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!

 

Poor Poor Guy!

The view from my window bed was gloomy and rainy all day.

 

 

Nat struggled through the day.

I struggled through the day.

 

And the day..... did it's thing.

 

Nat worked hard at therapy. His new braces seem to be working well. He is a bit sore, but that is to be expected with such a huge bracing change. Other than that they seem to be working out well.

 

The evening took a dive for the worse though. Nathaniel had been complaining off and on throughout the day of a headache, he wasn't eating right (which could have caused the headache) and he was mopey. I was doing the assess and problem solve thing all afternoon and evening. But at 8, God finally had mercy on me and showed me the problem...

 

It seems the ultrasound wasn't completely correct...

Around 8 Nathaniel decided that it would great fun to pass another HUGE stone, throw up EVERYWHERE and pass out. Charming child. At least I wasn't WEARING any of it this time, so I guess I am getting a LITTLE quicker! Still not fun to deal with, and poor poor guy HURT like heck.

 

After all that was said and done momma needed to take a little walk and talk to friends for a while... a long while. When I came back the boy was sleeping and we had a somewhat restful evening.

 

They drew labs bright and early this morning to test his kidney function and see if everything is balanced... Praying for those results. I am also getting ready to go into our first family meeting in a few minutes. I am curious to see how this works, and REALLY curious to see what they think our new adjusted timeline is. Pray with me?

 

We will update again soon!

 

Catch up updating

Well.....

The ride continues around here!

Today marks the three week mark of us being here. Three really super long weeks of lots of highs and lows, lots of pain and hard work, and even a fair amount of tears.

 

Nathaniel continues to work hard in his therapy, and although it is a very slow process he is doing great. I have my first "Family Meeting" on Wednesday where I get to sit down with all of the doctors and therapist at once and hear what they think about how he is doing, what direction we are heading and their adjusted time line. I am in part looking forward to it and in part dreading it. And I am flying solo in it, but I am getting way too used to this flying solo thing. Not that I am saying I am getting any better at flying solo, but I am at least getting used to it! But I am so past ready for God to bring a life partner to make these stormy journeys with me!

Saturday day was this girls birthday.....

 

 

Well...

that was her....

about 18.5 years ago!

 

 

She looks a bit more like this now..

 

I was bummed to miss her special day... I know she understands where I am and why I am here, but I am still used to spoiling them on their day! This girl is going to have a "do over" birthday when I get home!

 

The harder thing to miss on Saturday AND Sunday was Audrey's dance show. I have never missed one of her shows. This is a first for me as a mom, and when Mark (her father) texted to say he had been there, I REALLY felt like a horrible mother. But what could I do? There is only one of me... and one is probably enough for this world! Faline, Brianna and Josh kept me supplied with pictures and updates, and Gramie texted me often to tell me how great Audrey was doing, but I still felt awful!

 

 

Thankfully I have pictures...

And I ordered a DVD, so when I get home we can all watch it together.

But it still feels like a mommy fail.

 

Thankfully the Lord gave me something else to focus on for a bit on Saturday.

 

 

Our DEAR SWEET friends the Jansen's came up to hang with us on Saturday. What a TOTAL TREAT for the second week in a row! It is SO GOOD to see faces from home, to get hugs and to simply hang out. Even when kids are being KIDS, and time is limited, and we are tired... it is still SUCH A BLESSING to see friends!

 

 

You see those SMILES????

Those smiles are PRECIOUS and a gift and we are so blessed that Bea, and Kaleb and Gavin brought  them to us!

 

After Bea and the kids left on Saturday Nathaniel began having more bladder issues. Things really haven't balanced out for him since the 7 days of Foley. But Saturday night Nathaniel had passed 5 stones. Poor kid, that has just GOT TO hurt. He is still having issues, so we FINALLY got an ultrasound tonight. Hopefully we will have results tomorrow. With everything else that is going on, I really hope either he has passed all the stones, or that the remaining ones are small enough to do a flush and get out. Really? Not ready to head back under anesthesia yet!

 

Sunday was a very low key day. Nathaniel didn't feel good, I was struggling emotionally and the Lord was walking me through another battle of the mind too. To say we were both BLAH would be an understatement. We did journey outside a few times to Nathaniel's favorite tunnel for a little fresher air and some sunshine.

 

 

 

He even talked me into getting in his tunnel with him... ONCE!

 

Nathaniel's favorite hangout when he's feeling down.

 

 

The other fun thing we did on Sunday was figure out how to wash Nathaniel's hair for him! He hadn't been able to really bathe since before his surgery, and his hair was driving him NUTS!!! SO the doctor told me as long as I didn't get his back dressing wet, I could wash his hair!! We got creative with his bed, and in the end he was MUCH happier!

 

Sunday evening Audrey headed over to our dear friends the Dicus's home. I guess I should have warned them how much Audrey misses having a dad figure in her life.... seems she and Chris got a little hyper together! It was fun to get silly playful pictures from MeLisa of Chris and Audrey having giggles and fun.

 

 

Monday morning brought more highs and lows.

 

Nathaniel was still in pain from his back AND his bladder tract. But at least we had an ultrasound ordered for later in the day. And the high....

 

 

Was that our WONDERFUL friends the Dicus Family came up to see us..... It was lots of fun to hang out with Luke, Anna Grace and MeLisa for a few hours.

 

 

AND they brought MY PRINCESS with them!!! I can't explain the hurt in my heart being so far away from her day after day. This momma doesn't do long distance well. It was so good to have her here with us for a few hours. I feel like I am stealing time every time I get her for a bit. But it helps my heart so much too. MeLisa can't possibly know how very much it means to me that they all took the time to come see us AND bring Audrey in the midst of so much in their own busy lives. Such dear sweet friends we have. They make this journey more bearable.

 

The kids laughed, and made a video, and played sock football and just were KIDS for a bit. MeLisa and I got to talk and be "normal" for a while and I got LOTS of hugs. The day was truly blessed.

 

Nathaniel had to do his normal therapy in the midst of all of the visiting. And he had new braces made yesterday too!

 

 

The doctors and therapist are not liking what his SMOs are doing for him right now, and they don't fit right post surgery either, they are giving him pressure sores. So the team said "new braces" and my heart flipped. Anyone who walks the SB journey knows that changes in braces aren't usually an easy thing. And Nat has been in SMOs for a pretty long time. So I was expecting the long drawn out discussion that we have been having at home about what is "right" for him. But not at all. They said "AFO is the next thing to try"... I was questioning the carbon floor reactive as we had been looking into those at home. But they said they just make up the AFOs here and we try them and that tells us where to go next. I was floored. Usually there is such a hassle with insurance, and casting and fitting and blah blah blah.... but nope. They casted him.....

 

 

And less than an hour later he had new kicks on! Amazing.

 

So these are temporary kicks, to try them out and see if this is the correct brace for Nathaniel. Can I tell you how IN LOVE I am with this theory??? So in love. Excited to see what will happen with this!

 

Also, right before dinner Nathaniel finally got his ultrasound....

and drum roll please....

the doctor JUST came in as I am writing this....

and there are NO MORE STONES!

Thank you Lord.

I am not sure I could have dealt with more anesthesia this soon.

 

We ended Monday with a sweet picture from MeLisa of Audrey being a KID and having a BLAST. Makes my heart happier, even if I can't be there with her.

 

 

At least she is getting some summer and some fun!

 

Today is rainy and gloomy... and so is my mood.

But I have my ipod....

and my bible......

and my  friends....

and I am praying this gloom away!

 

Prayer points for today:

 

*For strength as we continue this long long journey. That our hearts not grow weary.

 

*For someway to make Friday special for Nathaniel

 

*For continued healing and strength and progress for Nathaniel

 

*For a personal journey that the Lord has me on, that His path is the path I stay on, and that I see God's leading in each step of the journey.

 

As always, we love each of you taking this journey with us SO MUCH. Thank you so much for praying with us, loving on us, and encouraging us so much. I so could not do this without so many of you behind us keeping us lifted up. Seriously. Couldn't do it. You all are my constant reminder of God's strength and compassion right now.

 

 

 

Just Doing It

I have again been accused of being quiet or not present....

 

And the truth of it is I know it,

 

But don't have the energy to do much about it.

 

I think we are in the "Just doing it" phase right now.

 

Yesterday was the 16th day in a row in the hospital for us,

 

and I think the sort of hospital depression has set in for both Nat and I.

 

 

On Wednesday we were both so tired that we curled up and took naps in my "window bed" together when he wasn't in therapy. We also went outside and played Uno in the courtyard to soak in some sunshine. Nathaniel continues to work SUPER hard in his therapy sessions and is an inspiring  little guy. The world could take a few lessons from him about hard work, perseverance and great attitude in the midst of storms.

 

 

 I mean, look at that schedule... this kid is working HARD all the time. But he is doing GREAT too! He can walk about 10 foot in his walker unassisted now. Not too shabby for 15 days out of major spinal surgery.

 

Nathaniel has definitely hit a round of the hospital blues, but in God's perfect way his worst bout was minutes before his music therapist came in! He had a great session with Matt and worked through lots of his feelings. He was much more stable after that.

 

There was also a special event at the hospital yesterday. I had a migraine and REALLY didn't want to go, but I knew Nathaniel would dig it, so I sucked it up, took lots of medicine and we ventured out....

 

 

And Nathaniel was THRILLED!

 

The hospital had a Meet & Greet with the 501st Legion and Rebel Legion, a group that spreads the magic of Star Wars costuming worldwide. They were very cool, and so kind to all the kids. And WAY COOL about photo ops with the people too!

 

 

Nathaniel's spirits were visually better after a little bit in the company of some of his favorite Star Wars characters!

 

Definitely a "mommy win" moment!

 

My heart is a little torn heading into this weekend. I know it is SO IMPORTANT to be here and for Nathaniel to be getting these fabulous services, but I am still broken hearted over some of the stuff we are missing at home. We have already missed BIG things like Damen's graduation, Josie's dance recital and Traci's celebration of life. And we miss everyday things like serving the Lord with my Open Arm friends, going to church at home, hugging my friends, play dates, my standard breakfast dates and Friday night BBQ & pool tradition. This weekend is another one of those events that I will miss, and this one pierces my heart again. Audrey's dance recital is this weekend... and it will be the first one I have ever missed of hers. Sometimes it is REALLY hard to be a single mom and balance it all, and this is one of those times I HATE being a single mom. But the Lord has a plan, so I will go with it. I will trust Josh and Faline and my mom to make this recital special for Audrey, and I will try not to cry thinking of her, and the FABULOUS RAD show I will be missing. I am so thankful that there are other people in Audrey's life that will make this special for her, and I will sit back and let her be blessed by them this time.

 

BUT I am TOTALLY excited that our dear friends the Jansen's are coming to see us on Saturday AND our friends the Dicus's are coming up on Monday AND they are bringing Audrey with them!!! So hopefully, spirits will be up after the next few days. It is SO nice to see friends and family. I know it is a HUGE trip to make to see us, so we are so blessed by those that can come.

 

As always, we love you and thank you for joining us in this journey in prayer, in thought and in encouragement!



And the ride continues...

Every time I think I have got this journey figured out and the ride is settling out we hit another bump!

 

Yesterday I told you that we had our routine down, and that I was feeling better.

 

Well, this morning that routine was rocked, and I sure didn't handle it with much grace.

 

You see, for the last 6 days at the hospital we have been "living" in this teeny tiny quarters. Quarters where Nat can't get out of bed at night unless I fold my bed up. Quarters with a possessed sink. Quarters where the wheelchair and the walker can't both be set up at the same time. Quarters that challenged me in so many ways.

 

 

But, as I was reminded this morning, we were in the Rehab unit that I prayed for Nathaniel to be in, so who cared if we were in the smallest room there? And on this journey, our whole family is making many sacrifices, so who cares how much it challenged me? And the truth of the matter was that I still had the fabulous family house to go back to. That was my break and sanity.

 

Well, the thing with the family house is that there are a limited number of rooms, and a great many people with needs. The "rule" is that you can only stay a week before you get put on the rotate out list, and we have been there since June 4th... a little longer than a week, lol. So far I have been very lucky that the need hasn't been huge, and therefore I haven't been rotated out, but that luck ran out this morning. And I will admit it, I cried. I looked around me and wondered how in the world I was going to make it work at the hospital so far from home with so much stuff. And I really did have a pitty party for a little while. I am a SMALL town girl, and this town really terrifies me, so having the comfort of the CLOSE place to escape, and the security of my car in a locked parking area and security escorts back and forth to the house, really made me more comfortable. But the truth? This journey isn't about my comfort, it is about getting Nathaniel healthy!

 

So, throughout the day, as Nat worked his booty off in therapy and at all of his work I tried to find that happy place, that place where I was grateful for the fabulous therapy he is getting here, that place where I KNOW God will take us through this journey the way He wants us to go, that place where I can walk with His grace no matter what. And by mid afternoon I found it again. I was ok. I was trusting Him again, and knowing no matter what challenge we faced we could do it. And pretty much as soon I found my way back into his peace and walked with grace, that is when He blessed us. You see, He really did have a bigger, better plan and in His perfect timing He revealed it to me.

 

First a nurse came in to let me know that our roommate was leaving today. We knew he was having surgery, but we didn't know that he wouldn't be coming back to this unit afterwards. She told me that we were next up for a better space, and did we want their space. Of course, I immediately agreed. While the room is still RIGHT next to the nurses stations (and therefore incredibly LOUD 24/7) the space was double what we had. I was happy, it would work out fine, we had dealt with the noise for almost a week, we would just continue to deal with it. So I started packing up to "move". I was kind of laughing at myself for being so insistent that EVERYTHING had to go on the bed so that we could push the bed like 8 feet. I mean REALLY? But for some reason that is what my head insisted I did!

 

Next, Matt the Music Therapist came by. We have been trying to coordinate music therapy for Nathaniel for like 10 days now! But Nathaniel's schedule and Matt's just never seemed to line up. Well today Matt came by before he put anyone else in just to make SURE he had time slots for Nathaniel this week. How sweet is that? So for Nathaniel's 6th and last therapy of the day, he and Matt had their first session together this afternoon! Nathaniel was so happy! Totally sweet.

 

 

After music therapy the nurse came in to "move" us. What went down next is kind of funny, and totally God.

 

Nurse: You packed ALL of your stuff?!?!?!

 

Me: *totally embarrassed* Yes... I just felt like I HAD to for some reason.

 

long pause

 

Nurse: You wanted a quieter room, right?

 

Me: Well yes, we wanted a quieter room, and one with more space so Nathaniel can use his equipment safely. We will be happy with half of that though, the more space will help. 

 

Nurse: But REALLY you want bigger and quieter, right?

 

Me: Well.....in a perfect world, yes.

 

Nurse: I will be right back.

 

A few minutes later he comes scurrying back in "hurry, hurry, we have to hurry"

 

And he rolls Nathaniel's bed out of the room....

and down the hall.....

and Into another room WAYYYYY far away from the nurses station....

and to a window room!!!!!

 

God is SO GREAT!!!

Welcome to our new room...

The window rooms have BEDS for the mommy!!

And drawers for stuff to go in!

And SPACE to use the equipment!!

 

Nat can even sit IN his chair in the room!!! So much better for him than being in  bed so much!

 

And his BED, and CHAIR AND WALKER all fit, WITH room to use them!!!

 

God is SO GOOD.

Silly me for even doubting him for one second!

 

It turns out they were going to put us in this room, but then the first nurse told me the wrong thing and instead of making her look bad they just decided to do what she said. But the second nurse has had us before, he knew how hard of a time Nat has with the noise, and he decided to "fix" the whole problem. But the thing was, there was another patient on their way up from surgery... he needed to move us, establish us in the better room AND get back and clean the old room BEFORE the other patient made it up from surgery. Obviously it would have been easier to NOT do this fabulous thing for us, but he did it anyways. So blessed.

 

Lesson learned today....

God is Good ALWAYS.

One should not doubt His goodness.

Trust in Him, walk with Him and KNOW that His plan is better than ANYTHING our minds can come up with.

And PRAISE Him in all things!

 

So, this girl, she was humbled today, and she is SO thankful her Father has a bigger plan. We are ready to keep walking on this path.

 

As always, thank you for walking this journey with us, thank you for praying for us, and THANK YOU for loving on us. We miss home, and family (bio and church) SO MUCH, but you are all so encouraging and such a blessing to us. God was so good in giving each of you to us, please know we treasure you and your places in our life.

 



Day 13 Update

I have been scolded....

 

Many times.....

 

Guess I was too quiet yesterday.

 

Sorry.

 

Nat got up EARLY.

 

Like REALLY FREAKING early...

 

So I was tired.

 

 

Early morning wake up from the boy means I made him do therapy while he waited for therapy! You see a game? I see an exercise in linear processing! We played tons of games of connect four over and over until he went to therapy.

 

Here at Children's Oakland they have this thing called "primary nursing". This great nurse Debbie signed up to be Nathaniel's primary, which is totally COOL because I really like her! So, yesterday Debbie noticed that I was exhausted and she was so sweet. She arranged for a volunteer to hang out with Nathaniel so I could head back to the family house for a block of time.

 

 

I got a key to the gym at the family house the other day, so I was totally excited to use the gym, do some laundry, take a shower and sit out in the sunshine and listen to tunes.  I didn't feel rushed or hurried, I just got to relax some. That was a good thing for me.

 

Nathaniel worked hard at therapy yesterday. He is making small gains each day. He stood for 2 minutes without holding onto the walker yesterday!

 

Other than it was a kinda ho hum day.

Not bad.

Not great.

Just was.

We all have those, right?

 

We are STILL in the teeny tiny room, still praying for a window room that has a little more room in it!

 

We are still having issues with his bowels, and praying for some solution there.

 

And we are always praying for recovery for the boy!

 

Love you all!

 



Day 12 Update

It is Sunday.....

 

A day of rest.....

 

And that is what we did!!!

 

 

It does this momma's heart god to see her babies together. LOVE those kids. But bright and early Gramie and Audrey had to catch the train back home, cursed work that Gramie has to do.  

 

As much as we LOVE having them come see us, goodbyes never get easier!! Hence the momma tears before 8 am! This journey is a sacrifice in so many ways for our family, but we are giving it to God for His glory!

 

After Audrey and Gramie got on their way Nathaniel and I just chilled out.  Nathaniel is currently battling a UTI and he is still having issues regulating his bowels. So he was sleepy and low key much of the day. Thank goodness for the laptop and Nexsus and iPods, lol. We spend many hours plugged in. We did take a break and play a few board games and do an art project.

 

 

One of the cool things about being in a Children's Hospital is that they have great things for the kids to do! One day last week when Nat was still feeling pretty crummy the school volunteer brought him this ceramic turtle to paint, but he didn't feel up to it. I held onto it because it was such a darn cute project, and yesterday we painted it together. So cute and so fun. We had a blast talking and working together on this project. And that is one of the blessings of this journey. I have always been very close to my children, but I am having all of this one on one time to bond with Nathaniel as he is entering his puberty years, I love how he will talk about anything with me, and we are just solidifying that bond right before he heads into a stormy time in most kids life!

 

By the evening Nathaniel was feeling somewhat better, and since he hadn't had therapy all day (no therapy on Sunday) I took him out for some sunshine and laps...

 

 

He wasn't exactly thrilled with me, but hey, being a good mom doesn't always mean you are the most popular person around!

 

I needed the low key day in many ways, as my heart just needed some time to rest. I adore seeing my family, but it takes a minute (or a day) to readjust to being alone. And we had LOTS of friends and visitors this weekend, so it took a bit longer even. But that is ok, I wouldn't trade our visits away for anything! Also, yesterday before the surgery was set, Nathaniel was signed up to do a special activity that he LOVES to do, so I was a bit sad that others were having fun diving, but Nat was here. We missed Marv and the Day Of Discovery program, but know there will be other opportunities for us in the future.

 

Our current prayer requests are kinda the same ole....

 

*UTI Healed

*Bowels back to normal

*A NEW BIGGER ROOM!!

*Peace on the journey

*Blessings and grace on Audrey at home.

 

As always, thank you for joining us in this journey and standing with us.

We love you!