What is Joubert Syndrome?

.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!

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