Another {Shriner's} Monday

{Shriners' Mondays} are my "hard" days.

They bring with them more realization of what is in store for Jack's future...

castings, surgeries, more appointments, and etc.

Usually after monday passes I am okay.

The everyday "normals" of being a mom set in and I get thrown back into life's demands.

This week has been different.

It is already Thursday, and Monday is still lurking in my mind.

The words of "abnormal muscle, underdeveloped bones, inability to stand, and finally the dreaded possibility that lil man may not walk"... crept into our conversation between us and the doctors. 

Before monday, we hadn't discussed any other aspect of Jack's development (birth defects)

 except his clubfeet.

It was always... we will start with his feet, and then see what else we might have to do down the road.

Now, I guess we are at the stage where we need to talk about the elephant in the room.

It is hard for me.

And that is okay.

We take one day at a time... at least I force myself to try.

This week I found myself kissing the kiddos a bit more.

Letting the laundry pile a little higher, while I read an extra book... or two.

And rolling around on the ground with lil man and sis.

Lil man thinks bananas are for his hair instead of eating.

Just being silly with daddy.

These last TWO pictures crack me up. 

Lil man lights up when his dad walks into the room.

It is so fun to watch him try to do the things his "daddy" does.

 Oh how I am so grateful for time with them.

Mr. P and baby J both teach me strength and understanding.

Laughter definitely cures all.

So I laughed really hard and long in the car on the way to dinner.

I think it scared Avery a bit until she decided to join in.

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{questions}

It's been a while. 

Hate when I start a post with that sentence, but those words are more true than ever.

a while is an understatement for the lapse of time, but life has been steady.

We moved back from Cedar City, utah and haven't really slowed down a bit since the move.

I can't believe Jack is NINE months old and lil Miss is almost THREE.

Tomorrow is a BIG day.

Since the last time I gave a report on Baby J, we have learned a few things:

1. He doesn't have a knee cap in his left leg

2. We don't know how the "knee issue" will affect his function

3. Genetics appointment #2 still undecided-- still leaning towards mild Arthrogryposis 

4. Jack is still my hero and favorite little man 

The last one I have know since they placed the little man in my arms.. 

so that's not really "new" information.

It is sometimes scary to be Jack's mother for me still. 

There are moments when I am uncertain of the "extra" things he needs.  

I have realized in these past months that feeling these emotions are okay. 

I am doing the things I can, and continually seeking help from those who have more knowledge.

But at the end of the day, I have to remember he is "our" little man... 

and I am his biggest advocate.

So tomorrow will be another day, I will sit and listen. Then ask a few questions.

When those questions are dodged... I will ask them again and find new ways 

to get the answers and treatments we need. 

Cause' baby J deserves it. 

He deserves the best there is... and we will fight for that. 

And we feel so blessed to be a part of a hospital community {Shriners} 

who try their hardest to give the care Baby J needs.

Lil Miss looking up to her slightly older cousin- Ollie

We have had some crazy adventures the last few months:

I will add links when I get a chance to blog about them.

1. March 30: Papa's medical benefit =success!! Thanks for your support

2. April 8: EASTER with family and Katschke Klan

3. May: Mother's day and a new Hair-do

4. May: Jack gets the "Boot"

5. May: Roadtrip to WYOMING

6. June: PENDLETON family Reunion in Colorado

7. June: Father's Day

8. Hoogle Zoo trip with Emily/Frank

9. Manti Temple Date night

10. July: Lyn Arrives in Utah 

11. July: Suggs come to visit

12. July 4th Celebrate

13. MOVING DAY

14. July: Roadtrip to California

15. July 24th {Pioneer Day}

16. Unpacking house and Decorating

and of course the Olympics start...

Can't believe the last time we were watching the summer games we weren't MARRIED yet.

Now we have two adorable kids. Yep, I think my kiddos are pretty dang cute. 

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2011 Reflecting: Arthrogryposis

I promise pictures of our Christmas celebration will come-- soon.

But tonight is another one of those long, mind racing nights where I can't sleep until I write. Everyone in the house is already fast asleep in dreamland.

And as for me-- my mind wonders.

It is therapeutic for the words to escape my mind onto paper or the web in this case. I know that this is a public domain that can be seen and read by anyone, but I still have the desire to pour my heart out. It is as though, once the words are placed, the fear, anxiety, etc is released so that I can continue our journey. I have to admit each time I write... the keys are met with not only my fingertips but small drops of water. Like my mom always told me, it is okay to cry. And I do.

Tonight, I have been reflecting and researching. James has grown to hate the word google... it is my home page. I google and google. And I have come to be VERY familiar with the word-- arthrogryposis. I can't even pronounce it correctly, yet it plagues my mind constantly. We haven't received any type of confirmation that this is what we are up against, but my motherly instinct kicks in... I can't shake it. We even met with the genetics doctor, no definite "diagnosis" can be determined, yet. So I allow this word to harbor in the back of my mind, and determine what treatments we should be allowing. The constant that brings smiles and hope is Jack. Jack being himself... and the smiles, coos, stretches and improvements. There are so many stories of children screaming throughout the weeks of casting, splinting, therapy etc. Our little man does it with some initial cries, but is quickly soothe with cuddles and love. Oh to see him smile...

And then there is Miss Avery. I worry that this "process" will affect her even more than lil man. She is the one that sits at the end of the hospital bed watching her little brother in pain. She has adapted to quickly present kisses to anyone who has a "booboo". Her sweet innocence is endearing. May she retain that for a long time to come.

I always expected to teach my children lessons of love, charity, sacrifice, endurance, faith, hope, and optimism.
They teach me.

This past year we have grown-- physically, emotionally, and more unified. I look back at the few short years together and it astounds me the growth and difference of our family.

But the reality of it is-- we have much more growth ahead. May I be wise enough to allow it to change me for the better.

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