Special Boots

My sweet baby girl got her "special boots" (AFOs) today.  I think she looks precious in them!  They have ladybugs on them with teal foam and light pink straps.  Next, we get to start working on standing and walking!!!  We should get our standing frame next week, and our PT is ordering our walker!  I am SO excited about this next step in therapy and the independence this will give Grace. 

 

Psalm 13: 5-6

"But I trust in your unfailing love.  I will rejoice because you have rescued me.  I will sing to the Lord because He has been so good to me." 

Palliative Care

Palliative care.  Those words mean so much to me.

Having worked as a pediatric nurse with the palliative care team for my patients, I never dreamed I would need them.  That is until October 2011.  Then I desperately needed them.

As soon as we got Grace's diagnoses, we started meeting with Dr. Boyte and Jackie.  We talked about things no parent should ever have to even think about.  We discussed best possible scenario and worst possible scenario for Grace.  I don't know if I was just protecting myself or pessimistic or what, but I honestly believed the worst possible scenario would happen for Grace and our family.

We talked about our birth plan with the palliative care team.  We wept and our hearts were broken in front of them.  We ultimately with their help made the most difficult decisions of our lives.  We decided to focus on Grace's quality of life, do everything we could to not let her suffer, and to let her die peacefully if God chose to take her to Heaven.

Our palliative care team walked with us on this life changing journey.  They listened to us and got to know us and our heart's desires for our precious Grace.  They supported us in unimaginable ways.  And I'm sure they would say they were just doing their jobs.  :)

These precious people have become like our second family.  They were present on Grace's birthday.  They helped us truly celebrate her life that day and even during my pregnancy.

Grace's first picture

Since then, they have celebrated every precious milestone with us and our dramatic and feisty 18 month old!   

Jodee, Dr. Boyte, and Jackie with our new family

Today is bittersweet.  Today Grace graduated from needing to see the palliative care team.  This is a big step!  We are eternally thankful for Dr. Boyte, Jackie, and Jodee for everything they have done and for all they mean to our family as well as so many other families.  Thank you will never be enough.

Grace and Dr. Boyte today

This Day is a Gift

"You will never have this day with your children again.

Tomorrow, they'll be a little older than they were today.

This day is a gift.

Breathe and notice.

Smell and touch them;

Study their faces and little feet and pay attention.

Relish the charms of the present.

Enjoy today, Mama.  It will be over before you know it."

-Jen Hatmaker


(idea borrowed from a friend)

Sunday School

Just realized that I meant to post about Grace's Sunday School teachers a while back, but forgot!  I've been a little busy with my crawler!  :)

Grace recently moved up to the 1 year old Sunday School class at church, so I wanted to post about her first Sunday School teachers: Ms. Kathy, Ms. Mandy, and Ms. Laura.  Grace started going to church on Easter Sunday, 2011.

This was Grace's first Sunday at church - I think she was about 6-7 weeks old

This was her first Sunday in Sunday School - I think she was about 3 months old

And this was her last day in Sunday School in the baby room with her teachers Ms. Laura, Ms. Kathy, and Ms. Mandy

This was on the day of Grace's dedication with our family, friends, and church staff

I am SO THANKFUL for my daughter's precious Sunday School teachers.  They made her first experience with church and Sunday School a wonderful experience not only for her, but for Chad and me, too.  To know that she had teachers that not only "taught" her about God's love, but they truly love her so much.  I think you all read my blog, so THANK YOU from the bottom of my heart for starting this journey with us!  We love you all so much and are so thankful for you and your service to our God. 

Now I need to take pictures with her new teachers, Ms. Alisha, Ms. Kay, and Ms. Kandice!  :)