Tuesday, June 30, 2015

A new label

It's been an intense year to say the least.  With work and raising three sons and supporting my husband and trying to help my youngest to relearn his language skills, we finally came to the conclusion there might be more going on with Simon.

You see, I had been telling my sons doctor of my concerns for months now....so many honest talks about his different way of showing affection, playing. Every time, my concerns were heard and graciously listened to but then I inevitably heard 'C'mon...what are you afraid of?  Autism?  Simon is NOT Autistic....don't worry about."

It felt good to hear him say that.  I remember buckling Simon into his car seat and telling myself, 'Jess just relax...he'll be fine!'

Then month after month and we noticed regression in his language until every word he had ever spoken was gone.  I had no idea the devastation of looking at him hold a ball after saying 'ball' a million times to no longer being able to say it.  

It was time to talk to a few different doctors....knowledgeable friends...our amazing school district and face some hard truth.  In fact, my fear way back in that doctor office was in fact what was up.


I wasn't so much afraid of that as I'd been suspecting it for a while but wow.  It was agony to sit in a room with a 28-page packet on my lap looking at the tests my son could not pass and read the paragraphs some stranger wrote about how my son interacts.  Differently.  I remember they kept saying 'Do you have any questions about this diagnosis?'  And all I could do was sob and feel my face swell with grief and look to see the same on my husbands.  It was like death.  Not of a child but of the 'typical' expectations you have when you deliver a baby.  Perhaps all would work out to be as close to typical...but in that moment, life changed a lot.

There we were - joining this group of families that exist around the world who do life a little differently....who have challenges many others do not and it hurt.  It hurt to feel different.  I thought immediately to all my worst fears - would he ever play a sport? Would he ever have a girlfriend? Could he ever live on his own? Would he ever tell me he loves me?  It was such a dark day and dark week....to be honest, its still a little dark in here.

I relished times with him more, however, watching him play....babble...give hugs to his brothers or pet our new pup on her head.  In a way, this new label, made me fall in love with him again...made me realize how lucky I got to be to be the one who takes charge of his education and learning while still loving him to bits.

I could tell people in my life were praying for me - many friends reached out to show support and our parents have been so wonderful and understanding of where we are at and what we need.

Things have been lining up for Simon - finally got our insurance to cover additional speech therapy....got him in an excellent school program due to start in August and am feeling the hope of God fill my heart.  This boy - who I love more than anything - is going to do well with the love and support of his family and these incredible medical professionals all around him.

The best advice I've gotten was from a friend who 100% understands where I'm at.  It was simply: 'He's still your same Simon and always will be.'

I hope you will agree to pray for my sweet boy.  He's just turned 3.  We're doing 90-120min of speech therapy per week and we're starting ABA therapy (DIY/Mom version at home) as insurance will not cover it and I don't have an extra $5K/month to pay for it....we are also beginning him on the PECS communication system to help give Simon a voice until those words begin to form and I truly believe they will.

I was fearful to share this out loud - not because of shame - but because people can sometimes unknowingly say hurtful things when you are walking through something like this.  ('He doesn't even look autistic!' etc.) But, the truth is - its not just Simon who needs extra help to get him to his next goal.  So do we.  So do my older boys.  Our quality of life hasn't fluctuated too much since the diagnosis but we also want to protect everyone in the process.  We are trying to not talk 'autism' and therapy too much.  We're trying to get out of the house and laugh....go for walks...catch lightning bugs.

Our little boy is honestly a breeze of a child to raise.  He doesn't throw tantrums or fuss much at all.  He transitions beautifully from one activity to the next.  We're really just praying all the little pathways in his brain come together and we can hear those sweet words come out again.  Thanks for reading this and for praying.

All our love and xoxo,

Joel, Jess, Jude, Leland and Simon

Monday, January 5, 2015

{choosing} to encourage my own heart

Oh this little bloggy blog.

I haven't touched it in a year and while I am perfectly ok with all the true and realistic reasons as to why -  I was so motivated to write this morning.  Not because of what anyone will think or say but simply because I need to channel the Jessica a few years ahead of me.  The one who will tell me 'Hey you're going to get through this season....and you'll look back and see it when you get to where I am now."

I told this very thing to Joel last night.  Thinking back to that girl who wanted and ached to be pregnant a second time and watched that little firstborn play all on his own, with guilty little demons plaguing me. Here I am now - after giving him siblings.  Those worries are the furthest from my mind.

I swear life is simply a series of hurdles...in a race that we must choose to enjoy.  Or rather enjoy who we race beside as there will be so many times when it will seem pointless. Like lets just bail and go to brunch.  (thoughts I had several times during my actual race)

Just wrapped up Simon's umpteenth speech therapy visit - I loved that his therapist took notes and clapped at his imitation and his improved eye contact. I love that she got so many hugs from him and he said, 'Huggggg!' like a million times....and I loved that he's listening to her and really trying to do what she is asking of him.  Honestly, though, I just want to talk to my little boy already.  I want to hear him say 'Mama Juice' or even yell at his brothers.  I don't know why we're not moving through this as fast as I'd like to but it's just such slow progress.  I don't do well with slow progress.  I'm a list check-er-offer....I set the timer for 60 minutes once a day and do a mad dash clean.  I like to 'get it done' and to be in control.  Perhaps Simon's life was preserved through all hes been through to teach us just that....being in control doesn't even truly exist.  I'm trying to remember who is and that I'm safer with Him at the helm.

I encourage my own heart in writing this that hes come so far.  From the 9lb 3 month old who I felt utter and complete failure over as his Mom.  I mean, here we are, he is 40lbs and eating food like its his favorite past time (which it very well may be)  That hurdle was a tough one - and we made it. 

I share this to write it out - perhaps one day I'll revisit it and remember how hard this was amidst Simon talking my ear off.  I keep imagining it happening and hear and seeing him thrive in his little life.  For now I'm trying to keep up the work our therapist has for us to do.  I'm covering him in healing essential oils....praying for him....and reading to him.  Joel sings to him and plays guitar with him...and his brothers play and protect and tickle him.  If there is one thing I am so certain of in Simons little two and half years of life, it is he so well loved.  He is so protected by his entire family and his thanks to us for all that comes in the form of his smile, his hugs and one day....his words. 

Keep him in your prayers {I know MANY of you do already} but it would do my heart so good to know he is prayed for and lifted up by any and all who might read this.   Will end it here.  He wants to eat again.  <3 br="">


Friday, February 28, 2014

a moment

Why is it so easy to fall into frustration over the normal?  Had one of those moments late in the afternoon yesterday.

Felt like I was just so done cleaning the same thing I clean three times each day....seeing to-do items on my list go un-checked....car issues arise at the always worst times....our old washer/dryer are baaaarely doing their job....blah blah....

We've been hoping to put our house up for sale  - to move closer to the city - for a while now.  It's just seemed like such a difficult transition.  How do we get this house prepped when we already feel like we're unable to get normal life done? How do you paint all the trim when you live with little messy mini human beings?  Not to mention the prep for 'showings' and keeping a constant clean house.

After a frustrating evening...a baby who preferred to mash his meatballs into the table instead of his mouth, I decided to go for a run.  I ran and I ran....and I ran.  It was as if each mile, more and more of the stress about what I can and cannot do began to disappear.

I walked off the track, feeling good & accomplished.  So much yet to be completed at home but what I had just completed was for me and it was the right thing.  I pulled in my driveway and saw my husband working late....working hard....and then I got out of the car and heard a noise from above.

Instantly, I teared up as I watched a helicopter fly from our nearby hospital heading towards the city (presumably the main Cleveland Clinic campus) and I remembered our horrible moment.  The one where our baby was in that helicopter.  I closed my eyes and realized how blessed I was to have marinara to scrub off the floor...his clothing to wash...his sippy cups to fill over and over again.  Told God 'I'm sorry' for being so frustrated about the normal....and asked Him to help me get it done with His grace.

Woke up to a 4yr old who wanted to cuddle at 6am...and instead of wishing for that extra 45 minutes of uninterrupted sleep...I cuddled him close and chose today to be a wonderful day...an accomplished one and one with gratitude instead of frustration.

Just a little note - being real - being honest.  Hope your Friday is off to a beautiful start.



Wednesday, February 19, 2014

oh grace....

I had think for 10 minutes about the password to my own blog.  That's how long its been.

It's OK though.

Life has been full...social...kids...work...love. All full in the right places.

This year started out strong and I'm so grateful.  This year's hope for our family was a continued path toward contentment but also to strive to reach personal goals while still trying to live in the moment.

Last year, I started to feel guilty having my phone with me so much...taking photos so often of my kids...you think I post a lot?  You should see the photos I don't post!  Then I started reading articles and blogs of Moms who were putting their phones away and never having them out and I really got inspired by that....but then we nearly lost our youngest last Spring...and I remember on the flight home from Miami...turning on my phone and flipping through photo after photo of Simon.  Looking at his face when I couldn't physically be close to him was beyond comforting to me.  The videos of his laugh brought me closer still.  It was then I was really glad for having my phone with me to capture as much of him as I could....just incase it would be all I had.

So, with all that said, I'm aiming for balance this year - I know I will not do it perfectly.  So I give myself grace.  That feels nice to say.


No one has taught me more about grace than my husband.  To many he seems like a tough, quieter fellow...but inside is someone who has been through SO much and yet still is so gentle & kind on the inside.  I think about the times we've had blow ups and full on fought...grace was so far from my lips....but he's blown me away in how he covers my mistakes up with his love.

I am way less uptight because of that and as my children are growing, I'm seeing how this balance of uptight, short on grace Mom + Gracious & hardworking Dad...is proving something beautiful and powerful in these little men we're raising.

So, with this year already two months in, practically...just a little wave hello & encouragement to have grace on each other...take MORE photos of the people you love....send more notes (handwritten) ....and be extra kind and gracious to yourself.


Saturday, November 2, 2013

Here's to 4

I can't help but cry when I think of 4 years ago today.

Big belly.  Aching back.  So exhilarated from being at my sisters birth the very night before.  Same room you'd be born in just 36hrs after your cousin, Josiah.

This beautiful story is only more beautiful because of the person you are to me, Leland Ryan.  You see you are such a communicator of love & affection.  You are almost always talking to me, touching me, or telling me something you love about me.  You might carry the genetic exact likeness of your introvert father, but you are all about the party, the life, the laughs.

It's ironic, Lee, because just a few years before you joined us, your Mama was in a sad sad place.  Lost baby Miller #2 and only Jude saw all those tears I cried - and he quietly sat on my lap watching little einsteins over and over so I could just sit still and grieve.  God healed my heart with each passing week but a true joy finally replaced that sorrow when I heard your cry, held your tiny body and lifted your face to mine.  I will absolutely never forget that moment.  The moment I first met you. It was like a door closed to intense pain and another opened to joy & laughter again.  You came in and healed my heart and made me believe again.  You, Leland, my teeniest boy, are living proof that a mustard seed tid bit of faith can move a mountain. Your Dad even told me, 'Wow its good to have you back again...' and he was right.  I was back.

Your Dad took this photo of me - it's my favorite of us and always will be.  I can close my eyes and be here in a moment.  Remembering your warmth and your sweet little face...and seeing your Dad hold your hand on his finger.  Nursing you was like wiping away tear after tear.  You were and are my joy.

Today, you're 4.  You're completely hilarious.  We laugh constantly because of you.  I am sometimes nervous in public with you because you're impossibly direct.  You are also a big big BIG fibber.  Flat out, you make things up.  You've told strangers the craziest stories and we're working with you on being a truth teller but gosh, in the meantime, we're also really impressed with your imagination.

Today - I am thankful for your light and your beautiful spirit.  You're a terrific friend and you will be loyal to your friends as you grow - that is easy to see.  Your eyes are the most gorgeous shade of blue - so bright and big.  You give the best hugs out of the family so far.  Seriously your hug could heal diseases.  I love how you touch people.  Physically, emotionally and even through humor.  You're funny because you're not even trying to be funny.  That's the best kind of funny there is.

Last year, you became a big brother and that is when I was blown away by you.  I remember you looking down at that baby and wondering if you were excited or if you were sad that you weren't the littlest anymore.  I felt sad for you and excited for you.  Sad because I knew my attention needed to be with this little brother of yours...and excited because I knew we'd given you a big gift in the form of a brother.
image by April O'Keefe

In the last 6 months, we've seen you go from sabotaging Simon to protecting Simon.  I know you were really affected by Simon's seizure and you've prayed nearly every night since that he would be ok and he would never get fevers.  I am in awe by your care for this baby (who is only 2lbs less than you but anyway) - you have truly arrived and have mastered the art of the 'little brother' and the art of the 'big brother' and you're rocking at it.  Half your day is caring for this little bro who needs care and supervision....and the other half you're driving Jude insane by hiding his lego guys and demanding to watch your favorite show over his.  You're pretty much the perfect middle kid and we love you more than life.

Looking forward to celebrating you....eating cake with you...building legos with you...and hugging you  and kissing you, sweet son.

I could not be more proud to be your Mom.

Happy Birthday!

Love always,

Wednesday, October 23, 2013

a quick video shoot

So, I had a video shoot yesterday.  Nothing major or difficult.

It was at the Cleveland Clinic.  The main campus.  No problem.  Sitter was set.  Makeup brushes washed.

Was not prepared for the emotion I would feel pulling up to this clinic.   The one we were just at 6 months back....with our Simon.  The moments I had hoped to forget.

I walked in, trying to keep my cool.  All the while I had a lump in my throat.  We were shooting in the same wing we stayed on.  The one where I was hoping to hear from neurologists that we'd be able to get home by Mother's Day so I could wash my Mexico clothes...and just be with my baby.

The smell reminded me of my emotions and watching child after child being wheeled around....and then watching their Moms.  So tired.  So done.

I put on my makeup artist hat and tried to just get through it.  I did, of course.

Then after the 7-hour day, I went to call for my car from valet.  Watched my car pull up in front of me and I remembered that day I held Simon as they wheeled us out.  I was so afraid the moment we'd get home, he'd start seizing.  I slept with him for a month.  Literally.  I didn't sleep in my own bed....only next to him.

The time it took for the valet to bring my car seemed like an eternity.  I saw a precious man wheel his father out.  He lovingly took his fathers arms and placed him arms underneath and lifted his Dad into the seat.  He put on his seatbelt and put back the wheel chair.  He came back and seemed to check in with his Dad to make sure he was OK and drove off...

I saw so many sick children.  So pale and washed out.  Some looked like they had been receiving treatment.  No hair and their parents seemed all too familiar with this place.

The valet FINALLY arrived and I let go.  I cried hard.  Cried hard for those families whose lives are surrounded by countless trips and treatments....

We always say how glad and proud we are to live in Cleveland....Home to the globally renown Cleveland Clinic but if you walk inside....the pride turns quickly to humility at what the next person is facing.  Their journey is different and difficult.  There are days with good news and hope...but also days like today when I saw a family huddled together over their uneaten lunch crying.  Crying over something awful.

We shot a nurse in the Pediatric department who works weekends...has 3 sons....and is an all around normal girl.  The part that inspired me was how much she lives for those 2 days/week when she's at work...helping little ones get well enough to go home.  She spoke about purpose and her ability to see her skills at use in this job in every way: emotional, mental, physical.  It made me so grateful for people in this industry who don't just care for their family  (like me, most days) but strangers...and who calm scared parents and who help a little one to get a shot with a teddy bear and a popsicle.  It's beautiful to see those with such gifts serving us but so humbling.

Had to share....hope this made sense.  xoxo Jess

Monday, September 23, 2013

Welcome Monday!

Last week was bad.

Like constant car repair, debit card hack, & appliance breakdown all in a 48hr period.

Never a good time for any of those, but especially not all at once.  It starts to mentally shake you.  '

'Why is this happening?'
 'Why did God allow it?'
 'Haven't we been faithful with what we have?'

Had to resort, eventually, to the idea that its just life.  Life can just really bite sometimes.

Typically when I post something on social media, it's of the funny/positive nature.  To me, negativity is everywhere and I don't like to contribute to it.  But, life certainly takes on its hills and valleys....and it seems like the valleys are so much darker....

This weekend was jam packed.

Joel and I connected last night and decided this week would be better.  We'd be intentional about conversation.  We would love through action.  We would listen harder to the cute things our kids have to say.  We would read more.  We would tickle them more.  We would kiss more.

So, welcome Monday.  I am filling you with many tasks that need to be done - starting with this tornado of a house situation.


First off, I'm thankful.  I'm grateful for:

-My husband who works HARD s o o o H A R D.
-My eldest son who is occasionally the man of the house - who inspires me and cares for me too.
-My middle son who is director of comedy & affection.  His touch makes me feel like I'm doing something right.
-My baby boy.  Who I adore but is suddenly acting like a boy and not a baby.  Planning to swaddle him today to tell him 'That's NOT OK!'  ;-)
-My wonderful family - supportive parents who pray and who help us get our broken fridge out to the curb.
-Beautiful friends - ones who text/call/write/pray or even ones who give us a new 'used' fridge.  I'm thankful I can be real and still be loved.  That's amazing.
-A job that is something I so enjoy - yet I can put my family first.

Heart is ready for a new week.  Do you have something you are thankful for?  Encourage my heart by sharing with me what you choose to be grateful for this morning.