Ashley's Story

She will leave fingerprints all over your heart

11/21/2007

Snowy Goodness

Only the Father knows how very much I love the snow, and only He could really see what a crummy place my heart has been in lately. So what does He do? I wake this morning to a BEAUTIFUL showering of large, fluffy, snowflakes outside our windows. What can make the PICU a lovely place? Being on the 5th floor and having the opportunity to watch the snow float all the way down to the ground. I am smiling. Sure, I can hear it know, "What makes you think the snow is for you?" Well, I just think that He cares that much about me and He knew what could make my heart smile. I'm sure it is serving other purposes as well, but for me it is bringing me happiness. Ashley Kate? she could care less and wishes I would have allowed her to sleep late rather than waking her up with my original, "Its Snowing" song. I can't wait for Dave to get here so we can watch it together. Snow just makes Christmas songs sound even better, don't you think?

Well, I think its funny how things change. It was only a few months ago that I began counting the days until we could start decorating for the holidays. Ash and I were sitting on the floor at home and we were talking about Thanksgiving and Christmas and I was telling her how wonderful it was going to be to have her home this year. She sat and played and pretended to care about all I was sharing. I was just so grateful that day as I anticipated how wonderful the fall and winter holidays were going to be this year. My goal was to make it more magical than ever for the kids since it would be our first one with all five of us together. Today my goal is different. My goal is air. Oxygen for Ash. That is what I am now concentrating on. She has made huge progress this week. From 10 liters down to only one fourth of a liter. She just has little ways to go. They are wanting to move us up a floor, some of us are wanting to move out. As always Ash will be safer away from the larger population of patients who have those yucky viruses. A decision will be made later today.

Many, many changes are being made. One of the biggest is a switch from her current immunosuppresion to a newer one that will be less toxic to her kidneys. It all seems like a trade off to me. The more I read about the new drug the more concerned I become. We are switching one set of trouble and issues for another. What do you do? Currently Ash's kidneys are struggling causing her to need more fluid which in turn causes her to become "overloaded"( only enhanced by another medication she is on) causing her to need oxygen support. The top priority for now is keep her immunosuppression at a safe level while we ease up on the stress it is placing on her kidneys. It is a difficult place to be in. The side effects of this new medication are ugly! but they really want to give those kidneys a break so we will for a while. Yesterday our surgeon told me, "She is in a tough spot. She has a history of PTLD( the lymphoma in her lungs) and of rejection. Thats is a fine line she is walking between the two." If you go down on her immunosuppression then her organs are at risk. If you go up on it then she is at risk for more tumors and lymphoma. It all makes me want to scream, and then I just become "ok" with it.

Living in fear is not an option. Parenting and making decisions for Ash based on fear is not an option. We have to just keep trusting and keep moving forward. So today I am enjoying the snowy goodness outside our windows. I am enjoying the happiness that spills over the phone lines from Blake and Allie's hearts. I am enjoying the knowledge that in about 13 hours Dave will arrive. I am enjoying this rosy cheeked baby and all of her attitude. I am enjoying the goodness of the Lord and the knowledge that He loves me enough to want to see me smile. Wish I could ship some of my "snowy goodness" back home to Texas for all my friends to see. Thanks so much for thinking of us during your holiday. Play a round or two of Sequence for me( I just LOVE that game), and know that you are loved all the way from snowy Omaha, Nebraska. Take care. Trish

27 Comments:

At 11:30 AM , Blogger Beckster said...

Trish,
I am so glad that you have been given what I am going to call your "little snow miracle" to lift your spirits.
I used to love to play sequence but I have not played it in a long time. Over the holiday weekend I am going to make it my goal to get up a game in honor of you, Ashley, Dave, Blake and Allie. Everytime I win I am going to say that one is for Trish and Ashley.
We have never met and I have never commented before but I want you to know that I check your journal everyday and just before I click to open I say a little prayer. Thank you for sharing your angel and you heart with us. Her fighting spirit and your words show me everyday the things in life we have to be thankful for. It is so easy to forget what we have because we are searching for what we do not. You remind me everyday that the best gift in life is sharing it with each other and for that I thank you.
Becky

 
At 11:43 AM , Anonymous Anonymous said...

Checking in on our favorite pickle. I'm so glad you got snow, we got our share in Pa several days ago.Continuing to send prayers for *Huge* things to happen for Ashley. Enjoy the holiday with your dear husband and sweet Ashley. Also praying for safe travels for Dave and wonderful memories made. Happy Thanksgiving and God Bless..Karen.

 
At 11:55 AM , Anonymous Anonymous said...

Hi baby, As you were writing about your wonderful snow gift from God, mommy was writing you a special note after the last posting. Since I don't understand how all of this works I wanted you to go back and read it OK.
It is about special little people! Love you babe, I'm going to go fold laundry now. Oh yes, I cleaned the deck yesterday, come home and lets watch the birds and squirrls with Ash!!!! Call me, I miss your voice. I waited all day yesterday to hear from you. I asked Allie if she would ask you to call me, she said yes but the call never came so I just kept on praying as I will today also. Nan

 
At 12:27 PM , Blogger Karen said...

I believe God made it snow for you. And I know He is glad your heart lifted for just a bit. Enjoy the gift and the knowing that your heavenly Father loves you so much! My prayers are with you today...

 
At 12:38 PM , Anonymous nikki said...

It's so good to hear you sounding so at peace. I too love the snow, but I'm glad God sent it to you instead to carry you through until David can be with you. I've only seen Allie a tiny bit b/c we had some fires to put out since they've been here, but I'm hoping the girls can come over for a while today. I'm also hoping ya'lls holiday will be very very sweet. Still praying for a Christmas miracle.

 
At 12:46 PM , Blogger Laurie said...

Isn't God Goodd? He just knew your heart needed some serious visual effects to go with the Christmas music that you love. I believe it was just for you and then if anyone else in the town enjoys it, that's good too. My heart is with you as the uncertainty of struggle goes on there for you. It blesses my heart to see the simple things that bless yours right now. Praying that this change in meds is what will turn things around for that little sweetie, and that the side effects do not touch her body, not a one! I just know that God has not taken His eyes off your family for one moment in all of this and want to continue to encourage you that with each setback you speak of here, your HOPE continues to grow more determined. Have the most wonderful Thanksgiving Trish, and may we all join with your family together, giving thanks ahead of time for the healing we ask God to bring to Ashley. This is my prayer this holiday, Healing and Home for you.

Love you girls, Laurie in Ca.

 
At 1:06 PM , Anonymous Davian's Mom said...

Hi Trish,
I am glad you are feeling happy. Snow always made me smile although being in that hospital. It is beutiful to watch and it does change our mood. It brings a sense of peace. It is 82 degrees here in Corpus Christi. We may get a cold front tonight, but that means 50's. Anyhow, I am glad Ashley is making progress. I will pray that she continues to do well.

 
At 1:18 PM , Anonymous Anonymous said...

Trish, God may honor your request for your family to see the snow. Our forecast for the DFW area is snow and or sleet for Thanksgiving night. That means furher north will have a better chance of it being snow! What a blessing it would be to watch snow together from different locations! (I still like John Denver's "same moon" idea of being apart but looking at the same moon.)
Still praying and praying. ML

 
At 1:22 PM , Blogger Elizabeth S said...

Your strength astounds me. Praying for you today, and praising God for your snow!

 
At 1:29 PM , Anonymous Stephanie - KCMO said...

Trish,
It's snowing in Kansas City right now, so I'm going to think that you asked God to send some smiles my way. Thanks for your update. Praying for Dave's safe arrival. Praying for you and Ashley as well. Love, Stephanie

 
At 1:34 PM , Anonymous Janiece Baldwin said...

I left Dave's office a little after noon and he is all smiles because he is getting ready to leave to come see two of his most favorite girls. He just beams when we talk about you.
He shared with me about the plans for Thanksgiving dinner and I think that is just wonderful. I know you won't be with your own family but it is so good to know you will not be eating at the hospital and that you will be with friends. I can't wait to hear about the dessert.

Praying for safe travel for Dave, for continued snowfall for you, Trish, for much fun for Allie and Blake with aunts, uncles and cousins in OK and for God's healing comfort on little Ashley and for her fighting spirit.

Praying also that God will bless your time with Dave and that it will bring renewing strength, comfort and peace. Have a great time together and know that we lift you up to the Father during this holiday time.
Much love and prayers~~~Janiece

 
At 1:46 PM , Anonymous Anonymous said...

Trish,

You continue to amaze me. You find happiness in simple things that I take for granted. I live upstate NY so we get a lot of snow...and everytime we can't help but complain.

I am so glad that the snow made you smile. Still praying for Ashley!!! And for Dave's safe travel.

-Jocelyn

 
At 2:32 PM , Blogger Gretchen said...

I'm glad the simple pleasure of the falling snow has touched your heart and eased your burdens if only for a moment in time. Thanks for sharing the update and for your steadfast example of trust and faith in Him. ((((hugs)))

 
At 2:36 PM , Blogger Lisa said...

I am so glad you are blogging again. I pray for miracles for your gherkin today and that she would be discharged. As I am away for Thanksgiving with my family, I think of you and Ash in PICU and say a little prayer for comfort and somehow a "Happy Thanksgiving". It's so wonderful to hear you be so thankful for those little things. Those are things we don't appreciate enough, having healthy kids and all. I am going to take some time today to smell the fresh air outside and think of you, Trish.

xoxo Lisa R.

 
At 3:02 PM , Anonymous Courtney said...

Checking in on you and yours before we leave for our own holiday: I am glad to hear that Ash is requiring less oxygen and am praying that she will not have the side effects of the new meds. Enjoy your beautiful snow (the foot we had here in PA has already melted away)with your little princess and your Prince!

We love you and are thinking of all of you this Thanksgiving. I love Sequence too and hope to play several rounds!!

 
At 3:18 PM , Blogger Davis family said...

What a wonderful blessing from heaven. I am so glad God smiled upon you today.

 
At 3:22 PM , Anonymous dee buchanan said...

Snow, It's one of my favorite things too. At the end of autumn, the trees are bear, the leaves are dead and ugly, the ground is wet and dirty. And then God....takes this beautiful white thing called snow, and covers all that ugly, dead, muddy stuff, and makes it beautiful to look outside again. Reminds me of my heart and his righteousness. It is like a beautiful, fresh, clean, blanket of snow over my ugly, sinful heart. Isn't God good? All the time....

Praying you continue to rejoice and find the blessings in this holiday season.

 
At 4:51 PM , Anonymous Grandma said...

The snow is falling and Jesus is calling me to smile for a while...
He loves us and shares and erases my cares for a moment in time...
I will praise Him today as He takes me away for a short rest...
Thank you sweet Savior for your precious favor - I'm truly blessed!

Hi Trish and Ashley - This just came into my mind as I read this post. God is so good to us, isn't He? Even in the midst of all our troubles - He remains faithful and gives us little glimpses of Himself to hold onto and to love. I miss you with all my heart and soul and so wish you could be with all the family this year, but the year isn't over yet and we are still praying and who knows - maybe it will happen for Christmas. Praying for specifics - please give our sweet little one big hugs and kisses from me! Loving you all the way from Texas - Grandma

 
At 8:52 PM , Anonymous Anonymous said...

Thanksgiving blessings to your entire family...and ceaseless prayers.

Kristi in Texas

 
At 8:56 PM , Anonymous Anonymous said...

Hey Trish,

The only thing I can add to such a nice journal entry is that you and Ash and Dave and the kids are loved right back by prople from all over the country, by all of us.
Happy Thanksgiving to you all.
M.

 
At 9:15 PM , Blogger Keri Ann said...

What a wonderful gift from our tender-hearted God! I'm so glad you're enjoying the beauty of it! Have a restful, peaceful night!

 
At 9:21 PM , Blogger Sunny Day Tag Girl said...

Snow...it is so peaceful!!! It comes down quietly and softly and it makes the air so crisp. To think that each of those flakes are completly different is just amazing to me. Wishing you God's PEACE this Thanksgiving. Hang in there his plan is just as beautiful as that snow!
Kori

 
At 9:39 PM , Blogger Connie said...

Longview is just rejoincing in cooler weather, where we aren't sweating all the time!!! I'm SO glad you have snow. I miss it so much, being a Colorado girl. God is such a loving father, I know he cares so much for each one of us. The snow miracle can be a blessing for you and 1,000 other people at the same time--whether they choose to receive it or not! God bless you & your family. We're still praying.

 
At 9:39 PM , Blogger Connie said...

Longview is just rejoincing in cooler weather, where we aren't sweating all the time!!! I'm SO glad you have snow. I miss it so much, being a Colorado girl. God is such a loving father, I know he cares so much for each one of us. The snow miracle can be a blessing for you and 1,000 other people at the same time--whether they choose to receive it or not! God bless you & your family. We're still praying.

 
At 9:46 PM , Blogger Julie said...

Wishing your family a Happy Thanksgiving. Praying for you always.

 
At 9:50 PM , Blogger Sun said...

HAPPY THANKSGIVING! I pray that you have an amazing day tomorrow and know that so many of us are SO thankful for you, Ashley, Dave, Blake, Allison and your entire extended family...you all have been glimpses of faith and love and hope through this journal. God is SO good! May He pour out blessing upon blessing to each of you...May His peace be a tangible blanket of protection these next days, weeks and months as you walk the road He has called you to walk. Much love - Sunshine

 
At 10:08 AM , Anonymous lori said...

Happy Thanksgiving! Keeping you in our thoughts and prayers today.

God bless,
Lori and family

 

Post a Comment

Subscribe to Post Comments [Atom]

<< Home