Tag Archives: NF Walk

May 31, 2014 · 1:10 am

NF Awareness Month

Well, it came and went–May, as I forgot and was reminded yesterday–was NF Awareness month. It was also Autism Awareness month. I don’t find it necessary to tell you facts or stories of NF–you have already read my blog entries. So, I will end this NF Awareness month with something different–none of the talk, such as, “This is a side effect of medicine or tumor function;” But talk of living life with NF2–because, I will tell you plain, it has, is and will continue to change my life.

Once in a conversation with my friend Jess, we discussed our thoughts and feelings about the topic of researchers finding a cure for our disease. I thought about it for a long time and finally responded to her email, saying that I cannot imagine life without it. Please don’t consider me a strong person, because if anything, this disease knocks you down. There are more moments were I detest my own body, wishing that I was something more rather than being thankful for what I have–in other words, as my body continues to unwind, I feel left behind.

Yet looking back at the road thus far, I am aware that life has been filled with divine moments. Moments where God met me in my lowest state and helped me back to my feet, never leaving me behind. And so life continues–to the end, which is the beginning of Life.

He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.

Revelation 21:4

PS. I believe that God has given doctors and researchers the skills, resources and knowledge to help individuals suffering with illnesses, such as myself. Although at the current moment, there are no treatment options available for me, I still desire to walk with hope in the Cincinnati NF Walk, June 22nd, and support the further research of NF, along with those persons in which the research impacts through results, such as new treatments. If you would like to donate for this cause, there is still time: Team A Mile in Mel’s Shoes

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May 13, 2014 · 9:26 am

NF Walk 2014

Last summer, I had the opportunity to take part in the Children’s Tumor Foundation NF Walk. This fundraiser walk proceeds funding for continued awareness and research about the disease, as well as treatments for those individuals living with either NF1 or NF2. The Children’s Tumor Foundation selects cities across the states and holds this event all throughout the summer. Last summer, I got the information for the walk taking place in Cincinnati. It was more a spontaneous decision, but I was very humbled by all the support we quickly raised.

Participating in the walk was very special. At that point in time, I knew my options for treatments were getting slim, but never imagined the upcoming year that lay ahead of me. So while we were waiting for the walk to begin, we chatted with some other participants, who all had NF1. I was not surprised…I actually think that I was the only NF2 person there. Sitting down for a few minutes, Melissa came with the idea to write why we were taking part in the walk:

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When I learned that the NF Walk would again be in Cincinnati this coming June, I knew I would want to participate. Last year it took me an hour to walk the two-mile course…I used my walking sticks and towards the last stretch, depended on the arms of my sister and aunt. This year, my plan is to push a wheelchair–when I no longer have energy and need to rest, I will depend on someone else to help me to the finish point..walking the second mile.

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My Team name is”A Mile in Mel’s Shoes.” Through this blog, you have experienced the journey right alongside me–the sorrows and heartaches, questions and pondering thoughts, cheerfulness and laughter. Unlike the set course of the NF Walk, the next mile in my life is uncharted. It is a walk of faith. You have walked the first mile in my shoes–and I know you will be there, ready to continue walking another.

Linked below is the website for Team “A Mile in Mel’s Shoes.” If you are interested in joining me, my parents and two best friends since grade-school (coming for a weekend visit! 🙂 ), click on the “Join my team” button for registration. If you would like to give in donations, please select “Donate now.” You can also donate to a team member’s personal page (names are listed at the bottom of the Team page), where comments can also be written. All donations given on either goes towards the team goal.

Click here for link: Team A Mile in Mel’s Shoes 

If you would like to send a donation by check, please send it to the following address:

Children’s Tumor Foundation

120 Wall Street, 16th Floor

New York, NY 10005-3904

– – –

Thank you for walking with me. The journey continues, one step at a time.

 

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September 8, 2013 · 11:48 pm

Leaving room for “God Room”

In the Gospel of Mark, chapter 2, Jesus is continuing his ministry of teaching the people and performing miracles. At Capernaum, Jesus was at a house where the crowds of people came in at so much abundance that there was no room to get into the house, let alone by the door.

There were four friends who had a lame friend. Because they could not get through the main entrance, these four friends carried the lame friend to the roof, made a hole in the roof, and lowered their friend right to the feet of Jesus. Seeing their faith, Jesus healed this man both spiritually and physically:

Which is easier to say to the sick man, ‘Your sins are forgiven,’ or to say, ‘Get up, take your bed, and start to walk?’ I am doing this so you may know the Son of Man has power on earth to forgive sins.” He said to the sick man who could not move his body, “I say to you, ‘Get up. Take your bed and go to your home.’” At once the sick man got up and took his bed and went away.

Mark 2:9-12a, NLT

Today, childhood friends from my hometown, sister and brother-in-law, and friends from college days walked the Children’s Tumor Foundation NF Walk in Denver, Colorado. Their walking as a team and raising support on my behalf for the foundation and its future research made me think of the four friends of the lame man. They walked with the same hope as any persons living with a disease: that someday there will be a cure. Right now there is no cure for my disease (that circumferences NF1 as well.) Sometimes these walks for diseases seem so helpless in the bigger picture of the dying world, but what matters is keeping the focus on a hopeful future found in Jesus Christ.

But it is easy for me to lose sight of hope when all I see everyday is my body aging away. I don’t even know what to pray for at times. I know God has given knowledge and wisdom to countless research teams and doctors across the world to help patients such as myself;  I am very thankful for my team of doctors and therapists and trust their guidance. But even they can only do so much. It is our human nature. It is where “God Room” comes into faith.

I just finished Franklin Graham’s autobiography, Rebel with a Cause: Finally Comfortable Being Graham. I know I am about fourteen years behind from when it was written, but I am glad I took the time to read it as it taught me a few lessons in life and faith.

In one of the chapters, Franklin accompanies his friend Bob Pierce–founder of Samaritan’s Purse–on a world tour to see first hand the work that Bob ministered through Samaritan’s Purse to the hurting, sick and needy around the world by helping assist missionaries already in the areas. During the trip, Bob tells Franklin of leaving room for “God Room.”

‘God Room’ is when you see a need and it’s bigger than your human abilities to meet it. But you accept the challenge. You trust God to bring in the finances and the materials to meet that need.

I thought about this in my own life. With starting Physical and Occupational therapy a lot of my mindset has been, “These are things I can no longer do easily on my own or at all on my own.” It gets frustrating. So last night, I prayed for “God Room.” I didn’t go through my whole list of things wrong in my body. I figured God already knows that…but what I focused on was trust–trusting that God would (will continue) to meet my needs–both physically and spiritually. My physical condition is out of the ability of myself and doctors…but not out of God’s ability. With Him all is possible…and that means the “God Room” is pretty big!

*Graham, Franklin. Rebel with a Cause: Finally Comfortable Being Graham. Nashville: (Thomas Nelson, Inc., 1999.) Page 139.

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June 24, 2013 · 6:55 pm

Team: We Walk with Mel!

Dear Family and Friends,

Galatians 6:2 says, “Bear one another’s burdens…” and yesterday was another example of how you reflect this verse in my life as I walk with NF2. DSCN2250

I was never expecting to raise a lot of money, but through your generosity, I was able to help contribute over $800 to the NF Walk cause: research. As a whole, the Cincinnati NF Walk raised a few hundred d0llars over their goal of $25,000!!!

Maybe I have not talked about it as much as I should (because to be honest, I had been putting myself in denial of reality), but it is no secret that I am running out of options for treatments. Even the steroid treatments I am currently on will not last forever…only God knows the timing of it all. So yesterday when my sister asked why I was walking, I told her I was walking to help raise money for research and then after a pause I said, “And just because I can.”

I can walk! And I think I should get into a praise habit and thank God every morning when I get out of bed, because it is only through God’s strength that I still can. Yesterday was not an easy walk. In fact, it was much more physically enduring than the Women’s Center Walk last month or even my fall off the treadmill a few days ago, but the truth of the day: I was there, because I can walk!

But even though I can still walk, I would have never made it through the 2-mile trek alone. I consider you all on my “team,” but I know everyone who wanted to be there could not all be there and thank you for your prayers from afar. I did have a team with me though: (L to R) my younger sister, my aunt and uncle from NC, and my oldest sister and brother-in-law. Together they helped make my day both a fun one and a successful one.

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As we got started, we were first welcomed by Storm Troopers and bounty hunter from Star Wars. Being a fan, I thought it was hilarious they were there acting like crowd control and took a picture with them.

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As you can see, there was quite a good turnout of walkers. Sadly though, we did not get to talk to hardly anyone else there, because by the time I changed my tee shirt and we did our picture with the signs, the walk was about to begin. We were able to talk to one family that had NF1, only for a few minutes. They were very nice. DSCN2249

Before the walk officially began, they wanted a big group picture–which should be uploaded on the CTF website within a few weeks. So, up this huge hill we went and as long as you could see the lady with the camera she could see you. Then the walk started (thank you David and Uncle Jim for helping me get off the hill!) 1058790_813723071694_1175541122_n DSCN2253 DSCN2254

We stopped often so I could take a drink and catch my breath. It was a lovely day but a toasty one!! By the time we got half way, I felt so tired (due to heat, not enough water intake and not a great breakfast to jumpstart my day)…that and my left foot was achy! Combination of bad balance and the path tilting slightly to the right, my left foot was feeling the weight!

The NF Walk took place at the Sharon Woods Lakeside Lodge which had at the half way point an area with bathrooms and picnic tables in a shaded area. This is probably why I came in last, because we stopped there and I was able to eat an apple, which greatly boosted my energy to finish no matter how bad my left foot felt. DSCN2258 DSCN2256

There did come a certain point when I started to get really wobbly even with my walking sticks, just from being fatigue. I also find that I could not get much conversation in as turning my head to the side while walking makes me wobble too. So, my aunt suggested I forgo the rod and staff and use their arms! It helped me forget about my feet and I got to get some chatting time in too (between catching my breath!) 1060338_813741854054_844995300_n

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And I finished, even if a bit unstable on my feet! 🙂

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Instead of joining the picnic, my aunt and uncle treated us to a delicious lunch at a local deli. 🙂 They left afterwards to head home and the rest of us made our way back northward, stopping in Lebanon for ice cream at a place called Double Dip. If you are ever in the area, it is worth your dessert appetite.

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…

I just wanted to say thank you again…from the bottom of my heart for the love, support and prayers that you have shown me over the past ten years and this week in raising funds on my behalf for NF research.

God has richly blessed me with the abundance of family and friends and I can truly say, “I thank my God in all my remembrance of you, always in every prayer of mine for you all making my prayer with joy, because of your partnership in the gospel from the first day until now.” (Philippians 1:3-5)

~ Mel

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