God’s Love!

 

Got it?  So let’s all go out and show God’s love to each other today! 

 

~A special message from Ryder!

Church Performance

At Church today the Children sang 3 songs they had been practicing.  On the way there Ryder told us he was going to be the loudest singer…well…he was!

Haha – He’s such a little performer! 

The Ryder Show

Good Morning and welcome to the Ryder Show!  I know that most of our blog readers usually check in and do their blog reading first thing in the morning before their day starts.  So grab a cup of coffee, watch, and enjoy this installment!  (The person taping the Ryder Show would like to apologize for the poor filming, it’s not easy to shake a rattle in the band PLUS keep up with the lead singer who tends to be all over the stage).

Hopefully your coffee gave you an ounce of the energy this kid has.  Or maybe that video completely wore you out like watching the Ryder Show tends to do to me.  So here’s a more mild version, the one Maisy wakes up to in the mornings:

On that note, we here at the Ryder Show would like everyone to have a GREAT Jesus Day! 

God Knows

Just when I thought I had this whole “Mommy of Two” thing figured out and under control, a day like today comes along.  Eating every 3 hours turned into every 1.5 hours lastnight for Maisy, resulting in very little sleep for either of us.  Ryder wakes up crying, which is never a good thing.  All we needed to do was get fed, dressed, and out the door.  Simple enough, right?  Yesterday we had to leave to get Ryder to therapy (an hour each way), our first time out alone as Mommy with both kids and all was smooth sailing!  Today all we had to do was drive 2 minutes down the street, piece of cake…WRONG!  So wrong. 

Maisy didn’t know whether she was hungry, or tired, or both!  Ryder just plain didn’t know what he wanted.  He didn’t want to get dressed, he didn’t want his shoes on, his hair done, he DID however make it known through tears and screams that he wanted to go on a treasure hunt.  Treasure hunting was not in Mommy’s plans this morning, my only goals were to get fed, dressed, and out the door.  Since none of these things were happening, I got frustrated.  I just really wanted to join in the tears and cry with both of them.  Since I knew that wasn’t going to get me anywhere, I tried yelling…which led to more tears…not the result I was looking for.

We did eventually get out the door, I brought Ryder to Nana’s and me & Maisy headed to run the errands I needed to get done (not without more tears because she decided she didn’t like her carseat today!).

By the time I got home, it was 10am, and felt like it should have been 10pm.  I noticed a little gift sitting on the buffet by the front door and remembered that Cindy had sent it home with Alan lastnight for Me & Maisy.  It was from an elderly lady in the Church named Margie.  A bar of soap for Mommy, a baby photo album, and a card that read “Praise God for Children!” (far from what I had been doing this morning!).  But what really spoke to me and made me realize that God knows each and every time that I struggle was a page that had been ripped out of a devotional book and placed inside of her card to me. 

Nurture Your Children in the Lord

And, ye fathers, provoke not your children to wrath: but bring them up in the nurture and admonition of the Lord. Ephesians 6:4

“Family relationships can frequently be frustrating, challenging, and even hurtful.  But, they can also bring us joy and blessing.  Paul had a special word for fathers (and mothers as well) in today’s verse.  If adults aren’t careful, they can place unreasonable expectations on children.  A child’s tender heart can be quickly wounded by harsh words.  Paul balanced his warning with encouragement to train children in God’s ways, disciplining them while loving them.  Parents are intentionally to cultivate their children’s interest and knowledge in spiritual truth, using biblical principles.  A spiritually and emotionally well-nurtured child is a joy to parents, as well as to God!”

Somehow Margie knew that I was going to need this encouragement.  Thank God for the elderly women of the Church who care enough about us young Mom’s to share their wisdom and truth with us.

Of course when I read that I realized how NOT nurturing I was to my children this morning.  Then I thanked God for his unconditional love and forgiveness and for being with me when I struggle.  I want to be patient, nurturing, loving, and kind to my children ALL the time…not just when I’ve had enough sleep and my morning cup of coffee!

Excuse me while I go snuggle my girl to sleep then set up the biggest baddest treasure hunt my boy has ever seen!

The Box: Part III

…continued

Unfortunately, right after we purchased our land was about the time that the market crashed.  The thought of a young couple, as first time homebuyers, with hopes of building a unique structure like a log cabin, was kind of like a joke to the mortgage companies.  There was just no way it was going to happen. 

The walls on The Box were beginning to close in on us.  Time was flying by, wedding plans were in full force, and our temporary home started to seem a little too permanent.  We were stressed!

We exhausted every possible option to build our log cabin and nothing was working out.  It was time to move on to a new plan…fast…because the wedding was approaching!  We spoke to a family friend who is a Builder and he told us about some smaller lots that he had in a neighborhood that he could build a house on for us and then we could get a normal loan when it was finished.  SOLD!  Where do we sign?!

Construction on the new house got started, we got to do all the fun stuff like pick cabinets, flooring, and colors.  Our only hang up was that we had to sell the land before we could get financed for a new house.  We made flyers, posted ads, got the word out that our little gem was for sale…every taker we got fell through for one reason or another.  Financing a piece of land or getting a construction loan was no longer an easy task for anyone.  We tried to use the selling point of being able to live in The Box, but that must not have sounded as appealing to others.  We were at a loss.  The new house was almost complete, the land was still not sold, the loan was ready to be closed as soon as proof of sale was provided, and the wedding was just over 3 weeks away.  I knew that Alan did not want to marry me and carry me over the threshold of The Box, I had to respect that wish, something had to give.

I remember coming home from work one day, we sat on our bed (again, the only place to sit) feeling claustrophobic and helpless and Alan said to me “something is missing!  There is a missing piece that we are just not seeing that is making this not work out for us.”  I held onto those words for the rest of the night and I prayed HARD!  Alan was right, we were missing something, but what was it?  The next day, driving in my car, it hit me like a ton of bricks.  The words of our Pastor during our pre-marital counseling we had a year prior.  He talked to us about living together before marriage and we told him that we knew we were living in sin and were trying to make it right by getting married, but had no plans of changing the current situation.  He said to us “I’m not asking you to change it right now, and I can’t tell you what to do, but I will ask you to consider abstinence sometime before you marry so that you can see just how special God meant for things to be.”  I kept hearing his words loud and clear, so I called my Step-Dad who has been a huge influence in my Spiritual life.  I had to run this by someone.  I told him about Alan’s comment and about this revelation that I felt like I was having.  He was speechless and finally got out that it had been weighing really heavy on his heart to talk to me about our living arrangements.  He had never approved of them, but tried not to lecture us or preach to us about it over the years.  But something was telling him to talk to me about making this right with God.  My next phone call was to Alan to tell him that I was moving out.  I was nervous, and thought for sure he would think I was crazy (we had lived together for 6 years!), but he didn’t at all.  I told him that I felt so strongly that this was the missing piece, that if I moved out until our wedding that things would fall into place.  His response was one of desperation “I’m willing to try anything at this point.” 

I wasted no time in packing my bags and driving to my Mom’s where I would be staying for the next few weeks.  On the way there, I got a phone call from the Lawyer who I had contacted to do the settlement on the land with one of the potential buyers who fell through.  She was also the Lawyer who did the settlement when we purchased the land.  She asked me what was going on with the buyer and I told her they backed out and how devastated we were.  She told me she wanted to make a phone call and would call me right back.  I pulled into my Mom’s driveway, walked inside, and my phone rang.  It was the Lawyer, who proceeded to tell me that she still has a relationship with the older couple who we purchased the land from, she had called them and asked them if they would be interested in purchasing the land back, they said ABSOLUTELY!  My jaw hit the floor (not a bad deal for them, considering it has been a rental property ever since!). 

Of course my sinful nature told me “okay it worked, you can go home now”…but I shoved that thought out of my head!  I had to hold up my end of the deal, and I did, and it was so worth it.  Alan & I spent the next few weeks before our wedding spending the night apart.  Within that time, we closed on the sale of our land, finished up last minute wedding plans, and went to settlement on our new home on March 5th, 2008, 3 days before our wedding!

  

And guess what…Alan married me and did not have to bring me back to The Box!

Although we are so very very very happy to be out of that tight space, The Box will forever hold a special place in our hearts.  It brought us so close together, I mean you have to really like someone to be able to live in a box with them for a year and a half!  We made so many memories there.  And it truly made us appreciate things like space, hot water, closets, chairs and cabinets!

So that’s the story of The Box.  I promise I’ll buy some camera batteries now!

A Picture of a Stroke

Today we had a parent meeting with Ryder’s Neurologist.  We scheduled this appointment way back on March 26th when we got the news that our son had suffered a stroke in-utero.  It seemed like a really long wait to be able to get some questions answered, but in a way I think God might have delayed this appointment in order to spread some of the “heaviness” out and let us just enjoy Ryder and watch him develop for a while without someone telling us what he may or may not do.  Now we know that Ryder can walk, we hear him talking up a storm, we see him beginning to use his left hand, so all of these serious, scary questions that we would have had back then are completely pushed out of our minds as we watch our miracle baby defeat odds right before our eyes.  That still left us with a lot of questions, and I’ll share some of the answers we got:

What part of the brain did the stroke occur in and what does that section control?

Ryder’s stroke happened along the right lateral ventricle effecting the white matter, which is not the part that houses each of your functions.  Because of the location, it is not a function that will be affected, but instead it is the signals that the functions are sending to his left side asking it to react properly.  Since there are millions of little wires making all of these connections, it’s impossible to say exactly which ones have been damaged and which ones will make new pathways.

When did the stroke occur?  And why?

It is estimated that the stroke occurred somewhere between 24-30 weeks gestation because A) there is a cyst around the stroke location which would only happen in utero when the brain is still forming, otherwise it would be surrounded by scar tissue, and B) he was thriving when he was born and never went through an extremely “sickly” period, which would have happened if the stroke had occurred during or after birth.  There is no answer for why it happened.

Is Ryder at risk to have another stroke?  And what about any future babies that we might have?

NO and NO!  Shewww. 

Could his eyesight have been affected?  Sometimes we notice his right eye drifting while his left eye stays focused.

This is called Strabismus and it is actually common in many children, even those who aren’t stroke survivors.  It is best to wait and see if it corrects itself by age 2.  If not, follow up with a Developmental Ophthalmologist will be needed.  Your brain processes your eyesight directly behind your eye which is not near the stroke location, so it is not directly related to the stroke, but could have happened in some indirect way which wouldn’t show on the MRI.

So what is his diagnosis?  Sometimes we hear Hemiplegia, sometimes Hemiparesis, and sometimes (gasp!) Cerebral Palsy.

Cerebral Palsy is a term, not a diagnosis, referring to a motor development problem caused by damage to the central nervous system.  So by that definition the term cerebral palsy could be used to define the damage caused to Ryder’s brain that has left him with some motor impairments.  Hemiplegia is complete paralysis and Hemiparesis is partial paralysis or weakness, so his correct diagnosis is Left Hemiparesis.

Your outlook on the situation?

If someone were going to have a stroke, the best time to have it is in utero, the best place to have it is in the white matter, and the best chance to recover from it is as a child.  So everything is working in his favor but no one can say how much of a recovery he will make because the brain is an extremely complex thing…and everyone is different.  He most likely will not recover all of the sensation in his left arm, hand and fingers, and his left side will definitely be less coordinated…but whose isn’t?  This happens naturally as one hand dominates and the other becomes weaker.  As he gets older he might be able to tell you little quirks that are different for his left side than right, but most things he won’t notice because it will have been normal for things to feel that way his entire life.

So, before I show you a picture of Ryder’s stroke, is this not the most adorable brain you have ever seen?

Was that weird?  Okay sorry, I couldn’t help it, I think it’s cute!  Onto the real stuff, below is a picture of Ryder’s stroke.  The right side of the picture is normal, the left side shows the damage that was done.  It looks bad, but the Neurologist assured us that if it had spread and reached the outer part (the gray matter) it would have been devastating.

 

So there you have it, a picture of a stroke…but let me show you what a stroke looks like to us:

We look into these baby blue eyes and see a heart of gold, a determined spirit, and a child who has a genuine love for life.  He might keep his fist clenched, and he might end up walking with a limp, but whatever happens, he is a survivor.  And he is a true gift that could have only come from God above. 

Women Of Faith

This weekend I snuck away for 2 days with the “Ladies of Faith” as we were labeled by a man with a megaphone collecting change on the corner…oh how I wish I had a video to share to show you what had us laughing for the entire weekend…or better yet, next time you see Mandi in person, ask her to sing you “Mary Had a Little Lamb” DC style!

Me, Nicki, Mandi, Jen, and Sherry ventured to DC for the Women of Faith conference…it took blood, sweat, and tears (LITERALLY!) to get there, but we are SO glad we went!  I think each of us were extremely blessed by the speakers and the music, it’s an experience that is hard to put into words.  But we are most definitely going back next year, so if you need a little inspiration, join us!  You will laugh HARD, and you will cry, but most importantly you will hear about and feel the love of God so deeply that it will change you.  Thanks for an amazing weekend ladies!

Ryder got to have a little male bonding time with Daddy while I was away, in which he learned that crawling is for sissy’s, how to bob & weave & throw punches, that “ants” get “stomped”, and that his Daddy is the coolest guy on Earth.

I’ll leave you with one last thought brought to you by none other than the man with the megaphone: “Ladies get yo fingers out yo ears…what…you ain’t tryin’ to hear the Gospel?!”

Hope Now

~Everything rides on Hope now; Everything rides on Faith somehow.

And when the world has broken me down…Your love sets me free.~

I saw a quote one time that said “Music is what feelings sound like” and that is exactly what this song is for me.  On days like today when I have so many feelings and emotions and frustrations hitting me at once, it’s so nice to be able to put a song on repeat that can capture those feelings and give me peace about them.

I try to not to bring too much negativity out in this blog, but there are days that are consumed with it and it would be near impossible not to atleast mention that this situation can be hard at times.  My blog readers always leave the sweetest comments that leave me in tears, telling us how strong we are as parents…the truth is that there are days when the world breaks me down and I feel so weak.  I don’t like conflict in my life, so to be in the midst of arguments with insurance companies and doctors and therapists and the state and work is so uneasy and unsettling for me.  On days like today, the only thing I know to do is cry to my husband, get pep talks from my amazing friend, blog about how frustrating life can be at times, and squeeze my precious little boy so tight and whisper in his ear that I will never stop fighting for him to get the care that he needs because he is so worth it.  Oh, and listen to this song for the 15 millionth time, because everything really does ride on hope and faith for us right now.  There are so many doors being slammed in our faces and so many factors that are up in the air right now.  I just need to keep having faith that God is going to work this situation out for us.  His love really does set us free from having to worry about the people of this world trying to make things so hard.

 

Isaiah 41:10

A while back I was reading through my Bible and came across this verse that really stood out to me.  I read over it a few times and had this thought that one day I would need to come back to this verse.  So I did something that I never do, I went and got a post-it note and wrote the verse down, then stuck it in my purse for an easy reference, just incase the day came that I wanted to look it up and re-read it.  I was proud of myself for doing this, instead of telling myself that I’ll remember it and never being able to find it again.

This has been another rough week.  This therapy schedule is tough and we are ending the week exhausted, just as we did last week.  When I am energized, I can stay positive and I can deal with things as they come.  But being tired and stressed is just not a good combination for my brain, I can’t process things, so I end up over-analyzing this whole situation.  Is all of this therapy going to work?  Is it mean to do this to Ryder?  Does he even need all this?  It’s costing so much money.  He hates these long trips in the car.  Maybe I should just cancel all the rest of his appointments.  But wait…they just told me that his motor skills are at the level of a 10 month old!!  Obviously he needs this therapy.  He has fun while we’re there and they are helping him.  I mean, I think it’s helping. God, can you just please give me a glimpse into the future so I can see what happens.  Does the therapy help?  Does he get better?  Can you just show me a day in our life 10 years from now.  Can he use his left hand?  Can he play sports?  Is he happy?  And that’s about 5 minutes of the 1.5 hour trip to or from therapy.  I think I’m the one that needs a therapist, HA! 

Luckily I can find my therapy in my quiet time with God.  On the weekdays I wake up at 5am to read my Bible and spend time in prayer before starting the day.  (Just a side note, I joined the 5:00 club on the Girl Talk Blog and this concept has been a true blessing in my life!) Well one morning this week as I opened my Bible to continue my reading, I got this weird memory of a verse that I wanted to remember.  I knew it was in Isaiah.  I started flipping the pages, hoping that it would jump out at me.  I remembered feeling like there would come a day that I would NEED to read this verse and the day was here and, go figure, I couldn’t find it.  I gave up looking for it that day.  The next morning, I could not get rid of that nagging feeling in my gut that I needed to find this verse, and then I remembered that I wrote it down.  I started shaking my Bible to see if any loose paper would fall out, nothing, checked my nightstand, nothing, checked my planner in my purse, nothing…but then I realized that it was definitely in a purse.  I started searching the purses in my closet, and there it was, on a yellow sticky note, Isaiah 41:10.  I don’t know when I wrote the verse down, but I can tell you that it was 3 purses ago!  I couldn’t wait to jump back on my bed and get to this verse, and oh how I hoped that it filled this void I had been feeling.  It did.

Fear not, for I am with you; Be not dismayed, for I am your God.  I will strengthen you, Yes, I will help you, I will uphold you with my righteous right hand.

Thinking back now to the reason I wrote it down, I remember thinking “if there really is something wrong with Ryder’s left hand, maybe this verse will make me feel better because God always references His own right hand as being strong and mighty”.  But now that I have found this verse, it has made me feel better, but for so many other reasons than what I initially thought it would!  This is EXACTLY what I needed to hear.  God is with me, I don’t need to be afraid of this situation.  He is making me strong even though I feel so weak and out of control, He is going to help me through this, and yes He is going to hold me up (with his right hand!) even when I feel exhausted and down.  It applies to Ryder as well…God is going to help him and strengthen him, whether he regains full function of his left hand, or none at all, he has nothing to be afraid of!  In fact, if you read a little further into the text, Isaiah 41:13 says:

For I, the Lord your God, will hold your right hand, saying to you, “Fear not, I will help you.”

Wow!  Thank God for post-its!  I’m not saying that all of a sudden I feel 100% great about this situation, or that I ever will…but atleast now when I start feeling down, I know where to turn.  Isaiah 41:10.

He Is Risen!

“Why do you look for the living among the dead?  He is not here; He has risen!”

Luke 24: 5-6

Can you imagine what today was like all those years ago?  For Jesus to have been crucified on the cross, and then find that three days later he is gone from the tomb!  He had told them of His death and resurrection, but then to see it actually happen…I can’t even imagine how that must have felt.  What a wonderful story of hope, faith, trust, and mainly LOVE!  What love God must have for us if He was willing to sacrifice his only Son to save us.  I’ve heard this story year after year, but this year, it sinks a little deeper into my heart.  I have now experienced the deep love of a parent to a child, so this ultimate sacrifice that He made for us has suddenly been put into a different perspective. 

Having the discussion with Alan about what it must have been like to live in that day to witness the death & resurrection of Jesus Christ, he assured me that I would have been running around, from town to town, spreading the news…cause, ya know, I like having news!  Ha!  So I’m here to tell you, in case you didn’t know, that He Is Risen!

Happy Easter!  I hope everyone has a wonderful day celebrating the fact that we serve a living God! :)

ANSWERS!!

You don’t know how good it feels to finally have a post that doesn’t say “we’re waiting on this” or “waiting on that”…the wait is over and we finally have ANSWERS!!

The Neurologist just called and went over the results of Ryder’s MRI and I’m happy to report that Ryder did have a stroke.  Okay wait, I’m not happy that Ryder had a stroke, but I’m happy to finally know that it was a stroke.  This is a good diagnosis because it means that:  1) There is no malformation on his brain, and 2) it was an isolated incident, not something that will continue to cause further damage.  And the information on the stroke gets even better…there was minimal damage done to his Cortex (Grey Matter), which means that the stroke took place in the White Matter, which if you are going to have a stroke is the BEST place to have one.  I’m trying to explain this in Mommy terms and praying that a Doctor doesn’t read it and roll on the floor laughing at my interpretation.  So basically, there is the outer part of the brain, the Grey Matter, that controls all of your functions, and then there is the White Matter underneath that has all these little wires (probably called Neurons or something, ha!) that send signals to your body to do that function.  So since Ryder’s stroke took place in the white matter, it means that he has to work extra hard to get those little wires stimulated so that they will start making new connections and sending signals to his body to function the way his brain is telling it to.  Any time you have a brain injury you are at a higher risk for seizures, but if his stroke had happened in the Grey Matter he would be at a “much, much, MUCH higher risk”.  So it is a huge blessing that the stroke happened in the White Matter and not the Grey Matter for all of those reasons.

Moving forward, the Doctor said that the report justifies keeping up with Occupational Therapy for rehabilitation.  He noted that the area that the stroke took place would suggest that Ryder’s leg would be more affected than it is.  The fact that he has regained a lot of function in his leg is proof to him that his brain is already hard at work re-wiring itself. 

In true Ryder fashion, the Dr. reported that out of all the possible outcomes, these results are “Significantly on the better end of the spectrum”!!

Thank you to everyone who has been praying for Ryder, even though he keeps having obstacles placed in his path, you can see how much God is at work in his life.  He has a special plan for this little boy…I just know it <3

These Are The Words I Would Say

Be strong in the Lord

And never give up hope

You’re gonna do great things

I already know

God’s got His hand on you

So don’t live life in fear

Forgive and forget

But don’t forget why you’re here

Take your time and pray

Thank God for each day

His love will find a way

 

These are the words I would say.

As we are now approaching the month that Ryder was born, I can’t help but reflect on this past year and everything that he has been through.  I’m so thankful for this song, “The Words I Would Say” by the Sidewalk Prophets, it has such a strong message that reminds me of where my focus needs to be … and these really are the words that I want to say to Ryder as he grows.

Ryder's Dedication

The Dedication of Ryder Joseph Marsh

May 17th, 2009

This was such a special day for us and for Ryder. Today we made a promise to our family, our Church, and most importantly to God, to raise Ryder in a Christian home and lead him to find Jesus. When the family and friends were asked to stand and join us in making that promise it was very overwhelming. I knew that the congregation was filled mostly with our family and very best friends, but the visual was breathtaking. To see that many people stand in support of us and to see the love that they have for Ryder in all of their faces...I just can't even put the feeling into words. Thank you, to all of you, you are so special to us and make us feel complete. Pastor Joe said this during the sermon today "Children learn what they live" and we believe that statement to be so true. I pray that we can show him a life filled with God's love and that one day he will find Jesus as his Lord and Savior. In this world, I don't know how anyone survives without Him.

The Power of Prayer

I have heard your prayer, I have seen your tears; surely I will heal you.

2 Kings 20:5

We just have to say thank you to everyone who has been praying for us and for Ryder. The power of prayer is truly amazing. I know that just in the hour it took us to get to the hospital the day he was born, we were put on atleast 10 different Church prayer lists, and had probably 100 different people praying hard between our families and friends (and friends of our families) for a safe delivery and a healthy baby. God is Awesome, He has been our sense of strength through this time of weakness.

Yesterday was a big day for Ryder and we prayed so hard. It was so comforting to hear the words "we'll be praying for you guys" from every person we talked to. We even received a text message prayer (thanks Grandma!). Well, we're so happy to say that our prayers have been answered, they've finally confirmed what is wrong with Ryder, they have a plan to fix it, and he's on the path to being able to come home!!

Some time next week Ryder will be getting surgery to carterize his Posterior Urethral Valves which will allow everything to start draining properly from his kidneys into his bladder. They did confirm that some amount of damage was done to his left kidney through all of this, but they're hoping he will regain moderate function in that kidney once the surgery is completed. The right kidney is working perfectly and you can live with one kidney so this is a huge blessing.

Please continue to pray that his surgery will go well, he will recover quickly, and that he can finally come home to his parents, family, and friends that are all waiting so patiently to get their hands on him!

Thanks again, we love you all, and together lets thank GOD that Ryder is going to be okay!!