Team Owen - Running for Riley

You are invited to join "Team Owen" as we raise money for our beloved Riley Hospital in conjunction with the Fort4Fitness Race.

Whether you're running, walking, watching or just want to be part of the team cheering from afar, we'd love for you to join us!

Here's the deal. 

For those of you who don't know our story.  We found out when Jen was 25 weeks pregnant that our unborn son had Spina Bifida (a neural tube defect where the spinal column does not completely close and the spinal cord protrudes from the back), Hydrocephalus (excess fluid on the brain), and a Cleft Lip & Palate. 

The specialist we saw prenatally told us that because he saw multiple birth defects our baby likely had a chromosomal abnormality and would not survive.  He gave Owen a 50/50 chance to be born alive. The 

doctor added that if his chromosomes were fine and he took his first breath that our son would "NEVER walk," "NEVER be normal," "Have NO quality of life whatsoever."   We knew he could be right, but we also believed NEVER was a pretty strong word to be using so early in the game.  

Indeed, Owen's chromosomes were perfectly fine.  We welcomed him into the world at Riley Hospital January 26, 2007 surrounded by family, friends and thousands of prayers!  

Ever since day one Owen has been defying that doctor's bleak predictions. We trusted that God had a plan for our son NO MATTER WHAT the outcome.  It has been nearly 8 years since our world was turned upside down with Owen's initial diagnosis.  What a journey it has been!   

Owen has had 26 surgeries at Riley Hospital.  14 of those in his first 13 months of life.  Riley has become our second home.  We have made over 100 trips for appointments, tests, surgeries, etc.  There are no words to describe what Riley has meant to our family.  Most of all they love Owen and help him to just be a kid!

Owen is a very typical 7 year old boy.  He loves Legos, Transformers, Angry Birds, Star Wars, reading books, drawing pictures, and playing outside.  Owen has always had a determined spirit.  He always finds a way to do what he wants to do.  This summer we found out Owen absolutely LOVES tubing behind "Uncle Mark's motor boat,"  and "zooming down big [water] slides!"

We've had many opportunities here and there to give back to Riley.  Most recently participating in filming for a TV commercial (coming to a TV near you!)  But this Fall we wanted to do something really special to help other kids like Owen at Riley.  That is why we formed Team Owen.

Our entire family is participating in the Fort4Fitness this year.  Liam, Kate, Owen, Zane and Evie are all signed up and training for the 1-mile kid race held Friday, September 26 at 6:30.  Eric and Jen will be running the 10K the following morning.

We are hopeful that Owen will be able to complete the mile one way or another. (We may have the stroller sag wagon following along! Crossing that finish line will be a big accomplishment for him.

You can join Team Owen by buying a t-shirt and making a donation to Riley Hospital.

"Rouine Appointment?"

A friend asked me that question when I told her we were at Riley. 

"Well, they often start out that way!" was my reply.  

All buckled up and ready to go, bright and early.  Riley the dog is buckled up too.

Monday was Owen's yearly Craniofacial Clinic day.  A day full of appointments when we get to see all the doctors that he sees in regard to his cleft lip and palate. 

We saw the Plastic Surgeon, Oral Surgeon, Speech, and Audiology. This year I had 2 specific requests—that we see Dentistry and ENT. 

Dentist Issues

Because of Owen's SPD (Sensory Processing Disorder), going to the dentist has become increasingly awful.  I was frustrated with the Pediatric Dentist we see up here in Fort Wayne when they seemed to  understand what I was saying about his special needs but chose to ignore it completely during the exam.  

Our family dentist is very open to me trying to bring Owen to the office where the rest of us get our care.  It meant so much to me that they were understanding and willing to do what they could to help Owen survive a dental visit.

You see, sensory-wise, going to the dentist is the absolute worst.  Bright lights, weird noises & smells, tools and pastes and all kinds of textures IN YOUR MOUTH!  

I believe with a careful approach Owen could have little successes at tolerating a teeth cleaning.  I asked his Pediatric Dentist to approach him as if he were a brand new 2 or 3 year old patient. Introducing each step and each instrument.  Allowing him to investigate it and get comfortable with it.  But, no.  There was none of that.  Only pushing through the appointment which resulted in Owen kicking, screaming, flailing and biting the dentist.  And ended in us having to hold him down to just get it over with it.  NOT OKAY.  Not on a kid with medical trauma.  Not on a kid with sensory issues.  Not on a kid who has oral defensiveness tendencies due to his cleft lip and palate.  Not on a kid who really needs to not hate the dentist because he has YEARS of dental work ahead of him.

So done with that.

I was open to trying our luck with our family dentist, but the Developmental Doc at Riley that we saw in July suggested I consider getting his dental care at Riley because they are used to kids with sensory issues and have other options, like sedation, when necessary.  

Hence my request to see a Dentist this year at Clinic.  And I will say that to her credit she took the time to hear me out, validate my concerns, and explain her experience and plan for this type of issue. 

I suppose it is yet to be seen how this will go, but I think this is the route we are going to take. She suggested that each time we are at Riley for any reason that we should come up to the Dental Clinic for a "Happy Visit", just to familiarize Owen with the space and the sounds etc.  

They also have lots of options available, like doing a dental cleaning while he's under in the OR for some other unrelated procedure.  We are totally taking her up on that one!  Genius!

ENT

The ENT (Ear Nose and Throat Doctor) that Owen had at birth retired shortly after Owen turned 2.  The next ENT we had down there moved to a different hospital at some point.  I honestly can't remember when.  It was probably in the middle of a lot of Tethered Cord and Bowel and Bladder concerns and fell off my radar.

Owen had ear tubes placed at 10 months old, which promptly fell out.  The doc put in "permanent" T-tubes when Owen was 14 months old. These have been in ever since.  

I remember our doctor telling me they would need to be surgically removed someday, but I do not recall WHEN he said that should happen. 

In the grand scheme of things I deal with with Owen's medical care, ear tubes were the least of my worries.  I didn't give it much thought.  I get his ear drops for infections from his local pediatrician and we carry on as normal.

Recently I've realized that the only ear infections he gets are due to water getting into his ear via the tubes—like in the bath or pool.  Even with ear plugs this seems to happen more often than I'd like.  

So I requested to see an ENT.

And this is what he said:  "T-tubes should stay in no longer than 2 years. 4 at the most."

"Oh, great!  So you mean 7 1/2 years might be a problem?!"

He wants to remove them ASAP.   He tried in office, but they were stuck. This means day-surgery.  I asked if we could hold off until another surgery and piggy-back it.   I mean if you've waited 7 1/2 years what's a few more months?

He was not comfortable with that.  

"Convince me. I get that every doctor thinks their thing is important, but I have to look at the whole picture here.  This would be surgery #30."

He explained that the danger of having tubes in that long is something called "cholesteatoma".  (Yes, I learned yet another new word.) It is basically a skin cyst that grows in the middle ear.  It is not cancerous, but can errode the bone and delicate tissues of the ear causing hearing loss.  He won't know if this has occurred for sure in Owen yet until he gets in there.

"Grrrrr-eat,."

Convinced.

Scheduled day surgery for November 17.  

BUT  it could get postponed...

IF surgery #31 is scheduled after his Orthodontist appointment November 9.

Orthodontics & Oral Surgery

The Oral Surgeon Owen had since birth, Dr. Heidelmann retired and his "understudy" took over.  She is really nice.  And young. Which is weird.

She is concerned about Owen's bone graft on the Right Graft of his Gum Cleft.  Has not remained as stable as the Left Graft.  Possibly due to how his teeth have come in and many other factors.  

It's a mess in there.  What can I say.

Soooo... she wants to do a Secondary Bone Graft.  

Sooner rather than later.   

Good times.

The deciding factor on timing will be an x-ray (CBT) he'll have November 9th at his preliminary Orthodontic appointment.

I look for this too be happening soon.

Orthodontics

And so it begins.

I had a similar discussion with this new doctor as I had with the Dentist about his sensory issues.   She understandably wants to "see how he does" with his first appointment rather than just jumping to anesthesia exposure.  I'm good with that, but let's just say... i don't have high hopes for this going well.  

Jaw Surgery

Oh, I almost forgot... The Oral Surgeon and Orthodontist both explained that Owen will likely need jaw surgery to retract (is that the right word?) his upper jaw (bring it forward and widen it).  

Oh boy, that will not be fun.  

This surgery will happen before his teens, but not anytime soon I hope.  I think they need to do a little orthodontic work and get some teeth moved around a little before they do it.  

The Rest of Clinic

The rest of Clinic was pretty uneventful.  

One of our favorite nurses.  Owen has seen Luann in two clinics since birth. Love her. 

Our new Plastic Surgeon.  He's French.

Plastics - doesn't need to see him for 2 years.  Our new doc was very impressed with Dr. Havlik's work on Owen's palate and lip.  Truly amazing that he hasn't had a fistula (opening) occur.   [Oh, except that with all this orthodontic and jaw work one might develop.  Aweseome]

Audiology - hearing checked out great

Speech - still great on the word level, but when he gets talking too fast (especially to an "unfamiliar listener") he is difficult to understand.  Still working on slowing down and enunciating.  Some of this will resolve with time as he learns the situations where he needs to focus more on how he's speaking.

In Other News

Therapy - I am still trying to get to the bottom of the behavioral issues Owen is experiencing.  We have an Eval scheduled for October 21 in Kokomo through Owen's therapy place, HopeBridge.  Hoping this gives us some insight and a direction to go.

Urology - The day after Owen's tentative ear tube removal (Nov 17) we have another appointment at Riley with Nephrology and Urology.  We've never seen Nephrology before.  Looking forward to learning more new words. Not.  This appointment will hopefully shed some light on the reasons why Owen is developing so many bladder stones.  

We did a 24 hour urine collection a few weeks ago and sent it off to Chicago for testing.  He'll have a RUS (renal ultrasound) and KUB (x-ray) that day as well.  

Playing Minecraft in Kid Zone after a morning full of appointments made his day.

Please Pray

Thanks as always for caring about our little guy.

Please continue to pray for wisdom as we deal with his complex medical needs.  As difficult as those early years full of surgeries and therapies and appointments were, these recent years of unknowns and new unexpected challenges are really wearing on us, if I'm honest.  Our whole family feels it.  Please pray that God continues to give us grace when we fall short as parents.  And grace for our other kids. That they will continue to live with their brother in an understanding way and not let their hearts get hardened by bitterness.   Pray for Owen too.  I think he is really struggling with understanding what's happening to him and why things are so hard for him at every turn.  He doesn't have the expressive language yet to help him process it.  

Some days are better than others.  I soak up the good days when they come and God sustains us again and again through the hard days.

"Surely God is my help; the Lord is the one who sustains me." Psalm 54:4

Spina Bifida Clinic 8 years old

Full of surprises

I truly expected this yearly appointment to be fairly uneventful.  I had some things I wanted to discuss, but I did not anticipate any big things coming up.

The routine renal ultrasound before clinic turned out to be more than just an ultrasound.  There was also an order for a KUB (abdominal x-ray) and a blood draw.   After verifying with the clinic staff why exactly those were ordered, we went back to radiology and had the tests.   The blood draw went better than it could have.  My Owen is getting strong.  It took two of us to hold him still.  I hate holding him down for stuff.  They got a vein on the first try, so it was over pretty quickly!

At clinic, the first doc we saw was the Urology NP.  She showed me this x-ray.

and I knew.

Bladder stones.

NP thought 8.  I counted 9.  Doc says 10.

total shock.  I did NOT see this one coming.

He had 1-2 removed in January of 2014.  That was a year and a half ago.  And since that time, we have irrigated his bladder nearly EVERY cath to prevent this very thing from reoccurring so soon!

They recommended we irrigate 2 times each day.  We decided to do 4.  That's how much we didn't want to see another stone.

[Owen has an Augmented Bladder (where they doubled the capacity of his bladder by using intestinal tissue). Intestines produce mucus.  That's what they do.  Now intestine is lining half of his bladder.  Because of this he has lots of mucus in his bladder.  And any foreign matter in a bladder can begin to calcify and form a stone.] 

I just didn't expect 10.

I don't think Dr. Kaefer did either.

It's not like he didn't believe me when I told him we irrigate 4 times a day probably 95% of the time.  But I could tell that clinically he was having a hard time reconciling those two facts.

Surgery #29 here we come.

It is scheduled for Monday, August 10th, at 8:45am. At IU West in Indy, because that was Dr. Kaefer's earliest opening.

Please pray:

• that the doctor is able to use the most minimally invasive procedure to completely remove all the stones.
• for Owen and I as we navigate an unfamiliar place tomorrow.  I can't tell you what a comfort the familiarity of Riley is to me (and him).  I will miss that tomorrow I am sure.
• for a good attitude from Owen tomorrow.
• traveling mercies.

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Neuro Surgery 

nothing.

glorious.

check.

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Developmental Peds - the appointment where I seemingly disagree with all the assessments.  

As big as yet another surgery would seem, it wasn't really the thing that rocked my world last week. 

The Developmental Peds NP  had lots of concerns.

his weight

his height

his behaviors

Weight/Height

Owen is the size of a 5 year old at age 8 1/2.  He weighs 1 lb more than Evie (age 4), and is only a few inches taller.  He is 10 inches shorter than Zane (age 6).

He has hit a plateau on his curve.

The doc really pushed the high-calorie foods again and wanted me to put him on daily Carnation Breakfast.  I asked how exactly that was going to stimulate growth in height?  I reminded her how we had worked so hard in feeding therapy to get off the Pediasure, and to enlarge his food repertoire.  I feel like Carnation would not solve the problem.  He is eating just as much as my other kids and at times more.   Plus all the added sugar in those, how could this be a good solution?

We discussed it a while and she said she "could see I had really thought this out." and I didn't have to do it if we didn't want to.  I did concede I'd give Whole Milk all three meals instead of just two.  

She wanted to do blood work, but missed the boat on that one for the day since we had it done already.  

I am very concerned about his size, however, and plan to pursue this further.  Possibly doing blood work, a bone density scan, etc. 

Behaviors

As I described some of the difficulties we've been having with Owen in regard to his "quirks" and inappropriate behaviors, she wanted to test him for Autism.  I flat out told her I did not think it was Autism, but more the Sensory Processing Disorder that he already has a Dx for.

Next she suggested it might be ADD.  I politely said I believed what she was seeing was also more a reflection of the SPD than ADD.  I have read that many times kids get misdiagnosed with ADD or ADHD when it is really a sensory issue at root.

She let both of those slide.  Possibly Definitely giving me the "mom's not ready to hear this yet I guess" look. 

Then she suggested Owen would benefit from ABA Therapy.  (Applied Behavioral Analysis.)  It is intensive therapy that works to teach new behaviors with positive reinforcement.  When it comes to issues caused by underlying medical causes it becomes more difficult than it would seem.  I had heard great things about ABA and was willing to take a script for that.  

I'll write more about ABA when I have a chance.  It is a lot more involved than I first understood.  Some big decisions lie ahead for us on that front.

But desperate for options, I began looking into ABA as a possibility.

There was a lot of grieving involved in putting my toe in the water, so to speak, of yet another new world of terms and acronyms.  I toured a therapy center last week and that was really hard.  Super overwhelming.

As I left the parking lot of the therapy place I made the choice to see all of it as God's Provision.  Not a big mountain of dread, or an unbearable thing, but an offer of hope.  Hope for the future.

I also got some good leads from our current therapy center for OT, Hopebridge.

As always we are willing to do what it takes to help Owen be the best Owen he can be. Functional adult.  That is a big goal.  Keeping that long term view is key for us as we contemplate our next steps.

More on this later, but please pray for wisdom for us. 

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That's all for now.  I'll keep you posted on surgery tomorrow.

Today Owen asked me why he had to get dressed and wear his braces every day. I answered my usual, "So you can walk and do what you want to do." "But the other kids can walk in their pajamas. I wish I didn't have to wear braces." sigh. I do too buddy. He's just starting to pick up on how he's different. I told him I don't like braces either some days, but I am so thankful that he has braces to help him play and get around. Braces, walkers, crutches, wheelchairs, come what may ... just tools to enable mobility & independence. I see it that way, but how oh how do you help your 8 year old understand? We also talked about how kids in many countries around the world don't have access to braces or walkers or crutches or wheelchairs and they can't always do the things they want to do or even go out of their houses. Owen in his innocence said, "Well, they should just buy some at the brace shop." Oh, if only it were that simple. So thankful for projects like the one our friends helped start in Tajikistan to help kids like Owen gain mobility. Even on days when I hate those crazy expensive pieces of plastic that are attached to my son most of his waking hours, I am grateful for the opportunity to have them. What a day and age we live in! Yet it is not available to all.

Getting the cast off

6 weeks Owen has worn his green cast.

Yesterday we got it taken off and had our first look at his foot.

I was so proud of him.  He didn't cry at all when they cut off the cast.

As soon as he saw his foot he completely flipped.

He did not like that it was "dirty" with dead skin and surgery gunk.

 Even though had told him there would be a button (which literally was a button) on the bottom of his foot, neither of us were prepared for what it would actually look like. 

Pretty nasty.

(The button held the transferred tendon on the top of his foot in place as it healed.)

My initial thoughts when I saw his foot were that in some ways it looked better than expected, though I was concerned with the redness and what might lay beneath the button and pad. 

Thankfully the only sores were where the two sutures for the button were.  2 little holes about the diameter of a pencil that are healing up nicely so far.

He wanted that button off!

Pronto!

Dr. Kishan had him lie down so he wouldn't watch.  I had a heck of a time keeping him lying down.

Boy you should have seen the faces of my other kids though!  I had to remind them several times that Owen couldn't feel it.  Dr. Kishan told Owen to tell him when the button was off.  Owen had no idea that the doctor had already removed it. Crazy that he can't feel a thick string being removed from the inside of his foot.

Owen was adamant we get his foot cleaned up before we put on his braces.  It took me about 20 minutes to wipe off the big pieces of skin and gunk.  Again, I was amazed it didn't hurt him.  Once cleaned up he was much calmer and ready to put on his sock and brace.

It was amazing to see the incisions were completely healed.  He has a few small ones and a longer one on top of his foot.

Here is a little interview of Owen after the fact.  

All ready to go back to the Kid Zone!

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Here are a few pics of us in the new Riley Kid Zone. 

We went before and after the appointment.

Crafts and Xbox

The kids could have stayed there all day.

Heat sensitive ottoman.

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Here's what his foot looked like after a bath last night.

The redness makes me nervous.  Watching it carefully.

 (forgot to take a pic of the holes before the bandaid.)

 long incision - tendon transfer

Heel-cord release incision

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There was a main hallway blocked off at Riley this time and it meant that we traversed the hospital—the longest way possible—4 times in one day!  the 4th and final time because Owen lost his black Riley water bottle and we retraced our steps.  Never did find it.

Here's a pic of the kids in front of the huge Christmas tree in the lobby.

Thanks for praying for Owen!  I am much relieved that his foot is in as good of shape as it is.

It is nice and flat and supple.   

Please pray with me that the redness goes away and is not an infection.

_______

Ear Infection

Owen also has an ear infection.  Tuesday morning at 1:30 Zane came down to tell me Owen was crying.  Sure enough... yellow pus pouring out of his ear.  His cold had become an ear infection. 

Poor buddy, he was in a lot of pain.  Tylenol, ear drops, cuddles on the couch with mom because he was crying so much. It really hurt.  Owen would cry til he wore himself out and fell asleep, only to be up again in a few minutes crying in pain.   I was up pretty much from 1:30 til 4:00am with him.   Not good for the morning of a Riley trip.  

Finally at 4:00, in an effort to distract him from the pain so he'd quiet down, I gave him the ipad.  I got some sleep, but I think he played it for 4 straight hours.

Called PCP and got a script for more drops called in since the bottle I was using would not last a full week.

Seems to be under control now.  

He HATES the ear drops though.  

Owen slept in the van, and I was not as tired as I should have been.

_____

 Mommy and Daddy sick

Then this morning Eric and I both woke up with achy, sore throat, head colds.  Fun.

Eric stayed home from work, and we tag teamed the kids.  I managed to take Owen to 2 therapies and stopped into Midwest to get his braces adjusted so he could walk at Awana tonight.

Crazy 2 days.

Thankful for DayQuill.

_____

Thankful

Thankful for our family

our church family

our SB family - near and far

Thankful for no deep pressure sores!

Thankful Owen was so brave.

Thankful he seems to be healing nicely.

Thank You!

Thanks to all our friends and family who bought shirts, donated money and supported the kids as they ran 1 mile for Riley at the Fort4Fitness in September!

Yesterday we finally had our chance to meet with the Riley Foundation folks and have  a little photo shoot with our sign!  $1010 was the final total we raised for Riley!  The Foundation presented the kids with Team Riley shirts for raising over $1000.

And one silly shot, per Owen's request.

How it's going

This is a quick update on Owen's foot surgery and then I share my heart about one of our biggest struggles right now.   Remember, I will stop using caringbridge soon.  If you want to receive notifications please sign up for notifications by clicking "follow by email" in the right sidebar.  

The Cast
17 days to go until Owen gets his cast off.  So far so good.   

Other than the small it's beginning to emanate, life has gone on as normal for the most part.  It has not slowed him down much.  He even jumped in the bounce house at fall festival just 2 days after surgery!  (hey, doc said he had no restrictions!)     Owen has opted out of a few activities at our homeschool gym class coop, but has ben able to do most of it!  

I am going to call on Monday though, because he keeps saying his "legs hurt".  Which of course sends my red flags up.  But he never indicates it's his foot, but rather the front of both his legs.   So I don't know what to make of that.  Been a week of him complaining so I'll probably call.  Usually when I finally call he quits complaining and the docs think I'm crazy.  little booger. we'll see.  

Sensory Processing - "Sometimes mommies don't want to get messy either"

I have not mentioned on here much about Owen's sensory issues.  He has started getting occupational therapy about a month and a half ago to help.  Our Dev. Ped. doc at Riley suggested it this summer.  Since Owen is not in school, we are not too worried about getting an official diagnosis of "Sensory Processing Disorder" on his records, but nonetheless, there it is.

I've been very happy with his new therapy facility, Hope Bridge, and his therapist, Karen.  They don't let Owen weasel out of work and have given me lots of ideas and tools for dealing with things at home.  They don't think I'm crazy and are knowledgeably developing a plan to help us!  I am so relieved.  I don't think I realized that it was legitimately something we could not figure out on our own!

One aspect of Owen's sensory issues that makes me particularly crazy is that he can go from sensory seeking to hyper-sensative very quickly.  Something that he enjoyed yesterday, is too much today.  One minute he wants to squeeze you to death, tickle and kiss and the next he completely freaks out at the slightest touch. 

Sometimes he has the ipad blaring loud and other times simple noises like a running faucet are "too loud" and he's completely freaking out, plugging his ears.  Some weeks he does great at Awana or sunday school, some weeks he is completely overwhelmed.  

One day he wants to hug grandparents, the next time he won't even fist bump.  It can be extremely frustrating.  And honestly, it makes me feel like I'm going crazy.  I never know what to expect day to day, hour to hour.  If only it were just over-sensative or just sensory seeking!  why swing to both?!  learning how to regulate is our new goal!

For me this experience has been a process of learning that this is not all behavior-based.  I am learning how to help him cope with his sensory level appropriately in social situations.  Trying to understand his triggers, how best to prep him, how to recognize issues before they happen and how to deal with them when they do is so hard.  Some of the ways we were dealing with his behaviors probably weren't helping, possibly making it worse.  awesome. 

A lot of how we're learning to help him goes agains every "good parenting" bone in my body.   

I am learning to care less about what people think in the short term about me or my son's behavior and focus more on how to get him through this.  I am determined that we can find ways to help him work around these issues and learn how to effectively deal with it. I know he has the potential to be a functioning, caring adult.  Keeping that long-view goal keeps me going.

We've also been learning a lot about the affects of trauma early in life and are seeing a lot of those as well.  Learning to help him grow in trust and feel secure is a higher priority for us now.  I have been grieving about this actually.  And struggling with the fact that his "trauma" is not over.  What if the source of trauma will  keep on happening?  How can we help him not be traumatized?  I know we've always done the best we could.  I am learning to accept that I can't control how a neuro-senative child reacts to the world around him.  There are so many factors involved.  It feels like we're beginning to put the pieces of the puzzle together.  It is slow going. 

He's not just going to "grow out of it".  We need to help him through it.

So thanks for your patience and your understanding.  When I'm giving choices to a seemingly defiant child, please know it is harder than you know.  

When my 8 year old screams uncontrollably because he barely bumped his head and carries on and on... and on, and I actually comfort him instead of telling him "dust yourself off" like I would my other kids, please understand it's hard.  

When you hear me tell my 8 year old that he doesn't have to eat the vegetables I put on his plate, but ask him to at least touch them and smell them and maybe lick them... then in the next sentence hear me tell my other child to eat his vegetables, please don't see a double standard... you have no idea that it's a huge step that he did not panic because I put them ON his plate. 

When my sweet son recoils from your high five or hair tussle, please know I'm as caught off guard as you because those same actions were received fine yesterday.  Please love him anyway.  I believe there will be a day he is able to respond appropriately.  We are struggling to understand his world so we can help him navigate it.   And it's hard.

I have tears as I right this.  I have new compassion for parents of autistic children and for all parents struggling with difficult children.  It is easy to take their behavior personally, to feel embarrassed and guilty and judged.  I am learning to grow a thick skin and focus on this huge task at hand.

A few months ago when the doctor pushed us to begin this journey of understanding the sensory world I bulked.  I did not want to learn about one. more. thing.  

I've learned about the spine, shunts, bladders, bowels, kidneys, cathing, stomas, cleft palates, teeth, bone grafts, feeding tubes, ear tubes, Chiari, tethered cord, syrinx, intracranial pressures, clubbed feet, bracing, walkers, wheelchairs, speech development, PT, OT, executive function, non-verbal learning disabilities, MRI's, CAT scans, ultrasounds, miralax, ditropan, acidophilus, feeding therapy, neurosurgery, plastic surgery, urology, orthopedics, and all the vocabulary that goes with them ...  and I selfishly wanted to be done.  

I don't think my brain can hold one. more. thing.

Sometimes mommies don't want to get messy either.

I was scared, frankly.

What if THIS was too much?  what if this thing was too big for me to handle?

You know what?

It is.

Here we are, wading up to our necks in the muck that is figuring out your child's sensory needs, and I can't do it.

Truth is, I haven't been the one "handling" any of the journey we've been on with Owen.  Without Christ's strength and GRACE I know we never could have made it this far.  So this new, all-of-life-encompassing obstacle that I didn't ask for has become yet another opportunity for me to learn to TRUST my Savior. and to live moment by moment dependent on Him and not my own strength or wisdom.   

He has been faithful before, He will be faithful again.

Speaking this truth to myself.