Ramblings of a momma

Yea yea yea.... I know... it's  been a while.... oh well! Such is life,  move on! 

This morning I am sitting here in a place we keep seeming to come back to (Children's  Hospital Oakland) with little to do besides wait for our appointments. And in this my heart felt called to write. It's kinda odd how God keeps bringing me here for Nathaniel's care, then using the time to do some major works in my heart and life, but who am I to question God? So I decided to wander down this path and see where He leads today.

Right now Nathaniel and I are just hanging out at Family House and waiting for his appointments this afternoon. He is happily playing on his electronics, but my brain won't stop spinning. 

As I lay here thinking and praying I am struck over and over again with the fact that this journey  with Spina  Bifida  and my family started 15 years ago, almost to the day! It is very surreal to me that we are once again facing major surgery almost 15 years to the day from when all of this began for us. So very much has changed in those 15 years, and yet some things haven't changed at all. There are way too many things to list, but these are the ones that strike me deepest today:

Nathaniel is no longer a little baby growing inside of me. He is a young man with a personality and spirit all his own. It's still my job to care for him to the best of my ability, but he has a voice in that care now too.

Spina Bifida isn't a big, scary mystery anymore, it's a part of our life that we live with and deal with every single day. In the last 15 years not a SINGLE day has gone by that Spina Bifida hasn't had a part in.

I still hate all things medical and most of all the thought of cutting a body open, and yet this will be Nathaniel's 45th surgery in his life! 

I am still terrified of shunts, and  while we have been spared the shunt journey up until this point, tomorrow Nathaniel will be getting a shunt and our shunt journey will begin.

There are many things rambling around my heart and mind, but most of all I keep going back to the beginning, and it struck me how many new people are in our lives that don't know the story of 15 years ago. So I decided to link it here, for those of you who want to read it. These are my memories of the beginning of our family's journey with Spina Bifida, the journey that began 15 years ago tomorrow.

LINK 1
http://simplysoares.blogspot.com/2009/04/9-years-ago-yesterday.html?m=1

LINK 2
http://simplysoares.blogspot.com/2009/04/so.html?m=1

LINK 3
http://simplysoares.blogspot.com/2009/05/wow.html?m=1

And by now I am sure you have had enough of my ramblings for now,  so I will sign off and dive back into my bible.  But in closing can I ask a favor of you?  Could you keep this afternoon's appointments in prayer? For clarity on the plan. For peace in the plan. And for God's ever perfect plan to be the one that is followed.

Until later, when I have a plan to share with you...

Well HELLO there!

Hello My Blog!!!!

Oh MY has it been a LONG time since I have written here.....

Over a YEAR!

My bad.

Through the years this blog has been many things to our family, and those who read it. 

It has been a way to share our family with friends near and far.

It has been an outlet for my personal journey with God.

It has been a chronicle of our journey with Spina Bifida.

It has been a way to share my passion for pictures.

It has been a chronicle of our family's journey with Domestic Violence and getting freedom from that.

It has been a way to show off my cute kids.

It has been a way to keep people up to date and share prayer requests on Nathaniel's many health adventures.

And it has been a way for me to express my heart in writing, with the hope that perhaps it touches someone right where they need it.

And honestly? I am not sure the direction it will take now, but I do KNOW that God has been calling me to write and share my heart again. He has been calling on me to do this for a while now, and the typical person that I can be has ignored that. 

I have been busy, you know? 

(Yea right, like that is an excuse!) 

And we just moved half way across the country

 (yea... another excuse). 

And... well I haven't felt like I have much to say that will really IMPACT anyone

 (more excuses!). 

I have been doing the silly little song and dance of "you tell me what to write about and I will write". But, as you have probably guessed that didn't work too well either :) 

So today, I have decided to JUST WRITE... and see where the journey goes!

Plus, now we have TONS of friends and family that are near and dear to us, but so very far away, so I thought I would share a little of what is going on in our new life here in Oklahoma! (oh, and my camera has been dusted off, and is back in use, so I have to share pictures too, right?)

In the new school that the kids go to, Nathaniel is in a self contained classroom. This is the first time we have placed him in this kind of classroom with this much support, and honestly I have mixed feelings about it. I am trying to trust the Lord, and go with it. I know he is doing well, which is a good thing, especially after the blow out he had trying to function on the Middle School campus last year in California. But I also feel like he is missing out on some things. It's the juggle and compromises we have to make some times. One of the super cool things that he is getting to do through school this year is therapeutic horse back riding! It has been MANY years since Nathaniel has been on a horse, and as you can tell from his expression, he wasn't too sure about it at first!

 

 

Once they got him all saddled up and ready to go he seemed much more comfortable, and by the end of the session he was jazzed and ready to go back next week!

Anyways, back to the school thing... 

They load all the kids in the class (about 12 students, ranging from 8th grade to seniors in high school) on a bus and take them to a local stable. Then each student gets a 30-45 minute session on the horse. While the students are waiting their turn there is a classroom set up at the facility where the students can see their friends riding and work on their class work at the same time. I personally think this is great for Nathaniel, a very low key way to work on his Sensory Processing stuff. Having a goal of work to do while something very distracting to him is happening.

This week Nathaniel was in the second group to ride, which was very handy for Steven and I! We got to see lots of his session before we needed to head back for Steven to get ready for work. I was super impressed with the volunteers who worked with the students and the calm peaceful atmosphere of the stables.

 

 

And of course I was also super impressed with my big Little Man, who did a great job and really enjoyed himself!

Well....

The good news is that I actually got a blog post up, and half of the battle is jumping back in the saddle and just getting it done, right? The other half of the battle will be keeping myself going and seeing the direction I am to be heading now. But for now I am going to count it a victory and get ready for some fellowship time at home group!

As always, thanks for reading and see you soon (I hope!)

In Memeory of My Angel

Mixed in with all of the blessings of life are all of the abrupt halts, quick U turns and broken dreams. Sometimes these sharp turns that no one expects are the most defining things in our life. They bring us to our knees, make us totally dependent on Him and shape our hearts into who we are. One of the most defining and devastating moments of my life happened 15 years ago today.

 

15 years ago today I became what no woman every thinks she will be, but far too many are forced to be, I became a mommy to an angel.

 

 

My beautiful daughter, Taylor Ann was born on September 6, 1998 and on that same day she went home to glory, leaving this momma with empty arms and a broken heart.

 

One of the things I look forward to most is the day I get to heaven and ALL of my children and I get to dance together in the presence of our God. The moment when all of my precious children can be held in my arms and loved on at once, for I have never got that joy on earth.

 

 

 

The journey I have taken as a mommy of an angel has taught me so much, more than even I have the ability to put to words. But one thing I know for sure is it has taught me to NEVER take anything for granted! If you love someone, tell them. If someone stands against you, forgive them. If you harm someone, humbly ask their forgiveness. Enjoy the simple glories of life that surround you every day, even in the midst of the storms. We never know how many tomorrows we will be given and who might be missing from those tomorrows.

 

Never does a day go by that my sweet daughter is far from my thoughts and deep in my heart, but we move on too. Her brother and sisters grow up, meet milestones she will never get to, and we all still remember. One thing that reminds us daily of the depth of her touch in our life is her brother Nathaniel. Had it not been for Taylor's death I KNOW I wouldn't have had the courage and determination to fight for life for Nathaniel, to fight for all that makes him a precious part of our life. Taylor's death gave Nathaniel the gift of life.

 

 

Today while we remember our sweet angel, I ask you to love on yours.

 

Give hugs and kisses.

Dance to imaginary music.

Laugh and giggle.

Forgive.

And count your blessings!

 

Taylor, you are missed.

You are LOVED beyond words.

You are our treasure.

Happy 15th Birthday sweet  angel Taylor!

Testimonsy

 

Soon after we came home from Oakland I was asked to give testimony at church about the experience and how God sustained us through the valley we walked through. This is what it was shown at church after some of the editing. I thought some of you might like to see it.

Beach Magic

If you know us at all, you KNOW we LOVE the beach. It is part of the fiber of who our family is. Also, you probably know about out "other" family... our Project Surf Camp family, which is also part of the fiber of who we are.

 

 

With Nathaniel's recent health struggles and surgery I was very worried that we wouldn't get to experience the magic of Project Surf Camp this summer, and my heart was breaking over that. I think Nathaniel's was too, as it was ALL he talked about while in Rehab. You can't possible imagine the excitement and relief I felt when Dr. Sun told us he was released to surf. I actually did cry tears of relief and joy. Our family was able to join PSC for the opening day of surf camps season this year, yet I have been remiss in blogging it because the emotions were just too raw. I am going to take a stab at it today, and hope the tears stay where they belong!

 

To us, Project Surf Camp is:

 

 

Family that welcomes us home with open arms and love in their hearts.

 

 

Accessibility to one of God's greatest gifts for ALL!

 

 

A chance for siblings so differently abled to do something magical together.

 

 

It's a time for personal victories.

 

 

And a time to share the blessings with treasured friends.

 

 

To me personally, this day was

 

 

About contagious JOY! From a boy who had MAJOR, life altering spinal surgery just 38 days before this!

 

It was about personal victories and finding out that no matter how changed his body is, he can still fight back and be victorious!

 

It was about our family finding normal again.

 

And it was about PRAISING the Lord for His GREATNESS!

 

On this special day at Project Surf Camp, I hung up my hat as Board of Directors member, I didn't even take many pictures (and if you know me then you KNOW that is a miracle),

 

 I just BASKED in His glory.

 

I let Him wash all around me as I prayed and worshiped Him for His GREATNESS.

 

I wept tears unending.

 

And I TOTALLY enjoyed the precious gift of my children SURFING TOGETHER!

 

If you wonder why we say that Project Surf Camp CHANGES LIVES, this is just one small story of the HUGE greatness this camp does.

 

If you want to experience TRUE magic, and God's blessing, let me know, I would LOVE to take you down to the beach with us, get you hooked up to volunteer.... I GUARANTEE you will walk away a changed person.

 

I am excited to say, we are heading down to the beach today... and I can't tell you how much my heart needs a little magic today!

 

I also want to mention a quick THANK YOU to Breann Hollon of Breann Hollon Photography for the AMAZING images of this special day that she captured. My dear, sweet friend volunteers her time and talent to come out and take fabulous pictures that she provides to PSC families free of cost. What a sweetheart! But she also does great work here locally too, so if you need so fabulous photographs, make sure you look her up!