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!

 

So...

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!

Mommy Escapes

Sunday is a day of rest around here. No therapy, no appointments, no real schedule to keep.

So we had a REALLY hard day on Sunday.
We blew bubbles....

 

And played board games in the sunshine.

 

And looked at the sky while singing praise and worship songs REALLY loud.
(Yes we got some funny looks for this one)

 

And we even played a ton of football even though it was BLAZING hot!

 

Monday was back to normal... kinda.

 

Nathaniel had a busy day of therapy ....

 

And momma got mommy napped!

 

Mena, one of the ladies from the Black Sheep that visited us a few weeks ago came up and took me out for a while.

 

 

She took me to Jack London Square, where I have never been before. I was a bit apprehensive that is would be filled with people, but honestly it was totally abandoned which was totally fine with me!

We walked all around and checked out the cool art work everywhere.
I really loved this mural and the heading on it:
"Peace Making, the Power of Non-Violence

 

And this section of tiles spoke to my heart too. It was really fun to see the great artwork on display in a town like this.

 

After we walked around for a long time we had some lunch and wonderful fellowship. It was really nice to get out for a while and hang with an adult! I am so thankful that Mena took time out of her life to come up here and hang with me for a few hours. After all, I am just some sister in Christ that she has met one other time. But God was with us the whole time and we had some wonderful fellowship!

 

And so Monday ends....

And we have NINE MORE DAYS!!

 

Nope, we aren't counting down or anything!

 

The Ugly Real

So often here I focus on the journey, and I tell myself I am being real, but in the last week or so I have been struggling with HOW real to be. This journey we are on is about Nathaniel, and his healing and the AMAZING things God is doing in this little guy. But God has decided to make this journey about more than that for me too. God is showing me many things about ME that I don't want to see, that I am struggling with and that HURT.

 

Then the question becomes what do I do with those things He is showing me and teaching me? Am I real? Do I share them? Or do I bury those lessons and struggles in my heart, put on the mask and go on with life. Often I do just that, wear a mask and go on with life. But more and more I don't think that is what God has for us.

 

 There is this Casting Crowns song that totally speaks to my heart. I DO NOT want to be a happy plastic person. I do not want to wear the mask. I don't want to trade the alter in for a stage. I NEED to dare to let you see the truth behind the person that you imagine me to be.

Check out the Song HERE so you see what I mean, then I will spill my heart. No more masks for this girl today!

I started to write a quick email to a friend today to update him on Nathaniel and share a blog link, instead all of this PAIN from my heart poured out into words. It kinds surprised me, because I keep stuffing it back down, but he is a prayer warrior... so I guess God needed me to spill it somewhere safe. After thinking about that email for a while, I think God wants it spilled further. I NEED to be real.

 I love all the support and prayers we have gotten, but I cry every time someone tells me I am strong, or something along those lines. Seriously cry. I am SO NOT. God is strong, and God is with us, he carries me often. But any strength is not mine and that has made me stop to think what I am doing wrong that people don't see God in me when he is ALL that is in me? And it makes me think that I am wearing the masks again, and I don't want to wear masks anymore! So it is time to let it all out again.
 

Going into this journey my focus was 90% on Nathaniel and his part in the journey, as I think would be normal right? There was so much to consider for Nathaniel and his journey. I was concerned about some things at home, and money and that kind of think, but I really didn't think of ME in the journey. I didn't think of sitting here day in and day out without the busy of life to distract me. I didn't think of all the time that I would be deep in His arms drinking from him. And I didn't think of all the lessons God would have to teach me in this time. After all, He really has me in a place of being a captive audience!

As we endure more and more I am finding myself slip into a DEEP depression. Really, haven't been this bad in YEARS. I have so little to do here, but I find myself not able to do even that little. God is just working me over daily. I have almost filled an entire journal in my time here as I have prayed through so much that He is laying on my heart. I guess I didn't realize some things about myself.. like the comfort I take in my daily routine, or how much I depend on human touch in my day, how much I like being connected to people (it is SO lonely here) or how terrified I really am of "strange places"..... I am not a person I am the least bit happy about being right now.

I know some of the problem I am having right now is my Agoraphobia. As much as I hate it, there is no denying it. It controls so much of my life. I just have the HARDEST time in new places, among strangers and in unpredictable settings. I am so uncomfortable here it is all I can do to function daily without loosing my mind. I have been here for 26 days now and I have not been outside of a 2 block radius! Seriously. Have not. Hospital, Out Patient Center, Parking Garage and Family House. Those are he only places I have been. I am SURE that is not helping my overall well being, but the truth is I am TERRIFIED to attempt anywhere. I have not had a single panic attack on this journey (praise the Lord) and I just am terrified to push the envelope. New people, new routines, new everything, it is all I can do to process all that I HAVE TO, I just can't introduce anything else. So that means I have to meet our every need in those few spots... it sure has been interesting and smothering in some ways. But not so smothering that I dare venture out into that big mean world out those windows.

Another area that God is showing me is that of human contact. I have always known that I am super close to many of my friends, and church family. I know I am a human touch kinda girl, anyone who knows me at church knows that as I take any hug I can get. But what I didn't realize is how that affects me as a single girl of God. On this journey I am SO far away from all I am used to drawing strength from, and I am weak from it. My fuel tank is constantly hovering near empty. But should that be the case? Shouldn't I be able to fill that tank up form the Lord? Yes, I understand he sends me my friends, but as a single girl in Him, I should take far more nutrients and filling from Him and less from those around me. It has been interesting having to go such long periods of time without a simple hug, and in that He has shown me much. I am ALWAYS a music girl, but this iPod has never been far from me on this journey. I am CONSTANTLY praising him, and that is filling me up some. I am also DEVOURING his Word, which is kind of unique for me. I usually do well to do my morning reading, but right now, I am reading constantly. It will be interesting to see how this continues (or if it does) at home. And through this very topic God has been speaking to me about my broken marriage and what I need to do there. He has been very specific about the path I need to walk as soon as I get home. Not looking forward to this path, but if He commands it I will do it. All to say, I MISS my hugs, but God is showing me that I use them too much to fill holes He should be filling.

The other thing that He is showing me that doesn't surprise me, but at the same time does, is my PASSION for serving Him. My heart SERIOUSLY BREAKS every time that I miss a regular serving time. Not for me, I mean I miss my friends and stuff but not so much missing the hard physical labor that we do! But my heart breaks that my hands and feet are not bringing glory to Him in this time. I KNOW He has provided hands and feet to do the work (and more) that I usually do... but mine just ACHE during those times. It is crazy. I KNOW I am called to serve Him, but I REALLY REALLY know now. And He is talking to me about HOW and WHERE I serve Him. I think He is proving his point, but good grief! Enough already, right?

 I know it seems like we are on the downhill side of things looking in from the outside, but honestly? Right now I wake up not sure how I am going to get through each day. I cry too much, I can't motivate myself to do anything...  I just really DON'T like the girl I am right now... I feel like God is probably even annoyed with me. I should be shouting from the roof tops at how awesome He is for bringing my boy through this in such glory, and all I do is beg Him each day to carry me through the day. My friend said it so well tonight, Nathaniel is on this journey of rebirth in some ways, and healing and I am here to support him and make sure his needs are met, shouldn't that be enough? Couldn't God wait on the rest? But obviously not. Obviously He has a FAR bigger journey to take us on than I could have ever imagined. I started this journey thinking it was about Nathaniel and what God would do through him and with him. Instead God has made it about a rebirth of sorts for both of us. Cuz that is just how God rolls.

Ok... So I know this was really just processing out the most recent wrestling match with God for me, but I am hoping that in some way it speaks to someone else too. And more than anything, I hope that it helps people to see why I am constantly saying, I am just a girl, He is the strength.

A Birthday Update

(sign delivered by Child Life Specialist at CHO)

 

So, in case you somehow missed it, yesterday was Nathaniel's 13th Birthday! And even though we were in the hospital STILL, we celebrated in style!

 

First thing this morning his OT brought him an AWESOME hat that her wore all day long

 

 

In the morning he had PT, and speech, and we got the GREAT news from his doctor that he was cleared for a SHOWER! Yes, that stinky boy hadn't had a shower since June 4th.. .24 days.... yea, he SO NEEDED it and his back is now healed enough to have running water (no soaking water yet, but running is now OK). So for OT Nathaniel got to take a SHOWER in the real shower! That was a birthday treat for both of us!

 

The other good thing from the medical end of life is that Nathaniel's bowel and bladder have balanced back out to what is more normal for him!! We are FINALLY back in cloth diapers! Which of course is delightful in the hospital (you see the sarcasm font, right?) but it is so much better than disposable and completely stripping every time we cath! We do have to run a 24 hour urine test starting today, but that is more to check the chemical components, since function level he is back to normal. I am really happy about this development, I was starting to get really worried that it wouldn't balance back out to something we were used to.

 

In the afternoon, for his therapy session, Nathaniel got to go on an OUTING! He and his therapist and one other patient went on a Fun Friday outing to a Pizza place for Nathaniel's birthday. They worked on ambulation in public, using his new equipment in public and worked on social skills. Fun times! He came back in high spirits to a special treat at the hospital!

 

 

Pixar is a big supporter of Children's Hospital Oakland, and they have a new movie out, Monsters University! The kids at the hospital all got a cool (reusable) goodie bag with stuffed animals and baseball caps, and there was a screening of the movie for everyone! You could go into the group area to watch it, or you could watch it on the TV in your room. Knowing that we had company coming we chose to watch the movie in our room with all of his new goodies.

 

 

We had special guests show up in the middle of the movie, so Kaleb, Gavin and Audrey got to see lots of the movie too!

 

 

Towards the end of the movie one of the Pixar animators that worked on the movie came in to visit and draw a personal picture for each of my children. He talked to them, hung out with them a bit and drew each of them a picture. It was pretty cool.

 

(Nat & Audrey with their personalized pictures)

 

After all this excitement we took the kids outside to play. They had a blast with bubbles, but all the  pictures are on Bea's camera! And we played a game of Sorry, and in general hung out in the sunshine and let the kids be kids. It was nice to watch them laugh and giggle and be NORMAL. I am looking forward to many more normal minutes when we are back home. It has been hard for me seeing the serious side of life all the time and not getting to see the fun, giggles, laughing, goofing side of life... I need more balance in my world!

 

 

When we came back into the room there was a wonderful cake that the hospital provided for Nathaniel.

 

 

We were able to share cake with our friends and nurses before our friends left for the day. It was so great to see Audrey again. I am counting the seconds until we get to be a family together again. Audrey headed off with our friends to celebrate Gavin's birthday with him the next day, and Nathaniel and I settled in for another night.

 

Nathaniel's special day was filled with fun deliveries (presents from Gramie & Papa, Aunta, Bri and Jo, the hospital and his therapists), Balloons galore, friends (new & old) and lots of love. It isn't the birthday I would have chosen for him, but the people around us made it great for him anyways.

 

And he wasn't forgot by friends at home either! My Facebook page is filled with hundreds of "Happy Birthday" wishes for the boy, he got phone calls and special pictures, and I KNOW he was covered in prayer. Thank you to so many people for making sure he knew how loved he is on his special day!

 

Through it all, no matter how happy I was for him, I have been fighting horrible depression and gloom. I just don't know how I am going to get through this next two weeks, except for one step at a time resting in Him the whole time. I did rotate back into the family house today, and I am praying that a few hours in a regular bed will help me out, but I am also the only one here with Nathaniel right now, so I am not getting long blocks of sleep at a time. Today we are back to work, with therapy and healing and learning our new normal. I pray that my heart adjusts to this journey and I start feeling a little better, more myself.

 

Thank you to all who helped make Nathaniel's birthday special. Thank you to those who are still following our journey weeks in, and thank you most of all for your prayers.

 

Here is a cute video of Nathaniel playing with his birthday present from Bri & Jo... can't wait till he is home and shooting THEM with frogs! Hope it brings a smile to your face.

 

VIDEO HERE

 

 

 

 



Family Meeting and more

Our first family meeting was yesterday. A family meeting is when I get to sit down with the whole team treating Nathaniel and hear what they have to say. Being brand new to this facility I was a little apprehensive about what this would be like. But I prayed lots, and was as ready as I could be for it.

 

 

After the meeting I took Nathaniel outside for some sun therapy and I took some quiet time in prayer and listening to music before I could even share with close family and friends. I plugged in my iPod, laid in the grass and found a patch of sky that didn't have anything "city" in it.... and PRAYED through all I had just heard.

 

 

It's not that I heard so much BAD news, it's just that it is all so overwhelming at times. And there is no one to talk it through with, so I had to talk it through with God.

 

So...

 

The overseeing doctor had a few thoughts, mostly centered around the fact that she feels that Nathaniel wasn't getting proper services and was under conditioned coming into this situation. That was difficult to come into. I work HARD to get him services, we do TONS of therapy at home daily, and I try very hard to stay on top of his care and stuff. So it was defeating to hear that she doesn't feel like his chore strength is what it should be, that he is in the wrong braces, and that his home care plan is not adequate. And that is what we started the meeting with. Joy.

 

The medical doctor was next. Nathaniel has been battling kidney issues, a UTI, and a migraine all on top of the recovery from the spinal surgery. So we had a lot to discuss team wide there, but his medical doctor is AMAZING at talking to me, so I wasn't surprised by anything she said. If anything her talking centered me again after the first report.

 

Next up Speech Therapist. The speech part of this treatment was adding sort of as a "I have time and he could use it" thing. Nathaniel hasn't had speech services in years. But her report  was another downer. She talked about his pragmatics, she talked about the lack of sequencing, she talked about the lack of social and conversational skills and she talked about the self centeredness of Nathaniel. All things I know, even some are things I have TRIED to get addressed, but haven't had much luck at. Then she started in on his current IEP and all the "necessary" things she saw missing there. Again, I went to the "wow, I thought I did this better" place. Sometimes I think these people need to stop and think about how they come across to families that are working so hard.

 

Next up OT (Occupational Therapy). Now Nathaniel gets OT at home once a month, so I am pretty up to date on what is "normal" there. Here they have been working with him on regaining self care skills, and how to do things he did before the surgery, but now has to do different ways, like pulling up his clothing or cathing or reaching things. Their report was pretty much in line with what I thought it should be and right what I have been seeing while we have been here. They also commented on how well mannered Nathaniel is with them. That made me laugh, as I always TRY to teach my children manners, but they tend to push my buttons so well!

 

Finally we got to the meat and bones of the report, PT (Physical Therapy) but the bummer is that Lucy, his fabulous therapist is on vacation this week, so we have had a lot of fill ins. This therapist was encouraging that she said he is gaining strength daily (which I can totally see) and we are all happier with the full AFOs and how he is walking in them. The discussion did come up about floor reactive AFOs and I am pretty set against those, I would far rather see him in a dynamic brace that is less cumbersome. This is a discussion I will continue to have before getting his final braces, but for now the new ones are working well. The PT report was very encouraging that they do feel like he is making great gains, and I feel like he is an amazing hard worker... so we agree on that!

 

Then FINALLY we got to talk about the important stuff. You know, the "when in the heck can we transition HOME" stuff. Now don't get me wrong, I KNOW this is where we are supposed to be, and this is God's plan for us right now, but DANG IT it is SO HARD to be here. So hard missing Audrey, so hard being so far from family and friends and so hard trying to EAT here, lol. I was both encouraged and discouraged with the pragmatics and time line laid out in front of me. Nathaniel will need PT 3 times per week at home, and will continue to need daily work. We will go home with a walker most likely, because as much as he is gaining, they don't expect full ambulation for many more weeks. And...

 

Drum Roll Please....

 

We have an expected discharge date of....

 

July 10th.

 

Yea, two more full weeks.

 

I think I can.....

I think I can.....

I think I can.....

I think I can.....

 

Yea... it is discouraging  in some ways. I am SO ready to be home NOW. But I am praying that it will help Nathaniel be that much more ready when we do go home. Please Lord, make it all worth it. And if you are praying for us, please pray I can keep my sanity here for 2 more weeks, that things with Audrey balance out, and that Nathaniel looses his "teenager" attitude that is pushing my buttons right now!

 

So that was yesterday....

Today I want to show you what a ROCK STAR this kid is!!

 

But technology is being EVIL to me!

The only place that my phone will upload the video to is Facebook, so I made it public and a going to post the link...Please, go watch it.

 

WATCH VIDEO HERE

 

This ROCK STAR couldn't stand post surgery. Last week he did well to stand with assistance. Today is WALKING OUTSIDE of the therapy gym for the first time post surgery! Our God is SO GREAT!!!! Just thought you would all like a little sample of how your prayers are blessing us!

 

If for some reason you can't watch it, here are a few stills for you... but they are nothing like the video!

 

 

Is this kid amazing or what?

 

Yea, I think so too!

 

As always, thank you for taking this journey with us, we love you!