Sunday, December 2, 2012

I Believe in Miracles




Yesterday we celebrated a miracle. My Charleston turned three. THREE!!!!! 3 years old!!!!! Enjoy while you celebrate with us!

Thursday, November 22, 2012

Saying "thank you" just isn't enough

Today, my little family celebrates Thanksgiving physically apart, but together in our hearts.

BJ is with his bride, Catie, and her family. They are in St. Helena, at the same location of their wedding in September. LUCKY!!!!! To them, I want to say thank you. Beege, you know what you mean to me. You are my rock, my joy, my laughter. You, my boy, are my constant source of entertainment. Thank you. And Catie, WOW.....where do I begin. I love you and am SO HAPPY that you are finally a Taylor!!!! Thank you for loving my boy like you do, and for embracing our little family like you do. To both of you, saying thank you just isn't enough.

Ashley, Cameron and my Charleston are celebrating Thanksgiving on their own this year. What a blast!!! Ash, you are not just my daughter but also my best friend. WE are in this journey TOGETHER. You hold my Charleston's life in your hands every single moment of every single day and night. Saying thank you just isn't enough. Cameron, you are an amazing father. When I watch you interact with your precious son, I thank God for you.

I am with my mom in Laguna. This wasn't planned, but I am so thankful that I am here. My mom has taught me so much. She taught me to love unconditionally, to stand up for myself when needed (even though she hasn't always liked it when I do), and how to be the best nana on the planet. I have the best mom in the world. Saying thank you just isn't enough.

I have some amazing cousins. Sherry and her sweet husband Shane have welcomed me into their home. They hold me up when I need it; hug me when I cry; laugh with me when I fall down (literally!). And Pam.....without you I don't know what I would do. You are always there for me, unconditionally, no questions asked. Saying thank you just isn't enough.

There are so many people that are helping me and my family through our journey with loving Charleston. The volunteer firefighters in Reno; lifelong friends; new friends that we meet along the way; SMA families that we will never even meet in person. Saying thank you just isn't enough.

And to my Charleston.................baby boy, how do I tell you how much I have you to thank for? You have changed my life. Little did I know what it would mean to be your nana. I treasure you. Like I always tell you...................I love you more than all the stars in the sky...............more than the fishies in the ocean.................more than the sand on the beaches. And what I end it with in my heart............I love you more than all the tears I cry for you.

Saying thank you just isn't enough.

Sunday, October 7, 2012

The Wedding of the Year


My boy married the girl of his dreams!!!! Not only she is the girl of HIS dreams, but she is the girl of MY dreams for him. I love Catie because she is kind, sweet, honest, giving, funny, sincere, amazing & wonderful - but also because she loves my boy in such a genuine way. I am so happy that she is now a member of our family. Just wanted to share a few moments from the day:)

Here comes the bride!

Happy moms!!!!


How happy is my son????? I love this!!!!




The happy couple.


My Charleston loves her, and she loves him.



Sunday, August 26, 2012

All Part of My Journey



Today I'm feeling a bit "sappy." I don't really know the definition of that word, but I'm using it this way - a bit sad, but mostly happy. So bear with me while I try to explain. (and just a warning, I may ramble my way through this post).

When Charleston was first diagnosed, I went through so many emotions, and I've talked about them previously. Shock, ANGER, sadness, ANGER, wonder, ANGER, fear, ANGER, hopelessness, ANGER. What a journey I've been on.

Shock? WHAT is SMA, and why does my grandson have to have it?

Sadness? Oh my gosh, unbelievable sadness that is still in my heart. This is a sad, sad disease.

Wonder? What is this going to be like - what do we have ahead of us? How long do we get to keep him? Why did this have to happen to my daughter?

Fear? According to the doctors, he was supposed to pass away very quickly. So I lived in fear every moment I was with him, every moment I was away from him, every night when I went to bed, every morning when I woke up, every time the phone rang. At night, when I got home from helping Ashley, I would take a hot shower and sob. Huge, giant, horrific sobs. I was alone, and I could do it, because nobody would know how weak I was. Especially my daughter. Because I had to be strong for her. But I wasn't. I wanted to die.

Hopelessness? How can you have hope when doctors tell you there is none?

ANGER? You betcha. For all of the above reasons.

And then something interesting happened. Call it a miracle, if you'd like. I certainly do. I accepted.  I accepted that my Charleston has SMA. I accepted that God chose my daughter to be his mommy, Cameron to be his daddy, me to be his nana, and BJ & Catie to be his aunt and uncle. God knew what he was doing, I just didn't see it that way then. All part of my journey.

I got answers. Why does my grandson have to have it? Because it makes him who he is. It is not WHAT he is, but it is part of WHO he is. And just a tiny part. Because my Charleston is funny, smart, sweet, loving, cute, demanding of nana rubs, interesting, talkative, and the most perfect child on the planet. And I'm not prejudiced, I'm just stating a fact :). All part of my journey.

As to the sadness, it will never go away. It's just the way it is. But I wouldn't trade this sadness for anything, because it's part of the journey. And I wouldn't trade this journey, because it's made me into the woman I am today. I've said goodbye to family and friends because of my growth through this journey, because I just plain don't have room in my life or heart to be non-supported. It's interesting, when strangers that you've never met in your life are kinder to you than your own family....but it's the way it is sometimes. All part of my journey.

Wondering what is going to happen has been the worst part, I think. Not knowing what is in store for my little family is hard. We don't know what's ahead of us, but if I have it my way, I will be at Charleston's swearing in when he becomes Senator Charleston Sage Goeppert. All part of my journey.

"Fear is the lack of faith" - a member of my family, Nathan Kirkham, had this tattooed on his back prior to his death from a drunk driver. Cameron now has it tattooed on his leg. And what a true statement this is --- and one of Charleston's greatest gifts to me is that he brought me back to God. All part of my journey.

The hopelessness that the doctors instilled in us was just plain MEAN. When the doctors were trying to diagnose Charleston, Ashley and I sat in a hospital waiting room and literally PRAYED that her baby had experienced a stroke in utero. We knew if that was it, he would recover. Can you imagine what that felt like for us? To sit and pray that your baby/grandbaby had a stroke? Like that would be good news? And for me to have this in my memory, sometimes it is just too much for me to think about (like now - this is the "sad" part for me of feeling sappy). It's not fair that the doctors gave us no hope. It's not fair that they said there was nothing that could be done. It's not fair that Ashley, Cameron & I had to sit in a pediatric neurologist's office together and be told to take him home and love him, that he will be gone within months. Because the doctor was wrong. But it's all part of my journey.

The anger has been very hard to deal with. I don't know if it will ever completely go away, but I hope so. I'm not going to lie and say that I'm not angry over this situation, because I am. But for selfish reasons. What am I angry about? I'm angry that my Charleston can't hug me. I'm angry that my daughter has to go on lockdown for 5-6 months every year to keep her baby alive. I'm angry that Cameron & Ashley have to struggle like they do. I'm angry because my son misses his sister. I'm angry because I miss my daughter. I'm angry that part of my family has turned on me because I've finally found the guts to stand up for what I believe in. But I'm not angry that Charleston has SMA. Because without it, I wouldn't have learned the life lessons that I've learned over the last 2 years, 8 months and 26 days. It's all part of my journey.

And now, for the HAPPY part (told you I might ramble.....). My Charleston is AMAZING!!!! I tell everyone that he is the love of my life, but you know........ I haven't met my future grandchildren yet, and I know they'll be the loves of my life right along with him. But MAN do they have big shoes to fill!!!! I enjoy each and every moment I get with him. He is so much more stable than he ever has been since he had his tracheostomy surgery. We get to take him places, and in 13 days he gets to be at his Unkie B & Auntie Catie's wedding!!!!!! We have been practicing dancing :)

Speaking of BJ & Catie's wedding - I CAN'T WAIT!!!!! I am going to cry, cry, cry, and laugh, laugh, laugh. And dance with my Charleston!!!!!

Two weeks ago, the wonderful Volunteer Firefighters in Reno, NV sponsored the 3rd Annual Spaghetti Feed for our little boy!!! And guess what - CHARLESTON GOT TO GO!!!! This group of people are something else. They didn't even know us, but they heard of him and his situation when he was just a few months old, and wanted to do something. Unbelievable.

Life is good with my Charleston. He's taking me on the ride of my life..........teaching me things I didn't know I needed to learn. I am thankful for him and who he is. I am thankful that I get to be his nana. With all the bad that we've been through, he is the good. I wouldn't trade this experience for anything. All part of my journey.

I love you, Charleston.












Wednesday, August 1, 2012

2nd Annual Hope for Charleston Pasta Feed

The fundraiser for my Charleston in Danville was a success!!!!! On Saturday, July 21st, a bunch of our friends and family, along with some strangers, joined in helping us keep our little boy. Here are some photos.




















It was all done for my precious Charleston.




Our goal this year was to be able to purchase an "activity chair" for him, and because of the generosity of everyone there....we can!!!!! We are also able to send Sophia's Cure a donation as well to help fund the Gene Therapy program.

Thank you, thank you, thank you, for coming.......even though it was one of the HOTTEST days of summer!!!!

Sunday, June 24, 2012

Ahhhhh.......I'm Getting My Daughter Back :)




I've missed her. 
Even though I'm with her almost everyday, I've still missed her. She used to be my buddy that would go everywhere with me, and that came to a shrieking halt. So I've really, really, missed her. BAD. It makes me cry just writing about it.

It's been over 2 1/2 years since we got to do this. Just sit and talk, and enjoy a relaxing meal. Just me and her. And of course, our Charleston :).

There's a wonderful restaurant downtown Turlock named Bistro 234. They have outdoor seating. I drove down there earlier in the day and talked to them about bringing them there. We needed a place away from foot traffic......outside, away from germs.......and away from people. I told them it was going to be the first time doing this, so we were nervous. They were amazing. Just asked what we needed, and they did it. Love them.

So I went over to their house, whispered in my Charleston's ear that we were going to give mama a big treat, and take her out to dinner. He started his happy sounds.

We loaded up, and off we went. Less than 10 minutes away from home, but one of the biggest treats we've ever had. We got to go out to dinner, just sit and talk, and include our Charleston in our conversation. Amazing. Wonderful. I'm still on Cloud 9. Because we still have our Charleston, and because.........

            I'm Getting My Daughter Back.


Monday, June 11, 2012

Our First Kiss

Our First Kiss

Let me just say, that this is the BEST first kiss I've ever had!!!!! I've waited a long time for it, but it was worth the wait :), and I finally kissed the Prince I've always dreamed about.

I haven't written this blog, because I've been waiting until I could do it without crying. But I've finally realized that it's going to be impossible for me to not cry my way through it, so here goes.....

My Charleston has a tracheotomy now. Those are hard words to say. I never knew that I would have a grandchild with special needs like him. And it's been quite a journey, from NO!!!!! not my grandson.....to WHY my grandson????......to LOVING him and FIGHTING for him. And now, our first kiss.

Charleston had his surgery at Lucile Packard Children's Hospital at Stanford on Friday, May 18th. I'm not going to go into details, but suffice it so say that it was the longest day......and then week.......of my life, no thanks to Stanford. It was SO bad that the Medical Director showed up in Charleston's room, and had Ashley give her names and details, and they are investigating all that happened. It is only because my Charleston has a will to survive that he is still with us. And that is why I haven't written this blog; because it's so upsetting that all of us (especially him) had to go through what we did.


Ashley getting ready to go into operating room
Last picture with his mask :)
Just out of surgery.
Snuggling with her baby.


Cooling him off.


Recovery Time.

Even Koda, my granddog, was rooting for him!


Look at this sweet face.

A little bit loopy!!!!

Getting his hair washed.

I couldn't stop looking at his face.

1st hospital bed....without mama:(

We watched LOTS of movies.

Happy mama, knowing the worst is finally over.

Ashley was standing up asleep :(. She wanted to hold him so bad.

Note from daddy when he left to get some sleep.

He's turned the corner - yay! Getting his coloring back.

Reading a good book.

Finally....moving him from a crib to a bed with mama.

Boy did he sleep better now!

Little mama couldn't take her eyes off of his beautiful face.

Nap time - TOGETHER. 

Nana giving him a bed bath. 
We have never been able to brush or comb his hair because of his mask. He cooed the entire time she did this.
Ahhhhh.......relief........

Sleeping soundly.

Ashley doing her first trache change.
HOME!!!

First thing - BATHTIME!!!! 
I've never seen anyone so beautiful.

Prince Charleston!

Nap time on mama.

First walk without a mask!
SO handsome.

Isn't he beautiful? We are thrilled that this is behind us. He is still in "recovery mode", so we are having a very quiet month with him. He's getting used to it, and we are getting used to the new equipment and sounds.

Thank you, God, for giving me my Charleston. And for letting me keep him. And for giving me my Prince to kiss.