The other day I got a CaringBridge notification for Christopher. A young man I had recently found through another NF moms post on Facebook. He was not doing well. I went to his page and read his story, journal updates, sent a card in answer to a request from his mom and posted comments. (maybe it is just me but I love and find comfort in comments people leave me)
Christopher was Cindy's only child and son. My heart clenched when I read that. Kyle also my only child and a son I felt an immediate connection with Cindy. Every time I got a notification over the last month I feared the worse for sweet Cindy and the rest of Christopher's family.
That final notice came a few days ago. Sunday the 18th, sweet Christopher passed away. His mother writes such lovely updates. You can read his story http://www.caringbridge.org/visit/chrismcclaskey. Christopher was diagnosed with a brain tumor due to a complication of NF about 3 1/2 years ago. And fought a courageous battle since.
As I read this Monday I cried, sobbed, tried not to think of all the what if's our own uncertain future brings. Monday I hugged Kyle and kissed him every moment I could all the while trying to hide the tears forming in my eyes. I caught myself fussing at Kyle Monday night and felt so guilty. Thinking Cindy would love one more chance to "fuss" at Christopher, to then immediately hold him tight.
This is the 3rd person in the 2 1/2 years since Kyle's diagnoses that I have "met" someone in the online NF community to pass from NF. They have ALL been to young! Ages ranging 14-23, to soon. I think, at least for me when I hear of someone in the NF community passing away my heart seizes up at the fear that grips me. And then I get fighting mad! ha ha I push forward, raising awareness, offering support where and when I can. And then I hold Kyle a little longer, a little tighter. Wishing with all my heart I could bottle up these moments so that I never forget. Wishing I could somehow hang on to the feeling of him in my arms, his little arms around my neck hugging me tight. Saying "Mom, you are my biggest friend".
I cant believe Kyle is already 4 1/2. Where has the time gone? As I tried to cuddle/rock him like I did when he was a baby I told him to stop growing up. He looked at me puzzled and asked why. I told him cause I missed my baby Kyle. He patted my shoulder and said its ok mom! Oh to have the quick reassurance that he has.
It has been said before, time is precious, or you don't know what you have until it is gone. That is so true and on one hand I hate that those of us in the NF community are reminded often that we cant take anything for granted. And on the other hand how great is it to be reminded so often that we hug our little ones so often and comfort others in need.
This week I have been pondering on this a lot. I can not change the future with fruitless worry. I can not control how long Kyle is here on this earth only God can. All I can do is treasure every moment like it is more precious than gold because it is, all I can do is fight the hardest I ever have for him, all I can do is love him, plan for a long and healthy life and take comfort in knowing he is mine fore eternity.
Kyle mom loves you more than you will ever know. I think I love you more than even I will ever know. Some days my heart is so full of love and pride (you know the good kind) that I feel it will burst. I am so happy and filled with joy it is dizzying and I have to catch my breath. You bring nothing but joy where ever you go, whatever you do and to whom ever you come in contact with. I cant imagine life without you and feel so blessed that I get to call you son.
Wednesday, September 21, 2011
Tuesday, September 13, 2011
Sneaky NF
You sneak in here
You sneak in there
Why NF do you sneak in everywhere
I have talked before about being a mom with a child who has special needs. We get the priviliedg of worry even more over our precious children.
One thing that has been on my mind lately (after a discussion with Kyle's teacher) is that with NF many times it is not obvious to others that anything is out of the ordinary. I should say depending on how NF effects you that is. We have all certainly heard the stories about the visible tumors that make it hard to be mobile, the ones you cant cover up and the ones that others can still under the clothes due to their size. But when NF effects you internally others do not know. After we stopped chemo I kind of felt like some "forgot" Kyle had a brain tumor. Since he had no outward signs they felt life should be smooth sailing.
But I know he still has a brain tumor, I know he is still blind in one eye. I can see the struggle he has going up and down stairs. I know it isnt age appropriate for him to turn and crawl down stairs. But others do not know that my boy cant see out of one eye. They see his cute glasses and call him the Jerry Maquire kid. (yeah we get that a lot! ha ha)
In the beginning of 2011 I started noticing some little things that were becoming more difficult for Kyle. Nothing kept him down that is for sure and he figured out a way around things. And most people wouldnt have even noticed. But I did, I am his mom, I know. I asked his Oncology team in the spring if they thought we needed to get him evaluated. I wasnt sure if all 4 year olds are still unstable on their feet and having problems with depth perception. We had him evaluated by the Arizona Foundation For The Blind when he was 2 and we started chemo. At that time he amazed everyone and they couldnt believe he was blind in one eye. So since his team in the Spring said just keep an eye on it I figured it must be normal.
The Kyle started school in August. As fate would have it he was assigned to the classroom with stairs and not the one with a ramp. Almost immediately I noticed the difficulty he was having going up and down and then it was cemented when I saw the other kids running up and down then, no holding on now crawling or hesitation. I know it was time to get him evaluated.
I first emailed my good friend Diane S. who has worked for years as an Certified Occupational Therapist Assistant. She is someone I look up to, admire, value and respect her opinion. I hoped she would give me some things to do at home and that he should be fine. But she encouraged me to do what I knew I really needed to do. Contact the school district and get him evaluated. So I spoke with his teacher and got the number to call. She didnt know he was blind in one eye. Pretty sure I wrote that in all the registration forms. But it was nice that she didnt know anything was wrong. (again with no one being able to tell something was different)
So I called the number she gave me and I dont know who I thought would answer but it kind of took me back when they answered Special Education Department. It is weird because I know by definiation I have a son with special needs but Kyle acts so normally that even I sometimes briefly forget he would be considered special needs. So we made an appointment for October, he is also up for another MRI in October.
So I anxiously wait for the evaluation, eye exam, MRI and meeting with the Oncologist/Geneticist all in one month. Its going to be a busy month!! ha ha
I am still putting off trying to learn Braille. I still feel I need to do it. But man oh man it seems so overwhelming. Such a monumental task. I started reading up on it a little a few months ago. I know I just need to dive in feet first, just the way Kyle would do it!! That boy has a love of learning, a love of life that is catching.
You sneak in there
Why NF do you sneak in everywhere
I have talked before about being a mom with a child who has special needs. We get the priviliedg of worry even more over our precious children.
One thing that has been on my mind lately (after a discussion with Kyle's teacher) is that with NF many times it is not obvious to others that anything is out of the ordinary. I should say depending on how NF effects you that is. We have all certainly heard the stories about the visible tumors that make it hard to be mobile, the ones you cant cover up and the ones that others can still under the clothes due to their size. But when NF effects you internally others do not know. After we stopped chemo I kind of felt like some "forgot" Kyle had a brain tumor. Since he had no outward signs they felt life should be smooth sailing.
But I know he still has a brain tumor, I know he is still blind in one eye. I can see the struggle he has going up and down stairs. I know it isnt age appropriate for him to turn and crawl down stairs. But others do not know that my boy cant see out of one eye. They see his cute glasses and call him the Jerry Maquire kid. (yeah we get that a lot! ha ha)
In the beginning of 2011 I started noticing some little things that were becoming more difficult for Kyle. Nothing kept him down that is for sure and he figured out a way around things. And most people wouldnt have even noticed. But I did, I am his mom, I know. I asked his Oncology team in the spring if they thought we needed to get him evaluated. I wasnt sure if all 4 year olds are still unstable on their feet and having problems with depth perception. We had him evaluated by the Arizona Foundation For The Blind when he was 2 and we started chemo. At that time he amazed everyone and they couldnt believe he was blind in one eye. So since his team in the Spring said just keep an eye on it I figured it must be normal.
The Kyle started school in August. As fate would have it he was assigned to the classroom with stairs and not the one with a ramp. Almost immediately I noticed the difficulty he was having going up and down and then it was cemented when I saw the other kids running up and down then, no holding on now crawling or hesitation. I know it was time to get him evaluated.
I first emailed my good friend Diane S. who has worked for years as an Certified Occupational Therapist Assistant. She is someone I look up to, admire, value and respect her opinion. I hoped she would give me some things to do at home and that he should be fine. But she encouraged me to do what I knew I really needed to do. Contact the school district and get him evaluated. So I spoke with his teacher and got the number to call. She didnt know he was blind in one eye. Pretty sure I wrote that in all the registration forms. But it was nice that she didnt know anything was wrong. (again with no one being able to tell something was different)
So I called the number she gave me and I dont know who I thought would answer but it kind of took me back when they answered Special Education Department. It is weird because I know by definiation I have a son with special needs but Kyle acts so normally that even I sometimes briefly forget he would be considered special needs. So we made an appointment for October, he is also up for another MRI in October.
So I anxiously wait for the evaluation, eye exam, MRI and meeting with the Oncologist/Geneticist all in one month. Its going to be a busy month!! ha ha
I am still putting off trying to learn Braille. I still feel I need to do it. But man oh man it seems so overwhelming. Such a monumental task. I started reading up on it a little a few months ago. I know I just need to dive in feet first, just the way Kyle would do it!! That boy has a love of learning, a love of life that is catching.
Tuesday, August 30, 2011
CAMP TIME!!!!!!
Ok this post is a little old but I am finally getting around to posting it.....
Last week (July 16th)we took Kyle to his (well all of ours first) first Camp for NF. We attended a family camp put on by NF Arizona Incorporated. Camp NFirework!!! It was awesome. It was held up in beautiful Prescott! We were able to attend Saturday night-Monday. We already cant wait for next year!
I truly never would have guessed how much a couple days could change so much. The people we met were incredible. What an amazing support group. Everyone was so nice and genuine. We even received several offers for new babysitters (they even gave us all their contact info) Bennett and I are dreaming of possible date nights now!! ha ha
You felt such a connection as you knew of these families were all effected with NF also. They understood the anxiety, the medical procedures and all the doctors appointments. They understand the daily dealing with NF because they have lived it. There is a certain kind of quiet power and peace that comes from knowing that. At times nothing even needs to be said because it is felt.
Kyle made a great friend while there, Jack. Jack and Kyle were inseparable from day one. From the minute they met. Kyle ran up to Jack and showed him his arm. He then asked Jack do you have spots like me? And gave him a big hug!! Jack doesnt have NF but his mom and older brother does. They spent the rest of camp together and sharing their treasures with each other. Kyle loves Glo Sticks, so we had taken up several. Kyle got the green ones (of course) and Jack got all the yellow ones. Kyle still asks for Jack and we are going to get those little buddies together for sure.
I am so grateful for camps like this and now I am even more excited to send him to camps when he is older and as we continue to attend the family camps. I can not even imagine how much strength, growth and life long friendships that await Kyle at these camps. It truly gives me the chills to think about.
We also received Kyle's acceptance letter into the Prekindergarten program! I am SO excited!!!! I love love school. I have a passion for school and even weirder I have a passion for school supplies!! ha ha No really, ask anyone! I have already gotten Kyle's backpack and some supplies, I cant wait for open house!!! I have been working with him this summer and he can spell his name and spell mom & dad, count to 15, can do simple addition and subtraction, we are working on telling time and even throwing in some science and are working on the body. Kyle is fascinated by the body and his bones, blood, etc. I imagine this comes from all his doctors appointments and procedures. Love that little kid!!!!
That is about all for now. Kyle doesnt have an MRI or eye appointment until October!!! But we will continue to update (especially since ASU Football season is getting ready to kick off in about a month!!!!)
We hope you all have enjoyed a great summer so far!!!
The Oden's
Last week (July 16th)we took Kyle to his (well all of ours first) first Camp for NF. We attended a family camp put on by NF Arizona Incorporated. Camp NFirework!!! It was awesome. It was held up in beautiful Prescott! We were able to attend Saturday night-Monday. We already cant wait for next year!
I truly never would have guessed how much a couple days could change so much. The people we met were incredible. What an amazing support group. Everyone was so nice and genuine. We even received several offers for new babysitters (they even gave us all their contact info) Bennett and I are dreaming of possible date nights now!! ha ha
You felt such a connection as you knew of these families were all effected with NF also. They understood the anxiety, the medical procedures and all the doctors appointments. They understand the daily dealing with NF because they have lived it. There is a certain kind of quiet power and peace that comes from knowing that. At times nothing even needs to be said because it is felt.
Kyle made a great friend while there, Jack. Jack and Kyle were inseparable from day one. From the minute they met. Kyle ran up to Jack and showed him his arm. He then asked Jack do you have spots like me? And gave him a big hug!! Jack doesnt have NF but his mom and older brother does. They spent the rest of camp together and sharing their treasures with each other. Kyle loves Glo Sticks, so we had taken up several. Kyle got the green ones (of course) and Jack got all the yellow ones. Kyle still asks for Jack and we are going to get those little buddies together for sure.
I am so grateful for camps like this and now I am even more excited to send him to camps when he is older and as we continue to attend the family camps. I can not even imagine how much strength, growth and life long friendships that await Kyle at these camps. It truly gives me the chills to think about.
We also received Kyle's acceptance letter into the Prekindergarten program! I am SO excited!!!! I love love school. I have a passion for school and even weirder I have a passion for school supplies!! ha ha No really, ask anyone! I have already gotten Kyle's backpack and some supplies, I cant wait for open house!!! I have been working with him this summer and he can spell his name and spell mom & dad, count to 15, can do simple addition and subtraction, we are working on telling time and even throwing in some science and are working on the body. Kyle is fascinated by the body and his bones, blood, etc. I imagine this comes from all his doctors appointments and procedures. Love that little kid!!!!
That is about all for now. Kyle doesnt have an MRI or eye appointment until October!!! But we will continue to update (especially since ASU Football season is getting ready to kick off in about a month!!!!)
We hope you all have enjoyed a great summer so far!!!
The Oden's
Tuesday, July 26, 2011
CAMP TIME!!!!!!
Last week we took Kyle to his (well all of ours first) first Camp for NF. We attended a family camp put on by NF Arizona Incorporated. Camp NFirework!!! It was awesome. It was held up in beautiful Prescott! We were able to attend Saturday night-Monday. We already cant wait for next year!
I truly never would have guessed how much a couple days could change so much. The people we met were incredible. What an amazing support group. Everyone was so nice and genuine. We even received several offers for new babysitters (they even gave us all their contact info) Bennett and I are dreaming of possible date nights now!! ha ha
You felt such a connection as you knew of these families were all effected with NF also. They understood the anxiety, the medical procedures and all the doctors appointments. They understand the daily dealing with NF because they have lived it. There is a certain kind of quiet power and peace that comes from knowing that. At times nothing even needs to be said because it is felt.
Kyle made a great friend while there, Jack. Jack and Kyle were inseparable from day one. From the minute they met. Kyle ran up to Jack and showed him his arm. He then asked Jack do you have spots like me? And gave him a big hug!! Jack doesnt have NF but his mom and older brother does. They spent the rest of camp together and sharing their treasures with each other. Kyle loves Glo Sticks, so we had taken up several. Kyle got the green ones (of course) and Jack got all the yellow ones. Kyle still asks for Jack and we are going to get those little buddies together for sure.
I am so grateful for camps like this and now I am even more excited to send him to camps when he is older and as we continue to attend the family camps. I can not even imagine how much strength, growth and life long friendships that await Kyle at these camps. It truly gives me the chills to think about.
We also received Kyle's acceptance letter into the Prekindergarten program! I am SO excited!!!! I love love school. I have a passion for school and even weirder I have a passion for school supplies!! ha ha No really, ask anyone! I have already gotten Kyle's backpack and some supplies, I cant wait for open house!!! I have been working with him this summer and he can spell his name and spell mom & dad, count to 15, can do simple addition and subtraction, we are working on telling time and even throwing in some science and are working on the body. Kyle is fascinated by the body and his bones, blood, etc. I imagine this comes from all his doctors appointments and procedures. Love that little kid!!!!
That is about all for now. Kyle doesnt have an MRI or eye appointment until October!!! But we will continue to update (especially since ASU Football season is getting ready to kick off in about a month!!!!)
We hope you all have enjoyed a great summer so far!!!
The Oden's
I truly never would have guessed how much a couple days could change so much. The people we met were incredible. What an amazing support group. Everyone was so nice and genuine. We even received several offers for new babysitters (they even gave us all their contact info) Bennett and I are dreaming of possible date nights now!! ha ha
You felt such a connection as you knew of these families were all effected with NF also. They understood the anxiety, the medical procedures and all the doctors appointments. They understand the daily dealing with NF because they have lived it. There is a certain kind of quiet power and peace that comes from knowing that. At times nothing even needs to be said because it is felt.
Kyle made a great friend while there, Jack. Jack and Kyle were inseparable from day one. From the minute they met. Kyle ran up to Jack and showed him his arm. He then asked Jack do you have spots like me? And gave him a big hug!! Jack doesnt have NF but his mom and older brother does. They spent the rest of camp together and sharing their treasures with each other. Kyle loves Glo Sticks, so we had taken up several. Kyle got the green ones (of course) and Jack got all the yellow ones. Kyle still asks for Jack and we are going to get those little buddies together for sure.
I am so grateful for camps like this and now I am even more excited to send him to camps when he is older and as we continue to attend the family camps. I can not even imagine how much strength, growth and life long friendships that await Kyle at these camps. It truly gives me the chills to think about.
We also received Kyle's acceptance letter into the Prekindergarten program! I am SO excited!!!! I love love school. I have a passion for school and even weirder I have a passion for school supplies!! ha ha No really, ask anyone! I have already gotten Kyle's backpack and some supplies, I cant wait for open house!!! I have been working with him this summer and he can spell his name and spell mom & dad, count to 15, can do simple addition and subtraction, we are working on telling time and even throwing in some science and are working on the body. Kyle is fascinated by the body and his bones, blood, etc. I imagine this comes from all his doctors appointments and procedures. Love that little kid!!!!
That is about all for now. Kyle doesnt have an MRI or eye appointment until October!!! But we will continue to update (especially since ASU Football season is getting ready to kick off in about a month!!!!)
We hope you all have enjoyed a great summer so far!!!
The Oden's
Wednesday, March 9, 2011
Bad eye exams, Birthdays and More....
I know I have been terribly remiss in posting on this blog. So I will try to get caught up here.....
My first fundraiser for Children's Tumor Foundation was this past Saturday. it was Spring For A Cure Family Festival. We had games, petting zoo/pony rides, bouncy houses, food, craft vendors and a balloon garden hosting over 9,000 balloons!!!! And to date have raised $1450 and I still have some checks coming in. I was very happy for my first efforts and I am already working on my next fundraiser!!!!
In January Kyle had an eye exam. I was nervous and kind of hating on the Opthamologist. ( I know not his fault, but I NEVER seem to get good news when I go.) Again I had to go by myself, never fun. They did the exam and wanted to dilate his eyes because the vision in his left eye had gotten worse. Talk about fear reaching out and gripping my heart. Why does it seem that those 20 minutes in the waiting room waiting for the dilation always seem like the longest in my life. So many emotions and thoughts were running through my head. Well when we went back they couldn't see anything so our eye doc was going to call and talk to the Oncologist about moving up his MRI. His vision in the left eye went from 20/20 6 months ago to 20/30 in Jan. I know that doesn't seem like much but when the right eye is 20/800 every little bit is hard to take. They moved up his MRI a couple weeks. Kyle did pretty good with the MRI and was talking about how they were going to take pictures of his brain. Such a brave little boy....
We then met with his Oncologist & Geneticist in early Feb. The MRI showed no new growth and that the left optical nerve was clear. So they are chalking it up to him being 3 and just having a bad eye exam. But it change our appointment schedule from every 6 months eye exam to every 3 months eye exam. And for a couple weeks it was really hard. One thing we had noticed was that he was squinting a lot more with his right eye. And seemed to be having problems. So we talked to the Geneticist about this and basically Kyle has just enough vision in his right eye to be causing him focusing problems. He gave us a few things to teach him at home and Kyle had already started doing some of them. But if he continues to have problems the doctor said we might need to patch the bad eye so it wont interfere. I just broke down, just starting sobbing. I have gotten much worse news over the last 2 years and felt a little silly for breaking down at what would appear to be something small. But I guess part of it was that who knows what will continue to happen. I had a concern and come to find out it was valid. It is something else to keep an eye on (no pun intended). If my son needs a patch on top of glasses I will of course do it. But I will not lie I started getting mad, fists clinched, seeing red at the tumor mad. If the tumor had a face I wanted to punch it, I wanted to yell and scream and tell that darn tumor to get out of my sons head. It was kind of weird, I had honestly not had that emotion over the last 2 years. I admit I threw a couple things and did feel better. And then as we have done for 2 years picked up the pieces I could and moved on. What else could I do? Hang on to my anger? Who would that benefit, no one and certainly not my son who needs me. So melodramatics are over and we are doing fine now. :-)
My first fundraiser for Children's Tumor Foundation was this past Saturday. it was Spring For A Cure Family Festival. We had games, petting zoo/pony rides, bouncy houses, food, craft vendors and a balloon garden hosting over 9,000 balloons!!!! And to date have raised $1450 and I still have some checks coming in. I was very happy for my first efforts and I am already working on my next fundraiser!!!!
Today is also Kyle's 4th Birthday!!!! It hardly seems possible that my baby is 4. He informed me today that he is a very big boy now! But he did let me cuddle him for a minute. The above picture was right after we started chemo and he had just turned 2. Here is a picture from Saturday. I cant believe how much he has grown.......
Also after some encouragement from a dear friend I finally was able to finish a poem. I wanted to write something for Kyle, something of our journey. I hope you like it....
I remember it well, it was on that cold January day
the vision is gone and wont come back is all they could say
The Tumor was still there the damage was done
What has happened oh my dear son
We put you through chemo with great hope
You are so young and precious how do I cope
I fight for you, I fight like no other
Because that is what I will do, because I am your mother
There is no cure, the future uncertain
It pains me to think of how you might be hurtin
At times it grips my heart, the unknown, the fear
I hold you close, you are my everything my dear
But the love for life shines in your eyes
And turns the dreary clouds to blue skies
So on this cold January day
I love you forever and ever I say
We will face the uncertain future together
I will fight for you in all kinds of weather
We will fight for a cure one day
Because then over NF we will have the final say
the vision is gone and wont come back is all they could say
The Tumor was still there the damage was done
What has happened oh my dear son
We put you through chemo with great hope
You are so young and precious how do I cope
I fight for you, I fight like no other
Because that is what I will do, because I am your mother
There is no cure, the future uncertain
It pains me to think of how you might be hurtin
At times it grips my heart, the unknown, the fear
I hold you close, you are my everything my dear
But the love for life shines in your eyes
And turns the dreary clouds to blue skies
So on this cold January day
I love you forever and ever I say
We will face the uncertain future together
I will fight for you in all kinds of weather
We will fight for a cure one day
Because then over NF we will have the final say
Sunday, December 5, 2010
This is Kyle's dad doing the update this time.
ASU football season is over. We are very thankful for FOJ and ASU football for everything.
We had 2 tv interviews one local for Fox Sports AZ and the other for a program called Running with the Pac. A great article from a great new friend Nick. http://arizonastate.rivals.com./content.asp?CID=1160079
Then at the UCLA game fox sports did a half time spot on him. During the UA game Rece Davis gave a "shout out" on him. When we got selected with the team it was not in our wildest dreams for all of this. We are very happy to get FOJ, ASU football, and NF information out there to people who have never heard of it.
Kyle is doing well and enjoys seeing his "Sparky Friends" and running all over the field before the game. Thank you to all the players who took time to come over and play with him at home and on the field.
I now have 3 teams in college football. 1. Texas Aggies. 2. ASU. 3. Whoever plays t.u.
Thank you all for your support and prayers. We are forever thankful for everyone who reads this and enjoys the updates.
ASU football season is over. We are very thankful for FOJ and ASU football for everything.
We had 2 tv interviews one local for Fox Sports AZ and the other for a program called Running with the Pac. A great article from a great new friend Nick. http://arizonastate.rivals.com./content.asp?CID=1160079
Then at the UCLA game fox sports did a half time spot on him. During the UA game Rece Davis gave a "shout out" on him. When we got selected with the team it was not in our wildest dreams for all of this. We are very happy to get FOJ, ASU football, and NF information out there to people who have never heard of it.
Kyle is doing well and enjoys seeing his "Sparky Friends" and running all over the field before the game. Thank you to all the players who took time to come over and play with him at home and on the field.
I now have 3 teams in college football. 1. Texas Aggies. 2. ASU. 3. Whoever plays t.u.
Thank you all for your support and prayers. We are forever thankful for everyone who reads this and enjoys the updates.
Sunday, October 24, 2010
My Heart is Full.......
My heart is full today with thoughts of NF. As I reflect on my life and the path NF has taken my family my heart and mind cant help thinking of the amazing people I have met. Amazing women that help lift me and inspire that if it werent for NF would never be in my life.
I have been working my fingers to the bone lately it seems like working on my fundraiser Spring For A Cure. http://www.springforacure.blogspot.com/ some days I feel like I am talking to a wall. Some days I have such fierce passion to help find a cure that I get tears in my eyes and I feel like I am stronger than Wonder Woman. I am Wonder NF Mom!!!
As I reflect on what inspires me and what gives me strength to continue valiently on this fight 3 things come to mind as to where my inspiration comes, what feeds that inner fire in my belly?......
1) First and foremost it is my love and faith in my Heavenly Father. I know he will not give us more than we can handle. And that through our trials he brings great blessings as well. Those blessings (in part) are #2 & #3. I know that he loves me and wants to see me be the person he knows I can be. He knows my full potentional and his trials are to help me reach that potential. He knows the greater picture and even though at times I dont see how good could come from a 2 yr old having a tumor I have faith that he does. And I have faith that through me I can help bring some good about.
2) Kyle. When I think of what he has gone through and how much he loves life and just has fun and is always ready to go I get teary eyed. I dont know if there could be prouder momma out there. He is the greatest blessing in my life. Sometimes I cant believe the lord has trusted him to me. I feel a great weight in being the mom he needs me to be. How can I not fight to make his future brighter? He loves me unconditionally. I will fight for him every inch of the way.
3) NF Moms. NF Moms are some of the most amazing women you will ever meet. Our kids have been diagnosed with a disorder that not many have heard of. Our kids have been diagnosed with a disorder that various from person to person, a disorder that can go from mild to fatal within a short amount of time. NF Moms find time to support other moms when they are crying about the uncertainty of their own children. NF moms will get in NF's face and raise $40K at one fundraiser for research in the name of their daughter, NF moms will talk to total strangers to spread NF awareness. And I say NF moms but dont be fooled there are NF Aunts, Cousins, Sisters that get in and get their hands dirty all to support the ones we love with NF. I have personally received such great strength and support from women across the country. Woman I have never met but I know they are there for me and I hope they know I am always here for them.
There is one NF mom that has been on my mind a lot lately. She is a very dear sweet NF mom that has NF herself. Her son was also diagnosed with NF. He is her life. She lives every minute for him even though it has been almost 2 years since he earned his angels wings. But Noelle is amazing. She took her trial and pain of losing her son and created a foundation in her sons memory, http://www.stuffedanimalministry.org/ . She collects new stuffed animals and sends them to children with NF, also provides them to the Police and even the FBI to give to children in crisis. As of February of this year she has given away over 400 animals.
With NF 3-5% of the cases turn malignant and these brave children/adults can lose the battle with NF. I have met so many amazing families affecting by NF and all cases are so different.
Everyone can do something. One mom is auctioning her daughters drawings, others are are hosting support groups, helping inform the community at booths at community events, others are holding fundraisers. If you dont have time or money to do some of these things, never fear there is something you can do.....Educate!!!!
I have been working my fingers to the bone lately it seems like working on my fundraiser Spring For A Cure. http://www.springforacure.blogspot.com/ some days I feel like I am talking to a wall. Some days I have such fierce passion to help find a cure that I get tears in my eyes and I feel like I am stronger than Wonder Woman. I am Wonder NF Mom!!!
As I reflect on what inspires me and what gives me strength to continue valiently on this fight 3 things come to mind as to where my inspiration comes, what feeds that inner fire in my belly?......
1) First and foremost it is my love and faith in my Heavenly Father. I know he will not give us more than we can handle. And that through our trials he brings great blessings as well. Those blessings (in part) are #2 & #3. I know that he loves me and wants to see me be the person he knows I can be. He knows my full potentional and his trials are to help me reach that potential. He knows the greater picture and even though at times I dont see how good could come from a 2 yr old having a tumor I have faith that he does. And I have faith that through me I can help bring some good about.
2) Kyle. When I think of what he has gone through and how much he loves life and just has fun and is always ready to go I get teary eyed. I dont know if there could be prouder momma out there. He is the greatest blessing in my life. Sometimes I cant believe the lord has trusted him to me. I feel a great weight in being the mom he needs me to be. How can I not fight to make his future brighter? He loves me unconditionally. I will fight for him every inch of the way.
3) NF Moms. NF Moms are some of the most amazing women you will ever meet. Our kids have been diagnosed with a disorder that not many have heard of. Our kids have been diagnosed with a disorder that various from person to person, a disorder that can go from mild to fatal within a short amount of time. NF Moms find time to support other moms when they are crying about the uncertainty of their own children. NF moms will get in NF's face and raise $40K at one fundraiser for research in the name of their daughter, NF moms will talk to total strangers to spread NF awareness. And I say NF moms but dont be fooled there are NF Aunts, Cousins, Sisters that get in and get their hands dirty all to support the ones we love with NF. I have personally received such great strength and support from women across the country. Woman I have never met but I know they are there for me and I hope they know I am always here for them.
There is one NF mom that has been on my mind a lot lately. She is a very dear sweet NF mom that has NF herself. Her son was also diagnosed with NF. He is her life. She lives every minute for him even though it has been almost 2 years since he earned his angels wings. But Noelle is amazing. She took her trial and pain of losing her son and created a foundation in her sons memory, http://www.stuffedanimalministry.org/ . She collects new stuffed animals and sends them to children with NF, also provides them to the Police and even the FBI to give to children in crisis. As of February of this year she has given away over 400 animals.
With NF 3-5% of the cases turn malignant and these brave children/adults can lose the battle with NF. I have met so many amazing families affecting by NF and all cases are so different.
Everyone can do something. One mom is auctioning her daughters drawings, others are are hosting support groups, helping inform the community at booths at community events, others are holding fundraisers. If you dont have time or money to do some of these things, never fear there is something you can do.....Educate!!!!
The single most important thing we can do is educate ourselves and educate others. I have always said "knowledge is power". We dont have to sit back and just accept NF. So please join me and Fight, Fight, Fight against NF!!!
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