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="">