Friday, July 26, 2013

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!

Monday, July 15, 2013

My Cup Runneth Over

I am sorry it has been so many days since I updated. We have been basking in the GLORY of all God is doing, and running like crazy to try and keep up with life! Let's Go back to Tuesday and see what has been happening.
Tuesday morning, after getting his kicking new shoes, Nat rocked his last couple of therapy sessions. While he was working away, I was packing away. We sure managed to get a LOT of stuff over the 6 weeks we were at the hospital! But I got it all packed up, checked out of the family house again, and got the car packed.

The Rehab unit is mostly kids that are there for long periods of time. Believe it or not our 6 weeks was actually pretty short. They deal mostly with traumatic brain injuries, but also other neurological things (like Nat!) too. One of the cool things that the Rehab team does is throw a party for the kids when they get to go home. These kids work SO HARD with these therapists day after day and they all bond so tightly, to just leave with nothing would be so hard on all of them. So all the kids from the unit gather around the nurses station, as many of the nurses and therapists as possible come over, and they sing and have treats and give the kiddo leaving a gift. It is really cool. Quick, easy and yet provides such great closure!

After Nat's party there were a few papers to sign, discharge directions to go over and balloons to collect... and then we were OFF! 

One of my now so smart moves became apparent next, as the car told me just how NOT happy it was about not moving for 6 weeks. My battery was dead, sigh. It turns out all of those security escorts back and forth to the family house came in handy for more than just keeping me safe in the mean streets of Oakland! When the security team found out my battery was dead they came right over and jumped it for me. Such kind guys! So, after a little delay, this boy and I were ready to hit the road! That picture is both of us sitting in the front seat of the car, ready to get going!
I was totally exhausted leaving Oakland. The emotion and stress of the last 6 weeks had really caught up with me, along with the NEED to see home, to hold my daughter, for my family to sleep all under the same roof and for me to sleep in my own bed! I was sort of concerned about the drive home, it was a long 250 miles we faced, but I just laid it on the Lord and started driving. The first hour or so was heavy traffic and not so familiar roads, but then it was like the load was lifted. The drive was actually so very easy and almost like someone else was doing it. As we got closer to home and back in our familiar turf I started to get anxious again. That happens to me, I just want to BE HOME, even though I know we have about an hour left. Right then is when a dear friend called me and chatted with me (yes, via my hands free set!) all the way till I pulled into my driveway. He kept me laughing and giggling and made those last miles fly by.

Then there was this BEAUTIFUL sight. I can't tell you how thrilled my heart was to see out house to pull up to our front door and to walk into MY sanctuary! There REALLY is no place like home!

And then my cup really did run over. Audrey and Damen had made a sweet welcome home sign for us, my friends and church had filled our fridge with groceries (and OUR kind of food too!), a dear sweet friend had put diner in the crock pot so we came home to a fresh cooked meal and a house smelling divine, and there were even fresh flowers on my dining room table. I am truly so blessed by the people that God puts in my life.

Since being home, I can't explain the PURE joy of being here. From the simple things like friends who came over IMMEDIATELY to give hugs and say welcome home, to the bank tellers welcoming me home with smiles and hugs, to the big things, like my family back together as a unit and to freedom of our own home. It is all such a blessing.
Being home means so much, like sleeping in a real bed, not the window bed that was 6 inches shorter than I am! Like not hearing the IV alarm sound constantly all day and night long. Like turning the lights out at night so it is actually dark to sleep. Like not having to wear security badges 24/7. Like taking a shower with bare feet, no flip flops. Like having privacy and dignity. Like not having to sleep fully clothes at night! Interestingly it was the little things that drove me nuts there, but the big things that I am constantly blessed by here. I can NOT express how much difference the love and joy and prayers that people pour over us has made in this journey.
I usually have so many words, and yet this journey seems to have taken them all away from me and left me speechless. But I did write this status update the other day on Facebook with tears of joy and thanksgiving running down my face, perhaps it can express my heart:
"What a day of emotions and love. I can't tell you how my heart feels after brunch with Bea pampering by Heather, walking into my home church for the first time in weeks, a warm welcome from The Rock Harbor Worship Team, hugs from dear friends like Gary & Trish, and finishing the night off with Katy and my PSC family. After the journey we have been on, my heart is humbled and blessed by the love I feel today. There really is NO PLACE like home, and I am SO BLESSED by the amazing people God has put in my life. Tomorrow? You will find me on my favorite beach watching magic happen, and praising Him with tears and joy... I KNOW I won't make it through tomorrow without tears of pure thanksgiving and humility at God's GREATNESS."
So for all of you I have left hanging there wondering how we are doing, please let me tell you we are FABULOUS and BLESSED. We are redefining "normal" in our house since Nathaniel is a really different boy than when we left (cognitively and physically functioning different), we are learning to be a family again after so much time apart and we are welcoming God's direction into every corner of our world. And I haven't forgotten the lessons God taught me either, I am making changes, following His lead and opening my EVERY breath to Him and his leading. I have a feeling God isn't done with this journey yet.
We love you and will try to keep you updated in our world! As always, thanks for standing with us in prayer and love and support!

Thursday, July 11, 2013

Keeping it REAL... Weigh In!

So, you may or may not remember that back in January I set a goal of losing 60 pounds this year by changing my eating habits, and I said that I was going to keep the blog updated with my progress. Well I have sort of not done a great job on updating the blog, but I have been working hard on my goal!
I have radically changed some of my eating habits this year, I am trying to exercise more (man it is difficult to find motivation to exercise!) and I am tracking my journey. The last 6 weeks were tough in the hospital, but I was sort of amazed when I got home and weighed in. So I thought this would be a good time to update, and make a new commitment to kick it up another notch!
When I began this journey it was mostly about the pounds to me, but I did record the inches too. Recently I have decided it is about equally important, pounds and inches. I am about 5 pounds off of my yearly goal, but I am way happy with the overall loss, especially in inches!
So here are today's pictures....
Yes, I finally got daring enough to put pictures up! It's time to be REAL!
In the last 6 weeks I am down 11 pounds, 7 inches in the waist and 2 inches off of the hips!
For the YEAR, I am down 25 pounds!, 9 inches off of the waist and 4 inches off of the hips!
Oh... and I fit in a pant size I haven't fit in since BEFORE Audrey was born! And Audrey is 10 years old... so that is great too!!!
It is time to kick this effort up another notch, so I have joined a 90 day challenge and will be working real hard over the next 90 days to loose more inches and weight. I am excited to see where this journey will take me, and I am praying it will take me to a healthier place!
If you are interested in a journey similar and want to help encourage each other let me know!

Tuesday, July 9, 2013

Peach's Neet Feet

A while ago another Spina Bifida mom was talking about these super cool shoes her little guy go from a group called Peach's Neet Feet. Mr. K had been through SO MUCH with his SB, and I thought it was really cool that some one would make him special shoes. But I didn't really think of it for Nathaniel, because at that time he was fairly stable.  When we began this current journey with his spinal surgery, I was contacted by someone associated with the group and asked if I would like to apply for shoes for Nathaniel. I thought it might give him something cool to work with on his journey back to heal so I went for it.
Through a series of issues the shoes seemed to be something that would never actual transpire. I really though it would be cool to give them to him around his birthday, but God had other plans. In His perfect way, they showed up late last night. So Nathaniel got them this morning, his last day here on Rehab and his GOING HOME day!
He was REALLY excited to get his special treat....
I gave him the shoes one at a time so he could really appreciate the uniqueness that is in each design.

And he was so EXCITED each time he turned the shoe and saw something new.

When I was filling the paper work out for the shoes I was REALLY concerned about the size and style because in the past the ONLY thing that fit were the Converse Easy Ons. So you can imagine my absolute delight when the shoes fit PERFECTLY over his new braces!
So when we applied there was a form that we filled out asking all kinds of questions about what Nathaniel likes and this is what the fabulous artist did from Nathaniel's information:
My little sports man... he loves sports of ALL kinds so here is a jumble of balls.
And of course... my little man LOVES to surf, so here is a fabulous collection of surf boards!

Nathaniel's journey is Spina Bifida, so here is his SB awareness ribbon.

We always rest in the Lord, and Nathaniel's favorite football team is the Baltimore Ravens, so the toes of his shoes represent that.

And of course... His name, in his favorite color!
I am amazed by these AWESOME shoes!!
And Nathaniel is already ROCKING them at his final therapy sessions today!
If you are interested in finding our more about this AMAZING organization, go check them out on Facebook:
To all who helped make this unique and special gift happen!

Hidden Treasures

I sure have been a "Debbie Downer" recently haven't I?
I don't mean to, it is just that journey had gotten to the point that it totally overwhelmed my spirit. But Just like he always does, God brought the rainbow.
But before we head out for good, I do want to praise the Lord for the treasures along the way... Things I feel like my recent gloom has prevented me from praising Him for enough.
Thank you Lord for a safe bed. When Nathaniel first came out of surgery he could not stand AT ALL on his own. But he kept forgetting that and trying to get up out of bed. Someone had to be with him CONSTANTLY, but when family went home and it was me alone, that was too much. With this bed, I could zip him in, clip the locks and walk away. I didn't have to worry about his safety and that was HUGE. 24/7 bedside vigil is just impossible for one person to do alone!
Thank you Lord for nurses after your heart. This nurse was one of the BIGGEST blessing of our whole trip. She was AMAZING. She loved on us. She took AMAZING care of Nathaniel. She went to Trader Joes and brought us real food. She got batteries from her house for Nathaniel's remote control car. She hugged on me when I couldn't handle anymore and broke down in tears. She fought for what we needed. She even brought me fresh nectarines off of her tree. Nurse Debbie is a jewel of God, and an amazing sister. We are SO blessed that she was our primary nurse!
Thank you God for simple things... like AMAZING instant coffee so I had something to look forward to every morning when I woke up. Coffee here was close to $4 a cup, which is RIDICULOUS, so the Via that a dear friend gave me was a life saver. No one waned to face me in the morning without at least one cup in me!
Thank you Lord for a GREAT Rehab therapy team, but especially this AWESOME Physical Therapist that pushed Nat so hard without him even realizing he was working! This is the reason we stayed here so long, so Nathaniel could get this amazing therapy multiple times a day. I KNOW this is one of the reasons he is making such great gains.

Thank you Lord for AMAZING friends that made the LONG trip up to visit us while we were on this journey. These trips were pure breaths of fresh air. Bea, Tammy, MeLissa and April, you will never know how deeply your sacrifices touched my heart and helped my spirit.
Thank you Lord for GREAT activities and blessings to the children being treated here! From personal screenings of Monsters University, to Joy Jars delivered by Chicago Bears football players, to sweet gifts from Child Life, to this amazing visit, and so much more. There were always special things for the kids to be blessed with while they are here.
Thank You Lord for this court yard, which became my sanctuary while we were here. This girl needs her fresh air, and God scenery and space, and this court yard was a safe place that I was allowed to take Nathaniel with me to get those things I needed. I don't think I could have survived here without this place. I laid on the benches here and talked on the phone or listened to my iPod for hours. Nat played here daily. And it was just our sane place to go.
Thank you Lord for new friends, brothers and sisters in Christ, who gave freely of their time to bless this family they had never heard of before. And especially Mina, who continues to bless me with her friendship and support all the way through this journey! What a treat to meet, be blessed by and bless others through our storm.
 And most of all, Thank You Lord, for EVERY SINGLE individual who made this journey with us. From brand new friends on line, to brothers and sisters from church, from dear sweet friends to community members who saw our story and joined with us, from family to the strangers we met on the elevator that we stopped and prayed with. Thank you Lord for EVERY single prayer that was uttered on our behalf, for every tear cried, for every hug given, for every text message, for every Facebook message or comment, for every phone call and for every conversation. Thank you Lord that every step of the way we were wrapped in YOUR family and you NEVER left our side. Without the outpouring of love, support and prayer we have gotten we could never have completed this race.... and the finish line for this leg of the race is right there in front of us!!
So right now, in this moment, I am on my knees praising the Lord, for He is SO good.... ALWAYS!

Monday, July 8, 2013

Sunday Blahs

I can't not tell you HOW happy I am that yesterday was the LAST Sunday we will be here for this journey! I do think that Sundays are the hardest day to endure here  for many reasons. Some one said to me yesterday that it sounded like I have lots of little things adding up to make a big blah day, and I totally agree!
First off, on Sunday I miss my church family more than any other day of course. I miss a Spirit filed time of worship with other believers. Not that I don't listen to worship music almost constantly on this journey, but it is different with my family all around me. Thankfully, I don't miss message, as our church is fabulous at getting message up early Sunday afternoons. And I miss all my HUGS from church. Who knew I fill my hug tank up at church each week? But man, am I running on dry right now!
Also on Sunday Nathaniel has NO therapy! A full day of entertaining a bored child in the hospital, not so fun. The last two weeks the weekend doctor has let me take Nathaniel to the family house for a few hours each Sunday. It was a blessing to get OUT for a bit. Today the doctor heard me say we were heading over there and she told me NO! I was seriously in tears. I tell you, it's the little things that make or break hospital stays. Today it was the inconsistency that sent me over the edge. A policy should be a policy, it shouldn't matter WHO you ask, the answer should be the same. Unfortunately many things around here have depended on who you ask, and that has been very difficult for me to tolerate. Don't get me wrong, the rehab here has been fantastic, it's the little things that are driving me crazy though.
Between those two little things, and some personal stuff that is weighing heavy on my heart I had a difficult time dealing with pretty much anything yesterday. I think I have definitely reached my breaking point here. I was plugged into my iPod almost all day, just filling my heart with praise and worship, and desperately trying to find the grace to walk through the day in a manner I could be ok with. I have a feeling this will be a struggle for the remaining days here (it is early in the morning, and yet I have already been in tears a few times today). Please, if you have anymore prayer energy, pray that I can make it through this is in a light that continues to bring glory to God, not in a crazy mama bear manner! I so don't want to be that mama bear, but I am having a hard time keeping her down!
Today is back to the grind for Nathaniel, he has 8 therapy appointments today! The final push to get him strong before we head home some time this week. I plan to keep myself busy and distracted in hopes that I can remain calm and full of grace, we shall see. Oh, and I plan to search high and low for the missing mail package! Found the missing DS this morning, just one more missing item, and I can go home with everything!
As, always, thank you for joining us in this journey. We love you and couldn't be where we are without your prayers!

Saturday, July 6, 2013

Getting there....

The final days of this journey are getting incredibly hard, but we are trying to hang tough. We know that we will be home in a matter of days... I pray! No set backs, I really can't handle a set back right now!
On the 4th of July we had a special visit from some really sweet, friends of the heart that we don't get to see very often. April is an amazing girl that I just connect with at a heart level who happens to have a Spina Bifda Rock Star like I do! Blake is 11 and he and Nat are buds. We don't get the opportunity to see each other often, but when we do it is always a sweet time! April, her dear hubby Dave, Blake and their littlest guy came to see us on Thursday!
These two boys are AMAZING at what they endure on their journeys and yet remain so pure in their spirits. God continues to do amazing works in these boys!
The boys played football with Dave while April and I got to talk. It was so wonderful to see these dear precious friends.
The rest of the 4th was a roller coaster that I don't care to rehash. I can just say, please pray for the next few days until I can get home. This journey is taking it's toll on all of us. Thankfully it ended well with Nathaniel and I curled up in the window watching the fireworks all over the Bay Area. It wasn't our normal 4th of July, but at least it was something!
So, also in the last few days we have got all the dressings off of Nathaniel's back, and I thought we would show you the journey he has been on for the last 5 weeks.
These pictures were taken the night before surgery, June 4, 2013 These are the scars that Nathaniel had from his first closure done before he was born.
This was taken on June 15th, 10 days out from surgery.
Dr. Sun had told me that he would have to cut as high us as Nathaniel's shoulder blades, so I was THRILLED to see how small of a cut was actually made. I guess it is all relative.
This picture was a few days later on 6/20/2013, I am amazed how quickly Nathaniel was healing.
This was taken on the 4th....
All the dressings off, all the sterie strips gone, and most of the stitched dissolved. I am THRILLED with the healing. and I am actually really thrilled with how relaxed the whole scars looks. I think it is actually going to heal better than his first closures! AND the side scars that were pulling so badly have relaxed some too in the process. God is amazing.
We ran into Dr. Sun while we were outside playing the other day and he gave Nathaniel and I some AWESOME news.....
Drum roll please......
Dr. Sun cleared Nathaniel to SURF starting next week!!!!!
We will make the opening day of PSC!!!
God is AMAZING!!!!!!!
Thank you all for standing with us in prayer!

Wednesday, July 3, 2013

Counting DOWN!!!

We have been counting days for quiet some time, but now we are OFFICIALLY counting DOWN to GO HOME TIME!!!
Can you tell I am a little bit excited???
But we got one step closer to going home today. I was given our first two weeks of therapy appointments for home!!  I mean, if they want us to keep the appointments that they made at home, then they have to LET us go HOME, right? That is my story and I am sticking to it.
This boy is getting TIRED of hanging here. But he is still working SO HARD on all of his therapy and strengthening. Don't let that face fool you either...he had just finished TORTURING his momma with tickles and what not. The picture was to distract him from tickling me more!!

While Nathaniel worked hard at therapy today my dear friend Tammy came up to kidnap me! Seriously. I got the "one hour till you are being KIDNAPPED" text to prove it. She took me up to Berkley and we walked around the OCEAN for about an hour. It smelled like an ocean, and the wind was divine, and there were ocean like critters and what not... but that water just looks WRONG and there were WAY too many industrial things in the wonderful ocean. But it was so nice to be near the ocean. Filled my soul back up.
After our walk we found a funky swanky place to eat. The food was wonderful, but I was laughing at
the contradiction in the surrounding. We had a wonderful time of fellowship and fun and yummy food.  And then, Tammy treated me like a princess! We found a place to get my hair cut!!! I was SO SICK of the nappy way my hair was, but I hadn't had time to deal with it before we came up, and it just didn't seem important before, but today, it was just on my heart to do it.

So momma got a cute new do and is feeling a little better about herself.
Tammy and family also got Nathaniel a present. She didn't get to see him, as he was in therapy the whole time she was here,  but she left his present. He was totally excited with it when he opened it later! And I am sad to say, he beat me at Mexican Train Dominos. I don't seem to be able to win any board games this trip!

Another exciting thing happened in the late afternoon. A player from the Chicogo Bears walked into Nathaniel's room with a box, a story, a prayer and a gift. It was way cool!
Kyle was his name (I am pretty sure) and he had a box in his hand. He shared a story about his "little friend" Jessie Joy Rees who battled cancer, and yet through her journey wanted to bring joy to other children who were suffering. So she and her family came up with the idea of Joy Jars. Inside the box was a jar full of goodies for each child here. After Kyle shared his story he asked if he could pray over Nathaniel and then gave Nat his gift. It was a short but touching visit.
So this is Nathaniel with his Joy Jar. It is very touching how many special things the hospital has for the kids here!
we are another day closer to HOME and we couldn't be more excited!
Please pray with us that everything stays on tract and we get to actually GO home on the 10th!