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.