Tuesday, January 29, 2013

BFFs

     Lately, Nate & I have been chasing down parents in hospital hallways that have really cool wheelchairs and bonding with doctors and talking way past our appointment time.  It has been super hilarious.  But we are meeting some really good peoples. Buena gente as los Johnson would say. 
     Zoey is becoming ridiculously cute with Evey these days. The other night we caught her sneaking out of her bed and into our closet where Evey sleeps just to go play with her and talk to her.   These two made a serious pact long before we got here, just like Owen and Eli did.  I know the boys were best of friends just like Zoey and Evey were.  They promised one another to see each other through this mortal adventure.  I know that Nate & I made that same pact.  It's becoming more and more evident and it's such a blessing to witness.  It's the perfect eternal glimpse we are given in the middle of chaos. 
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Wednesday, January 23, 2013

Working hard or hardly working

For the first time in a long time I'm feeling busy, busy, and more busy. The schedules are officially all over the place, coupled with no sleep, I'm left to wonder once again how I am even remembering to breathe (insert blonde joke here).

The Botox for Evey has finally worn off from the thanksgiving surgery and the bad news is Evey's torticollis is bad - like major bad; coupled with her 46 degree curvature scoliosis we've got the perfect storm. For you math majors, yes picture a 46 degree angle and then picture that angle on Evey's spine and that's how bad it is. We had an MRI last week to rule out a tethered spine and thankfully it came back clear which means we avoided immediate surgery, good news. When Evey had her head surgery back in Nov both the plastic surgeon and the neurosurgeon mentioned how even the bones in her head were misaligned and nothing was straight like it should be, even her soft spot was way off to the side. Which is leading us all to believe, structurally from the head down the neck and spine are a hot mess. For now, because they won't operate until at least a year old we are in therapy mode. We are in weekly occupational, feeding, and physical therapy. This is on top of all the doctors appointment and the two new specialists we added this week- endocrinologist and rehab specialist. My favorite part of it all is that Evey is so happy through all the poking, prodding and stretching. Everyone always comments on it too, I beam like a proud mama when everyone comments on how tough she is. It was my one hope for my daughters and I have two of the toughest girls I know in my presence.

Meanwhile back at the homestead, we had our semi-annual report at Owen's autism school and he is officially age level on everything but fine motor and cognitive skills. That is such a big deal from where we were even a year ago! We have officially found him a kindergarten and it is mainstream city for him. Eli has found a new preschool that hopefully loves him as much as he loves them. Zoey is jumping into the twos full force, and as you can see from the picture below she still has her peanut allergy. One of the boys touched her with peanut butter on their fingers and that was just the beginning of the swelling. Although, Zoey on Benadryl is oh so entertaining. Nate is being super husband/dad as usual. That's why this family of ours works - he's the rock and the glue and makes us laugh until we all pee our pants through all the craziness. If you need a pick-me-up ask him to do his downton abbey impressions and accent, it'll change your life.



Tuesday, January 15, 2013

Unsung Heroes

Last post was about the amazing people around us and supporting us.  As parents of Owen and Evey we often get the you must be very chosen and special parents and we get to revel in all the praise of raising two amazing special kiddos. And sometimes it's easy to get caught up in the hoopla, thankfully we're blessed to know that is all the Lord, all the time. There's no way that we can be functioning with the energy levels that we have on the amount of little sleep we have and will probably have for the rest of Evey's life.  Our daily prayers always include, "bless us with the energy we need to accomplish the things thou would have us do" - and that specific request is always answered.  And all while being off the sauce, aka the Diet Coke for months.  I do believe in miracles!!!

My lesson I learned last week is that I know Evey's surrounded by 3 very chosen spirits. While Nate and I are being blessed, I'm reminded that it is the siblings of these special spirits that are the unsung heroes.  They will have a true glimpse into the start and beginning of Evey's life and see it through a childs eyes.  They might be by her side long after we're gone (we hope).  It has been fascinating to watch them gather by her and want to play with her even though she can't move.  They bring her toys and Zoey is already playing dress up with her and not once have they pulled on her g-tube, which is amazing for a 4, 3, and almost 2 year old. While on our friday night date at a McDonalds playland we encountered an extremely special needs young boy playing there by himself.  I watched the other kids stare at him and ease their way around him, while our kids didn't even flinch at his differences.  In fact Owen was so interested in him trying to shoot a basketball that he become his ball boy and shagged all his balls for him.  Nate and I awed at this situation, when it hit us that our kids will never know what's normal and what's not so normal by the worlds' standards - to them Owen will always be Owie and Evey will always be Eves knees and on the flipside Eli will always be the bear and Zoey will always be Zoe's nose. What a blessing we hadn't even thought of in our new situation.   They're the fearsome foursome.  When Nate and I first got married we gave ourselves the nickname of  "the supreme team" - we obviously thought we were a big deal.  Well we've obviously been humbled and I can proudly say the title has been passed down.  We all know the supreme team is and always will be Owen, Eli, Zoey, and Evey.  Here's proof:
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Thursday, January 10, 2013

Secret Weapon

I always knew I was going to have some special needs kids, and Nate will tell you the same. Apparently I had many conversations about my future "special" children with friends and family long  before I was even married, most of which I forgot about thanks to my non-existent memory. So when Evey was born, I was sent many a message about those past conversations and how I must have been prepared for a long time for our families future.

So growing up whenever I would see a "special needs" kiddo with their families. I would always think how sweet for their little family to be blessed with a child like that in their home. And it is so sweet. The sweetest blessing one could ask for. What I have learned day after day is that I have a whole new respect for other special needs parents out there. What you don't see behind those sweet kiddos is how medically complex they are. How the parents spend hour upon hour calling insurance and doctors and making doctor visits and the therapies and the countless surgeries and the nightmare of the home health care supply company.  One of my favorite other Mom's I've met recently described it best when she said when she is out shopping for clothes, she pictures herself out in the doctor's office and hospital wearing those new clothes.  Hilarious, but oh so true. It is a full-time job that I had no idea even existed. Now when I am privileged to meet these other parents I try my best to give them a secret smile to let them know, I know how busy you are.

The other lesson I've learned this week is to never take for granted the support system we have from friends and family. Many people don't have what we have and I never undervalue our "secret weapon". We happen to have a "secret weapon" aka my sis-in-law Kara who my kids and I happen to adore as a mother and friend. She frees up a few hours in my week so I can make the doctors visits and the endless phone calls. It's an immeasurable gift that I wish everyone had in our situation. Moral of the story is Nate and I aren't super heroes. But with endless help from the Lord and lots of help from friends and family and especially our secret weapon, we are managing our new life the best we possibly can.  And it is so blessed. We are so grateful the Lord put those people in our lives.  No kind act is small or insignificant or goes unnoticed.  I'll say it again - we are blessed beyond measure.



Friday, January 4, 2013

Humor

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Look who thinks Mom's sneezing is hilarious.  First laughs we've gotten out of this little lady and I'm already seriously impressed with her sense of humor.  Only Mom being sick would make her laugh - she'll fit right in with this family.

Tuesday, January 1, 2013

Evolution

Last night, Nate and I were talking about how last year we were saying good riddance to 2011, thankfully this year we were saying a fond farewell to 2012. It has been so good to us in so many ways and we hope 2013 is equally as amazing. If there's one thing we've learned this year it is perspective. Life can be as easy or as hard as you want it to be depending on your perspective. This year we are so thankful for eternal perspective. Perspective that makes even the hardest days easy.

The following pictures sum up 2012. It's the raw uncut evolution of trying to get a family picture. We are the most dysfunctional, out of control, fun little family and I hope it always stays that way. Bring it on 2013, we are ready!