Thursday, March 7, 2013

Perspective and Change

Since October 21 we have been getting bad news after bad news from the doctors. From virus's to swollen ventricles. From Down syndrome to a not functioning heart.
At first I would cry and cry until I would get headaches. I would pray and pray like it was in my control. At around January I realized NONE of this is in my control no matter how much I want it to be or no matter how bad I want to change it. Instead we see and appreciate everything in our midst. And, with God's help, To make it more than we could have imagined.

I never thought I would have a special needs child. Especially since my Dad passed away with diabetes and Chris has had two brothers with autism. I foolishly thought that was it for us the rest of life should be a breeze, right? WRONG! Life is hard. It's suppose to be hard and it might not get easier. And that's ok because we have been given unlimited resources to help us support and and sustain us. And are surrounded by things that we should find joy in and do!

 "Every journey has a secret destination of which the traveler is unaware." It's couldn't be more true for our little family. And even though we were unaware, unprepared and especially are UNDESERVING this is our new journey and we are excited to face it together.

For some reason we have been flooded with the most kind and heart felt messages full of encouragement and compliments. However I can't help but feel overwhelmed and inadequate. I have done nothing but cry and pray while somehow finding strength far beyond my own. To do nothing more than survive. Zuzu on the other hand is adjusting to a new world a body (a sick body at that) a different nurse every 12 hours. Trying to learn how to eat, breath, suck, poop, burp, communicate and  all the while changing my heart, altering my perspective and some how making me feel like the luckiest mom on this planet to have been entrusted with her. One look a her and you know she is special. One minute with her and you know she is destined to change lives that her purpose on this
earth is far greater then mine.

Zuzu is doing well. There are good days, really good days, bad days and terribly bad days but she smiles and pushes through it. And all through it she comforts US, makes US feel special makes US feel like we were chosen for something so great but aren't capable to understand it yet.

12 comments:

elizabeth kartchner said...

so proud of you, my little sister! Love you beyond words!

Scrappy Kapers said...

I have just read your blog, you are an amazing family and my heart goes out to you, but I will share this blog with a friend of mine, who will encourage you all the way. Bless you all
Kim with lots of hugs and kisses

Anonymous said...

Prayers your way. You can do all things though Christ who gives you strenth. Phil. 4:13 what an amazing little girl and her prayers. Georgia

Cummards said...

Ash you guys were chosen for something special! I can't imagine how hard your hard days are, but I hope you find joy in the good ones to carry you through. Wish we were still there so I could bring you a meal, or have taimi over, or do SOMETHING. But we will keep you guys and especially your sweet babe and her heart in our prayers.

Corina said...

My Mom and Dad were chosen too. My special sister Charlene. Born with Cerebral Palsey. She was not suppose to live past the age of 5. She became an angel at the age of 42. We are what we are because of her. She taught us so much. And if I could have changed it all...... I wouldn't. Thank you God!

Melanie Humphries said...

Thanks for sharing with me Kim. Ash, what you are going through is so so hard but will turn out to be the most rewarding thing you've ever done and will do in your life. I too have a son with downs syndrome. He was lucky to survive as he had lots of complications at birth. I should really be saying WE were lucky cause what he has done to our family I can't describe but he brings so much joy to everyone he touches. We were both 23 when he came into our lives and my goodness it was so hard some days but so great other days. I think the term auto pilot was a good description of how i was coping initially. Our son Cooper is now 11 years old he has two little sisters he idolizes and we couldn't be happier, he does dance classes and taekwondo and is just like any regular boy. I thank you for sharing your story it is so great that you are documenting it and us a very brave decision. Good luck with your journey it will be an amazing one.

McCall said...

AMAZING post. We love you guys!

Mary and Ryan said...

I love you Ashley! You are amazing and so is your baby. I want to meet her and hold her! I know she is and will forever be the most special part of your heart, I know because my Dylan is mine:))

Chelsea said...

You are such a special family. Praying for you!

{Brittany} said...

She is lucky to have you and you the same with her! You are an amazing mother, friend, example, and daughter of God. You are stronger than most of us. Keep on girl!

Unknown said...

Ashley, that was the most beautiful and heartfelt thing I have ever read. I too am so proud of you. I can not think of a better and more loving family for our little special one to belong to. Her life will be amazing with you, Chris and Tiami as her family. I can not wait to meet this little angel from above. Hugs and Kissed from Auntie Cheryl. I love you from the bottom of my heart!

Susie Smith said...

Ashley, Chris, and Taimi,

I have always said you are like ambassadors. First in Europe, and now as parents of precious ZuZu. I pray for you daily, and am so proud of your conviction, courage and character. I love you all so much!