Grace Like Rain

I am a giver.

It is hard for me to be a receiver.

I have a hard time being gracious about receiving.

But as God's word teaches us,

 

 There is a time for everything, and a season for every activity under the heavens.

Ecclesiastes 3:1

 

As hard as it is to admit, right now our family is in the season of needing assistance.

And it has been poured down on us like my mind can not comprehend!

And I humbly accept, with tears in my eyes and COMPLETE thankfulness.

 

Simple things like,

 

Meals when I am too exhausted to cook

Help pricing hundreds of rummage sale items

Hugs at every turn

Friends that speak perfect truth to my heart right when I need it most

 

Bigger things like,

 

A selfless friend that came and helped me piece the Art Legacy Project

Another selfless friend that is helping me get my work done

A Home Group from our church that is cleaning up our yard

A woman I barely know, going to service organizations on our behalf

Rummage Sale Items pouring in

 

And huge things that rock my world like,

 

A sweet family in church making sure that I am not stressed about one of our biggest bills while we are gone.

 

A sister from church who is moving cross country and has donated EVERY item they are not taking to our family to sell an raise funds with.

 

A dear sweet friend volunteering her talent to do a fundraiser for us.

 

Donations coming in from friends and strangers alike.

 

 

And the biggest thing,

 

Being wrapped in prayer all through this journey.

 

I am brought to my knees.

I am humbled.

I am more grateful and thankful than words can express.

 

Yesterday we received word that the doctor wants to move the surgery up, sooner. He didn't have an exact date yet. But we should get that today. I think I stopped breathing... for a few hours! And my world started spinning like crazy again. I am TOTALLY overwhelmed  by what needs done NOW so that we are ready to leave when the call comes. I reached out to two dear friends in my craziness and BOTH of them said almost the EXACT same thing. How is that possible when these two have never even met (to the best of my knowledge) and didn't know what the other was saying to me? There is only one answer.... God gave them each the perfect words to speak to my heart. And I was again humbled, that trough all of this storm and journey God is RIGHT THERE carrying us.

 

If you think of our little family, please pray for us.

 

If you need portraits done, please remember that we have THIS fabulous fundraiser coming up.

 

And if you feel led to give and help us out we have THIS site set up to manage that.

 

We love you and couldn't walk this journey without you.

 

 

New Lessons in Trust...

In every part of life, God teaches us, grows us, and sometimes even stretches us.

 

He gives us challenges that we can NOT handle alone to show us things like:

...how great His provision is,

..how community blesses,

..how He can do ANYTHING,

... how sometimes it takes a village

...and usually, total dependence on him!

 

One of the parts of this new journey that I HATE talking about is the outlandish expense it is going to be. Trips up and down to Oakland (480 miles round trip) with gas hanging out at around $4.00 a gallon, 4-6 weeks of no work which = no pay (family leave act doesn't cover self employed mommas), 4-6 weeks not at home in my own bed, with my own food or with my own coffee maker! Not to mention the fact that Nathaniel looses his funding for everyday he is in the hospital. I can't even begin to wrap my mind around how much this is going to cost. And you know what? I TOTALLY trust God to meet those costs and needs! I have complete faith and I REFUSE to worry about something as insignificant as money at a time like this.

 

Even as He and I were having this conversation, He brought forth fundraising opportunities for our family, and I trust that He will continue to!

As soon as my dear dear friend Breann Hollon found out that we had a surgery date and were ready to rock and roll she set up this GREAT fundraiser for us. She is just too talented, too kind and too generous! If you look around our site you will see tons of examples of Bre's work. She is VERY talented.

 Breann has set up this mini shoot as a fundraiser for us! (Isn't that sweet??)

On Saturday June 1st Bre will come up to Montana de Oro and do 1 hour mini sessions for anyone who wants to book! Sessions will be $200 and she donating ALL of that to our family for medical and travel expenses! Also she will donate 30% of any prints or product that you order!

This is a great opportunity for you to get FABULOUS professional pictures and to help us out at the same time! Please let us know if you would like a spot, and please help us share this opportunity too!

The timing on this is amazing, as we will be leaving just a few days later for surgery and these funds would GREATLY bless us.

If you are interested in helping but not in this opportunity you can check out the link to Nathaniel's Helping Hands Page (left sidebar, top link) or donate directly through PayPal (link also on the left sidebar).

I am excited to see how creative the Lord is going to get to help us fund this journey!

Thanks for loving us enough to be part of it!

 



And we have.....

A surgery date!!!

 

Take a deep breath, because the journey is now slatted to start!

 

Surgery starting June 5th

 

We will be leaving for Oakland June 4th

 

Wow.....

My brain is back to spinning again

 

But the good news is he will get to do his 6th grade ceremony with his class right before leaving!!

 

So put it on your prayer calendars.

 



The verdict is in....

and I am trembling in my boots!

 

But with God ALL things are possible!

 

So here goes. I am going to put "out there" the news that I am still having trouble getting my heart and mind wrapped around.

 

Dr. Sun called with the final diagnosis and treatment plan. And my world came crashing down again. I am not so sure I am enjoying this roller coaster ride, I truly wish the cart would stay ON the tracks! But I trust that the Lord is doing something MAJOR and that is why it is so hard!

 

So, the diagnosis is:

Tethered Spinal Cord

Large Epidermoid Cyst in the area of his tethered cord

AND multiple other cysts in the spinal cord sack

 

The doctor counted over 40 cysts ranging in size and severity in the membrane sack that holds Nathaniel's spinal cord. He says that he has seen these cysts occasionally, but never to the degree that Nathaniel has them. He also mentioned that they could be in his brain. We did not do images on that area, so we don't know yet. We will do those images when we go back up for treatment.

 

This news alone broke my heart.

No wonder my poor little man is in SO MUCH pain.

And I am so frustrated that we have been getting progressively worse and the doctors at UCSF did not catch this.

BUT I am SO THANKFUL that Dr, Bravo agreed to this second opinion, and that God lead us to Dr. Sun. I am still completely at peace with this doctor, his skill and his ability to treat Nathaniel. I know God lead us to Dr. Sun for a reason.

 

So you think the diagnosis was hard? The treatment plan is even harder to get my mind around!!

 

Treatment Plan:

*Surgery is necessary, these cysts MUST be dealt with, we can't ignore them.
 

*Another round of MRIs when we go up to check his brain for cysts.
 

*There is so much to be done that one surgery won't cover it. It will take multiple days to get it all done. At this time the doctor thinks around 30 hours of surgery. (can you wrap your mind around that?? 30 hours? I can't, and I have been trying for a few days now!)
 

*The surgery comes with many risks, after all they are working with the nerves in his spinal cord! There is a slim possibility that he will come out of all of this a full time chair user. And there is a great chance of infection in these areas.
 

*They will have to lift about 6 of his vertebra to get to the cysts.
 

*They will have to cut further up his back than his scar currently is, he will probably end up with a scar to his should blades. (OUCH, kill this momma's heart! Can't I take the pain for him???)
 

*Due to his allergic reaction to anesthesia we are looking at all options, including the option to put him in a medically induced coma while the work is done. (another blow to my heart.)
 

*Recovery time will be intense and long.
 

*This will all be up in Oakland.

 

I don't know about you, but this just knocked me to my knees.

And I haven't really got up yet.

 I am overwhelmed.

I am scared.

I hurt for my little boy.

 And I just can't even function right yet.

 I am in a complete daze, begging God for his mercy, strength and peace every second.

 

And the part that is KILLING me most? We don't have a surgery date yet! So somehow I have to go on living with this hanging over us. Way harder than it sounds! My control freak nature just wants the DATE so I can PLAN. But God will give that to me when he is ready. I must pull up my big girl panties and put one foot in front of the other, even if it feels like I am walking in quick sand!

 

SO MANY of you have asked how you can help, and to be honest, right now I am overwhelmed!

Overwhelmed by your generosity and caring.

Overwhelmed with what needs done.

Sort of even overwhelmed by just getting out of bed in the morning!

 

But a dear friend recommended a site where I can put in our needs on a calendar and you guys can sign up. I don't have to coordinate anything and still needs will get met... I like the idea, so I have set it up. Right now it isn't much because I don't know yet. I know it will get fuller as things start moving and I need more help with Audrey and life in general. So I am going to encourage you to go visit it now, sign up to be a member and check it out. Not everyone will be called to help, but if you are there are opportunities there.

 

Here is the link
Nathaniel's Helping Hands - Tell a Friend: Nathaniel's Helping Hands
 

 

The other HUGE thing you can do is join us in prayer! Right now our prayer requests are:

 

*Peace in the journey! The kids only know that we have found what is wrong with Nathaniel and are going to fix it, none of the other details, but they are still feeling high levels of stress, and mine is over the top and out the window. I am continually begging God for peace every second.

 

*Wisdom and guidance for the doctors, nurses and medical professionals! I am already covering them in prayer daily and would love any to join me. Nathaniel's main surgeon will be Dr. Sun.

 

*Protection for Nathaniel's brain. I am praying NO cysts are in there, nor would any make their way in there before treatment.

 

*And for healing. God is the GREATEST physician out there, He can do miracles, and I am begging him for some!

 

Thank you for taking this journey with us. I know your prayers, thoughts and help have made it possible to carry on. It takes a village sometimes, and this is one of those times in our journey! We are so blessed by our village near and far.

 

 

 

 

 

 

 

 

 



And there's.....

Not much new to say.

 

But I am writing this for all who want to know what is going on.

 

We are in a holding pattern.

Waiting.

Trying to do life while all of the unknowns are figured out.

 

I wish it was as easy as it sounds,

but honestly......

It sucks.

It is SUPER hard.

 And it is SUPER SUPER exhausting.

 

We are waiting to hear back from the doctor on our attack plan.

We are waiting to hear WHAT THE HECK is filling Nathaniel's spinal column all up!

We are tying to keep him comfortable and as pain free as possible while we wait.

And we can't make a single plan till we hear those two things.

Which is sort of a little hard on this planning kinda' momma!

 

So yesterday I was blessed to get a few things done, like replace the washer that died, and finish getting the car fixed. I also managed to work some yesterday for the first time this week. I got a few orders done for clients and cleaned up the office. I also got a recovery bed set up for Nathaniel and cleaned my room. Not a hugely special day, but still totally exhausting day since my brain never stopped. Now if I could just get my landlord to understand how brain dead I am, then he might get off my back about the condition of the yards... or not.

 

For those of you still wanting to know how to pray, please pray for wisdom for the doctors still, and peace for our home. For those who keep asking how to help... I am working on it! I really am. It is just overwhelming to think of everything that needs done!

 

So we will continue to rest in the Lord, to seek His path and to take it one minute at a time.

 

Thank you for your love.

Thank you for your prayers.

Thank you for your hugs!

 

 



Changing Changing Changing....

*disclaimer... as I am still processing the day yesterday and all we learned, the easy stuff is first and the harder stuff is later... sorry! You are gonna have to read it all to get the whole picture. I don't know that I can be short today!*

 

The winds of change are blowing... or something!

 

As I said in the last post, Nathaniel had some follow up tests yesterday. We went up north again, did the walk of the tests and it was an adventurous day!

 

First up on the agenda (besides getting up at 3 am to leave by 4 am, droving for HOURS only to get stuck in the parking lots that northern California calls freeways and the little man who did not go back to sleep AT ALL) was a urodynamics study at UCSF.

 

Historically the urodynamics has been one of my least favorite deals with SB. The test usually shows that Nathaniel had a low to moderate capacity, no kidney reflux (praise the Lord!), moderate spasms, and very poor sphincter control. But then the practioners usually push surgery as a means to get dry and gain bowel control. I am have always had this bad gut feeling about that surgery for Nathaniel, and in recent years God has given me the mind set that Nat needs to make those choices for his own body. Yet Nathaniel hasn't had interest in making those choices, so I keep delaying. If there were medical necessity you KNOW we would be right in there, but if it is only social reasons, I just didn't feel it was right to undergo that major of surgery. As with many things on this SB journey, I think this is a personal and family preference and should be considered case by case. I would NEVER judge anyone for having the procedures done, and I know many who have had it that I call good friends. Please understand this is my feelings for my son.

 

Yesterday's test was pretty status quo. His capacity was a little down, but he was also backed up too. Which confused me a bit since we just did a clean out, so it is time to switch up his routine. He had no reflux, again Praise the Lord! And everything else looked pretty much the same as it did last time he had this test in 2010! The miraculous stuff happened after the test...

 

When the nurse comes in to talk is usually my least favorite time. I always feel like I am having to justify my beliefs. But yesterday was different. We talked clean out, normal. Then we talked routine. I started my usual "I am not a fan of Miralax and don't want to go there" speil and she stopped me. She said, "I know you can't stand the stuff, and I have been looking at it since you and a few others are so adamant. I am not sure I like it anymore either. I don't fully recommend it." I was floored. So we talked about natural avenues to look into, and she asked me to journal our journey so she can study it and hopefully be more informed to talk to other people about natural avenues! We have worked with this nurse for YEARS and this is the first time she has ever embraced anything I said about natural stuff! I was ready to throw a party! And then......

 

And then she REALLY floored me. She brought up the Ace/Malone procedure that they have been talking to me about for years. But her lead in was different.... "I am so glad you didn't have that procedure done yet. I don't think you should." WHAT???? I probably had my mouth hanging open!!! She went on to tell me that the guy who invented the surgery has invented a NEW option, and he hasn't done the surgery in a few years! (leave it to the good old USA to be behind the 8 ball...) So, SB mommas and folks, I encourage you to look up the Peristeen System! I saw one yesterday and am dancing with joy! My new prayer walking out of that appointment is for the company to get the billing code issues worked out so that families can start using this in the USA. Families like MINE! We are totally on the waiting list to get this. Hands down, the best, most thought out, user friendly system I have ever seen.

 

If you are interested, here is a link form the UK product page about the system:

http://www.coloplast.co.uk/products/continencecare/productfamily?commcategory=peristeen(coloplast)

 

So all in all, I left that appointment very upbeat and happy with the direction of his care in that department. So thankful and praising the Lord for YEARS of prayers being answered and doors being opened. Next up, getting to Oakland.

 

My map Natzi in the car didn't like HOW I got to Oakland, but I count it as a success because we got there, and we had time to eat lunch before the next appointment! This was my Facebook status about that time: "Have I ever mentioned that I HATE bridges???? Well, I REALLY SUPER HATE bridges.... I think my son just learned some new words... but we made it from San Francisco to Oakland in one piece!" And that about sums it up! Fudgle Dudgle Super Duper Evil Bridges, boats are made for water not cars!!

 

 So we explored Children's Hospital Oakland, and found the radiology department. Nathaniel usually ROCKS MRIs without any sedation or problems. He does really well, so this was a no brainer for me. Take a quick nap, have some pictures (MRI), grab some hot chocolate as a reward and hit the road back home. That was the plan. And it went fairly well at first. Nat did fall asleep during the MRI, so they got great images. We went to get his hot chocolate, and then I remembered I needed a note signed from the doctor's office from last week. So I popped upstairs to see if they were still there.

 

The practice had closed for the day, but the nurses were still there so they did the signature for me. Then one of the nurses asked if we had got the MRI yet, so I told her we had just finished. (how did she even remember me?? They have to see hundreds of families there ever week!) She told me to sit down and wait a minute. Dr. Sun came out a few minutes later and asked me to go look at the images with him. When he pulled it up, he showed me the tethered cord and the main cyst by it. We talked about that for a minute, but then he said he found something else that concerned him.

 

On the MRI, right next to Nathaniel's spinal cord was a row of grey round spots going from top to bottom of the MRI image. Dr. Sun pointed to them and I asked what they were. When he turned and looked at me that is the moment that my heart dropped and my world stopped turning for a few minutes. The look on his face and the words coming out of his mouth broke my heart. He doesn't know what the spots are, they could be some sort of debris, they could be more cysts of some kind, they could be something he doesn't know but whatever they are, they have to come out. But there are TONS of them. He told me that the tether release was complicated enough, but this puts a whole new spin on things. He doesn't know how long to clean all of that up, or if it is even possible in one operation. He did promise me that he would see us through this journey though. His concern and compassion give me the GREATEST sense of peace that God took us JUST where we need to be with this new doctor. As spinning as my mind was, the two things I didn't question were God's hand in all of this, and the new doctor.

 

Nathaniel and Faline went back to the radiology where they took a bunch more pictures in new MRIs. I spoke to the Doctor for a bit, then I went to the car and feel apart. Seriously had to have my 10 minutes of tears and fear. Then I sucked it up, hit my knees in the parking lot, called my church family for prayer then pulled my big girl panties up and headed over to be brave with the little man.

 

When I got to radiology, Nathaniel had opted to go in for round 2 of MRIs alone! What a brave rock star I have there. He did great again and finished all of the images without any problems. The techs told me they have seen many adults that don't do as well as Nathaniel did! When we finished there we all just wanted our OWN beds. So we got in the car, 13 hours after we had first got in it that day, and headed home. We even forgot the hot chocolate treat, as we were so focused on getting HOME. Guess I still owe my boy hot chocolate!

 

I KNOW without a shred of doubt that many who love us were holding us in prayer last night. I felt the love and peace all around us. We were in the midst of rush hour traffic and even though I HATE driving in city traffic, we had easy, safe travels with peace. My brain was spinning and trying to accept all I learned, but Nathaniel was at peace and fun and joking on the way home. I had an important board meeting that I was missing, but I was able to conference call into the meeting (with Faline's hand's free set so the whole car didn't have to listen to the meeting!) and get done what needed done there. I even got to laugh with my PSC family for a minute, and that is priceless. We made good time, had safe conditions and got home to our own beds. And most of all, even in the darkest moments I never lost my sense of peace. At times it was deep down there, but it never left me. Those things were all only possible because of God's grace and love, and because others were lifting us up when I couldn't. In my flesh I would have been a bawling disaster worthy of commitment!

 

I have NO IDEA where this journey is heading. I have NO IDEA yet what the plan is, still waiting with baited breath for the phone to ring. But I do know a few things.

 

First,  I know we will NOT be telling Nathaniel anything new. The answer to him is still "We figured out why you hurt and we are working on a plan to make you better." One worrier in the house is enough.

 

Second, I know that God will work ALL THINGS to His glory and His good. Even this. No matter how hard it is to wrap my brain around WHY a little boy has to deal with this, even this will be to God's glory and purpose.

 

Third, God is going to do BIG things with this little guy. After all he is Nathaniel, and that means he is a "Gift of God"!

 

Forth, we need ALL of you for this journey. There is NO WAY we can do this alone. Prayers, love, HUGS, friendship, acts of service, kindness and grace to understand when I just can't talk about it, we need you all.

 

Fifth... and the HARDEST to accept as a mommy... Nathaniel is GOD'S child, he is only on loan to us here on this earth. He was God's before he was mine, and he will be God's after he is mine too, but I get eternity with him in God's house when life is said and done here! I trust God to do great works in Nathaniel, and use him to His glory, but ultimately Nathaniel is God's to use. His life is a testimony to all who care to look deep into him.

 

Last night someone I don't even know asked me what 5 things I couldn't live without. It was one of those questions that made me stop and think deep about, it really hit me hard last night. But after thinking about it, I came up with my list and then I promised myself that my life would reflect that list! After all, why are we here if our life doesn't reflect the deepest parts of our heart? So my list is:

 

5 Things I Can NOT live without:

*God's love

*The promise of eternity with Taylor, Nathaniel and Audrey (because my children have all already accepted Christ as THEIR Lord and savior)

*Hugs

*Music

*And love (the ability and calling to love a biblical love - love thy neighbors, but also love thy enemies! We are called to LOVE them all.)

 

Thank you for taking the time to read this, and even more for praying for our family. You are all so dear to my heart.

 



Right as the storm clouds threaten to close in and take over, that is the moment God meets you in and reminds you why it is all worth it!

 

 God used so many people to bless our life today, remind us how loved we are, and most of all remind us how much HE loves us!

 

I am ever humbled as I start into this week, the first of our new journey.

 

To my Rock Harbor family, your love and prayers fuel us in those dark moments. Words can not express my gratitude.

 

To the Joyful Voices Choir that we had the privledge of listening to and watching today.... inspirational, humbling and uplifting! Thanks Cindy Crowley Price for the invite!

 

 To the Rock Harbor Worship team, just what this broken heart needed tonight. Thank you for providing such a spirit filled platform where He was able to meet us right where we are. You folks are such a blessing!

 

And to the prayer warriors that rallied around my little man tonight... there are not words! John M Pallanes, Brandie Bledsaw, Randy Ponder and MeLisa Neal Dicus... thank you for showering my boy in the love that comes from God!

 

I feel strengthened to start this week!

Our new journey

Wow... my blog is still here! Can you believe it? Poor lonely blog! But I thought this might be a good way to write out what is on my heart right now and share with the most people. So I am jumping back into blogging for this journey...

 

We are embarking on a new leg of the journey of Spina Bifida.

 

A little background. Nathaniel is now almost 13, has Spina Bifida and is an energetic little guy! For the past year Nathaniel has been slowly loosing function, and getting weaker and weaker. In the past 8 weeks Nathaniel has been experiencing EXTREME pain. Like wake you up from a deep sleep pain. Like don't want to get out of bed pain. Like change your life kind of pain. It has been heartbreaking to watch my little guy suffer so much!

 

Like any good mom, I have sought answers to WHY he is in so much pain. We went to the local ER, there was no obvious new injury. We went to our fabulous pediatrician, he agreed something was up and ordered an MRI. We took the MRI and went to our physiatrist and neurosurgeon in SF, they said there was nothing to explain the big change, or even the gradual difference. They made a few recommendations that I thought were a bit off of the wall. We came back home and told above mention pediatrician what happened, he thought I was telling him a joke. Lots of appointments, lots of answers, none of them helpful. Sigh. Stale mate, right?

 

Thankfully not! Our pediatrician helped us get a referral for a second opinion!! I researched and researched neurosurgeons, and especially neurosurgeons with lots of experience with Spina Bifida (SB) and Tethered Chord (TC) I asked LOTS of SB mommas in California if they LOVED their neurosurgeon and why or why not. From all of this I made a short list of doctors I had interest in, and took it to our pediatrician. He picked the one he liked best from the list and we started our new journey.

 

Yesterday Nathaniel and I, with the company of Grammie Sharon, headed up to Oakland to see the new doctor and get a fresh set of eyes to look at everything. After 480 miles, 12.5 hours and a few intense hours with Dr. Sun we are back home and ready to share where this journey is heading now.

 

Dr. Sun looked at the most current MRI, the 2012 MRI and the 2007 MRI (there were no images done between 2007 and 2012 on Nat). Right off the bat he saw the tethered cord that we knew was there, but have repeatedly been told wasn't the issue. Dr. Sun felt that Nathaniel exhibited enough symptoms that all the pain could well have been the tethered chord alone. But he went on to say that he also saw something else that he thinks is working WITH the tethered chord to make Nathaniel's life pretty dang miserable right now. Present in all three MRIs is a growth that Dr. Sun feels is a epidermoid cyst. In the 2007 it is a speck. In the 2012 scan it is present just on the edge of the film, like the bottom of where they were scanning. And in the recent film it is right at the edge again, but significantly bigger than it was a year ago. The placement of the cyst in the middle of his spinal cord, and has caused the cord to split and go on either side of the cyst, also it is right in the area where Nathaniel is most tethered. Dr. Sun feels confident that all of this is what is causing Nathaniel's pain right now and that it must be surgically corrected.

 

At this point, the current game plan is to go back to Northern California on Tuesday for 2 more tests that need to be done. One is the urodynamics test that we already had scheduled and the other is another MRI that will focus more all around this cyst area and hopefully show us all angles of it (we currently only can see the top portion of the cyst in the films because they only went as low as lumber and the cyst in the lumbar/sacral area.

 

Once both tests are completed and we have a completely clear picture, then we will be doing surgery. Those of you who journey SB with us know about tethered cord releases, but many of our other friends and family don't so I am going to do a quick overview. Dr. Sun laid out all of the risks, and while they are pretty heavy duty, I have complete peace that this is what Nathaniel needs to get back to living a pain free life. Those that don't know about tethered cord releases, you can either google it, or just pray for the best. They are risky and they are extreme but I am focusing on God's perfect will and perfect healing! I won't be focusing on all of the what ifs. Dr. Sun feels that the surgery should last 10-12 hours, and it will be his only case the day he does it. That will be interesting for this momma to sit through! The recovery is one of the hardest parts from what I understand, and we will be doing most of it in Oakland. I have been told the first 48 hours out are the most critical, the first week he will not be allowed on his back, and the whole recovery should be 6-8 weeks total.

 

At this point Nathaniel is very excited that we now know what is causing his pain and he is ready to get it fixed. I have not, nor will I be telling him the WHOLE scope of what this is. I am having a hard enough time wrapping my brain around it and I had a gut feel at least half of it was coming! Nathaniel just needs to focus on getting better, not obsess on each step of the journey. I pray you understand where I am coming from on this and respect my choices but not asking hard questions or discussing much in front of Nathaniel. Nathaniel's job on this journey will be to trust in the Lord, his doctors and his family and just get better.

 

Many I have spoken to today have shed tears, and my heart feels the same way. While I have complete peace, and utter faith in the Lord, this is going to be a tough journey on our family. That said, we will endure! I have given and will continue to give to the Lord all of this, and especially my dear, darling son. I trust that He will take us down His perfect path for this journey.

 

Your prayers and love during this will be paramount to our well being during this new journey. I especially am so thankful for each and every person the Lord has put in our life. I am surrounded with wonderful, loving, caring people and that make everything more doable! From the bottom of my heart, THANK YOU, the Lord uses you to help give me the strength to do what needs done.

 

In closing I will leave you with my newest mantra for life, hope it touches someone!

 

BE the unique person God called you to be so you can DO the giftings and passions He gave you and then you will HAVE the peace and grace that only comes from him!