Starting a New Journey!!!!!

First I just want to really thank everyone who followed this blog all last year.

If I didn't have this 'outlet' to write and vent and share my true feelings I seriously don't think I would've made it through this ordeal!

I'd stated in a previous post that I plan on ending this blog at the end of this cancer journey and I'm sticking to that. I really want to close this chapter of our lives. I'm not sure if we'll ever have to reopen this book again, I sure hope we don't but if we do I'm sure God will give us the strength and encouragement to face it.

Right now Nathan is in remission. He's laughing, he's active, he's playing and we're so thankful! (His hair is growing in even again too!!!)

I'll leave this blog out here in case someone else stumbles on it and wants to get in touch with me. Just leave a comment and it'll come directly to my email. If any parent faced with the same news ever stumbles on this and want to contact me, please do not hesitate, I would find it a joy to talk to you, to pray with you and to encourage you so please by all means send me a message.

Hearing your child has cancer is ROUGH, it's so hard, there's so many emotions you go through...just indescribable. But God says

⁹ ... “My grace is sufficient for you, for my power is made perfect in weakness.”

2 Corinthians 12:9

And it's important to note that Paul wrote that as he was dealing with a "thorn in his flesh." Paul begged God three times to take it away from him but instead God allowed him to go through it and assured him that His grace is sufficient.

Let me tell you from experience the word of God is true. It's the living word and I'll step out on a limb and say that it really is all you need to get by. God can do for you what others cannot do. As wonderful as the doctors are you will learn very quickly in a situation like this that they don't have all the answers.

But God does. Psalm 139:16 says, ..."all the days ordained for me were written in your book before one of them came to be."

God is in control, please trust in Him. I do understand it's going to throw your faith for a loop, it's going to challenge everything you believed in. It's going to make you wonder how in the world can God be good and allow this to happen!!! I wrestled with all of this. At times I truly felt God wasn't real, I felt he wasn't there and I truly felt he didn't care. Life was just unfair.

In the end I'm thankful for this past year. If God hadn't put our family in this situation I wouldn't have asked some of those tough questions. I'd honestly gotten to a point in my faith where I almost gave up. I couldn't understand why this happened and I did want to walk away and say "God doesn't care."

But instead I began to seek Him and I came across two videos by Lee Strobel, The Case for Faith and The Case for Christ . I HIGHLY recommend watching these, whether you're a new believer or a "seasoned saint." You can stream them online if you have a netflix account or if you don't, leave me a comment and I'll buy them and mail them to you, I recommend them that much.

God has become more real to our family through our suffering than He ever was when things were normal. When I surrendered everything and I mean everything to Him is when He became the most real to me. And I began to depend on Him in ways I never had to before.

There was NO ONE who could guarantee that Nathan was going to make it another year let alone ever see remission and truthfully there still isn't ANYONE who can guarantee that he'll stay in remission.

It's a very tough place to be. We take so much pride in being able to solve our own issues that we tend to forget how much we really need God. And when put in a position where the only thing I could do was cry out for help is when I saw God's work the most. I understand where 'peace' and 'joy' and true 'help' comes from. I could only find it in God's word.

I thank God for Nathan. I thank God for entrusting him to our care. I don't know if he'll live to see his adult years or if God will decide to come for him sooner but for just allowing him to be a part of our family I'm so grateful.

I thank God for His comfort. I thank Him for His grace. I thank Him for allowing us to be able to witness Him in action.

May God's peace be with all of you. I love you, and I thank God for you.

God Bless

Remission is here!!!!

⁷ He spreads out the northern skies over empty space;

he suspends the earth over nothing.

⁸ He wraps up the waters in his clouds,

yet the clouds do not burst under their weight.

⁹ He covers the face of the full moon,

spreading his clouds over it.

¹⁰ He marks out the horizon on the face of the waters

for a boundary between light and darkness.

¹¹ The pillars of the heavens quake,

aghast at his rebuke.

¹² By his power he churned up the sea;

by his wisdom he cut Rahab to pieces.

¹³ By his breath the skies became fair;

his hand pierced the gliding serpent.

¹⁴ And these are but the outer fringe of his works;

how faint the whisper we hear of him!

Who then can understand the thunder of his power?”

Job 26:7-14

I am so pleased to announce that Nathan is in remission!!!!! I cannot tell you how elated and happy we are. I'm so thankful to God, I just can't tell you the emotions I've been feeling.

Dear God,

Thank you, Thank you, Thank you!!!

I cannot explain what this all means to me and our family! Lord I do not understand your ways. When I heard that Nathan's PET scan came back looking great I was humbled. I've seen so much last year and I know that our family isn't deserving of such wonderful news.

Lord I don't know how you pick and choose, your ways are so beyond me. You never cease to amaze me.

I'm thankful and most of all I'm speechless.

Lord thank you for Nathan's healing!! Thank you so very very much.

In Jesus Name

Amen

Updates

Today at clinic, Nathan's doctors took him off of all of his medicines except one that he'll have to take for about 6 months!!!! This is so exciting for us!!!!!!

We're looking at either January 27th or 28th for his scans to see if he's in remission. The doctor said based off of his past history it's looking good.

Nathan enjoyed a wonderful Christmas!!! The doctor said in a few months we can resume any activities he enjoys!!!! He can also return to church in a few months!!! Yay!!! Though I'm not sure how he's going to act because he's been out of church so long, he's not really used to having to sit still.

I'll post more updates toward the end of January after the scans!!!! Remember no news is good news :-)

I Will Find A Way - Fred Hammond

I just love this song and wanted to post it. God Bless

He's Done

I can't put into words what we're feeling right now. Nathan is officially coming off of treatment!!!!! His last day of chemo was yesterday and today he's home!!!! I'm so excited!

I can't gather the emotions I've felt. I've been in really good spirits. I sat down on Wed. night and just reflected on how this all began, in January Nathan was in a ton of pain and couldn't even move his left eye at all. Diagnosed with stage 3 cancer the doctors couldn't even tell us anything except the medicine they were going to try. They couldn't guarantee anything.

I've seen a lot this year and I have to thank God over and over. We don't have a declaration of remission yet and I'm not going to worry over the future. For now I'm just glad to be celebrating this present milestone.

It's been a long year, we said goodbye to the people on the floor today and had a mini celebration full of gifts and hugs. I almost got emotional when the resident walked in who sat with me the first week of Nathan's diagnosis, a ton of memories came back.

It's bittersweet. I've spent a ton of time on that floor and I genuinely love the staff and families like my own family. I've hung out in the hall at the desk many times at midnight and beyond talking to them and laughing when Nathan was asleep, I'll truly miss them. It was funny because as we hugged we knew as much as we all loved each other we never wanted to see each again at least not on that floor :-).

Dear Lord,

I thank you. As weird as it may sound to those who may not understand I thank you for what we went through this year. It drove us to our knees in ways I never thought were possible. I thank you for the hard times, I thank you for the good times. I thank you for the lessons learned.

The most important thing to me right now Lord is that we don't forget. I've been reading the Old Testament lately in Leviticus and Numbers about the grumbling and complaining of the Israelites. It seems so stupid to me. They saw all the plagues in Egypt, they literally saw a sea part right in front of their eyes yet they still grumbled and complained against you.

Lord I don't want to become them. I don't want to forget this ordeal. I saw you in action throughout this year. I've kept my sanity this year thanks only to you. You've been my strength and my comfort. You've changed my entire perspective and I don't want to go back to the way I was before. I want to continue learning and growing and I truly want this family to be used by you.

In the end let your will be done.

In Jesus Name

Amen

Welcome to the North Pole!!!!!!

Nathan had a wonderful time!!!!!! Unfortunately he didn't make it into any of the news shots :-( he was off somewhere when I was on talking!

Happy Birthday Nathan!!!!!!!!!!!!!!!!!!!!!!!!!!

Nathan will be 4 tomorrow (December 6th)!

Seriously at the beginning of this year I didn't know if Nathan would make it to see his birthday but by God's grace not only has he made it but he's doing really well!!!!! Thank you Lord!!!!!

Update

Hi!!!

Just a quick update.

Nathan ended up going for Chemo on Tuesday. I told the doctor to give him every anti nausea medicine on the books and it helped. He didn't throw up as much this time.

He needed a blood transfusion on Wednesday but was able to go home Wednesday evening.

His floor had a huge Thanksgiving dinner for the patients and their families. It was really nice!!!

Nathan is recovering pretty good this time. He's been pretty tired but he's home and we're thankful for that!!!!!

One more hospital stay left!!!!! Next month will be it and then he'll get his last scans in January!!! I'm praying they come back clear! It's been a llllooooonnnnnngggggg year!!!!!!

We had a wonderful Thanksgiving at home. Sam and I put together a nice dinner, a lady from church contributed to it with the BEST macaroni and cheese you've ever eaten. LOL secretly when we found out she was gonna cook it for us we were pretty glad that no one else could come so we got it all to ourselves (greedy I know).

I'll update more later as I'm kind of in a rush. Keep a friend of mine in prayer. I met a new mother at the hospital last week who's 9 month old was just diagnosed with leukemia the week before.

My heart goes out to this husband and wife. I remember all too vividly the first time we heard Nathan had cancer. I talked to her for quite awhile. They have 4 children all together ages 5 and under. They're a WONDERFUL family. Please keep them in prayer because they have a long road ahead and they're just starting out.

Leukemia is different from Nathan's cancer, thankfully Nathan got to come home a lot but Leukemia patients sometimes stay months at a time and for this little guy and their family it's no different, but please pray because as soon as flu season hits the siblings won't be allowed at the hospital (This happened to us last year with Peyton). And it's really hard to be separated from your other children to take care of one, it puts such a strain on the family that most people just can't understand. Anyway, she's been heavy on my mind so I'm asking everyone to take a minute and pray for her.

Sophie Scholl

Seriously, I just watched the best movie ever and wanted to share it with you.

It's about Sophie Scholl. Have you guys heard of her? Well neither had I until last week. I was listening to Family Life last week and Barbara Rainey mentioned her saying she was a courageous person. Most of you know that I'm a history buff. I love history, maybe I should've majored in that instead of computers in college. Anyway I looked her up and her story is so inspiring. You can read about her here.

Then I went to Youtube to see if anyone had posted any history videos on there and found this movie of her final days and watched it. Below is the trailer. And below that is the first part of the movie. You can rent it or watch the entire movie on youtube. Whoever LiberalDemocrat83 is out there, they posted the entire thing so below is part one and you can follow the links to find the rest of the parts (I think there's 16 total). Such an inspiring movie.

It's all in a different language with subtitles and truthfully that made the movie all the more fantastic, suspenseful, and interesting in my opinion. Seriously when I started it I couldn't stop, though I had too because Nathan woke up early from his nap...followed by Peyton :-) But then I picked it up later on and finished it. Hope you guys enjoy learning about Sophie as much as I did.

Oh and if you have a netflix account you can stream it online here!!!!

God Bless

This is the Trailer for the movie

This is Part 1 of the movie

The Many Blessings

You know I've shown my hurt, anger, and all that stuff on here but have I told you about the many blessings we've received this year? Maybe with Thanksgiving coming I should stop and do that.

Me and the hubby were up to 2am the other night talking about a ton of stuff and he made a statement that might sound odd to you. He said he's thankful for every rough thing that's happened to us this year. How can anyone be thankful for this????

Is he saying he's glad Nathan got cancer? Of course not. But alot of things of happened this year. There's been cancer, apraxia, busyness, A LOT of extra expenses...I could go on but you get the picture. The year has truly been filled with trials, but one thing we can both agree on is that it's brought a ton of blessings that I'll list and talk about.

WHAT'S IMPORTANT

I think one of the most valuable lessons has been learning what's important and what really matters. And believe it or not it's not always the cliche answer you might expect. "As long as everyone's healthy then it's all good."

That matters as well but truthfully we're not going to live forever. Our loved ones are going to get sick and die or be taken from us instantly, so something else has to matter more to you than just that statement.

What matters most is Christ. He's our strength. He's our ever present help.

This year has literally driven us to our knees in a huge way. And God has always risen to the occasion. When I needed comfort which has been the most important thing to me this year I got that. When strength was needed it was provided. It's been an invaluable lesson.

MY CALLING/HIS CALLING

I'm not going to talk about what Sam discovered about himself through all of this but it's something he learned in this situation that's his to share however he chooses (and it's terrific btw).

But I've learned that being a homemaker is truly my calling. It's not popular. It's counter cultural. It sounds...well weird. It's heavily frowned upon. And it's absolutely wonderful, it's exactly what God called me to do.

Sometimes when I write I am really down because of the cancer and it is so hard to watch when Nathan is really sick. But at the same time I have to remind myself that Nathan and Peyton are going to go through a lot growing up and though it isn't going to be easy for them I don't want them to feel like a burden to me.

It's been a joy to be able to hold Nathan when he's sick. It's been my pleasure to learn about Apraxia and to take him to speech therapy and to work with him one on one at home. It's HARD work, but it's valuable. To see him and Peyton learning everyday has been wonderful.

And this isn't to start the argument over whether women should work outside the home etc. I really don't care, everyone's calling in life is different.

But it's nice when you don't feel a reason to keep searching anymore. If you've found your calling in life you know what I mean. If you're still searching or if you know it but aren't doing it yet then that can be stressful. But once you've found it and that 'aha moment' comes you can rest a little.

I've been doing this for four years already and I've always liked it, now I have a sense of excitement and thanks.

A friend of mine has a son with MS and she said sometimes as hard as it is she has to still stop and thank God for trusting her to be able to handle it. My thanks is not only that but also thanks for providing me the strength to handle it and giving me the time to be home to devote myself to it.

SEEING THE KIDS IN A WHOLE NEW LIGHT

This one has been huge for both Sam and me. I pray a lot over how to parent Nathan and Peyton because truthfully I really don't know what I'm doing.

That doesn't mean I'm not confident as a parent, but I'm not an expert in child rearing. I just pray a lot and try to bring glory to God in what I do, and try (emphasis on try) to admit when I've made a mistake.

But one prayer that's been consistent for me is that I want to learn Nathan and Peyton's personalities.

I've learned that in a huge way through this situation. I've gained such a sense of pride watching Nathan battle this disease. It's been amazing. I watch him walking through the hospital and I realize that he's a pretty friendly and polite little guy. I wish I could take all the credit for that but some of that is just him. He speaks to everyone and he has a confidence about himself that I love.

I can sit back in the chair when the doctors come in because he'll hop up on the table and open his mouth, lift up his little arms etc. He follows directions really well. And honestly I have no issues with him wearing his mask in the hospital.

Peyton has adjusted to her new situation as well. She can't wait to go to her Grandparents to stay and she adjusted to that immediately in the beginning. She makes sure Nathan takes all of his medicines. She checks up on him, she's become a regular 'little mommy' around here.

This year through off the entire family but both children handled it with ease and I'm thankful for that.

STRENGTH

I think Sam and I are stronger as a couple. This situation can easily kill a marriage and though it's been hard I honestly think it made us better as husband and wife. I think we laugh more, our gaols for our family are completely in line with each other. Our goals have changed from what they were last year but they totally lined up.

Sam has been my strength in this. I'm so glad God called him to lead our home and he's been a great leader.

Cancer affects mothers and fathers differently. In addition to dealing with the cancer Sam still has to provide for his family etc and he's done a great job at it. I also admired him but that's through the roof now.

SUFFERING

I learned about suffering and this one is important. John MacArthur said this:

" Suffering produces good. Why? We learn how to deal with pain and therefore we learn how to help others deal with it. We learn compassion. We learn patience. We learn gentleness. We learn trust. We experience grace from God and mercy and sustenance."

This is most important. I LOVE talking to God. I actually love to pray. I love the fact that at anytime I can talk to him and that he HEARS me.

Suffering has reminded me that one day all of this will be over and we'll spend eternity with him, we just have to get through the mess down here first. No matter what suffering is temporary. No matter how long it last, it's still temporary.

I don't know if I would've realized just how much I need to pray if this hadn't happened. Just how much God wants us to depend on Him.

FRIENDs/FAMILY

I want to get specific in this section but truthfully I'm terrified I'll forget someone and I just don't want to risk doing that.

But our friends and family came out for us in a major way. I know some people who don't like church because of the 'people.' I LOVE my church family SO much. For those of you who don't belong to a church home you're truly missing out BUT you don't have too :-) If you live in Cleveland then please visit Providence Baptist Church visit the link to get times and locations.

But our family and friends came out for us in such a huge way, we even got to know more people in the church we may not have met had it not been for this situation. Just to know that people have been praying about Nathan, the cards, the phone calls, the toys, the food, etc. Thank you, Thank you, Thank you

I can't say enough about our parents, siblings, aunts, uncles and cousins and my neighbors and all of our friends from our hometown! We've had quite a bit of love and support.

I've met so many people at the hospital, the receptionist at the front desk, the people at the cafe, who have become friends and family to us.

Nathan's nurses and doctors, the secretaries, etc. Our lives are better because we know them.

I can't forget the wonderful families I've met who've also been touched by this disease, my buddy in TX who contacted me right away in the beginning and all of my friends here at Nathan's hospital I just love them to death.

I had to label this part 1 because the more I type the more I realize just how blessed we've been throughout all of this, so I have more that I'll include at another time.

God Bless

More Quick Updates

Nathan was supposed to be admitted this week for chemo but his counts are too low for admittance and he's had some mouth sores so he's getting pushed back to next week. We knew there was a possibility of that and at first we were going to try to prolong him until the week after Thanksgiving if that was the case but then we changed our mind and decided to go ahead with him being admitted next week.

We're praying he'll be able to come home Wednesday and not miss Thanksgiving but even if he doesn't that's ok too, we're not too concerned with the holiday at this point we just want to keep him on track with his chemo as much as possible!

Other than that he's acting great. He's been playing, jumping singing etc!!!!

A Good Day

Well I didn't run into Mrs. Margaret yet, BUT I did happen to run into my buddy from the playgroup!

Remember the lady I told you about in an earlier post that encouraged me saying Nathan still has a chance? Well she'd given me her number back then to call her and in all of the madness I lost it and I happened to be out and ran right into her!

Publish Post

I was soooooo happy to see her and her little ones! LOL we were so loud when we saw each other cause it's been so long and her first questions of course were about Nathan. I miss Nathan and Peyton's playgroup so much! It was such a happy reunion and we did exchange numbers and I programmed it into my phone this time so I will definitely keep in touch. She was encouraging as always, it made my day.

God Bless

Updates

Just a few quick updates.

Nathan has gone an entire week without throwing up!!!!! I'm very happy about that. He's been battling a viral infection, but hasn't spiked a fever and has been able to fight it at home.

His mouth sores returned :-(. I noticed him walking around sucking his mouth in a lot so I called him over to see what was going on and inside I saw new mouth sore. He's been on a preventative medication for awhile now and it had been working but he just "broke through" as his Oncologist called it so they started giving him a pretty high dose of medication to knock them back out and it seems to be working.

I just took him in to get blood counts today and found out his counts are extremely low. If he gets a fever right now it'll be a big deal. I already have a sign on the door banning literally everyone from stepping foot in the house except Grandparents and I've even laid strict guidelines for them to follow.

We're so close to the end of his treatment (in January) so I'm just trying to get him through without any serious infections.

Remember I told you that Nathan had cast on his feet so that he would learn to not walk on his tip toes? He wore them for a month and then they came off and finally he started walking flat. Well recently he started easing back up on his toes again we noticed. His Physical Therapist came today and looked at him.

The cast stretched his tendon so technically he doesn't have to walk that way anymore. Before he'd been walking on his toes for so long that his tendon had shortened and he really couldn't walk flat but now that's not the case it's just that out of habit he's going back on those toes. Truthfully we decided we really don't care about toe walking anymore right now and his PT, who is fantastic, agreed. In the grand scheme of things toe walking is an extremely small problem that we're not going to put any more time into at this point.

Speech Therapy is still going good. Nathan is doing a lot better with his pronunciation and I'm really proud of his progress. He's still working on single words. It's such a long process and I've dedicated myself to learning everything I can about Apraxia so I have a ton of resources that will help him too.

Mrs. Margaret

I prayed a prayer recently and I would really like for it to be answered.

I would really love to run into Mrs. Margaret. I'd love to see her at the grocery store or somewhere.

I'll never forget the way we met. I was in the post delivery area the next morning after having Nathan by an emergency C-Section. Mrs. Margaret was one of the nurses and she came rushing in and stepped over me as I was sitting in a chair. I still had the catheter in and she tripped on the tube that was running to the bag. I stood up VERY quick because I didn't want it to get yanked out (that's not easy to do mind you after surgery). Anyway that's how we met, not a very good first impression it would seem, but within hours she was my absolute favorite nurse.

If I had to guess I'd say Mrs. Margaret was in her late 60s. I'm not sure what country she was from but she had the most beautiful soothing accent and was extremely motherly. She took such good care of Nathan, Peyton, and me. She'd make me sit down and just busy herself cleaning the children and the room. She loved her job. As an anxious new mother I remember finding her presence comforting and encouraging.

With both deliveries she told me two things that have come back to me really strong lately. First she told me the story of her adult son that she'd lost to cancer. He was a wonderful son whom she and her husband adored. She said God couldn't have given her a better son. As much as it hurt to lose him, she told me both times that she knows that "God sometimes takes the good ones to protect them" and that gives her comfort when she'd ask why him.

Secondly she told me over and over to have more children. Something that is TOTALLY counter cultural now a days. She would tell me to have as many children as God would allow. She'd only had two and she said if she had it to do over she'd have had a ton more. So she encouraged me both times I was there saying have more children and that they are a blessing from God.

She informed us that she was retiring the year Peyt was born and I had Sam rush down to the gift shop to buy her something. I remember her walking us to our car and giving us hugs as we left with Peyton. Sam and I both really really loved her.

I figured that would be the last time I saw her. Every now and then Sam and I would talk about her but it'd been awhile, but then I was busy doing something the other day and she came to mind.

Everything she said to me has come flooding back. We don't meet people by accident and I don't believe I met her by accident either. I had no idea we'd be in this situation with Nathan but I know God knew and having her as a nurse wasn't an accident.

I could probably call the hospital to see if anyone has kept in touch with her and at times I thought about doing that... But I'd rather just run into her. I know she can offer a lot of wisdom in my situation and I'd really love to hear her voice again.

But if that meeting never happens I'm still thankful that I met her when I did and that she shared her story with me never knowing the impact it'd have just three short years later.

I Need Constant Reminders

Dear Lord,

I need constant reminders lately of who you are and what you're capable of. I long to be close to you right now just because that's where I find my strength and my comfort.

It's been a long year. A really long year. I'm stuck in a weird place right now. I've given everything to you. Everything that is important and that I hold dear is yours.

I've seen a lot. I know of two babies that have gone home to be with you. I've met more families coming in just finding out their children have cancer and I'm having a hard time with that. Everytime I hear their stories I have flashbacks to January and it saddens me that this is happening to other families. The pain of it all still comes back to me even months later.

Everything lately has been a faith walk. I'm scared about what next year is going to bring but at the same time I'm comforted that I can cast those worries and concerns on you.

But Lord, I don't want to be scared anymore. I don't want to live the rest of our lives in fear. I truly want to live. I want to give those fears to you and just plain live. Tomorrow isn't promised to any of us.

I truly don't know what the future holds for Nathan or the rest of our family but I know you hold the future.

I wish other people could know you Lord, I really do. I truly couldn't have made it through this year without you. All the nights I cried, you were there. All the days I didn't have anyone to talk to you were there.

Becoming a child of God didn't make my life easier. But you never guaranteed a cake walk, I was just hoping for one.

But Lord you promised never to leave us or forsake us. In the midst of our trials you have been here. Your promises are true.

When we didn't feel like we could get up, you extended your hand. You've carried this family.

I've learned that my children are not my own. I've learned that in the midst of the worst trials you are with Nathan. When I can't go into some rooms with him, I take comfort knowing you are always with him.

I've learned that EVERY child is a blessing. Someone said to me, that if most people knew what parenting entailed, then they wouldn't become parents. But Lord you gave me Nathan and my life is better because I have him in it. All the trials he's been through, Lord I still love him and I'm so thankful you chose us to be his parents. I wouldn't trade him or Peyton for any amount of money. Thank you for letting a 3 year old teach me so much about life.

I pray that people will accept you as their Lord and Savior. I take great comfort knowing that if something was to happen to my children or Sam that though it'll hurt like crazy, I'll see them again one day.

There is no other way to be saved but through you. Thank you for dying for me. Thank you for dying for my husband and children. Thank you for loving us as much as you do.

Please continue to bring us comfort and strength. I don't want to forget what you've done. It's so easy to forget but Lord I don't want to forget. I really don't want to forget.

In Jesus Name

Amen

Welcome To Holland

I just stumbled up on this beautiful Essay written by Emily Perl Kingsley whose son was born with Down Syndrome in 1970. I was actually reading a blog on Apraxia that mentioned it. I hope you enjoy it as much as I have. Parents of children with special needs will especially love it.

God Bless

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

A New Fear...

The end of Nathan's treatments is finally in sight. In January 2011 he should be done with treatment and I'm praying hard for remission! Actually my prayer is more than that.

Nathan's tumor is inoperable so I was told some of it will always be there but I'm praying that when they look at the last set of scans they don't see anything. I pray they have to wonder, "Where is it?"

I've mentioned this prayer to a few people and their response has been to tell me that would be nice but you know it's highly unlikely that will happen. I want God to prove them wrong so bad. I've even asked Him too. I've begged him to let those people know who He is and that nothing is impossible with Him.

I expected to feel total joy at seeing the end just around the corner. What I didn't expect is this new fear to creep into the picture. As much as I'm looking forward to Nathan being done with chemo another part of me is terrified to see it end.

To many of you this is a ludicrous fear. Totally crazy. But honestly I haven't talked to one parent of a child with cancer who hasn't shared the same fear in one way or another.

As much as I want Nathan to be done with chemo and not have to deal with it's side affects, I have a false sense of comfort while he's getting the medicine. After the medicine stops than the waiting game begins...and that concept is extremely nerve wracking to me.

The doctor has informed me of several things. Believe it or not it's about 5 years after treatment before a person's chances improve of the cancer not coming back. If they make it to 10 years without the cancer coming back then thats even better. If the cancer were to come back shortly after he's taken off the medicine then the doctors will determine that the treatment didn't work and will try something else.

What if he gets a headache? What if another lump appears? You see for Nathan a headache will never be just a headache anymore. A lump will always have to be looked at. Since he's had cancer once, he's at a higher risk than the rest of us to get cancer again. Whenever something comes up with him we'll always go to the doctor hoping/praying that it's not cancer.

Some of the side effects from the radiation and chemo could take awhile to manifest. Because of the location of the tumor, radiation was done very close to his brain. We still don't know what effects that will have on his future.

Chemo has been brutal to Nathan these last two treatments. His immune system is taking longer to recover so he's not bouncing back as quickly as he used to. Right now I have plastic bags strategically placed all around the house in every room that we're normally in. It may look messy if you were to visit but if Nathan says "bag" then there's always one really close to hold up in front of him.

I truly miss our lives before this. Peyton and I were just looking at pictures of our last Christmas...we had no idea what was going to happen less than a month after those pictures were taken. Life seemed so simple then. Cancer wasn't even a thought.

Now I'm truly trying to figure out how we're going to start over. We can't go back to the way things were. I so wish we could but a certain 'innocence' is gone and our perspectives on life have changed.

My dependence and awareness of God has increased and for that I'm grateful. All of these things I'm writing I've taken to him and will continue to take to him. I don't want cancer or the fear of cancer to control our future. I really want to move on.

Some things have gotten better. I've learned what's important and truthfully I think I can let things go easier than a lot of my peers. Outside of this cancer nothing else really rattles me. LOL I'll admit I'm not the person to call if your issue isn't life threatening, I may not be able to offer much assistance. As long as your family is healthy and you have a roof over your heard, well I can't see much past that right now.

I've made life long friends. I'm so grateful for the hospital staff and people who've enriched our lives. I love the families I've met both here and out of state who've also been affected by childhood cancer. I met children with cancer who've changed my life.

I just came across a 13 year old named Jake who was diagnosed with Leukemia in July. He'll be doing treatment for 3 years. He asked Nathan to come sing while he played the guitar on the Wii. He was so kind and encouraging, complimenting Nathan's "singing". I took a ton of pictures. One nurse stopped to watch them as tears fell down her cheeks at the sight of the two of them together. I still say my life is better after meeting all of these people.

Dear Father,

I just want peace about the future. You told me not to worry about tomorrow, for tomorrow will worry about itself.

So I'm seeking you. I've learned that I am nothing apart from you. I've learned that you're in control and not me.

I want to depend on you and not worry about this. No matter what happens I want joy to return to this house.

Please forgive me for the doubt and worry that still find its way in.

Lord you know my prayer. You know my every desire concerning Nathan's cancer.

I pray that your will be done no matter what. And I pray for the strength to be able to accept whatever that will is...but Lord I do ask that those scans come back showing nothing...I still want your will but if it's ok I just wanted to throw in my own personal request.

Thank you so much for hearing me. Thank you so much for loving Nathan and my family. Thank you so much for the people you've placed in our lives.

I pray that I always remain close to you even after this treatment has ended. I pray that I remember to pray in the good times as I have been during the bad.

In Jesus Name

Amen

Quick Updates....

Nathan stayed in the hospital for chemo this past Monday. This is the roughest time I remember him having. He threw up a ton in the middle of the night, into Tuesday afternoon.

He's home now. He didn't throw up any on Wed. but just got really sick again today and has been throwing up and just begging to be cuddled.

He did get to make a wish through the "Make a Wish Foundation" and will be going to Disney World next spring if all is well. It was so cute, as soon as the volunteer arrived he announced "Mickey Mouse" to her before she could even sit down lol so Mickey Mouse it is.

He got his cast off his feet and no longer walks on his tip toes. We'd gotten so used to him walking on his toes that it still seems weird watching him walk flat. All the while he never once complained about the cast. Nothing really seems to phase him and I'm so thankful for that.

I'll continue to update as things come together. If all still goes according to schedule he'll be wrapping up his treatment the first week of January 2011...

About 5 of ya'll have called me and believe me I got the messages, I'm going to call back soon, these last few weeks have been pretty busy but as soon as I get a break I'll be calling!

God Bless

Confession time

The Bible says: "Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective" James 5:16

Please be patient with me because being a 31 year old mother of 2, this is very hard for me to admit.

Here it goes...

I LOVE that new Willow Smith song, Whip My Hair!!!!! Seriously I was reading the news the other day and saw Willow Smith the daughter of Will and Jada has a new song out. So I breezed over it. I mean she's a kid and I didn't really care figuring it'd be kind of cute but you know for kids, so I didn't pay attention.

I'll admit I was a huge fan of Will Smith back in the day (anyone remember "Parents Just Don't Understand"?), but again just figured aww that's cute she has a song. So anyhow I clicked on the link to watch the video and felt my head nodding a little bit and by the second listen I was whipping my hair like crazy...

So there you have it. I like it. To make matters worse if someone doesn't intervene on my behalf with prayer I just may download it from ITunes next week when it comes out...I'm just sayin. (LOL and I know it's sad, I even know the day it'll be available...)