His Compassion's are New Every Morning

Tonight I was trying to remember Carson's first week of life...  we spent that time at the NICU at Providence Hospital.  I was admitted to the hospital for a few days following my c-section and then spent the rest of the week in a family sleeping room on the same floor as the NICU.  One day, Kevin and I had a meeting with Carson's neonatologist Dr Knox, a nurse, a social worker and another person whose role I don't recall. During that meeting, we were told that as 'well' as Carson had been doing, because of different problems with his breathing, carbon dioxide levels, and just the amount of brain damage he suffered, they didn't expect him to live long.  They were recommending we go home on hospice care, and just enjoy every minute we had with him.  After that, we met with a wonderful pediatric hospice care provider Judy, and made arrangements to go home.  We stayed in the NICU for a couple more days after that meeting.

It is hard to recall fully all the discussions and decisions Kevin and I had to make after that meeting.  I know at some point we had to discuss whether or not we would call 911, if Carson stopped breathing.  We had to discuss what forms of resuscitation and life-saving efforts we would allow to help save him.  We had to discuss whether to keep morphine in the home for our nurse to administer when Carson would be at a place of just needing pain management.  I had a piece of paper next to my bed, where I had to jot down 'thoughts' and 'wishes' of a funeral for him.

Tonight I recalled a lot of those discussions... it seems like so long ago, and yet feels like just yesterday.  Tonight I sit here watching the baby monitor... watching my son, sound asleep in his bed.  Cannot believe in less than a month, we are going to be celebrating his 2nd birthday!!!  Now, nearly two years later, our discussions have turned from resuscitation and morphine, to preschool, a bigger changing table and what sounds he is going to make next!

Sometimes in life, we are hit hard and have to hold discussions we never thought we'd ever have to... sometimes we have to make tough decisions, without knowing which way life was going to play out.

I think about how God says that He has plans and a purpose for each one of us... yet, we don't know what journeys, trials and hardships that will entail.  Bad things happen in this natural life, in our broken human state and in our sin-filled world... people die, our bodies get sick, people are abused and abandoned, we are betrayed and beat down, we lose, we fall... and sometimes it is hard to know what 'plan and a purpose' God has for us in all of that.

But then God reminds me through my memories of Carson's first week through now - - - that even when things are hazy, confusing, hard, heartbreaking - He will see us through - He will bring us along our journey - He will use all of the 'stuff' as part of our plan and purpose.  I just hope that this blog post will remind me during the hard times - that there can always be a 'two years down the road' in the situation... that what seems unbearable and earth shattering in the moment, that God will someday bring me to a place of looking back and remembering that His compassion's are new every morning!  Great is His faithfulness!

God's loyal love couldn't have run out, 
     his merciful love couldn't have dried up.
They're created new every morning. 
     How great your faithfulness!
I'm sticking with God (I say it over and over). 
     He's all I've got left.
~Lamentations 3:22-24 MSG~

Savoring the Moment

What is it that causes us to 'pause' in the midst of something potentially exciting?  Is it past experiences of disappointment that stop us from savoring the moment?  Is it the fear of heart break?  Is it concern for other's reactions?

Carson sitting up unassisted!

Today I met with Carson's speech therapist Julie.  During our last two appointments, she has been pointing out to me, all the ways she sees Carson 'talking'... duplicating noises, copying our inflection in our words.  Today, she even said to me - he is not non-verbal, he is pre-verbal.


I should have rejoiced in that moment... allowed my heart to soar in hearing our therapist say those words; having hope that Carson is on a journey to speaking.


But instead, I was hesitant.  Are the things she is seeing just a 'fluke'?  Will he continue to grow in his speech?  Is this really the beginning stages of him speaking?


I think today I was saddened by my own response.  I realize that there have been so many ups followed by downs, expectations and hopes dashed, progression then backsliding... that I wasn't able to savor that moment; and that saddened my heart.


As I was thinking about my reaction, the Lord brought my friend Tiffany to mind.  Recently, she experienced the most amazing thing - she saw the very strong heartbeat of her very healthy 12-week baby, growing in her womb.  After the tragic loss of many babies before this one, this first trimester has been very hard for her.... she has gone through many 'hesitations', many times that she hasn't been able to 'savor the moment', all because past experience has shown her that this dream that she is holding in her hands, could pass away.  But now, after seeing and hearing this baby's heartbeat, she can now rejoice in the fact that she is going to be holding her baby in about 6 months!  GOD IS GOOD!

Swinging in a toddler swing
for the first time!

Here I am today - realizing I am living in the moment of fear, of uncertainty... wondering what our 'ultrasound of life' will hold.  I'm making a decision (at least for today), to SAVOR the words of our amazing therapist - that Carson is 'pre-verbal'... that Carson is showing us that he is on his way to speaking words... to have hopes that one day, Carson will deliberately call me mama, to say he loves me, to tell me his needs, to tell me what brings him joy, for him to one day tell me that he has given his life to Jesus. 


Are you holding back from savoring this moment in life, because your past experience leads you to fear?

From Death to Hope

During the last trimester of my pregnancy, facing the reality that Carson was not expected to live long after birth, God brought to me some amazing music... some that brought me to my knees... some that gave me hope... some that helped me grieve.  God truly spoke to me through music.  I created a CD of those special songs and that CD played in the operating room during my c-section.  As I laid on the operating table, I just soaked in the music that God has blessed me with.  Thankfully Carson came out kicking, screaming and breathing - and has been growing and thriving these last 18 months.  That CD has remained very important to me.

Today God opened my eyes up to something marvelous... today I was packing mine and Carson's suitcases for our month-long trip to Ohio, to receive therapy at Sara's Garden.  As I was packing, I played my "Carson CD" and sang my heart out as I was packing.  I was stopped in my tracks as I realized I was playing the same music that I had been using to prepare my heart for Carson's potential death, and now I was listening to the music while preparing for a trip of HOPE.  

What a great reminder today of God's goodness - His provision - His blessing - His hope.

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For those of you that would like to partake in the musical goodness of Carson's CD, below are the songs!

• 'Healer' by Kari Jobe
• 'Attention' by Know Hope Collective
• 'Beautiful' by Kari Jobe
• 'Restless' by Audrey Assad
• 'You Are For Me' by Kari Jobe
• 'Be Still' by Kari Jobe
• 'You Deliver Me' by Selah
• 'Revelation Song' by Kari Jobe
• 'I Know You're There' by Casting Crowns
• 'My Beloved' by Kari Jobe

When the Answer is the Problem

Carson had a VP shunt put in right before he turned 3 months old, two days after Christmas, to help 'treat' his congenital hydrocephalus.  We have gone through so many ups and downs in regards to his shunt over these last 13 months... swelling around his valve because of the shunt placement, increased pressure in his brain and rapid head growth due to a shunt setting being to low, over-drainage of his ventricles causing the brain to pull away from the skull and causing bleeding around his brain.  Its been non-stop.  I think it would be impossible to count the number of MRI's Carson has had.  Carson has been exposed to so much radiation through CT scans and X-rays.... more radiation then I have ever had in my lifetime.


Every time we ride this roller coaster, we begin to feel that maybe surgery should be done to revise (replace) his shunt so that we don't battle with the ups and downs... the constant need to prepare ourselves, our schedules, our family life, our work schedules for surgery, just to have doctors change their minds... to constantly be wondering when Carson is cranky if it could be pressure building in his brain... to be constantly measuring his head for abnormal head growth.... to have to wonder how many surgeries he'll have in his lifetime because of his hydrocephalus.

So we desire surgery just to get an "answer" to the problem we are facing.  The issue is that a new shunt does not make the real problem, the hydrocephalus, go away.  With a new shunt and another surgery, we run the high risk of post-surgery infection, having the new shunt malfunction, over-drainage, increased pressure... a new shunt doesn't remove the risk, doesn't remove the worry, doesn't remove the issue....


The "answer" can quickly turn into just another "problem".....

Carson (few hours old)

So where do we go from here?  What do we do? How do we handle the constant ups and down?  I don't have those answers.


So what do I know?  I know is that God is good.  God loves my son.  God loves me and my family.  God has a plan and a purpose.  So....... as much as I want an "answer", right now I'll just have to continue to remind myself to fix my eyes on Him... the only true Answer to this crazy, overwhelming, discouraging, constantly scary situation.  Lord, when we are looking for an 'answer' to the roller coaster we ride, help us to look to you!


Are you looking for an answer in your life that might very well just be a potential problem?

"Faint-heart, what got into you?"

I barely slept last night.  The last two days, my eyes have been poofy, welling up with tears while I fight to hold it in.  I've felt beaten, overwhelmed, and very alone...

We received more diagnoses about Carson this week.  We found that he has scoliosis (curving of the spine) and a hip deformity that is common with cerebral palsy, and can lead to hip dysplasia (hip slipping out of the socket).  Both are "mild" at this point so we are not being referred to a Orthopedic specialist yet... yet... yet, not the most encouraging word sometimes.  There is nothing that can be done to fix what has occurred in his body... and nothing that can be done to "stop" it at this point... we are in yet another 'watch and wait' mode.  My heart and mind could not take in and process this new information well this week.  On top of this new information - we are struggling with making some major changes to his physical therapy program and are having to work through some other major issues which are difficult in themselves.

Its funny (figuratively speaking) how after a major 'valley' in my walk as a special needs mommy, I sometimes feel my faith so strong, that I am like Peter who says, "call me to come to you on the water."  I boldly step out of the boat, and walk towards the the Lord, even on top of rocky and crashing waves.  Then other times, such as this week, I find myself being distracted by the crashing waves, the darkness, the wind, the cold water - and I begin to sink and drown.  I struggle for awhile, going under the water, being crushed and tossed around by the waves and finally I see a small, blurry image of the Lord, standing on top of the water.  I finally say, with water spewing from my mouth, "Master, save me!"

And what does He do?  He doesn't hesitate. He reaches down and grabs my hand. Then He says, "Faint-heart, what got into you?"

Matthew 14:28-33 seems to be a picture of me... bold, courageous, then scared, overwhelmed and faint-hearted, leading to my crying out and being saved once again by my Protector.

What stands out to me when reading this passage is that God saves me, oh wait, Peter, by reaching out and pulling him up... he DOESN'T save him by stopping the storm and calming the waves (that doesn't happen until they are safely back in the boat).  So this week as I cry out, I realize that God pulls me out of the waves and the freezing waters, He doesn't stop the storm.  Jesus, thank you for not hesitating.  And thank you for the constant reminder of asking "Faint-heart, what got into you?"

Are you faint-hearted?  Do you need to call out to Him to save you without hesitation?

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Meanwhile, the boat was far out to sea when the wind came up against them and they were battered by the waves. At about four o'clock in the morning, Jesus came toward them walking on the water. They were scared out of their wits. "A ghost!" they said, crying out in terror.

But Jesus was quick to comfort them. "Courage, it's me. Don't be afraid."

Peter, suddenly bold, said, "Master, if it's really you, call me to come to you on the water."

He said, "Come ahead."

Jumping out of the boat, Peter walked on the water to Jesus. But when he looked down at the waves churning beneath his feet, he lost his nerve and started to sink. He cried, "Master, save me!"

Jesus didn't hesitate. He reached down and grabbed his hand. Then he said, "Faint-heart, what got into you?"

The two of them climbed into the boat, and the wind died down. The disciples in the boat, having watched the whole thing, worshiped Jesus, saying, "This is it! You are God's Son for sure!"

"Here is a baby with eyes of blue, straight from heaven, right to you." ~ Mr. Stork

I've been watching a lot of cartoon movies over the last 2 1/2 years..... one of the perks of having a toddler!

Recently I've watched two movies from the 40's and 60's that deal with a child that is different.... Rudolph the Red Nosed Reindeer (Adrianna's current favorite) and Dumbo both depict a sweet, innocent child that is "different".  Its been strange what emotions have brewed up from watching these movies.  A few specific things have stuck out in my mind....


#1. The children do not know that they are different, until the "adults" in their lives make them feel different.


#2. The parents go through extreme measures to protect their child from the cruelties of this world.  (Sadly in Rudolph, his father actually feeds the cruel measures a bit).


#3. In the end, these children show how truly amazing they are!!!

Its funny how I've watched both of these movies in the past but never truly "felt" anything while watching them... yes, we all feel bad for Dumbo; we all feel a bit sad for Rudolph... but it wasn't until having my precious boy who is "different" that I truly had a heart and an understanding for Dumbo, for Rudolph, and their families.  Its funny how a movie - even ones made out of clay and paint - and produced decades ago - can impact me today.


When I watch the endings of these two movies, and see Dumbo fly high in the sky and show himself to be a true entertainer - and to see Rudolph hitched to Santa's sleigh and lead Santa and the others reindeer - I am excited and hopeful to see what Carson is going to do - to see how God is going to use his "differences" to make a HUGE SPLASH!  Awesome!


And thank you Mr. Stork for saying it so eloquently... "Here is a baby with eyes of blue, straight from heaven, right to you."

Flat Road, Peaks, Valleys and all...

Peaks, valleys, and flat road... we walk them and we live them.  But what about when we seem to walk flat roads and peaks that seem to sit inside a valley?

Recently, well over the last 15 months of my life, it has felt like I've been living in a giant valley... one that has small peaks, flat portions, but are all in a giant valley.

As you may know, all the swelling issues we've had with Carson's shunt seem now resolved (hallelujah!).  AND his infantile spasms have not come back (hallelujah, hallelujah!).  Two very hard issues we were struggling through and now they are both "resolved".  What a relief!  What a blessing!  Two awesome peaks!!!!

A friend asked me, "now do you feel like you can breath?".  I told her yes, but the truth is no.  It seems like when we think things are evening out, that our path may actually be a "flat road", we find ourselves still in the valley... that those flat roads of "normalcy" are just flat roads inside the valley.

Right now we are facing a new challenge, a new low valley point... Carson's head shape is very long, narrow and crooked (many reasons that have contributed to it) but a few months ago, we learned a new big and scary word - Craniosynostosis.  What is Craniosynostosis (other than a word that is very hard to pronounce)? In an infant, the skull is not a solid piece of bone, but several boney plates separated by fibrous sutures. These sutures allow the skull to expand as the brain grows, and will eventually fuse to form a solid skull. Craniosynostosis is a condition in which one or more of these sutures fuse prematurely, causing restricted skull and brain growth.  Carson's particular craniosynostosis is of the sagittal suture.  It is the bone line/suture that runs from the front of the head, to the back.

The most common treatment is surgery performed by a neurosurgeon and craniofacial surgeon. There are three goals in surgery; open up the fused sutures to allow room for normal skull and brain growth, relieve any pressure that may be on the brain, and give the head a more normal appearance.

Because of Carson's VP shunt for his hydrocephalus, the surgeons did not feel Carson's protruding forehead was "bad enough" to warranty surgery (the hydrocephalus causes added surgical concerns).  So we decided to just watch and wait.

Over the last month, we have noted noticeable changes to his head shape, cheek, forehead and ear placement.  We have an appointment with both Neurosurgery and Craniofacial in October.  I am very eager for this appointment!

I am really struggling with this... I feel very low in a valley...

I keep asking myself WHY does this issue feel different then all the others that we've gone through.  I have come to this conclusion: because it's External.  I realize that all of Carson's other issues are internal - inside his brain and body... inside places that we cannot see without fancy EEG machines, MRIs, and CTs.   My sweet husband keeps reminding me that no matter how overwhelmed, sad or antsy I feel - nothing it going to change the situation right now.  He is encouraging me to just breath and release - and then meet with the Doctors in a few weeks and go from there.

So...... in the valley I seem to remain.

But, even in the valley, I also feel like I'm on a huge peak!  Probably the largest peak in this valley... Carson is turning 1 YEAR OLD in 8 days!!!  I cannot believe it!  Where did a year go?  How has it only been a year?  How amazing and awesome is my son?!?!

Wow.  So for now, I am going to enjoy this peak amongst the valley... and praying that someday I'll see the flat road and the peaks outside the valley again.  God is faithful.  God is constant. God seems to continually hold my hand, flat road, peaks, valleys and all.

I look up to the mountains; does my strength come from mountains? No, my strength comes from God, who made heaven, and earth, and mountains.

Psalm 121:1-2

As I sink in despair, my spirit ebbing away, you know how I'm feeling.  Know the danger I'm in, the traps hidden in my path. Look right, look left— there's not a soul who cares what happens!  I'm up against it, with no exit— bereft, left alone. I cry out, God, call out:  'You're my last chance, my only hope for life!' Oh listen, please listen;  I've never been this low. Rescue me from those who are hunting me down; I'm no match for them. Get me out of this dungeon so I can thank you in public. Your people will form a circle around me and you'll bring me showers of blessing!"

Psalm 142:5-7