What is Ocober p2..

It's the little things that are different when you are living a life with Spina Bifida.

Like the first day of school!

 Bags packed and ready to go....

for TWO children!

FOUR for Nathaniel and one for Audrey!

Shall I explain?

The red back pack is a 48 hour emergency supply bag. Now this might be special for us since we live a few short miles from a nuclear power plant, but our students have to have 48 hours worth of emergency supplies with them if they have anything "special". Well Spina Bifida is special so in that backpack are pull ups, catheters, lubricant, gloves, medications and a change of clothes. Also in there are detailed instructions as to Nathaniel's care, so that if for some horrible reason his regular aids at school are not available Nathaniel can still receive the care he needs.

The two black bags are all of the catheter supplies that are needed at school. 2 boxes of catheters, two bags of pull ups, 2 containers of wipes, 2 tubes of lube two boxes of gloves and a change of clothes. If you know anything about how medical supplies are sent, then you probably realize that I have to hoard supplies all year to be able to send THIS MUCH to school at once, but long ago I realized that the staff is NOT good at telling me when they are LOW on supplies. The system that we have used for years and seems to work well is that I send TWO of everything in the beginning and when they open the "back up" (or second one) they notify me so that I can replace it. This works well because we never run OUT of anything!

The Blue back pack is Nathaniel's daily back pack.

And the tan back pack is Audrey's daily pack.

Geesh... all for two kids to get to school on the first day of school!

Can you see why I feel like I organize for a week for the kids to go back to school?

But otherwise the first day of school at our house is just the same as yours....

 Excitement about choosing the "perfect" first day out fit.

 Excitement about seeing familiar friends and starting new things.

And one child thrilled to pose for pictures while the other hides from the camera.

Oh.... what is that you say?

Only MY kids pull that? Bummer.

I thought it was universal!

How are simple things different in your life?

Trading My Sorrows

I love the simple joy of singing worship songs with my children.

I love their excitement when on of their favorites comes on in the car.

I LOVE it when my son yells from the back seat "turn it up Mom!" and it is one of my favorite worship songs.

That happened in the car today and I have to tell you it made this mommy's heart melt!

So I thought I would share the song with you.

I'm trading my sorrows

I'm trading my shame

I'm laying them down for the joy of the Lord

I'm trading my sickness

I'm trading my pain

I'm laying them down for the joy of the Lord

We say yes Lord, yes Lord, yes, yes Lord

yes Lord, yes Lord, yes, yes Lord

yes Lord, yes Lord, yes, yes Lord, Amen

I am pressed but not crushed

Persecuted, but not abandoned

Struck down, but not destroyed

I am blessed beyond the curse,

for His promise will endure

and His joy will be my strength

Though the sorrow may last for the night

His joy comes with the morning.

I'm trading my sorrows

I'm trading my shame

I'm laying them down for the joy of the Lord

I'm trading my sickness

I'm trading my pain

I'm laying them down for the joy of the Lord

We say yes Lord, yes Lord, yes, yes Lord

yes Lord, yes Lord, yes, yes Lord

yes Lord, yes Lord, yes, yes Lord, amen (2x)

Isn't the imagery in this song beautiful. That we can take all of the sorrows, and the pain, and the sickness, and really just the GUNK of life, and lay them down at the foot of the cross. And then, (this is the best part!), in their place we can take up the joy of the Lord!! That is so awesome to me.

And this part REALLY speaks to my heart:

I am pressed but not crushed

(because YES, I am pressed at times in my life...
 many times it feels like!)

Persecuted, but not abandoned

(NEVER abandoned with the Lord!)

Struck down, but not destroyed

(The enemy does NOT have the power to destroy when the Lord is in control of you life!)

I am blessed beyond the curse,

(I feel the curse in my life.... do you have one in yours?
But the blessings go beyond it!)

for His promise will endure

and His joy will be my strength
(thank goodness I don't have to do it in my own strength!)

Though the sorrow may last for the night

(yea... that night feels REALLY LONG in my life....)

His joy comes with the morning.

(But man am I looking forward to THAT morning!!)

And now that you have endured my commentary on the song....

Here!

Simply listen and enjoy!

 

What are some of your family favorites?

Which songs speak to your heart?

Thank goodness for God's grace!

Are there times that you wish it was easier to be Godly?

I have those moments.... and I had one today.

It stinks.

It is HARD.

And sometime I just don't want to do it....

But then I remember that Jesus never promised us that life on this earth would be easy. And he never promised us that we would like it. Nor did he promise us that we wouldn't ache with pain so deep and heart wrenching that we think we can't breathe!

And then I remember his promises. He DOES promise to be right there with us. He DOES promise to love us through our pain. And he does promise us that he has a perfect plan for it ALL.

So when those moments happen (like happened for me today) I fall on my knees knowing that he is there with me... and you can too!

But it still HURTS.

And it still makes me cry.... and I still HATE it.

I just know how to get through it without becoming a bitter woman over it!

So what happened today? Well I am so glad you asked!

I met a client downtown today to get some treasures together for an order for her children. Now I am not big on downtown.... just too many people for me! But that was where the store was we needed to be at. So after a LONG spell at the store gathering lots of treasures, the kids (who were AWESOME during this trip!!) and I headed back to our car (which was parked forever away from us of course!) On this little jaunt we ran into members of Mark's family.... TWO DIFFERENT sets of them no less!

Now SOMEHOW I am the big bad b*&%$ to these people.

And that is so not fair.

And it HURTS me to be judged that way.

First... it's not fair! I know that I am not blameless but in truth I am not at fault either. I hung in a HURTFUL marriage for 13 years. I endured YEARS of Mark's addiction and prayed constantly for him. I loved him through all his falls and tried so hard to show him that there was a way out of the addiction if he wanted it. But in the end, having Mark in our lives daily was HURTING the kids and I emotionally and physically. I had to leave. And I KNOW that God lead us down the road that we are on. I have no lack of peace that God is control of this journey. I also know that I am healthier than I have been in YEARS right now, even though I am deep in the valley. But I want to know why I am the bad guy here? I am not the one with the addiction. I am not the one that has lost job after job due to that addiciton. I am not the one that physically harmed people. I am not the one who lives a life without morals. And I am not the one who CHOSE something over my family. Why do these people hold me responsible for this?

And secondly.... it HURTS. It hurts when people hug on my children but refuse to say hello to me. It hurts when they speak to my children right in front of me, but will not acknowledge a word out of my mouth. It hurts when they refuse to even LOOK at me. And it hurts when my children ask me questions about the encounter.

I am a person. I have feelings. These are MY children you are speaking to. Can you not have the least bit of common courtesy to their mother? The one who provides for them. The one who raises them. The one who allows you to see and speak to them. The one who sacrifices herself daily for their well being. I am also the one who prays DAILY for Mark to be victorious over the demons that hold his life. I am the one that teaches those children that their father is in a battle for his eternal life and the best thing we can do is pray for him. Why is it so hard to be POLITE to me??

So tonight I hit my knees in prayer.

In prayer of thanks giving that He is ALWAYS with me.

In prayer of adoration that He loves me no matter what.

In prayer of praise and thanks giving that that very love is one I feel all around me. 

 In prayer for these people who hurt me.

In prayer for the situations that terrs families apart.

In prayer for Mark and his battles.

In prayer for my children in this hard situation.

In prayer for me, that I have the strength to act in manner worthy of Him next time I encounter these people. (Because there will be a next time.)

In prayer that I lay ALWAYS in His arms, NO MATTER WHAT.

Thank God I have God.

Because it does hurt, but I KNOW that there is an eternity at the end of this that will make it all worth it.

And because, seriously, how do those without Him get through these moments?

A prayer walk and a few thoughts... (and that much promised update too!)

I FINALLY got time to go for a prayer walk this morning and just chill with the Lord. I usually do this a couple times a week, but life has been so chaotic recently that I have not been able to carve kid free time out to do this... and man was I IN NEED! So glad I could make the time this morning. This post is mostly going to be fun pictures I took this morning mixed with random thoughts that are demanding release from my brain.

 One of the things heavy on my heart right now is Nathaniel's health. We have been on a roller coaster with the craziness with his foot for the last couple of weeks. (If you missed those posts you can catch up HERE and HERE)

When the sensitivities finally came back Nathaniel had THREE separate strands of Staph in a a foot with no open wound on it... Not good! The treatment options were difficult and thoughts on them were varied. But we came up with a plan that his primary doctor and I were good with, and Praise the Lord, it seems to be working. So he is wheelchair bound again, with his zero bearance brace on again, on heavy duty antibiotics, and we are treating the wound area daily. The chair is not much fun for any of us, but it makes me so thankful that it is not a constant, everyday thing in our lives yet. The brace is no big deal, he always has some sort of brace on his feet, so it's just a different one. The antibiotics concern me, but I know it's the only way to treat this infection, so I am dealing with it. The wound treatment is the part that is killing me. His doctor put in for a home health wound care specialist to come by a couple times a week to check it and help with the wound care, but of course his state ran insurance refused. So I am still doing all of the packing and dressing changes... and loosing tons of weight in the process! And I am not really sure that it is looking perfect, but it is improving... so I guess that is all I really need to know... Ugh! We go back and have it checked on Wednesday, so I am hoping for some answers on how it looks then.

 In the past 6 weeks or so I have taken a really hard look at life, our family and what exactly we need to be supported and survive in a positive manner. I have faced some pretty hard realities as a mom and as a person, but I think my heart is coming around to the needs and what my head has been hiding from for a while now.

 One big and hard decision was to seek psychiatric support and put Nathaniel on some more medication. I knew that the plan would be to medicate him into a state where the negative and harmful behaviors were gone, but I was very concerned that he would be so medicated that he would loose his personality and be sort of like a zombie. But in truth, I am so happy with the results I am totally kicking myself for not doing this sooner!

Years ago in the medication search for him we found the key that unlocked his brain. It was night and day different and so obvious that this was the right answer for him. When he is on his "thinking meds" as we call them, it is like a TV that is full of static or snow and someone adjusts the antenna... all of the sudden he is more clear, he is even old enough to notice the difference now. I prayed and prayed that it would be the same with the new medications, and God is ever faithful. Nathaniel always had this angry edge to him, any conflict or expectation he didn't like sent him into a fit of rage. Very physical, violent rage. But with this new medication it is like the edge has been removed. He still gets angry and frustrated, but he doesn't go straight to violence, he is much more teachable and redirect able in the moment now. Again, it is night and day difference in our household! We have not had a physical outburst or rage in 21 days!!! Before we were completely lucky to go 2 days between rages. All of the bruises I so regularly had all over my body from him have healed..... Things are so different in our house right now, and it is a peace that I can breathe in!

I know that the medications have side effects and risks, but to me keeping him at home and out of a group home is completely worth the small risks associated with the medications. I am not advocating this for everyone, it was something I completely had to pray over and come to terms with, but for our family it has made an INCREDIBLE difference and we are so happy!.

 A few weeks ago I went to a seminar on neurological brain damage and helping people with it live to their fullest potential. It was completely eye opening and enlightening to me, but it also made me face some hard choices and readjust my brain. I think it will have to be it's own post. But it did make me take a hard look at the supports that we have for Nathaniel and assess whether they were the RIGHT supports for him. And I think not. I think it is time to move away from ABA Behavior support and move towards a daily living aid type of support. It is going to be hard in many ways (finding the funding, fighting for the need and filling the staff positions) but I think it is what both Nathaniel and I need. I also think that is will help with Audrey too... that poor girl does not get much of her mommy because I have to deal with Nat's needs all the time. I think this road will help balance our family life o much more. Won't you pray for us on this journey?

 I really am at peace with my being done with Butterfly Boutique. I fully recognize and see that it is time for me to be at home with my children full time. But what I am not so much at peace with is the loss of Butterfly for our community. I have prayed so long and hard over this one, and I still feel like there is this 11th hour buyer hanging out out there. It is a crazy feeling (and I am wondering if it is just me not wanting to do the hard work of tearing the store all apart!) but I just can't shake it. We are coming up on the last two weeks of business and there is SO MUCH to do, yet I find myself organizing for the "new owner". Crazy......

 A scripture on my heart constantly these days

Matthew 6:25-27 ²⁵"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? ²⁶Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? ²⁷Who of you by worrying can add a single hour to his life? "

God is faithful. He CARES. He provides. He is. That is all I need to get through each day. I am resting in these truths.

 The subject of friends seems to be "in my face" these last few days. At home group, at therapy, in my heart and in my desires. It is trippy and I am sure there is a message from God there somewhere, I just haven't figured out WHICH message it is yet. I know the message that I hear is that I miss my two nearest and dearest friends. The ones that look at me and know when I need a long hug vs. when they need to speak truths to me in love. The ones that can speak those truths, but are still right there with you to walk it out. And I really am missing the one that I can sit out under the stars with and talk for hours about the hard things in life. But, alas those friends are so far away right now, and they both have their own lives, so here I sit, virtually alone with only acquaintances (and I have so done that to myself!). Is it time to get real with someone new? And do I trust enough to try after the multitude of someones who have heard my heart and then ripped it to pieces? But on the other hand, can I really keep going alone? Ugh. I see why the Lord keeps putting this subject in my face, I am just not sure I have the energy to walk forward on this path with so much else going on, another betrayal will knock me off the path right now.

 Ever feel like the ship lost at sea just riding it all out? That is me these days, but thankfully I know my Captain has the plans and knowledge in His hands... I am just along to gain my sea legs.

Praying that I get those sea legs soon so that this lesson can end!

Do you know what October is????

Do you know what October is??

October is beautiful weather here on the Central Coast.

October is all things fall.

October is count down to Halloween time.

But in our house, above all else,

October is Spina Bifida Awareness Month!!!

15 years ago, I had no clue what Spina Bifida was, even 12 years ago I was clueless. But about 11 years ago I began my education, and man what a trip it has been!

This year, for SB Awareness Month my heart is not for a cure (although that would be nice for future generations), nor is it really for treatments (although we all still need them) but my heart is for ACCEPTANCE! My heart is that these very special people be understood, accepted and embraced. Because to be brutally honest, this mommy is sick of the strange looks and the judgements! But I also know that in order for people to accept they need to understand ... so here starts my quest this October... bringing more people to a place of understanding!

So what IS Spina Bifida you ask? Well thank you for asking.

According to the CDC "Spina bifida is a major birth defect of a baby's spine. It is one of the most common, permanently disabling birth defects in the United States.

Spina bifida occurs within the first few weeks of pregnancy, often before a woman knows she is pregnant. It happens when the spine and back bones do not close all the way. When this happens, the spinal cord and back bones do not form as they should. A sac of fluid comes through an opening in the baby's back. Much of the time, part of the spinal cord is in this sac and it is damaged.

Most children born with spina bifida live full lives, though they often have lifelong disabilities and need many surgeries. Some of the problems that a person born with spina bifida might face include:

•Not being able to move lower parts of their body. (Some might need to use crutches, braces, or wheelchairs to get around.

•Loss of bowel and bladder control. (Some might have to wear protective clothing. Others learn new ways to empty their bladders and bowels.)

•Fluid building up and putting pressure on the brain (hydrocephalus), which needs to be fixed with an operation.

•Learning disabilities.

•Allergy to latex (a created material found in some rubber-type products such as balloons or hospital gloves).

All children born with spina bifida don't have the same needs. Some children have problems that are much more severe than others. Even so, with the right care, most of these children will grow up to lead full and productive lives." (to read more from the CDC on Spina Bifida go HERE)

The two things that strike me about Spina Bifida most, that most people just don't get are:

1."It is one of the most common, permanently disabling birth defects in the United States." There is no cure. There is no "getting over it". There is no light at the end of the tunnel when those with SB will be done with it.

2."All children born with Spina Bifida don't have the same needs. Some children have problems that are much more severe than others." It is different for everyone. Unique, and confusing for everyone.

And the thing I am personally struggling most with about Spina Bifida right now?

I have had to come to the conclusion that we are looking at some pretty major neurological damage, and there are things that I hoped we would "get over" that I am feeling less hopeful about. I am seeing that we are definitely on the much more sever side.  But more on that on another day :)

I hope you will check back often and expand your knowledge, understanding and acceptance of those with Spina Bifida, thus leading to your embracing them, and others that are unique like them :) But don't worry... I will still do regular blogging this month too :) Nothing like mixing it all up, right?

And the highest honor to me this month? SHARE that October is Spina Bifida Awareness Month, SHARE posts like with your friends and family (yes, you have my full permission to link to this or any of my posts), and help others to UNDERSTAND....