Looking Ahead

Its been a good year. Actually it was a great year. One that we could hardly dream of ever having, but still always hoping it would come our way. In just a few short days we will be celebrating a year away from UNMC. I can hardly believe it. A whole year!

The first six months of the year were full of local and semi-local hospital stays, side effects, line troubles, multiple surgeries, and bowel rehab, but the moment we stopped giving her the "drug" her life changed and so did ours. It changed so very much.

I'm looking ahead with much anticipation. Looking at 2010 to be "the" year. Dave and I are concentrating on the good and doing our very best to not look at or discuss any of the bad. It feels good to be at a place in her life that we can stay focused on her progress. Although it comes painfully slowly we are so aware that IT IS PROGRESS. She is as happy as she's ever been, so full of life and personality. She laughs and giggles freely and so seldom signs to us that she is hurting or in pain. More often than not the only time she signs "hurt" is when her feelings become hurt from being told no or that she must wait a moment. That cracks me up. The whole "you hurt my feelings" thing is just funny to watch as she pulls every trick out of her hat to try and get what she wants. Truth be told 90% of the time she gets what she wants so when she shares that we have "hurt" her feelings it does bring smiles to our faces. What a personality our tiny gherkin has!

Ash still requires tube feedings 24 hours a day and does not know how to bite or chew food. She eats somewhere between 200 and 400 calories a day of baby food by mouth. Ash still does not speak. Her voice is silent except for laughter, crying and a little babbling here and there, but I truly believe it inside of her. Somewhere. She signs her wants and needs. At times signs just to be "chatting", and signs when "reading" her books to share with us what she sees on the pages. She can stand while holding on to our hands, her parallel bars, the arm of the couch, etc. She can take steps in her bars or while holding onto our hands. I realize that by normal standards it doesn't look that good, but when I see her struggle to take steps across the rug or along those silly bars its absolutely beautiful. Like I said, its progress. Slow and painful, but still moving more toward the goal of walking than away from it. I don't see that her braces have improved much of anything for her. We had high hopes that she would take off once she had them, but they haven't really made a difference. She "walks" just as well with them off as she does with them on. For now we continue to put her in them daily in hopes that they are helping in some way. She does move freely about the house on her bottom. Its really amazing to see how she has adapted and how she has figured out to scoot around on the floors. Each day I'm reminded that choosing to not have any carpets in the house was the right decision for her. It has given her great freedom. I love it when I go to her nursery to check on her and she's NOT in there. Just makes a smile come across my face. She loves her chair. Her favorite thing to do is honk the horn over and over and over again. She has learned to drive it forward and backward, but still refuses to stop. She drives the FURNITURE all around as she "bulldozes" the couches and tables and chairs out of her way. The scratches along the walls and the floors make me crazy, but I sit still at night and stare at the beauty of each new scratch realizing that they represent freedom and independence for my daughter. We have not figured out how to equip our vehicle with a lift of ramps just yet. There are several options in all different price ranges and we just aren't at the right place to make it happen yet. The chair weighs more than 300 pounds and it takes Dave and Blake both to disassemble it and load it in the car. There is no way I will ever be able to take her to her appointments or out of the house in it at this time. Its just an impossibility. Most importantly though she is amazing and her life is still miraculous. Its fragile and can change literally from moment to moment, but the period of stability we have been blessed with the last 6 months has been such a blessing. Such a gift.

Tonight we anticipate celebrating the new year together in our home for the very first time since before Ashley Kate's birth. Nothing special planned. Just a quiet night of reflection on the goodness of the Lord and watching our youngest play as late as she possibly can. Then I plan on snuggling up with Dave on the couch and just being still as we anticipate together what God may have in store for our family this next year.

Its been a good year and we look forward to the upcoming year. Wondering where it will take our family as we make our way along the journey of transplant. I pray your year was blessed and that your celebrations will be memorable. God bless. Trish

Ashley Kate...

and...

the Big Guy.

She finally met him...on her own terms...happy...healthy...home.


All I can say is "What a difference a year makes!"

From our family to yours...

Merry Christmas

So much to share...

So many traditions...

From matching p,j.'s

To decorating cookies...

Gingerbread House competitions and...

Stocking stuffing...

Reading of the His story from the book of Luke...

Visits from "Nanny Claus"...

So much more.


My prayers are that your holidays are just a sweet as the one in our home this morning, although many of our family were snowed in and unable to come, we are grateful for His blessings and the gift He gave so long ago.

As our four year old scooted from room to room underfoot, sat on Santa's lap, and "helped" me wrap the last few gifts, my eyes filled to the brim and the tears trickled down my cheeks. I know this year has been a gift. One I'll never take for granted, memories made I'll never forget, and lessons taught from the hardest battles we've ever faced. His will is not always easy, but its definitely where I hope to always find my family in the middle of.

Remembering where we've been on holidays past, the friends we've made and those we've lost along the way, we are keeping them all close to our hearts this Christmas and wishing each and every one of those families the Merriest of Christmas'. May Christ be close to you today.

Love,
Dave, Trish, Blake, Allie, and Ashley Kate

Join us...

...as we pray for strength for our transplant friends, the White family. My heart is broken over the turn of events for sweet Emerson. She was so close. So very close to having Christmas at home in Colorado with her big brothers and her mommy and daddy. Please remember them in your prayers this holiday week. From what I can tell she is being air flighted back to Omaha tonight. You can read her journal at cotaforemersonw.com

Waiting for Santa...

...from inside our house this year!

Tomorrow afternoon Blake, Allison and Ashley will go see Santa together for the first time in her life(outside a hospital room). I'm so excited! Not sure how much she's going to like the big guy, but no matter what it looks like I can assure you I'll buy that silly photograph just so I can say "we did it, she got to see Santa, and here is the proof". The big kids have agreed with smiles on their faces(and on their hearts too I imagine) to go along, sit next to him, and hold their baby sister if need be so that we can all experience Santa with Ash. She has no idea or concept who he is and thats ok with me. I'd rather her understand Jesus anyway, and its my hope that some how, in some way, some day she might.

Its 5 am and for some reason Ash has yet to fall asleep. So she and I are awake, planning all that we would like to accomplish, and hoping to at least get a couple of hours of sleep some time today.

Hope the holidays are in full swing at your house. Enjoy your day! Trish

All I want for Christmas...

I've already been given! It is truly amazing to be sitting here in front of the fire just five days till Christmas. I am truly blessed. I couldn't imagine wanting anything other than what the Father has already given me this year. Nothing wrapped in paper and bow could ever, ever mean more to me than that four year old beauty smiling at me from across the room. How did we get to this place? There are moments I'm too afraid to mention where we find ourselves, then there are other moments when all I want to do is shout it from the mountain tops. We are here! We are home! We are together! We are blessed!

It has been such a blessed season for our family. I find great joy in the simplest of Christmas traditions. I am enjoying them all. Just to have the opportunity to shop and wrap gifts with Allison, or to listen as Blake "sings"(Lord bless his heart for trying!) carols as he washes the dinner dishes, or to giggle as our Ashley sneaks ornaments off the bottom rows of all the trees in the house. She is more than ornery! I love sharing with Dave each night all the goings on around the house while he was at work.

Home is my favorite place in the world. The four walls that house my little piece of the world bring such peace to my heart. Especially at Christmas time. Ashley Kate stole our hearts the moment we heard she was born and since that very moment I have longed for home more than anything else. To know that this is the place we all come back to each day after we've run here and there, to settle in for the night, to connect again, and to care for each other warms my heart. Dave and I talked about "going home" over the Thanksgiving holiday and neither of us have ever felt we had a "home" to go back too. He moved around so much during his childhood and my home fell apart when I was very young. Our desire is to give "home" to Blake, Allison, and Ashley. To provide a place that they will return to over and over and over again, to make memories in , to feel loved in, and to know they are welcomed in. On this earth I want nothing more than to give that to my children. For this reason I wake up each day and do all that I do. I pray I'm doing all that He desires for me to do with those He has trusted me with.

This Christmas I won't be unwrapping the greatest gift of the season. Instead I'll be waking her up. I won't be waiting for Christmas morning to arrive before I get to enjoy my gifts. I'll be answering the knocks at the door as they all come tumbling in. I can't wait to have our home filled with the beautiful chaos that comes along with lots and lots and lots of family. I'm smiling just imagining what our home will hold in just a day or two.

As I shared with Dave when he asked me what I'd like for Christmas... I've already gotten it. Our baby is home for the holiday and my sisters are on their way. I truly don't desire another thing in the world. Its going to be a blessed Christmas.

Rub a dub dub

Its only 8:30 and guess where the gherkin is? On the floor of the bathroom! AGAIN! I can't keep her out of there. If you've been with us for any length of time you might remember the days when Ashley Kate was TERRIFIED of baths? Yeah, well those days are LONG GONE. She wants to bathe every day, all day and all night long. Not sure what she loves about them, the water? the whole getting to be naked thing? or the fact that her bags and tubes are removed? Whatever the draw its getting almost comical.

I spend my day pulling her out of Allison's bathroom. When the door is closed she knocks and bangs as if she were 14 waiting on her turn. She slings a slur of curses with her cries and I can only giggle as I try and imagine what she is yelling at that door.

Late last week I had removed her from Allie's bathroom for the oh lets just say the 100th time. I shut the door and took her back into the nursery. She was quiet for a while, so I didn't worry. I just thought I had finally won the bath battle of the day. When I went to check on her to see what she had decided to play with I stumbled upon my four year old, sprawled out on the hard wood floor, in front of the bathroom door, with her pants wiggled down to her ankles, and her diaper unfastened! As I began to giggle she looked up at me and signed, "BATH" with more attitude than I have probably ever witnessed from her. I was laughing so hard I was crying. I had NO idea that she could remove her own clothes. So of course I was proud. What mom wouldn't be.

Well, guess who's banging on the bathroom door? Here we go again. I wonder how long this little fascination is going to last? I just wonder. Wouldn't it be nice if we had nothing to do but soak in a tub all day long. Well, sweet Ashley, life doesn't work like that and you've got responsibilities just like I do. Your therapist will be here soon.

Have I shared with you how very much I love this little girl? Just thought I'd mention it in case it had been a while.

"What does she have?"

To the kind lady behind the counter at the dress shop, I apologize. I'm so sorry I was stunned and speechless. As soon as I left your shop the answers to your question flooded my soul. How I wish I would have shared with you, but I needed to make my exit before the tears fell from my eyes.

Ash doesn't have anything. I mean there is no label. No diagnosis. No disorder or disease. I wasn't sure how to answer your question.

As I left the parking lot I wished so desperately that I had had the courage, the poise, the presence of mind to have answered your question more appropriately.

"What does she have?"

Please let me share.

She has life.

She has breath.

She has a healthy liver.

She has a functioning bowel.

She has eyes that sparkle.

She has a smile sweeter than any I'd ever seen before hers.

She has a mommy.

She has a daddy wrapped around her little finger.

She has a big brother who adores her.

She has a big sister who loves her so very much.

She has four years of hard won battles to her name.

She has a will to live.

She has a strength that I can only admire.

She has a Saviour.

She has a home.

She has grandparents, and aunts, and uncles, and cousins, and friends, and prayer warriors, and a community.

She has a teacher, a team of therapists, and a horse who work miracles with her each and every week.

She has a donor.

She has JOY.

She has a story.

Ashley Kate "has" so very, very much. She has so much more than anyone in her earliest of days would have ever dreamed she could have.

It still shocks me when I realize that people do notice she's different and therefore they are curious about "what she has." I don't know when it will stop shocking me. I called my sister and asked her if it was really that noticeable. I needed an honest answer. I needed to hear it from someone whom I knew loved her despite her difference, but yet was still able to tell me the truth. In our eyes we see Ashley as perfect. Not different. Not anything other than wonderful.
As I listened to her words the tears did pour from my eyes and I said, "I would give anything for her to be like every one else." Then she said this to me, "I wouldn't. I wouldn't want her to be any different than who she is. For if she was anything different than exactly who she is we wouldn't be the people we are today. Its her differences that changed us. Because of "what she has" God has made us all different than who we used to be."

See why I took my broken heart to my sister? I knew she would help me find perspective. I also knew she would allow me to cry my tears over the hurt that accompanies the joy parenting our sweet Ashley brings.

I'm still looking for the right words. Still trying to figure out how to kindly and appropriately answer those who are curious about my beautiful girl. The cashier was not unkind and not out of line. She was simply curious and inquired. Its ok for people to do that. It really is. I think I would rather them ask than ignore and pretend she's not there. I'd also rather they ask than pass judgement on her behaviours.

"What does she have?" Such a difficult question to answer in a brief moment. I'm still working on it.

Snug as a Bug

Sweet Ashley Kate is still snuggled up in her bed. Its Wednesday and that translates into sleeping late for her. Every other morning of the week she has to be up as the older kids leave the house at 7:30. She looks so comfy this morning cuddled under her quilt that I'm tempted to try and climb in next to her. I love to watch her as she sleeps. All of her "baby" look has disappeared and what I see lying there is the most beautiful little girl. Her long lashes, tiny nose, messy hair, and pink lips are still as lovely as they were as a baby, but something about her look has changed. Maybe the long legs that extend all the way to other end of her crib? Not sure what it is, but she has definitely grown up. Another thing that has stayed the same? The "classic" Ashley pose with her hands behind her head. Every time I see it I have to smile. So many long, painful days in hospital rooms made a little brighter by her "classic" Ashley pose. It always made a smile creep across my face.

My sweet girl opened her eyes yesterday morning as I whispered good morning and the first thing she did was sign "frog". Yes, I said "frog". Her first thought of the day? School. She knew that if I was waking her early that her teacher would be here first and in her teachers bag there would be the frog toys she gets to play with. It cracked me up that her first sign with sleep still in her eyes would be "frog". Not mommy, not good morning, not up, but frog! She's so very smart. Early mornings=school and school=frogs. Thus you have frog as the first sign of the day. Just her way of letting me know she knew what day it was.

Life is so peaceful and blessed right now. Our home is our favorite place to be. Evenings in the family room with a fire glowing, candles flickering, tree lights flickering. I'm savoring every moment. Our schedules are busy. They are very busy. I know you all understand what thats like, but once we all arrive home a peace just settles in. Having Ash here, so strong, so happy, so full of life has been so healing to our family. I can't describe the feelings that seeing her play across the room from me bring to my heart. Its so very hard to put into words. Nothing short of amazing. I love listening to Allie talk with her from outside the nursery door. I love watching Blake scoop her up out of the crib because she tugged on the tail of his shirt as he kissed her goodnight. I love how Dave goes to find her, wherever she is, the moment he walks in the door. I love brushing her long hair and smelling the sweet smell of her skin each day. I'd be so happy and so grateful is life never changed for us again. If we could just stay in this place. All home, all happy, all together. How blessed we have been.

I know I need to jump in the shower while my little one is still sleeping, but I think I'd rather be wrapping gifts. One of my favorite things about the holiday. Coordinated packages under the trees. Just makes me happy. Something about paper and bows. Hand made name tags and specially chosen contents. I'm doing my best to stop a little each day and just enjoy the sights, sounds, and smells of the holiday. Even if I only have five or ten minutes to sit in the family room to enjoy, I'm giving that gift to myself. Home. My favorite gift this season.

Nothing I unwrap on Christmas day will top the gift the Father has blessed me with this year. Having Ashley Kate home where she belongs. So amazing, so precious, so treasured.

Enjoy your day. Take it all in. I know I plan too. Trish

Three down...

Only 9 more to go!

Ashley's schedule is insane! She's growing, learning, getting stronger and stronger so I KNOW its worth it, but there are days when I wonder if we can keep this pace up or not. Yesterday, we got three sessions out of the way, today we only have two, tomorrow? I'm not sure I'd have to look at our calendar, but by Friday there will only be one left and then we can relax over the weekend.

Add to all of that 6 basketball games this week(which I am so blessed to be able to watch all of them! I didn't think I would get too, but some cancellations on one schedule made it possible =), 4 practices, and hitting lessons and it makes for a very tired mom/taxi driver/ fan/ coach.

I really, really want to take some time to post pictures of Ash in her chair, in her braces, in her Christmas outfits, etc, etc. I'm hoping by tomorrow evening I might get to do some of that. She looks amazing. Her hair is so long and pretty. Her eyes are twinkly. Cheeks are rosy. I just love her so much and can't wait to share her with you guys.

By the way my girls team both won last night and all but two girls on each team scored baskets. I love that! They are working so hard and its paying off. We are having a great time in the gym and I'm feeling so blessed to be home this year. So blessed!

Its time for Ashley's home bound classes to begin, so I'll catch up with you all later. Have a blessed day.

Finally...

"Finally!!!...I've only been working on this for EIGHT years!"

That's what she had to say about it with the biggest grin spread across her face. I loved it! She's so right. She's been faithfully working since she turned 4years old. I'm so excited for her and all her team mates. The Texas Pride finished their local season in first place qualifying them to travel to Garland, TX this weekend to play in the tournament of champions.

Allie is so looking forward to this weekend. We are leaving this afternoon to all travel over and watch her do what she does best. Blake gave up a youth weekend to go along with us to help watch Ashley Kate in the RV so that Dave and I can see every single minute of play. He's really proud of her. In Blake's world he's done lots of traveling for championship play. Its what he does. Most weekends. More often than not he and his team mates are playing some where for a championship title. I know he understands the importance of this for Allison. She's an amazing player. So much so that even though she's been resisting travel and tournament play for years, I think she's starting to realize that's where she needs to be. We don't push. We don't force. As their parents its our job to give them opportunity and encouragement to pursue their passions. I sit back and watch her play the game she loves and thank God for her health, her able body, her ability, and her fearless nature. Its so fun being her mom! So fun!

This weekend its all about Al. I think its ok to give them those moments every now and again. Not to make a habit of it, but to let them know that we are there to support their dreams no matter how big or how hard they may seem. She's not quite 12 years old, but she's already dreaming of high school and college play. If I know anything about my daughter its this...she's stubborn enough to make her dreams come true and she won't stop until she's done it. I admire that about her.

The Texas Pride will play in three games on Saturday and if they are good enough they will advance into play on Sunday. I'm not sure what will happen, but I am sure she'll have a great time. I kind of think Dave and I will too as we watch our Allie be Allie. I sure love this girl!




We love you Allison Brooke, and you can bet Mom and Dad will be cheering for you from the side lines. Have a great time kiddo!

Look Closely

Can you see the "gap" between her bottom teeth? She's proudly displaying her newly lost tooth. Yep, she lost them both and the permanent ones are slowly moving forward. I would have never dreamed she would lose her first teeth at 4 years old, but I have to admit that she's about the cutest little "toothless" baby I've ever seen!

The "store"...you know the one...

that we all HATE to go into...but seem to ALWAYS find ourselves in? Yeah, that one, is calling my name.

The fridge is empty, I mean really empty(I cooked the last few eggs for dinner last night not by choice but cause thats all that was in there), the cabinets are too, and the kids are tired of eating out. I know I'm going to have to go to Walmart sometime today, I just don't want too. Really, I don't.

Ash has one more therapy session this morning(her third hour for today), then I've got to take lunch to Al at the school, coach PE, and then basketball practice until 5, get Blake from his practice at 5:30 and over to hitting practice by 6:30, bring them all back home, pick up something for dinner(like fast food again because they will all be STARVING by this time and not willing to wait till I make it back with groceries) and then I might stumble into Walmart to shop so that I can refill the empty fridge and cabinets.

Even though I know I'll be tired by the time I get there I'm trying to stay focused on all the blessings in my life. Things like being home to shop for my family, having a nice warm car to drive to the store in, having funds in the bank to purchase groceries with, having a beautiful home with cabinets to fill, and having a family who will be singing my praises as I pull into the drive with bags of their favorite foods.

Yeah, I think its going to be a good day. Who wouldn't want to go to Walmart when the ones you are going for are Dave, Blake, Al, and Ash? I must have been crazy for dreading it all morning long.