Posted (jooosh) in All Posts on December-14-2008

What a nice lazy Sunday with the Bun. Except for the time I spent cleaning up the basement. =)

It was so cold today (high of 10 degrees!) which is why we were all content to stay inside.

We started out watching a little Micky Mouse Clubhouse which included some good cuddle time with my girl. There was also a nice virtual family gathering when my mom I video chatted via Skype. Ella’s Great Grandparents were at my moms at the time, so they got a chance to see Ella in action. I wish that we could make the trek to Cali so we could see everyone in person, but we’ll take what we can get for now. Hopefully next year when Ella is (hopefully) off oxygen and her immune system is stronger we’ll be able to go.

Can I be honest with you…I have moments where I wish Ella was just a normal 16 month old. She’d be running around the house, talking, eating, not retching, playing with her toys, and getting into things she shouldn’t. We could take trips, go to public places, and see our friends that have other kids instead of being confined to our home. I could show my kid off at work, and take her to the zoo, and eat ice cream together with her.

These thoughts especially flood through my mind when I’m out and about and see a “normal” 16 month old. It reminds me just how far behind my precious child is. And that’s hard to see.


When I receive an email from a family who just found out that their daughter was diagnosed with CDH, I remember the hope my daughter brings.

When a friend tells me how (trying not to cry here) the first thing she does every day, before anything else, is to pray for Ella, I remember how God has used our sweet child to draw people close to Him.

When an 11 year old girl comments on the blog to let us know that she’s praying for Ella, I see the Kingdom of God being impacted now, and in the future.

When I think back and ponder the events of the last 508+ days, I am overwhelmed by what we’ve gone through, and would be in denial if there wasn’t documented proof of the events. But I’ve also experienced the overwhelming presence of God in ways that I had never previously encountered.

If Ella wasn’t who she was, perfectly formed by God, you would not be reading these words right now. This would be just some other blog with pictures of our kid and comments about how cute she is. But instead, you have traveled with us through the heaviest times of our lives, and prayed us through it, cried along with us, and comforted us with your words and presence.

Ella was no accident, and when I consider all that our Heavenly Father Has done by her, I rejoice in the blessing that she is.

For these reasons, I will be content with where my sweet child is, knowing full well that God is in control and he has her right where he wants her.

Thank you Jesus for blessing us with this incredible girl. Praise you for allowing us the privilege of being her parents. We trust in your plan Lord, and surrender our lives to you. May Ella continue to have an impact for your Kingdom each and every day. In your Holy Name. Amen.

P.S. Happy Birthday (Dec 15th) to Bun’s Mommy! God knew what he was doing when he chose you to be Ella’s mom.

Liz Nelson on December 14th, 2008 at 10:11 pm #

Your posts are so inspirational to read. You are very loving parents, your love shines through your pictures and your words.

megan on December 14th, 2008 at 11:08 pm #

Happy Birthday Tina! Josh it is normal to have those thoughts.. My best friend has a daughter with down syndrome and congestive heart failure.. And we have had many of those talks but it wasn’t until I reminded my friend of this.. Abbey reminded me that God created children with special needs to remind us of his unwavering love and strength. Abbey and Ella have brought thousands together and closer to God.. I know that children like Abbey and Ella are the reason I work at childrens. I get to see God everytime I look into the eyes of children like Ella and Abbey.. How blessed we are to have them in our lives. Hugs~ Doodlebug

Nancy Costas on December 15th, 2008 at 9:04 am #

Happy Birthday Tina! Keep up the good work Ella! You look great! Well said Megan…couldn’t have said it better myself. Nancy

Kelli Billman on December 15th, 2008 at 9:23 am #

Happy Birthday Tina!!

Jennifer Harris on December 15th, 2008 at 9:26 am #

Happy Birthday Tina and May Our Lord continue to bless you and your family. Know that you are in our prayers.

Cliff, Diane and Sonic Blue on December 15th, 2008 at 9:47 am #

HAPPY BIRTHDAY TINA !! We hope your are able to find the time to celebrate your birthday in the way you want most. We wish you a GREAT year.
U.CLiff, A.Diane and cuz’ Sonic BLue

Laura Marold on December 15th, 2008 at 10:13 am #


Williamsburg on December 15th, 2008 at 11:57 am #

Hippo Birdies Two Ewes, Miss Tina =) Sending you our warmest wishes on a super cold day. And just adding a heartfelt Amen to your sharing your heart with us, Josh – having been created for “normal,” it is so painful when that path gets bypassed for something else. It’s comforting and amazing to be able to trust Him, and to be grown and challenged in the something-elses, but doesn’t erase the longing for normal. We’re honored and blessed to be companions on the journey – love you all more than you know. XOXOXO

sherry martinez on December 15th, 2008 at 1:22 pm #

Hi josh i have never spoken to you but i did speak with tina once. I have a son with cdh and he is 8 months old. I would like to share with you about what your ella means to me. I found your blog after i found out about my son i was so scared, i have an older son who just lost oxygen at his delivery and lost enough to cause some develpmental delays. He is 14 now and doing really well. i was never going to have any more kids as it was my fear to end up with another child like him. he was alot of hard work and i at the time I was 22. now at age 36 i have a cdh baby. your ella gave me hope and strength to move forward and give it up to god. I logged on everyday until it was my turn for the journey and i did miss a few months of your ella. however my baby cayden did make it and its your family who helps me everyday. i love my son and would not change a thing. I just want you to know that ella is normal for ella and all of those things you mentioned will come and it will be the most amazing feeling ever. I also have a 16 year old girl who is a 4.3gpa student people would consider he normal but she is a high achiever. all kids have something. I know how hard it can be to see other children as i run a daycare in my home and have a baby in my care that is 2 weeks younger than cayden. i always remind myself that cayden will do everything in his time. so i dont even worry about what that baby can do. However working with both of my sons as it not being easy has brought me great joy. when they succeed it is so amazing to watch. cayden has been working on sitting up alone and two days ago he accomplished that and i nearly cried i was so excited. he sat and sat for minutes not seconds and i know we both work hard and it will pay off. I now know god was preparing me for cayden when i had my first son. I now know how blessed i have been and would never trade any of my kids for “normal” kids. I would love to be there for you and tina if you ever need a friend. thank god for ella and cayden may they live long and may we enjoy every moment. i would rather be in this place than were so many others find themselves without there beautiful babies. love sherry and baby cayden

Joel Snyder on December 15th, 2008 at 2:14 pm #

Ella, Please give your Mom a big hug for her birthday from Grandpa. I just saw your Mom and Dad today and wanted you to know that our sweet little girl Joslin (Taco) left us today and went to heaven. I didn’t know she was so sick but God wanted her to join him and although you aren’t old enough to have known her. I want you to know that she was a great dog and your Grandpa’s faithful companion while you were in Florida. Your Grandpa misses her already. I am home with Manny and we will be down to see you soon. Love, Grandpa!!!!!!!!!!!!!!!

Tammy Dygert on December 15th, 2008 at 7:42 pm #

Josh and Tina – Was just on facebook and saw a post which made me think of you. Hope you had a nice birthday, Tina (I’m a Sagitarian too — Dec. 20). I think Ella looks great — love the little ponytails — Autumn barely has hair! Keep up the faith — Autumn is still a little behind too, but I’m sure you know as well as we — that in time all of this will pass and our little girls will be running us ragged!

Eve Johnson on December 16th, 2008 at 8:51 pm #

Amen and Amen to Josh’s post.

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