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!

 



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!

 

 

 

 



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.

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.

 



Father's Day with a Twist

Did you know it's Father's Day?

 

 

If you are a Facebook junkie, like myself, then there is no way you can miss the fact. 9 out of every 10 posts are about Father's Day, and how fabulous of a father or husband my friends have. And I am glad for them... I think. I am glad there are those that have great father's that they get along with. I am glad there are those that have wonderful husbands that make great fathers. I am glad that there are children who have wonderful fathers to look up to.

 

Unfortunately I am not really one of those people.  I have a father, who did his best, and I am thankful for the sacrifices he made for us. My children have a father that is worth little more than the sperm he donated. He has done, at best, equal parts good and horrible in our lives. We do have a Heavenly Father that loves us beyond comprehension, but to me EVERY day is Father's Day for that father. On the home front, I am mom and dad and everything that comes in between, so this day, once a year, is kind of like salt in the wound to me. I pray daily for a role model for my children, for Godly man to walk through life with, for the fulfillment of God's promises, but for now, it' just us!

 

But this year my heart is totally burdened on this Father's Day.

 

 I want to take a second to share that burden with you, and ask you to commit to pray over it with me.

 

In my time here are Children's Hospital Oakland my eyes have been truly opened to a horrible problem in our society. A problem I knew of before, but I never felt at a heart level before. A problem I want to shine a light on, call out of the darkness, and ask my brothers and sisters in the Lord to pray with me over. I can't explain to you how in the midst of our own journey through the storm my heart has been burdened for another group of children, but it totally is.

 

We are here at Children's Oakland because of a health issue that Nathaniel has. It is a trial and a storm for us, but it is something that NO ONE caused, it just is. And as much as it hurts my heart that our whole family has to go through this, it is just one of those journey's in life. But some people are here on journeys BECAUSE OF others. This week God has been introducing me to situations that break my heart. I have time and time again run into children here BECAUSE of their fathers. And that is a concept that I can't wrap my mind around. There are two stories I want to share with you.

 

*please excuse my horrible pronouns... I want to protect these kids as much as possible.. so they are its... but they are SO NOT its in real life. They are children with stories, lives and passions.*

 

One family we have had contact with over and over again is here because of a horrible accident. An accident where a 10 year old child was playing on the roof of a building while under the supervision of its father. The father KNEW the child was playing up there, and was inside watching TV while the child played. The child fell off of the roof, hit their head hard enough to give itself a traumatic brain injury and laid there for Lord knows how long before the father found the child. That child was taken to medical care (there is a question of how quickly that transport happened, the stories differ between the parties involved) where the child actually died in the ER. The medical team was able to resuscitate the child after 10 minutes! Oh my. Now the child has had multiple brain surgeries and is learning how to live all over again. A 10 year old child. A child who was running, and playing, and laughing and LIVING just before the accident. An accident which could have possibly been prevented by firmer boundaries, an accident who's severity could have possibly been less with proper supervision and attention to timely medical attention. Now I see this sweet little one, and the rest of the family trying to come to terms with the consequences of this accident. And it is HARD. And this child will FOREVER be changed by this situation. My heart goes out to all of them.

 

That story number one has a happy ending compared to another story God has shown me.

 

While at the family house the other day I came across a man crying over his bible. An older man. With tears of agony. Being a believing and compassionate sister myself, I asked him if there was anything I could do for him. He told me he had been asking God for someone to pour his story out to, that no one wanted to hear it. So I turned my listening ears on, and asked God to give me strength. Little did I know how much strength it would take....

 

This man was a grandpa, and he was here supporting his daughter and her child. It seems that his daughter had this child with a not so nice man. The child is young, very young (like less than a year). It seems that the mother had second thoughts after she got pregnant and didn't want the child's father involved in the child's life. As happens so often, they ended up in court. The court didn't see the same danger that the mother did and granted the parents joint custody. On the FIRST unsupervised visit the child's father had with the child, the father severely beat the child. As this child's grandpa poured out his story all I could do was pray for strength to keep listening as tears poured down my face and my heart broke.

 

The grandpa showed me pictures of a PURE, INNOCENT ANGEL. The child was so beautiful before this evilness happened. Then the grandpa asked my permission to show me pictures of the child now. I stared this interaction asking what HE needed, so how could I at this point say no, if what he needed was to share the whole story? So I gulped big, prayed hard and looked at some ABSOLUTELY evil images. My heart shattered. This man I had JUST met and I sobbed together for the hand of evil in this world. And we just laid it at the throne of Jesus. What else could we do? Grandpa shared with me that the medical team had just broken the heart shattering news that this angel would be dying very soon. There is just no more human physicians can do for this child, the injuries are too sever and the damage too far gone. So this grandpa and his daughter are now walking the road of saying an earthly goodbye to their angel, all because of evilness in this world. Really, what could be worse? I just can't comprehend it. 

 

After this interaction I asked God what I could do with this information. Yes, being a listener and praying for this family is important, but I really sensed that God wanted me to do MORE with these stories, and all of the other stories he has shown me while I am here. And honestly, I still don't know the full answer. But I do know that I can share my heart break and beg you to pray with me.

 

Pray for the children of OUR world, OUR country, OUR states, OUR counties and even OUR TOWNS who don't have TRUE parents (because it really can go both ways).

 

Pray for mothers and fathers everywhere to step up and recognize the GIFTS they were given in their children.

 

Pray for fathers to be men of God and show love, compassion and understanding to their children. That they may stand in the gap between evil and their children.

 

Pray for mothers to be women of God, to show love, compassion and understanding to their children. That they may always protect their children from the evil of the world.

 

Pray for protectors of children everywhere to have their eyes open to the evil around them. That they might realize the evil before it damages children. That they may be able to bridge the gap and PROTECT children.

 

Pray for the families devastated over the touch of evilness on their children.

 

Pray for our courts to better discern what is safe for children.

 

And pray PROTECTION of children from the evil one.

 

On this day when we celebrate fathers, lets take a moment to pray for those without real fathers too.

 

This is the burden of my heart today.

This is where my prayers will be today, and for many to come.

Won't you join me?

 



Day 9 Update

There really isn't much to say today...

Nat was tired.

I was tired.

We were trying to figure out the ropes in a new department.

We were meeting 10 thousand people on the new team.

Nat had PT, OT and Speech sessions today.

We just kinds WERE today.

 

Our new room is TINY. We can't even fit all of his daily living equipment in the room! (wheelchair, walker, commode, cathing supplies, and daily stuff) And it is RIGHT next to the nurses station, so it is LOUD 24/7. I did mention to the doctor team that with Nathaniel's sensory processing disorder that it is REALLY hard to calm him in this room. They checked and said another patient is scheduled to discharge tomorrow, and they could move us to that room and that it is quieter. I pray that happens. I also pray it is a window bed because window beds have more room! They also have a built in BED for momma!

 

Why would a built in bed be nice? Well let me tell you a little story...

But if you laugh at me like she did....

I might have to unfriend you!

 

Last night I slept in one of those horrible chairs that hospitals have that turn into beds. I have had one of those every night of this journey, but last nights was the worst. It was at least 6 inches shorter than I am. It folded out in such a way that if you pushed on the middle you folded in half. And it squeaked every time I breathed! It was also VERY snug in that room. My chair bed was wedged under the sink right next to Nathaniel's bed. Now this might not have been so bad if the sink wasn't automatic and the room curtain wasn't wedged between me and the sink. All of this to say...

 

You see..

if I turned over or moved the curtain moved..

then the sink turned on...

 then I BOLTED up out of bed because of the noise....

 then the bed usually folded in half on me because I bolted up so fast...

 then I cursed....

then Nathaniel woke up.

Sigh.

It was a LONG night.

 

So I am praying for a quieter room starting tomorrow. And since our God is so great and so big and so able to do anything, I am also asking Him for a window room. Because I might now survive 2-6 weeks of nights like last night.... Join me?

 

Also, I did want to let you know that we had another answer to prayer!

I asked earlier if we could pray that Lucy, the great PT that has been working with Nat, would be his PT on Rehab, and we found out today that she IS his PT! Thank you Lord. I acutaly really like all the therapist that are working with him so far, and that is kinda unusual for me!

 

We are terribly excited to see Gramie, and Audrey and Bea and the boys this weekend! It will be so good to see some friendly faces that we actually know!

 

Hoping I can be a little more ... something tomorrow, but for tonight I am going to crash!

 

Love you all!

 

 

Strength

I feel burdened tonight to share...

 

And it isn't all that cheery....

 

But it is real!

 

And real is something that I have ALWAYS promised this blog would be!

 

As you know, we have been on a JOURNEY recently. Through this journey I have heard time and time again how strong I am, and it makes me want to scream. It isn't that I don't appreciate kind words about the manner we are walking the journey, but it frustrates me that so many fail to see the truth behind the journey.

 

The truth is that this is God's journey.

God chose the path for us.

God's hand is guiding us every step of the way. 

God has had this planned for so long.

And it is God's strength that is carrying us through this journey.

It is not our journey, but HIS to show his majesty through.

 

The truth is my flesh is TERRIFIED, but God gives me peace.

 

The truth is that my faith is TESTED in each step, but my feet stay on God' path.

 

The truth is that my flesh is WEAK, but God is STRONG and he carries me.

 

The truth is my flesh would give ANYTHING for a hug right now, but God cradles me close to his heart, and when I take the time to FEEL that, all is right in the world.

 

The truth is that I am EXHAUSTED, but God refreshes me.

 

The truth is my flesh feels so ALONE, but my spirit constantly feels Him here with us.

 

The truth is that Nathaniel and God are the HEROS on this journey, I am just along for the ride.

 

And the truth is that my flesh FAILS constantly, but He never waivers in His devotion to us on this journey.

 

Tonight was a failure in the flesh.

 An epic failure.

But God in all of His glory can turn even an epic failure into something good.

I broke tonight.

I BROKE into a million pieces.

And it was MESSY.

But God still handled it and turned it back for His glory!

 

I haven't slept well at all through this whole thing, but especially since my mom and Audrey left. I have had a hard time finding food that I can eat and still feel ok. The entire journey has been a roller coaster and lots of stress. There are things going on at home that I REALLY want to be there for, but can't. I am SO FAR from home, friends and family. I just had to deal with 2 days of Nathaniel's father (that was SO HARD). I miss my church time. I haven't had a hug in SO LONG (and in my world that just isn't ok!). And all of this caught up with me tonight.

 

Nathaniel works SO HARD today {isn't he such a rock star???} and was REALLY tired when we got transferred to 4th floor. In his exhaustion he hates our new room, he hasn't eaten much today, and he was pushing ALL of my buttons. And I just couldn't keep it together. My flesh won, and I ended up in a ball of tears.

 

I am NOT one of those moms that leaves her child in the hospital without someone he knows with him. But I did it tonight. I broke down and wept. I ran away from Nathaniel (I left him in the care of his nurses), collapsed into a pile and WEPT. And even in the middle of my fleshly UGLY, God shone brighter. As I was breaking I reached out to two brothers, and BOTH of them came through with prayers, words of encouragement, and Christly love. And as I curled up in a ball on the floor crying my pastor, who I hadn't talked to for hours, texted me to tell me that we had JUST ben prayed for in a prayer meeting. Isn't that JUST like God's wild perfect timing? Of course it is.

 

I took an hour. I cried. I prayed. I talked to people that I love. I cleaned my family house room. I took a couple bites of ice cream (yes, my indulgence). I took a shower. And I changed clothes. When I came back Nathaniel had actually eaten a little bit and was in good spirits. Together we are working through the rest of the evening. It isn't easy and I am still exhausted, but when I stop listening to my flesh and rest in God, it is much better.

 

So next time you want to tell me I am strong, stop and remember...

God is STRONG

And IN HIM we can get through all kinds of crazy hard things!

 

Always remember,

"I can do ALL THINGS through Christ Jesus who strengthens me"

Philippians 4:13

 

Anytime you see strength in my life, it is God's not mine!

Dancing, Screaming, Shouting....

Praising the Lord for He is SO GREAT!!!!

 

The Lord brought us to this man:

 

 

And he is AMAZING!!

 

My hero!!

 

I am so thankful God brought us to Dr. Sun!!!

 

Dr. Sun JUST came in and....

 

CLEARED NATHANIEL!!!!!

 

The MRI looks GREAT!!

 

And THERE IS NOTHING IN THE BRAIN THAT doesn't belong there!!!!

 

We still have a long road to recovery, but we don't have to go back into the OR anytime soon!!!

 

THANK YOU LORD JESUS!!

FOR YOU ARE SO GOOD!!

 

And I am so thankful,

Humbled,

Over joyed

And ready to go dancing!!!!

 

"Sing praise to God who reigns above,
the God of all creation,
the God of power, the God of love,
the God of our salvation. 
With healing balm my soul is filled
and every faithless murmur stilled: 
To God all praise and glory."

Sing Praise to God Who Reigns Above

 

Thank you for praying with us on this journey.....

Now go praise him and thank him for his gloriousness!!!

 



POWER....

God is SO GOOD!!!

Power = Fabulous Surgeon + Tons of Prayer

 

I know most of you aren't medical professionals so this might be hard to see, but I am going to try to walk you through it because I am in tears over this .....

 

 

This is a side by side view of May's MRI compared to today's

Same kid, same position.

Big difference, hu?

Even if you don't know what you are looking at I think you can see how DIFFERENT it looks.

But I am going to try and explain a bit of it....

 

So this is the May image.

It is a side view of Nathaniel's spine.

 

First, notice how curved and sharp his spine looks, not quiet normal. Lots of tension being put on that part of his body and making it all scrunched up. (yes, highly technical terms... give me a break! I am just a mom!)

 

Second, the red arrows are pointing to the black line coming down the spine. That black line is his spinal cord. The spinal cord should float free in the white area (that represents the spinal fluid that cushions and protects the spinal cord). There should be white on both sides of the cord, it should not be all pushed up against the vertebrae. The cord should also stop up by the top red arrow. Near the lower red arrow Nathaniel's cord was all bound up (tethered) and obviously had been for some time with as stretched out it is (this according the doctor who showed me these images this afternoon). This alone should have caused Nathaniel a LOT of pain and considerable functional problems.

 

Third, the green arrow. Notice the big grey blob all pushed up against the cord and in the white area that should be filled with fluid? That so shouldn't be there. That is the main epidurmoid cyst that Dr. Sun first noticed. It is hard to see in this big image, but take my word from seeing the other images, it was a tangled up MESS in there. So crazy a mess I couldn't wrap my mind around how he was going to untangle it all without hurting something that shouldn't be hurt. But I had faith, complete faith. The Lord brought us here for a reason.

 

Then there are the yellow arrows. Those are the arrows that really shocked us all. That WHOLE area should be white (again representing spinal fluid for the cord to float in). There should be ZERO grey in that area. The grey represents debris in there preventing the fluid from free flowing and pushing up against the spinal cord. In this case we believed all of that grey was little epidurmoid cysts.  LOTS and LOTS of those little buggers! Seriously, I can't tell you how many times I have heard these people say they have NEVER seen this extensive of a case. These little buggers are what had everyone worried.

 

Yesterday I got a chance to talk to a few people that were in the OR with Nathaniel and Dr. Sun. The stories that they told. Oh my. Since I have learned about the cysts my prayer has been that they would just all sort of tumble out when he opened up the area. We had no way of telling if they are bound up or free floating, so the prayer was free floating as it would make them easier to remove.

 

One doctor told me it "It is always amazing to watch Dr. Sun work, he is meticulous, but this time ... wow. The tether and big cyst was a MESS and he was so patient and just kept dissecting it all. It was so late and we had been in the OR so long before he turn his attention to all of the other cysts. We all thought we should close and come at it again another day, but Dr. Sun wanted to try. The first few cysts he lifted out were crazy. They were even growing hair! But they just lifted out. They came out so easy that Dr. Sun decided to suction them out... and it worked! It was crazy.... like pebbles coming out of a vase." This brought tears to my eyes. Did you know that is the EXACT description that I used so many times in my prayer? The doctor had no way of knowing that, that was God validating my prayers, throwing the same verbiage right back at me!

 

Tears.

Our God is SO AMAZING!

 

So here is today's image... let's see if I can walk you through it in my same silly mommy way.

 

 

First... look at how relaxed the whole area looks. I just feel better looking at this image.

 

Second... look at the red arrow pointing to the spinal cord. Notice how it is free floating in the center of the white area? Notice how it is NOT scrunched up against the vertebrae? Notice the purple arrow? The end of the spinal cord that is just sort of floating there like it should be? AMAZING. BEAUTIFUL. Deep breath of thanksgiving to a fabulous Lord and surgeon.

 

Third.... the green arrow. Notice how clear that area looks? Notice how white it is with fluid? Notice again how just pretty it is? That should be TONS of stress on Nathaniel's little body all gone!

 

Fourth... notice all the yellow arrows? Yea, me either! The area that had been previously filled with all that junk and pebbles is now much, much, much clearer. The neurosurgeon on duty today was so impressed with this image. He said he looks at these things all day long every day, and this is beyond phenomenal. He said Dr. Sun did an EXTRAORDINARY job. I have to agree... and I have to thank the Lord above for his hand in this.

 

I seriously was crying tears of relief in seeing this image.

 

We are not out of the woods yet. There are some questionable spots on the brain MRI, and we are still waiting for further confirmation on what those are. And Nathaniel is still in the "lay flat and hold still" stage, which is hard on his little body. He HATES the compression socks, he is tired of holding still, and he is getting some bed or pressure sores from all the laying down. But we are making progress and GOD IS SO GOOD!!

 

So rejoice with me on how FABULOUS his spine looks!

Praise the Lord for his faithfulness and goodness with me.

Praise the Lord for leading us to Dr. Sun and his meticulous attack of the issues.

And hit your knees with me at the foot of His throne begging for His will on the brain issues.

 

As always,

we LOVE you,

we are SO THANKFUL that you are taking this journey with us

and we FEEL your covering of prayer in our life.

 



His Perfect Peace

Today has been one of the longest days of my life.

 

My little boy (in the total mommy sense of a little boy, you know, the "I gave birth to him so he will always be my baby" way?) had MAJOR surgery today. He was in the operating room for over 15 hours while they dissected and worked on his spine. He had a tethered spinal cord release and they removed multiple cysts in his spinal column. This was a very long, complex and involved procedure. Any normal human being would have been terrified.

 

We have been preparing for this procedure for a few weeks now. Not long, but not overnight either. I have spent countless hours in prayer over this procedure, and I have begged for prayer from every person I know near and far. I have asked strangers to pray. I have asked my dearest friends to pray. I have asked my church family to pray. I have asked our Spina Bifida family to pray. You name it, I have asked them to pray. Because, you see, that is how I handle hard. I take it to the throne of my God and leave it at His feet. The Bible teaches us this. It teaches us that we can give ANYTHING to God, and if we pray in His accordance He will answer us.

 

In some ways it is such a simple concept. But then we put our human weakness into the concept and it becomes very messy. I don't know why we do this, but we seem to. I know I do.

 

This has been a LONG day. I was up before 7 am to get myself ready. I had to have Nathaniel at the hospital to check in at 8:30 am. He was scheduled to go into the operating room at 10:00 am. If you have read the previous post, then you know that they didn't actually take him in until noon ... almost 2 hours late. It is now 3 am, and he is still not done yet.

 

15+ hours of my little man asleep, under the knife and totally out of my control. If you are a parent that has had to turn your child over to a surgeon before, then you KNOW how nerve wracking this is. Probably one of the hardest things I have ever had to do and I have had some HARD stuff in my life. And I have had to do this OFTEN. Too often! But today was the longest I have ever had to do this for, and it was also the most complex surgery we have had to endure since his fetal closure in April of 2000. Today was epic huge.

 

With today being epic huge, I have spent so long on my knees and in continuous prayer. And I KNOW that we have been covered in prayer from every angle around us. And that prayer? I made all the difference in the world.

 

I was at TOTAL PEACE all day.

 

Yes, I had moments of loneliness.
And I had moments of  concern about my ability to see him so invaded.

 

But the procedure?

The doctor?

All that Nathaniel was enduring?

 Total peace.

100% unwavering faith in the Lord.

Complete knowledge that God had this covered.

 

 And the feeling of that peace?

Completely indescribable.

Once you have tasted that peace, I don't know if there is anyway to go back to a place without peace.

It is THAT powerful,

THAT addicting,

and THAT GREAT.

But you know what?
This peace is not just for epic huge, it is for everyday living!

In the midst of all of what was going on today, I have multiple friends chatting with me throughout the day. Via text, email, Facebook and even IM... what would we do without technology?? It was so great to have people to talk to and share my heart with. One friend and I were talking about this peace and how it transcends ALL of life. I was tired, and the first time or two I read the his message I didn't get it, but I KNEW there was a nugget in there I was supposed to "get", so I kept re-reading it until the light went on. I dare you to chew on these words, to roll them around your mind and to REALLY let them sink in.

"You know another thing I prayed for, is that His Spirit would indwell you, and for some reason, the way I worded it, is that Jesus' spirit would dwell in you. (And I meant His nature would dwell in you. His peace, His faithfulness, His compassion, His earnest desire to please His Father). And when I said that, I grasped it; tasted the peace that it would bring you, I knew how GOOD it would be for you, you know? Then what is obvious struck me: That prayer is for me too, that is what is best for me too, for every one of us, at any time, not just the stressful times.  And then this vision of this flood of blessings that would come for other people, if I was just willing to be ... that willing soul that I had just wished for and prayed for, for you. 

I know it's such plain concept that we are all continually aware of, but sometimes you get reminded of what you already know. you know?"

Did that sink in?
It did for me, and it was a total "ah ha" moment for me too.

Now I dare you to LIVE IT.
Live with the Spirit of Jesus dwelling in you in ALL things.
Live the example, walk the walk, do the life.
And be completely consumed with the PEACE that comes from doing what he asked.
Don't worry about HOW to do things, just do as he asked.
Don't hold yourself to a higher standard than he does, just walk the path he gives you.
Don't diminish your own walk but comparing yourself to others, just follow where he is leading you.

 And above all things, know that He has got this!
If you are doing as He calls you to, He totally has you!

I think I have been doing a fair job of walking in His spirit on this journey, and I am TOTALLY amazed with where He is talking me and how He is taking me there with such complete peace. And if I can do it in this HARD stuff, I KNOW you can do it in your daily life!

I dare you.....
What is God showing you?
Where is God calling you?
What path has God given you to walk?
DO IT, and be transformed by His peace, His grace and His perfect will!
And then you will know this feeling I have right now.