Rainy Day

Its wet outside today. Too wet to do the running I had planned for the day. Rain and wheel chairs don't mix too well so it will all have to wait. I'm disappointed for Ash though because even though I may enjoy having a day to stay inside she was planning on being able to get out today.

My silly girl LOVES to leave the house. It matters not WHERE we go, but simply that we DO go. She cracks us up. The minute we get into the car she rolls the window down. She's so quick at it now that she gets it down before I can get them locked! You should see the smile on her face as the wind blows back her hair. The older kids have a hard time complaining about the temperature or the wind inside the car simply because of the joy she expresses from rolling that window down. Hard to deny her such a simple pleasure.

The only thing I really needed to grab today was more laundry soap, but I suppose the laundry can wait until another day. Good excuse? I think so.

I'm working on taking down and packing away our holiday decor this week. Pretty sad around here. Makes the house seem so empty. I always have such a hard time when this time comes, and I think it boils down to the passing of the milestone I was working toward in Ashley Kate's life. If I don't have something like an event, a date, a holiday, etc. to focus on making it to then the harsh reality seems to slam against my heart so very hard that I feel knocked down. I have to have a goal. I have to know we are working toward this or that in order to stay focused on her future and not stare into the face of transplant. It may sound ridiculous, but for me its the way I've learned to get from day to day without falling apart.

One thing I know for sure is this...bringing her home was the VERY BEST DECISION we have ever made. She has come back from the horror of it all and has lived with a joy that I find indescribable by words. She is alive. She is thriving. She is strong. She is happy. Seriously, it all pales in comparison to those things.

So many times I am asked "what are we waiting for" and so many times I can't really formulate an answer to that question. I simply stare into the twinkling eyes of my daughter and know that this is not the time to go. Its just not the right time. I can't answer in words. Its just a feeling. If you could see her and know her the way that I do I think you might understand, but to put into words on this screen the why's of it all...I just can't make anyone understand.

We've been given this time with her here at home and I wouldn't trade a moment of it. Not a single moment that has been transformed into memory. The rainy days of being stuck inside, the car rides with the wind blowing back her hair, the holidays, and the every days. Each and every one has been a gift to this family. We recognize that and we know it won't always be this way. It makes our family grateful. On a level that I'm convinced we would have never experienced had we been handed a struggle free life with our littlest one.

I wish so desperately that the lessons hadn't required the high price that they have had attached to them, but I know He's grown us through the paying of it. My Blake...My Allie... they wouldn't be who they are had they not known how to love My Ashley. Neither would Dave or I be who we are.

The Goings On

I'm settling into this new pattern of holding on to most of my thoughts rather than spilling them onto the "pages" of this beautiful place. It had become such a huge part of my life, almost a daily routine to come here spill it and then walk away. I'm not sure I like this new way of keeping it inside, but then again I wasn't sure almost 6 years ago that I'd ever like the sharing of it either. Nothing really happened to cause me to change this habit. Seriously, nothing was said. Nothing was done. I just find it easier at this time to hang onto my thoughts instead of sharing them. No real explanation. No real reason.

Life here in our home has been busy, busy, busy. I prefer it that way. Not a lot of time to sit still and dwell on the things I cannot change. The things I don't understand. The things I wish so desperately were different. My teenagers keep me running here and there most every day of the week. We just arrived home from Allie's volleyball tournament in Dallas. So much fun to watch our girl do something she is so good at doing. Dave and I were visiting today as we watched her play and amazingly said we think she may play volleyball in college rather than soccer. NEVER thought I'd say that, but she's really, really good at this volleyball thing. I think we've decided not to play another year of club soccer and who knows if she'll make the high school team this may or not. Even if she does, she's not willing to give up basketball in high school so she will be splitting the basketball and soccer season's and that's a really, really tough thing to do. She's still on the fence about trying out for high school cheer. If she does and makes it then her schedule will officially become impossible I believe. Not sure how to make her slow down or choose between all the things she loves.

Blake's basketball season has about 3 more weeks in it and Friday night he played AWESOME. Seriously, one of his best game ever. We were so proud watching him. Playing basketball has basically "frozen" him from being able to try out for baseball so he will miss try outs this Friday and to be honest that really sucks. Plain and simple. It puts him behind the other players, but I'm not too worried. Blake always land on his feet. No matter what the obstacle he has the ability to make life work. I'm very, very proud of who he is. He is a great baseball player and this few weeks of "freezing" him out won't determine his career. He is working very hard and has been all year. He's hitting well, throwing harder than ever, and pitching great. He leaves basketball practice and goes to hitting or pitching lessons every week. He thrives on all the hard work. He's happier than ever. Enjoying dating a beautiful young lady. Making it all work. He remains an amazing kid. An absolute joy in my life.

Ashley Kate is soooo sweet. She's soooo fun! Soooo silly! I laugh every single day at that little girl. She has grown and matured so much in the last few months. I looked at her tonight and couldn't believe how beautiful she was. Her hair, her eyes, her smile, her complexion...all so beautiful. I love her. She's had a cold the last couple of weeks making mornings and evening a little rough on her, but during the day she is absolutely delightful. I've noticed some changes in her. Like her need for rest. She sleeps a lot. She seems to need it. I allow her to sleep as late as her body needs knowing that her liver is struggling to process the components of her TPN. I'm taking life as it comes it with her. Our days are happy. Simple. Sweet. I don't bring too many people in to work on this or that and I'm ok with it. She is too. Ash is the happiest, most joyful, person I've ever known or ever loved. She makes us all happy. Even when the day is hard she has the ability to bring a smile to all of our faces.

We are still searching for a nurse. Someone to sit with Ash a few hours a week allowing her to rest rather than do all the running I do. Although she loves to go, its physically demanding and wears her out. Insurance is requiring an RN and that has made it a little harder to fill the position. Dave and I would prefer to bring in the nurses that already know and love Ash, but haven't figured it out yet. I know it will happen if its the right thing to do. If it doesn't happen then its ok, we will make it work.

I guess overall life around our home is what it always is. A mixture of mostly good days, with just a sprinkling of bad. The children are all happy, and as mother I don't know that I could ask for much more than that. I love them like crazy and wouldn't trade our crazy life for any other. Hope your all well. Hope your families are blessed. I miss sharing pictures of our sweet Ashley with you, but I'm still without a camera. I can't remember a time in my life when I wasn't snapping photos on a daily basis, but it is what it is. Hoping to get it repaired or find a new one in the next few months. I'll write again soon. Maybe someday this will become that daily place I can come to again. I sure hope so. There's so much swirling around in my head and my heart.

Listening

Some nights I like to sit here in the dark and listen. I can feel a smile spreading across my face and then across my heart. Her giggles filter in from her bedroom. The sound of her laughter is surely the most wonderful thing I've ever heard. The MOST wonderful!

She's happy.

So very happy.

For that...I am grateful.

I was driving home tonight from watching Blake play basketball, and I realized that she's not hurting. Not now. Not anymore. I'm grateful. All I could do was smile as I whispered to the Father how very grateful I was for that.

She feels good. She has no owies. She has no fear. She's not worried.

In my world it doesn't get any better than that.

The memories of those nights. The nights filled with pain in her tiny body, and the look of confusion in her eyes, and the helpless feelings that engulfed me are all still too real. Raw. Even after a year and a half, the memories bring me to my knees. I wanted more than anything to keep her safe. To make it all go away. To bring her home. The place that she loved.

Now...she's here...and I can't make it all go away...I can't keep her safe...but... I can sit here in this room and listen to her laughter as it breaks through the dark and I can be grateful.

And... I am. As I listen tonight...I am.

All is Well

Ash is well. She's been antibiotic free for 3 days now. Seems to be doing fine without them so far. Her last set of cultures have not grown out and we are very grateful. She's happy. Full of giggles. Joy abounding wherever she goes. She's simply wonderful and makes our hearts so very, very happy.

We are busy, busy this week. With school starting back up, basketball x 2 kids, club volleyball, and preparation for the beginning of baseball, its a full schedule.

My brother and his family are here for a visit. So much fun. Ashley Kate LOVES the attention of my 4 year old niece and my nephews. They are all so good with her. Always someone there ready to play ball with her, get her a drink, or push her around in her chair. We've laughed really hard and sooo enjoyed our time with them.

My heart is heavy these days and I miss the days where I don't feel the burden of central lines, transplants, and unknown futures. It seems as though I bounce back and forth between the ability to not lose focus of the minutes we are being given and the shattering decisions that still loom on our horizons. I can't think of it all without shedding tears this week, so I've been hiding from the journal in hopes of not letting it all spill out on these pages. I wish so desperately that things were different and that we had never needed that transplant in the first place! If I could have my sweet Ashley with all the other struggles minus the need for organs I think I might never ask for anything more. It simply couldn't be that way for her though and I'm doing my best to make it matter in my life. In some way this all has to be serving a purpose. Even though my heart is heavy and hurting these days I know He's working in our lives and blessing us with precious, precious time. I can't lose sight of that.

So, I apologize for the lack of updates. Trying to hold it together right now and not allow myself to be so vulnerable. Just feeling the need to guard my heart for some reason and I'm not sure why that is. Wanting to feel His presence in my heart big enough to overshadow the fears that try to hide inside there. Needing to know that His plan is going to be the best for all of us and that its really going to be ok even if it doesn't feel that way.

Thank you so very much for continuing on with us. I am still so humbled that you all love and care about us. Just know that when I'm silent its for good reason and that I'd never hide from any of you if Ash was struggling or failing. I know where the prayer warriors reside. I've seen you all time and time again approach His throne and lay at His feet on our behalf. I can't thank you enough for that. Never in a million years could I ever express how very grateful I am for your presence here.