What is Joubert Syndrome?

.wish list.

Here are a few fun products that I have been wishing for! Luckily I don't have expensive taste at all... :) hehe.

Lululemon Scuba Hoodie
 Lululemon Still Pant

Canon 50mm f1.8 Lens
 Silhouette SD for all my crafting projects!

Tory Burch Flats
 iPad2
Unfortunately real life doesn't allow for these fun items right now, but a girl can always wish right?!?

.bench. {tutorial}

As part of Parker's physical therapy we are working on helping him use his arms more so he can do better at rolling over consistently, pushing off the floor, and sitting independently.

So in order to help him with that, they suggested we get a stool or bench for him to put his feet under and rest his weight on his arms on the top.

So I got to thinking and what better way than to make it match his room and personalize it! {great excuse for a fun craft}

So here it is.....simple.easy.practical.

Can't get much better than that!!

1). Buy a wooden bench at any craft store (I went to JoAnne Fabrics)
 2). Paint bench desired color
 3). Trace design on top of bench with a paint marker
{love the quatrefoil design}
 4). Continue until whole bench is traced and painted
 5). Draw their initial on top of design with a different color paint pen
 6). Outline initial
Wah lah! All Done!

Now Parker has a bench to use to help develop his muscles, it matches his room, and eventually we can use it for the time out stool.

Multiple purposes :)

.a day in the life.

Life is busy.

I mean B.U.S.Y.

I always thought I was busy and that there was a lot of things going on, but until the last few months I didn't really understand what it meant to be busy. And busy with things that are non-negotiable.

On the first of January of every new year, you can kind of feel the weight of tax season starting to creep up. We have to prepare ourselves and brace ourselves for a busy next 4 months until April 15th when Nick's workload decreases.

I knew that this year would be different because we have a baby so it was going to be a lot more work since Nick would be working really long hours, but I definitley wasn't prepared for Parker's diagnosis and appointments to all be during this busy time.

Let me take you through a day in the life of us the past few months:

5:00a.m.-Nick is up and out the door
5:30a.m-Anna up and showering and getting ready
6:30a.m.-Parker is up getting a diaper change and fed a bottle
6:45am-Anna and Parker out the door to daycare
7:00am-drop Parker off at daycare and on to work
7:15am-Anna arrive at work
{1:45pm-Depending on the day Anna leaves work to pick Parker up for an appointment (usually about 2-3 times a week)
2:00pm-Appointment time
3:00pm-Head back to work for Anna or head home depending on the appt}
4:00pm-If no appt, Anna leaves work to pick up Parker from daycare
4:15pm-Pick Parker up and head home/grocery store/any errands that need to be done
5:00pm-Feed Parker dinner
5:30pm- Give Parker a bath/playtime and snuggle time with Mama
7:00pm-Give Parker his last bottle
7:30pm-Bedtime for Parker
7:30-8:30-Clean up the house/laundry/get things ready for the next day/destress/make dinner if I can
8:00pm-Nick gets home and destresses/eats dinner
9:00pm-Head to bed

I knew that handling two full time jobs would be tough, but with only one child I thought it would be manageable. The tough part about tax season is that Nick is working so hard at work and providing for the family that I then am able to pick up the slack at home.

But man oh man has this tas season been wearing on us both.

Both physically and emotionally.

To balance everyday is a challenge, but to emotionally handle those days as well with trying to manage the stress of work, especially when I am having to miss work for appointments and then trying to always play catch up has been hard. And then trying to process Parker's diagnosis and emotionally work through that and try and be the best mom for Parker and wife for Nick has been early impossible.

I have to constantly make sure my priorities are in check. Parker and Nick won't remember that I had a big quote or order due for work, but they will remember that I spent the time to work on Parker's physical therapy or that there was a warm dinner ready on the table when Nick comes home from work.

And that is the biggest accomplishment I can ever have.

It's a tough balance, especially when your days are full from morning until night. I have been experiencing insomnia again lately and I think it's because I am in constant survival mode. By the time I lay down at night it is the first time all day I have had to actually think and process everything.

My mind just races and thinks and I can't shut it off.

And then the alarm goes off and I do it all over again.

I am so thankful that tax season is over, not only for me, but for Nick also. He can breathe again, spend time with Parker again, and really enjoy all the things he loves!

God has truly been my strength through this time. He has provided me the stamina to make it through everyday, and when I don't think I can do it any longer, he provides again.

And gives me strength to make it through another day.

I am so proud of Nick for working so hard, reaching his charge hour goals, getting up early to work so he can be home for a little while at night, and for still being there for me whenever I need him.

So proud of my husband.

And now hopefully, the days can get a little more relaxed, a little more fun, and a lot more manageable as I have my partner at my side.

**P holding onto my lifesaver this tax season, diet cherry Pepsi!! Don't worry, no soda was consumed by the little guy!

.all done.

All done with breastfeeding that is. 
It's been a long 9 months of feeding and pumping and my supply has officially run out :(

My goal was to breastfeed Parker until he was able to drink cow's milk at about a year old. 
Parker had other plans :)

He never did do well latching on and it was always kind of a stressful event, but then at about 2 months he stopped latching completely. Which then led me to exclusively pump. I was determined to make it to a year! But with working full time and having to go to the "pump room" every 3 hours and always be in a place that I can pump every 3 hours was definitely a challenge! I think the stress of work, countless appointments, and the diagnosis with Parker put a lot of stress on me and really affected my milk supply. 

I had always thought I was gonna be so relieved when it was finally over...but I am actually kind of sad. It's a pretty cool thing to know that you are supplying your child with all the right nutrients and antibodies they need to grow and stay healthy. Such a cool way God designed it!!

But, alas, the road has officially come to an end. So here's to making it 9 months and making it this far and cheers to not being tied to a pump every 3 hours!!!
**my big boy drinking out of his sippy cup all by himself! :)

.reality.

Some days are good. Some days are bad.
Scratch that....
{Most} days are good. Some days are bad.

I am still trying to wrap my head around living with the reality of Parker's condition. I will be doing great and then all of the sudden, like a ton of bricks, the weight of the reality of Parker's condition will hit me.

HARD.

Like take your breath away, fall to the ground and break into hysterical sobs.

Most of the time I can catch myself and rely on the Lord for strength to help get me through these moments, to not let me fall into my fears and to be brave through it all.

And other times.

Other times I stand in the kitchen doing the dishes with tears streaming down my face while I hear Parker cooing in the other room. While I hear Nick playing and laughing with him and I cry sob.

I let myself go to places that no mother should have to go. Letting my mind wonder if I could ever deal with losing him. If I could ever live again if something happened to him. If his kidney or liver failed. How would I be able to continue breathing? What happens if his retina's don't stay healthy and he ends up going blind. How will I help him experience life? What happens if he is picked on at school and no one is there to stand up for him?

 I have a hard time catching my breath sometimes.

My heart aches.

{Literally} aches sometimes.

And other times, I am completely okay.

Other times, I cannot imagine anything better than holding Parker in my arms. Than having him look at me and smile. And sometimes I feel for other moms because unless you go through something like this, I don't think you can have this {special} kind of love for your child. It's like nothing I have ever known, and I feel bad that they don't know that.

I don't know that you can really understand how immensly proud you are of your child as they reach milestones that are so challenging for them, yet they do it. They defy the odds. Proud doesn't even begin to describe it.

Sometimes I see him reaching 3 milestones in a day and growing by leap and bounds, and for a moment, I have peace.

I have peace that everything is going to be okay.

That God is walking Parker through this and that he is going to be just fine.


And so begins my battle of trying to live our life as normal, yet living with the reality of the situation. And I think this is how it is always going to be. And I continue to pray and rely on God for strength.

every. single. day.

So I am hoping and praying, that we will have more and more good days. That as labs come back, they will continue to be positive. That as he grows, milestones are continued to be reached. Learning is had, and that he can live as normal of a life as possible.

That I can be the mother that Parker needs me to be and not let those bad days get the best of me.

.munchkin land designs.

I am DYING for a new blog layout! I have been trying to format on my own and let's just be honest...I'm no blog designer :) Munchkin Land designs is giving away a free blog template. So head on over to their website and enter for your chance to win!!