Posted (jooosh) in All Posts on January-20-2009

“This is so hard. It’s just sooo hard.”

Above is the mantra I have been uttering to Tina for the last few weeks. She may even indicate that I’ve been saying it longer. I want to capture, on video, one of of the moments where Ella was retching real bad so you could see just how difficult it is to watch. It is hard to watch….so hard to watch.

I want Ella to be better….now. Enough with the patience, I want her better NOW. Fine, I’ll even trade. Make me sick. Let me be the one who retches all day. Let me be the one who chokes so hard on my own saliva and secretions that I start to pass out. Why have her go through so much of this? Hasn’t she been through enough?

There have been days where a wave of depression will just wash over me. I stare at the storm around me, and I’m just overwhelmed. The waves are HUGE, the lighting and thunder are INTENSE, and I ask myself how I’m going to make it through.

And then…

This is the face of a child who has gone through multiple surgeries and procedures. She has endured countless shots, blood draws, pokes and prods. This face…this child…perspective.

She has such an amazing spirit. She is such an incredible fighter. She had to be, or she wouldn’t be here….perspective.

But even greater perspective was found this morning. Tina and I started our day by listening to a sermon by Charles Stanley. We listened to him almost every day while we were in Florida, and the Lord worked through him to minister to our hearts so many times.

The sermon we listened to was titled: The Message in the Storm

I knew it was going to hit me when Dr. Stanley started out with the following introduction:

God teaches us to rivet our attention upon him, he teaches us to glue our focus on him, he teaches us to set our gaze upon him in stormy times, probably, in a more effective way than any other times in our life. Because listen, when the storm is so dark, and the winds are so fierce, and the waves are so high, and the waters so deep, and the boat is about to turn over, the only thing we have IS God.

That needs to be my focus. I know that when my eyes are fixed on God, his perfect peace is realized. I encountered this so many times when we were in Florida. Especially during the darkest times.

My hearts desire is to be obedient to him, trust in him, and be patient in HIS timing. The storm swirling around me can be incredibly distracting, but the more I look to him, the less I look at the storm.

Father, I surrender my heart to you. Let me keep my eyes fixed on you during these difficult times. May your hand continue to be on Ella’s life and may she be a testimony of your love and power to all who come to know her. In your Holy Name…amen.

If you’re going through a difficult time in your life, and you have a personal relationship with Christ, I would encourage you to listen to this message. It’s about 20 minutes long. You can download the MP3, or use the player below.


Oh…and how was Ella today? She had a great day. She had a good PT and OT session and her clinical behavior overall was just positive. I’ll let the pictures below do the rest of the talking. I’ve already done enough of that myself. 😉

Laura Blackwell on January 21st, 2009 at 1:05 am #

OH WOW, it was during those dark times that we were introduced to Miss Ella. You guys have been through it. But God is good. He is right there. It’s midnight. Go to bed. Prayers for an amazing night’s sleep.

Joel Snyder on January 21st, 2009 at 3:16 am #

Ella, You are such a trooper and I am amazed at how you can have such a great spirit when things are rough. Josh thanks for this post it serves us well to focus on the things that are important and not waste our time on the things we can’t control. I am praying for you and hoping that you will start to see the light at the end of the tunnel. I am amazed when I take time to think of when this journey started and where we are today. Thanks for keeping me in the best frame of mind and reminding me that this is a marathon not a sprint to the finish line. I will catch you guys later. Love,Grandpa!!!!!!!!!!

The Brittain Family on January 21st, 2009 at 7:11 am #

May He–always, only–be our strength and our joy. With love and prayers….!

Sharon Moran on January 21st, 2009 at 7:17 am #

Hi Josh and Tina,
my name is Sharon and I am a friend of Par’s grandparents here in NC. I have watched Ella’s blog everyday since meeting her thru Par’s blog. I have prayed for you guys often, but today my heart has really went out to you. I want to share the words of a song that I sang at church just 2 weeks ago. I hope it minister’s to you. God Bless! Sharon Moran

It was such a lovely day and the sun was shinning
A gentle breeze was blowin my way, not a storm cloud
in sight
And suddenly without a warming, a storm surrounded my
But even in the storm, I can feel the calm, and here´s
the reason why

I know the Peacespeaker, I know Him by my name
I know the Peacespeaker, He controls the winds and
When He says “peace, be still”, they have in obey
I´m glad I know the Peacespeaker, yes I know Him by

There´s never been another man with the power of this
By simply saying “peace, be still” He can calm the
strongest wind
So now I´ll never sorry when storm clouds come my way
I know that He is near to drive away my fear, and I
can smile and say


Peace, peace, wonderful peace. Coming down from the
Father above

Debbie Bennett on January 21st, 2009 at 8:15 am #

A little more perspective that I thought might help…
I also follow another family that lives near me. Their son is battling cancer and the mother’s spirit is just unbelieveable. I invite you to check out their caringbridge site and see what I mean. Let me know what you think


God Bless,

Megan on January 21st, 2009 at 8:16 am #

Hi Doodlebug =) I am glad that things are going well with OT and PT.. Josh,Tina, and Kelly when the storms come for whatever reason look for those life vests! All the people some you may not even know are all around you with love and prayers and will never let any of you drown.. Remember we are God’s tools so he is the lifeboat but we are the life vests =)

Anne & Bob on January 21st, 2009 at 8:17 am #

Tina, Josh & Ella, what a blessing you are to all of us in constantly reminding us to be in touch with our Lord. Thank you!

Williamsburg on January 21st, 2009 at 9:03 am #

Wish I knew what to say besides we love you… Guess there’s not much more except knowing that He loves you all even more. Thank you both for being real. You’re in our hearts and prayers. XOXOXO

Auntie Shannon on January 21st, 2009 at 9:22 am #

Ella is such a Godsend.


Eve Johnson on January 21st, 2009 at 9:56 am #

Wests, you are so so so loved. My heart cries out to God on your behalf with both pleading and thanksgiving.

Lisa Tufano on January 21st, 2009 at 10:03 am #

Ella looks so great! Thanks for posting so many pictures. I know it’s been a roller coaster with trips to the hospital lately but this little girl is stronger than ever, and you can really tell it just by looking at these candid shots. I can’t even imagine what it must be like to see your baby enduring such physical hardships for so long now… especially when so many people who are not helpless and small take their health and strength for granted every day. Ella is strong because her mommy and daddy are strong. Your love for each other is stronger than any Gordian knot, and that is what matters most.

Lisa Correia on January 21st, 2009 at 1:47 pm #

Oh man guys!! You are amazing and give us all perspective!! I am right here in Denver…please let me know if there is anything I can do to help you guys. My babies are all in school now and really am more available than I have been in 17 years!!! We love you guys and will continue to pray for the West Family!!

sherry martinez on January 21st, 2009 at 2:52 pm #

I wish I had the right words to help you with your pain. all I can say to you is your not alone and there are others that do know how you feel, watching your baby be sick everyday is very hard. Ive written to you guys before but I would like to offer a ear to you both if you ever need to talk. sometimes its nice to talk to someone that can truly relate. my heart aches for you and Tina as I do know first hand what it is like to care for a very special baby. your blog has always given me hope when I thought there was none.I am a better mother to cayden because I know I’m not alone. so thank you for putting yourself out there to the world. as I talk to god today I will ask him to put peace in your heart. Love sherry and baby cayden

Jennifer Harris on January 22nd, 2009 at 9:34 am #

Psalm 22
& hold on to HIS unchanging hand…our prayers are with you.

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