Tuesday, March 25, 2014

fearfully & wonderfully made

Three weeks ago I started a post that I never finished about Zachary's new exciting progress.  In a very short amount of time Zachary went from crawling to pulling up and standing at an ottoman to climbing up onto furniture and eventually all the way up the stairs!  It was so exciting and I lit up instagram with pictures. 

What I haven't expected with this journey is times of regression or plateau.  Zachary has gone backwards a bit and won't even pull to stand anymore.  No more climbing on furniture, no more climbing up stairs.  His therapist isn't quite sure why he would do this, but they're back to the basics that started the initial progress. If I'm honest, it's frustrating to see him lose that new skill.  It's frustrating to see him not respond to things the way the therapists want.  It's frustrating to not have him speak or tell me what's wrong when he cries.  It's frustrating when they do their yearly required assessment and he's labeled way behind his years, some things at the level of a small baby.  

But!  In this journey I'm finding God uses these frustrating times to bring Him glory.  To put my eyes back on what God already has done.  I see His love all around me.  Which in turn gives me incredible hope for what God can do.  I'm discovering this is a cycle I will be on the rest of my life.  Honestly?  I think of it as such a privilege!  To see closely God at work?  Even if that's the only reason we had to walk this hard journey, I'd take it. 

So today I'm face down in worship and spending some time remembering how far he's come.

Wednesday, March 19, 2014

unnoticed heroes

To the unnoticed heroes we see multiple times a week
Thank you!

For your consistent patience when he doesn’t want to try
For putting up with so many tears and screams
Thank you!

For pushing him a bit farther than he really wants to go
For being creative and trying new things
Thank you!

For treating him like he’s not just another kid
For loving my boy and showing you care
Thank you!

Thank you, sweet therapists.  
Thank you for giving all you've got to help our boy be the best he can be.  
You truly are our heroes!

Wednesday, February 5, 2014

praying through the silence

The sun was slowly rising to reveal the thick blanket of snow that had caused the school's 2 hour delay. Everyone was still sleeping and I enjoyed the longer than normal quiet morning.  I had my quiet time with a hot cup of coffee and my Bible.  The quiet continued as I slowly browsed my blog feed and the quiet continued as I snuck upstairs to start making pancakes.  I soon heard the end to my silent morning as my 3 oldest children climbed the stairs, already bickering and calling for me.  They sat at the table and continued to talk loudly and I sighed.  The quiet was gone.  Nowhere to be found.  Sometimes I forget to appreciate this kind of noise.

Later that afternoon Zachary and I headed to therapy.  It’s always quiet when Zachary and I drive to therapy, church, or the store.  It’s quiet when I fold laundry in the afternoon.  There’s the occasional babbling and he cries when he’s hungry or tired, but otherwise it’s quiet all day.  


My heart aches and I long to talk to my 2 ½ year old.  I desperately want to hear his voice tell me what is wrong.  I want him tell me he hates his dinner, that he doesn’t want to go to bed, and to ask “why” 500 times a day.  I'd even love it if he yelled at his siblings and joined in on the noise!  But there’s nothing.

Oh Zachary, I’m hopeful for the day I hear what your voice sounds like.  I wait with anticipation for you to talk to me on the way to and from therapy, to talk so much I want you to be quiet!  But until that day I’ll pray for you through the silence, trusting God's plans in the quiet.

Wednesday, January 22, 2014

"special" through the eyes of a 5 year old

It was a brief conversation but one I won’t soon forget.  Five year old Daniel climbed into my lap and we watched his cousin Anna coo and babble on the floor.

“Mommy, is baby Anna special like Zachary is?”  he asked. 
“What do you mean?” I replied, prompting for more. 
“You know, like Zachary is extra special because he can’t walk and do other stuff.”
“No buddy, Anna’s not that kind of special.  But Zachary’s a pretty special brother isn’t he?”  I said.
"Yep." Daniel quickly said.

And then that was it.  Daniel jumped down to run and play.  That short conversation and his innocent words reached a place in my heart I’m pretty sure I’d forgotten was there.  Daniel doesn’t really think of Zachary being any other way.  Before he started Kindergarten this year he spent hundreds of hours in therapy sessions and doctor’s appointments with Zachary and I.  Daniel has seen a lot.  But he doesn’t see Zachary as different, but rather as being just who he is.  Daniel doesn’t see Zachary as broken, but as extra special.  It's very evident in the way he talks to, loves on, and plays with his little brother.  

It’s my prayer that as you and I see those with disabilities and special needs that we too don’t see them as different or broken but as extra special, loved by the Almighty God just as much as anyone else.  May we see those with disabilities around us in the same way my 5 year old does.  Special.  Loved by God and just the way they were intended to be. 

Wednesday, January 15, 2014

zachary update: it wasn’t my genes

In the past month Zachary had his every 3 months round of visits with Metabolic, Genetics, GI, and his Opthamologist.  (Neurology is still to come later this week)  And that's not counting the 4 therapy sessions every week.  He was weighed, measured, poked and prodded multiple times.  After all these visits I re-learned a few things. 

1.       A stroller is always a must at appointments, for walking up and down the halls while waiting. 
2.       Daddy is always more fun while waiting in the doctor’s offices that Mommy is. 
3.       An iPad is always a must – particularly if it’s loaded with Fisher Price apps. 
4.       Mommy and Daddy always deserve a stop at the Cheesecake Factory as a reward after the long appointments.

Medically we saw Zachary’s weight fluctuate a bit but heard doctors who were pleased with his slow but steady physical progress.  He will have blood and urine tests every 4 months to track his kidney function – a primary concern with Lowes.  So far things are okay with his kidneys!  His eye pressure continues to look fine – which is also a common concern.  One of these days both of those will probably be an issue, but I’m praying daily for his kidneys and eyes, knowing God is in control.  We are also waiting for his new glasses to arrive.  Because they are such small frames and strong prescription they have to be special made at a lab which takes time, as in 4-6 long weeks.

 A new crazy prescription he started is an antihistamine.  Not because of allergies, but because of its side effects.  The side effect of the antihistamine is hunger.  Hunger makes you want to eat.  Eating hopefully makes you grow.  Or at least that’s the plan, strange as it sounds.

Last month Zachary was also fitted for a therapy stander.  More on that with pictures when it finally arrives!

At his metabolic and genetic appointments I was poked as well.  I had blood drawn to see if Zachary’s Lowe’s diagnosis came from me.  The doctor called yesterday to say I was negative for the Lowe’s mutation.  For the first time in a long time I had questions for God.  I think I more wanted an answer that scientifically proved why this showed up.  Instead we have an instance where Zachary’s gene mutation just happened.  A new strain popped up.  I know God just decided this is what was best, but no scientific answer makes me want to ask God why.  Why?  I’m sure I’ll ask that over and over throughout the years.  But I know God has his reasons, far above my understanding.  

I have a special kiddo.  A special boy who needs my extra love and attention.  And I’m here, giving him all I’ve got and thanking God for the way He shows himself evident through this sometimes easy, sometimes hard and long journey we are on.

Monday, January 6, 2014

menu planner ~ 2014

I'm so excited to show you what I made this weekend!  My sweet cousin has a fun blog (you should check it out!) and I was so inspired by a recent post she wrote about how she meal plans.  Between working part time, multiple therapy visits a week, caring for Grandma, plus my role as wife, mom, and homemaker, I desperately have to plan our meals ahead of time.  If I don't it's 5:30 before I know it, nothing is made, and I'm ordering pizza. Yuck.  I've tried so many systems, pinned numerous recipes on Pinterest, organized again and again, but nothing really works.  Until now.  As fun as it is to find new recipes on Pinterest, I don't have time to sift through the hundreds of amazing looking recipes filed on my pinterest boards.  I need easily accessible and practical recipes for my family in this season of life. Enter my cousin's method.  I took her advice, picked 35 meals, and assembled my meal planning binder complete with printed recipes. I love it!

You can read about what's involved and how I learned how to do it here. I ordered my 5 1/2 x 8 1/2 in. binder, page divider tabs, and notebook paper that size all from Amazon.  I love the smaller size.  It's easy to fit in my purse and take with me to the grocery store.  I'm already thinking I want to print and assemble a prayer binder this size as well for my quiet times.

(I'm also super excited that I get to see my cousin - in person - this week!  It's been so long, 8 years or more, since I've seen her!)

What's on your menu for tonight?

Sunday, January 5, 2014

what i'm reading tonight

A perfect evening for me is a quiet night at home either reading or watching a movie with my hubby.  Add chocolate and I'm in heaven!  Tonight my hubby is sick in bed (praying the rest of us don’t catch it!), there’s no football on TV (sad actually, I love football Sundays!), and the kids are in bed (can we say hallelujah!).  
So I indulged in a little blog reading. (I just can’t get into this Downton Abbey craze. I tried friends, it’s on now, but I just can’t.)  Here are some of my favorites that you should take a moment to read.

Are you looking for a Bible study to dig into this week?  Hello Mornings has a free 5 day study in Colossians starting tomorrow.  I can't wait!

I'm also looking forward to this “Intentionally Focused” study that starts in a couple weeks.  Take a peek; you just might want to join in too!  

Happy reading!