I knew in my heart he had NF. I had prepared myself to hear that they were positive. When she left the room to get the genetics expert, Zachary asked me if I was okay. There was this tiny hope that I had let enter my brain that they'd say he didn't have it. That all these other things were coincidences and that there was nothing to worry about. So I had to deal with that not being reality but I was okay. I was okay and I am okay because I know we can handle this.
I firmly believe that there is a reason Liam has NF. Yes, something strange happened in Liam's DNA that made this mutation occur. But there's a reason that happened. Well, many reasons.
There are hundreds of people who have prayed for Liam. Praying for Liam brought them closer to God for the few seconds or minutes they spent praying for him.
Several of Liam's therapists have told me that he was the highlight of their day- that they looked forward to his appointments because, while he can be very stubborn, he's always cute and 95% of the time he's such a sweetheart. So because of Liam's NF, he has brought joy to Jen's and Amanda's and Elle's and Janine's days. And with his progress, they've seen a direct result of what their hard work can do.
Other parents who have heard about what Liam goes through and what we, as his parents go through, have expressed to me that they can't imagine dealing with what we're dealing with. While I think part of them saying that is to be supportive and empathetic, I can tell that another part of it is them saying they are thankful this is not something they have to deal with so there are many parents who, even if for a moment, have been thankful that their children are healthy and gratitude is a wonderful thing.
Zachary doesn't talk a lot about his feelings and thoughts on Liam having NF. He mainly makes sure I'm okay. He's also taken Liam to MRIs and EEGs. I can take Liam to these appointments and I will when Zachary is not able to but Zachary can handle the IVs and blood draws a lot better than I can so I let him do that.
Throughout elementary school and into middle and high school I was heavily involved in tutoring. This continued in college in a different way as I earned my education degree. I am ashamed to say this but I'm going to anyway. I was always so impatient with students who had a hard time learning. I remember thinking to myself, I would lose my mind if I had a kid like this one day. As I got older and realized there are many reasons and causes for kids to have a hard time grasping concepts whether it be a difficult home life, lack of interest, psychological issues, learning disabilities, etc., I discovered that the child rarely had anything to do with it. And then I felt guilty. And then I grew fearful that because of this attitude I had had with these students, God would give me a child who had trouble learning. A lot of people like to say that God won't ever give you anything you can't handle. They think this is in the Bible somewhere because they've heard it said so many times but it's not. There are some verses on how to handle difficulties- Psalm 55:22 says "Cast your burden on the Lord and he will sustain you." In part of our favorite passage in the Bible, James says "...whenever you face trials of any kind, consider it nothing but joy because you know that the testing of your faith produces endurance and let endurance have its full effect, so that you may be mature and complete, lacking in nothing." And instead of hoping God won't give me trials that I feel I can't handle, I focus on internalizing these two truths. Having a child with learning troubles is something I can handle. I thought it wasn't but God taught me a lesson.
There has been a big push for more politically correct language- there's a difference between a "special needs kid" and a "kid with special needs." While studying education, I didn't get it at first- I used the appropriate term but I wasn't sure why there was such a distinction. Now I get it. Liam, before all else, is Liam. Not NF, not special needs, not Malia's brother, my son, etc. He is Liam. When you say "special needs kid," his special needs define him. Since I once did not understand the distinction, I will not be bothered by people who don't know the perfect way to word things- it's hard! I was thinking today how difficult it must be to be the President. There's nothing you can say that will make everyone happy- no matter what he says, someone will be terribly offended. So acceptance and tolerance is on the rise I would say as a whole. But there are still bullies. There are still kids who just say mean things for fun. Liam will probably have someone make fun of him if he doesn't learn something as quickly as others and if he has visible spots on his skin. As a mother, it makes me tear up writing this. And it makes me resolve to teach both of my children that their worth is not determined by what mean people say or what any people say for that matter.
Malia will grow up watching a big brother go through some difficulties that not all of their peers will go through. He will be stronger for them and she will learn lessons of resiliency and perseverance simply by watching him. I bet she will learn to stand up for others who are unfairly teased. I bet she will be sensitive to seeing others' pain and I bet she will grow to be a compassionate and loving young lady.
So, you see, Liam isn't in this on his own. He has the fierce love of his parents, sister, grandparents, uncles and other extended family. There's not a two year old around who is loved more than this little boy. He's not loved because he has NF. He's loved because he's Liam. Because God knew what he was doing when he formed Liam. He's loving, sweet, stubborn, funny, silly, mischievous, helpful, eager, and adorable all in proportions that make him uniquely him. Oh, and he has NF. But there are several reasons he has NF- some of which are clear now and some which will be revealed in time.
Saturday, June 7, 2014
June 6 = See Your Sister Day
Well I have a lot to write about concerning yesterday. First- we had a 3D ultrasound done and got to see our little girl! Malia likes to hold on to the umbilical cord. My interpretation of this is that she's going to be my snuggle bug... she already has a comfort object! I know 3D ultrasounds can be kind of creepy but if you're reading this you are interested in my little family so... oh well ;)
So I can't see much resemblance Liam and either of his parents but one mark I've made on Liam is... I had to wikipedia it... both of our philtrums (the vertical groove in the middle area of the upper lip, common to many mammals, extending from the nose to the upper lip) are very defined and you can see from the ultrasound that Malia's is too! Anyway- that was one exciting part of our day yesterday.
The other part of the day I wanted to write about was not so exciting. We were in target and I saw a girl who looked to be around 11 or 12 with cafe au lait spots all over her legs- which if you're reading this you probably already know cafe au lait spots often mean neurofibromatosis is likely to form and that Liam has several of them. She turned around and she also had a lot of spots on her face. My first reaction was- thank goodness Liam doesn't have all those spots and then I realized this girl probably didn't have all those spots when she was his age- it's common for them to increase with time- so it's possible he will have spots like that. So I began to cry. In target. Part of me wanted to ask her when those spots developed and I was hoping she'd say at an age Liam has already passed. But I was too busy crying- I couldn't compose myself enough to put my questions into tactful words.
I was ashamed of myself for crying. Most of the time I don't think about Liam's probable NF diagnosis. When I see his big cafe au lait spot while changing his diaper I'll reassure myself it's okay and I move on. But I'm gonna guess this is the 3rd time I've let it all sink in and let myself feel the apprehension that I think is completely normal. Liam is the cutest thing I've ever seen and spots on his face are not going to change that. But it will change the way other people look at him. People in target will notice something different and they will stare. Some jerk kid in middle school is going to make fun of him if his legs are covered in brown spots. And as a mother, I don't want that for him. I don't want him to be part of the 50% of NF patients who also deal with learning disorders. I don't want anything to be difficult for him; I want him to sail through life and never struggle.
But then I remembered a couple of verses (James 1:2-3) that we read over and over again when we were in the hospital after Liam had his seizures. "Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance." And reading this reminds me of how much I've grown from enduring trials. I think of how much of a control freak I was before all of the random underways and duty nights that come with being a Navy wife. I think of how anxious I was about everything until Liam was born and almost immediately taken to the NICU. How much better of a parent I am now being able to stay calm in most situations than I would have been had I not gone through these trials. And so I will be strong for my boy. I will remind myself that trials produce perseverance and build character. Children look at their parents' reactions before they react- we see this when he falls down or when he puts the puzzle piece in the right place. He will cry more if we look scared and he will get more excited if we clap for him. The same will apply in the trials that will come with NF- whatever they may be.
We have a book that we bought when I was pregnant with Liam called 100 Bible Verses to Bless Your Baby Boy and we read a page to him every night before he goes to bed. I'm really into building traditions now- even though they may not mean anything to him now- so that when it does start to make sense and mean something, it's already routine. Here's today's reading:
So I can't see much resemblance Liam and either of his parents but one mark I've made on Liam is... I had to wikipedia it... both of our philtrums (the vertical groove in the middle area of the upper lip, common to many mammals, extending from the nose to the upper lip) are very defined and you can see from the ultrasound that Malia's is too! Anyway- that was one exciting part of our day yesterday.
The other part of the day I wanted to write about was not so exciting. We were in target and I saw a girl who looked to be around 11 or 12 with cafe au lait spots all over her legs- which if you're reading this you probably already know cafe au lait spots often mean neurofibromatosis is likely to form and that Liam has several of them. She turned around and she also had a lot of spots on her face. My first reaction was- thank goodness Liam doesn't have all those spots and then I realized this girl probably didn't have all those spots when she was his age- it's common for them to increase with time- so it's possible he will have spots like that. So I began to cry. In target. Part of me wanted to ask her when those spots developed and I was hoping she'd say at an age Liam has already passed. But I was too busy crying- I couldn't compose myself enough to put my questions into tactful words.
I was ashamed of myself for crying. Most of the time I don't think about Liam's probable NF diagnosis. When I see his big cafe au lait spot while changing his diaper I'll reassure myself it's okay and I move on. But I'm gonna guess this is the 3rd time I've let it all sink in and let myself feel the apprehension that I think is completely normal. Liam is the cutest thing I've ever seen and spots on his face are not going to change that. But it will change the way other people look at him. People in target will notice something different and they will stare. Some jerk kid in middle school is going to make fun of him if his legs are covered in brown spots. And as a mother, I don't want that for him. I don't want him to be part of the 50% of NF patients who also deal with learning disorders. I don't want anything to be difficult for him; I want him to sail through life and never struggle.
But then I remembered a couple of verses (James 1:2-3) that we read over and over again when we were in the hospital after Liam had his seizures. "Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance." And reading this reminds me of how much I've grown from enduring trials. I think of how much of a control freak I was before all of the random underways and duty nights that come with being a Navy wife. I think of how anxious I was about everything until Liam was born and almost immediately taken to the NICU. How much better of a parent I am now being able to stay calm in most situations than I would have been had I not gone through these trials. And so I will be strong for my boy. I will remind myself that trials produce perseverance and build character. Children look at their parents' reactions before they react- we see this when he falls down or when he puts the puzzle piece in the right place. He will cry more if we look scared and he will get more excited if we clap for him. The same will apply in the trials that will come with NF- whatever they may be.
We have a book that we bought when I was pregnant with Liam called 100 Bible Verses to Bless Your Baby Boy and we read a page to him every night before he goes to bed. I'm really into building traditions now- even though they may not mean anything to him now- so that when it does start to make sense and mean something, it's already routine. Here's today's reading:
You are a Miracle in God's Eyes
Every perfect gift is from God.
These good gifts come down from the
Creator of the sun, moon, and stars.
James 1:17
When you came into the world, a miracle was
created by God. The gift of life was given to you.
As you grow and experience life, you will have
moments of laughter, tears, sickness and good
health. Each one of these is a stepping stone to
becoming the person God has designed you to be.
How appropriate. He didn't pay attention to a word we read but it was just what I needed to hear.
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