Look up

Bathtime for Talitha is almost enjoyable again. She doesn't like to get in the bathtub but once started--and sitting down--she likes to play and then usually complains that she's not ready when it's time to get out.

It has been many months since she has been willing to let us cradle her head in our hands and lay her back in the water to get her hair washed. We're not sure if her ears are more sensitive now or what--definitely something. Now I don't even try to lay her back but instead just pour water on her head before applying a little shampoo.

Tali doesn't like to get water in her eyes. (I'm not aware of any child that does.) She instinctively puts her head down to protect her eyes. The head being down makes the water run right into her eyes. Of course that frustrates her...and me. So, I've been asking her to put her head up by saying "look up....look up at the ceiling." But that doesn't make any sense to her so she just keeps putting her head down ... and getting water and soap in the eyes.

I'm not one to give up easily so the last two times, I've tried showing Tali why the water keeps getting in her eyes. I have her look at me while I pretend to pour water on my head, first with my head in the "look up" position (where all is smiles as the water runs down my back) and then with my head in the downward, get-water-and-soap-in-the-eyes position complete with the imitative flustering and sputtering of the arms and head. She enjoys the demonstration and asks to see it again.

Well today, she finally decided to give her dad's crazy suggestion a try. When I said "look up", she did; and the water poured off her hair down her back instead of into her eyes. Both of us were delighted with the outcome.

At Easter time, I feel an even stronger, heavenward tendency to feel and express gratitude. "For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life." (John 3:16)

How easy with life's trials, challenges, and responsibilities to get road weary, troubled, and tired. My instincts at such times don't always serve me. Too often when I feel life pouring down on my head, I look down with fear and get a face full. My Father in Heaven invites me to "look up"  with faith as a better way to endure the cleansing He desires me to have.  "Therefore, lift up your heads, and rejoice, and put your trust in God..." (Mosiah 7:19) 

I'm grateful for His loving ways, kindness, and patience. He lives!

Look up!

February Tests and Physical Therapy

We have several things to report since the last blog post in January. But first, let me say thank you. Thank you to the Lord for His continuing mercy and grace toward Talitha and our whole family. Too many blessings to even begin adequately numbering them. And thank you to our family, friends, and neighbors for ongoing encouragement and prayers.

Tali is growing by leaps and bounds. Her hair is long enough now for Audrey to "finally" put a ponytail in--no matter how small it may be. When I see Tali's smile, it melts me pretty much every time.

Talitha is on a maintenance program that calls for blood work, MRI's, and Spinal Taps/Lumbar Punctures every three months. Thankfully, the February tests were favorable. No tumor, no cancer cells, improving ANC--i.e. her body's ability to fight off infection is improving. The doctor tells us it is definitely cause for celebration EVERY time it comes back clean.

Some days, the biggest challenge is to not take the miracles and blessings for granted. God is so gracious and good. When I stop to count my blessings, it takes my breath away.

Talitha was on a waiting list for the "Now I Can" therapy. The wait is over and she is now doing multiple physical therapy sessions each week. They are very optimistic the walking challenges will be corrected very quickly. We're optimistic too as we can already see some improvements.

One of the things they do with this therapy is tape Tali's legs with some special tape that helps her feel support towards a proper standing and walking stance. She wears this tape 24/7 (in the bath tub and everything). When it falls off, they replace it.

The therapy lasts for two hours each session and involves muscle massage, balance exercises, electrical impulse stimulation, and proper motion simulation/repetition.

Some of these exercises and activities are more tolerable than others. It has been somewhat of an emotional roller coaster for Talitha who is already dealing with being two. She is getting better but Audrey still has to leave the room and watch from behind the one way mirror glass so that Tali does not struggle so hard to be rescued.

The "spider cage" hooks 8 bungee cords to her little belt and provides support while Sergio, her primary therapist, works on her balance, coordination, and muscle development. As this progresses, some of the cords are removed one by one until she is standing on her own. Throughout, Sergio puts pressure or pushes on different areas to encourage an auto response reaction that trains her in stability. Think of it like a level you'd use in construction. Tali is tipped to one side and these exercises are helping bring her "bubble" back to the middle position so she won't walk crooked or lopsided the rest of her life.

We are in awe of all the Lord has inspired and prepared to bless His children and support us through trials of every kind. Talitha is a warrior spirit. She reminds us with her example that God has a plan, we're not alone, and all things are possible through Christ.

P.S. The Now I Can Foundation is a charitable organization that makes it possible for families like ours and so many others to receive life changing therapy for a fraction of what it would otherwise cost. They have their annual 5K run/walk coming up and all proceeds go towards helping children walk again. Here's a link to get more information and/or to participate in this worthwhile event:  http://www.nowican.org/runtowalk2011.htm

Sunshine

Already a month into 2011...how does the time go so quickly?!

Talitha is doing really well. Her hair is getting longer, she's got meat on her bones again, and she's constantly saying things that either have us in stitches or make us ask, "Did she really say what I think she just said?"

We take her to the first of three church meetings each week--Sacrament Meeting. But we still aren't brave enough to have her stay and play with the other children in the Nursery.  It's just so easy for her to pick up bugs when she's around people. She got sick a few weeks ago and that really scared us because of what looked like a relapse in development. Prayers, Priesthood blessings, and nutrition keep making a difference as God is making it possible for our little one to remain with us.

The miracles keep happening.

And the smiles and joy keep happening.

This past week, Audrey was at the store with Talitha. When they came outside, the sun was bright and the day beautiful in spite of the cold weather. Out of the blue, Talitha blurted with customary enthusiasm, "oh...there is sunshine in my soul!"

Yes, Tali...there IS sunshine in your soul. And you've made our whole world brighter because of it!

Merry Christmas and Thank you!

So much joy in our home!

The emotions are so close to the surface. Christmas has never meant more to me...because...Christ has never meant more to me.

Such a blessing to have all of our children together and sharing special memories of this past year and expressing our love for all that Jesus has done for us as we celebrate His birth.

We each gave Jesus a gift this year for Christmas. During a special hour on Christmas Eve before going to bed, we shared what those gifts were.We all cried as the gratitude just flowed.

How blessed we have been by the Lord!

How blessed we have been by each of you!

Thank you!



Merry Christmas!

The Miracle of Christ

I love Christmas!

I love that we have a huge celebration to commemorate the birth of Jesus Christ. My need for Christ has never been greater. And I'm thrilled to see more and more people turning to Him.

I have witnessed his power in my life and in our family and know that there is nothing He can't do according to His will.

It has been a very interesting, even inspiring last few days.

The news of the Provo Tabernacle burning down was shocking. I personally saw flames raging nearly a full day after the fire fighters had been pouring water for hours on end through their huge fire hoses.

Finally, 36 hours after the fire started, they were able to enter the building to begin the tedious process of finding the fire's cause and also examining the structural integrity of the remaining walls.

I was so moved to see a photo of the firemen holding a picture of Jesus Christ with outstretched hands. This was the first item recovered from the devastated building. The picture was completely charred except for the area immediately around Christ. Seeing this reminded me that no matter what may happen to the physical things around us or what may happen because of trials and challenges of every sort, it is Jesus that matters most. He has all power, wisdom, and strength. He is our Savior. He is our Rescuer. He is the giver of all life and all hope.

That's why Jesus is the heart and focal point of Christmas.

"For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life." (John 3:16)

Provo Firefighters look at a painting of Christ that was burned in the fire. The fire burned the entire image except the image of Christ near the center. Provo City Firefighters continue their work at the historic Provo Tabernacle after the building was destroyed by fire. Saturday, Dec. 18, 2010. (Photo by Scott G Winterton, Deseret News)

MERRY CHRISTMAS!

"Sparkalies" and Christmas Joy!

Talitha is LOVING all the excitement around our home about Christmas. From the music to the lights, she is fully onboard with this celebration.

Audrey has several nativity scenes on display around the house. I came in the kitchen one morning this week to find Tali playing with one of the little sets that she has adopted for her own. She loves little baby Jesus and likes to keep Mary close by taking care of him.

When it gets dark, she stands by the window looking at all the "sparkalies"--her endearing term for Christmas lights. It doesn't matter how many lights she sees. She just can't contain her delight. Sometimes we'll drive in the car and she'll see the lights in the neighborhoods and just about go crazy trying to take it all in. There's nothing like the enthusiasm of a child at Christmas time. I compare this enthusiasm of children to the words spoken by the angel to herald the birth of the Christ child:

"And the angel said unto them, Fear not: for, behold, I bring you good tidings of great joy, which shall be to all people." (Luke 2:10)

What if we really captured the significance of Christ this year? What if we got so excited just at the thought of Christ that we had to share our joy with someone or we'd pop?!
 
The more I experience His saving grace and rescuing power, the more excited I get to celebrate His birth. So when I see Talitha filled with more excitement than her little body can handle, I feel joy. Real joy.
 
So I say, let’s all join our voices this year with angels past and present in expressing the glad tidings of this sacred hymn:
 
Hark the herald angels sing
"Glory to the newborn King!
Peace on earth and mercy mild
God and sinners reconciled"
Joyful, all ye nations rise
Join the triumph of the skies
With the angelic host proclaim:
"Christ is born in Bethlehem"
Hark! The herald angels sing
"Glory to the newborn King!"

Persistence and Good News!

The results of the spinal tap are what we had hoped-- clean!

We are SO grateful Talitha's spinal fluid is cancer-free. The ventricles in Tali's brain are still enlarged but her head has adjusted to this and continues to process spinal fluid without assistance from a shunt.

She keeps us laughing now even when we don't necessarily want to be laughing. The other day there was a "warm dispute" happening in another room between two of Tali's siblings. Talitha--with her awkward walking--made her way into that other room and then in a serious voice asked "what is going on here?!"

How she has picked up so much, so fast and knows how to use it all in context is shocking at times. Not exactly what I was expecting especially after brain surgery and the mute-ism that came with it during those first scary days nearly a year ago.

I heard Audrey say in Church today that because of what she has experienced, she knows now that regardless of how bad or hard things get, Christ has the power to get you through it. That's why you can trust Him....completely. (She said it so much more eloquently it just brought tears to my eyes.)

I've been thinking lately about the many lessons that have come through the blessing of trials. I came across a quote from Napolean Hill that I'd read before but didn't appreciate as much as I do now. It shed new light for me on the scriptures that talk about the need for "opposition in all things" and the necessity to "press forward with a steadfastness in Christ" and to "endure to the end":

"There is no substitute for persistence! It cannot be supplanted by any other quality! Remember this, and it will hearten you, in the beginning, when the going may seem difficult and slow.

"Those who have cultivated the habit of persistence seem to enjoy insurance against failure. No matter how many times they are defeated, they finally arrive up toward the top of the ladder. Sometimes it appears that there is a hidden Guide whose duty is to test men through all sorts of discouraging experiences. Those who pick themselves up after defeat and keep on trying, arrive; and the world cries, "Bravo! I knew you could do it!" The hidden Guide lets no one enjoy great achievement without passing the persistence test. Those who can't take it, simply do not make the grade.

"Those who can "take it" are bountifully rewarded for their persistence. They receive, as their compensation, whatever goal they are pursuing. That is not all! They receive something infinitely more important than material compensation--the knowledge that "every failure brings with it the seed of an equivalent advantage!"

No matter what the trial is, no matter how difficult the road, none of us are alone. God will help us. God wants to help us. There is no end to His power and ability to lift us, heal us, supply us, comfort us, rescue us, and save us.

Now that's Good News!