My Alphabet Of Gratitude...Letter V is for Valor!

Valor is defined in the dictionary as bravery, courage or boldness. Strength of mind or spirit that enables a person to encounter danger with firmness. Personal bravery. To be strong.

I have been blessed with seven glorious children. I love them all very much. They have all taught me many unique and special lessons. They have humbled me with their spirits, with their personalities and with their lives. Three of these children I refer to quite often as the Munchkin Trifecta. They are my trio of little people, my babies, my passion. It is them that I would like to thank for their valor. My faith teaches me many things about why my babies are here, what their purpose is, what their future is. You don't have to believe like I do to see how valiant these children truly are though. I am so very grateful to live in the time that I do. The internet is an amazing gift. I have been blessed through this gift to be able to share in many children's lives that have the same condition my trifecta has. Our group is refered to as Rhizokids. I see such valor in each and every one of these children's eyes. I see their strength in their smiles. I see their courage when they are faced with odds that would scare the bravest of men. I can feel their spirit and strength even through their pictures.
These children fight a battle everyday. A battle to simply survive. But most of the time you wouldn't know it by looking at them. They usually have a smile on their face and a giggle on their lips. I've seen them put into contraptions that give me nightmares, I've had to put mine in some of these contraptions myself! Any yet, they smile. They remind me to be a little more couragious. A little stronger, braver. If they can do it so can I! Right?
All of my children have had surgeries right after birth as most RCDP children have. Cataract surgery. Yuck. Seeing those huge eye patches on your baby's little bitty face is tear wrenching. They endure braces, splints, casts, and tubes just to name a few. Some have even had to have their tiny little hearts mended. Some have never left the hospital. To look into their eyes and see such strength, even in the littlest ones can be lifechanging. I often find myself telling my Munchkins that I would trade places with them in a heartbeat if I could. I wonder if I could handle what they do with the valor that they do. I don't think so, that's why God put me in this body instead of theirs. They have proven themselves, they are warriors. I am here to learn from them.
I also think of the many wondeful mothers and families of RCDP children that I have met online. I would also describe this awesome group of people as valiant. Most of us have had our children born to us, but some in our group have joined voluntarily so to speak, by adopting and taking care of these special children. This screams valor to me. To know what you are up against and to dive in anyway, knowing the future holds heartache. I'm sure if their little RCDP children could mouth the words "Thank You" to them, they would...repeatedly! But since they can't let me be their representative by saying how truly valiant you are.
To each of my special RCDP angels here and in heaven I say thank you for your valiant lives. Thank you for your strength and your smiles. Thank You for showing me how to fight and how to live. Thank you for teaching me what is important and what is not. Thank you for fighting this battle with all the joy that you do. I love each and everyone of you!
To my Trifecta, my Megan, Easton and Raegan, my heart swells when I think of you. Each one of you has such strength of spirit and heart. I can not imagine my life without you. I love you more than words could ever say.

My Alphabet Of Gratititude...Letter U is for Understanding!

I was at the grocery store with Megan when she was just a baby. A young girl in line behind me asked her Mom why the baby had a tube in her nose. Her mom was very kind and told her to ask me, I thought that was fabulous. The way the little girl looked at Megan as she asked, the pure innocent curiousity in her eyes, made my heart melt. I told her what Megan had in the best and least confusing way I could. Her mom thanked me and that was that. I've gotten very used to encounters like this over the years. I've never minded the children, and the adults with kindness behind their curiosity. I know they just want to understand what is different and unusual to them. I try to explain to all those who are curious just what it is like having a child with RCDP. The little things you don't normally think of, like being able to scratch your nose, Megan and Easton can't do. There is a whole list of things they can't do...it goes on for miles. It can be heartbreaking if I dwell on it. What I want people to understand, really understand, is what they can do. It's a list that is not so long but what it says is incredible. Megan, Easton and Raegan can understand. Simple. Understand what you say? Anything. Everything. I assume they know it all, hear it all, and comprehend it all. If I'm wrong, oh well. If I'm right, ask yourself this, would you treat them any differently? Not just my trifecta, anybody who has special needs, anybody who can't speak for themselves and put into words what they know, how they feel, what they want, etc... Would you talk about them as if they were in the room or not? Would you talk TO them instead of by them? Would you listen to hear if they had anything in response, in anyway? I've asked myself these questions many times. My little munchkins have given me many many moments to answer myself. I truly love it when I meet someone who understands how to treat my children. Someone who will look my child in the eye and speak directly to them. Someone who is not afraid to ask questions, someone who isn't afraid to touch them, hold them, kiss them. I've met so many of these wonderful people. My little angels recongnize their wonderful spirit and heart right away. I appreciate their kindness and yes, their understanding.
Understand that these children aren't that different. They need the basics we all need, love, shelter, food. They need to be played with, sang to, danced with, snuggled with...all the things every other child wants and needs. They need special things too like therapy and equipment, but those things are physical and I guess I'm talking more about the mental. Understand they want to be recognized and appreciated too. They want to learn and they want to see how excited you get for them.
Understand that these children are not vegetables. They are not useless, they do not simply exist. Please. Don't stare and say rude things behind back's because you think they can't hear. They can. Don't gaze at them with utter pitty and cluck your tongue because they will understand that too. Treat them as you would want to be treated. Drool isn't toxic. Dwarfism isn't contagious.

I am so thankful for all of you who do understand. All of you who have gone out of your way at times to treat my little muchkins with such kindness and understanding. When Easton looks at you with that little twinkle in his eye you will have no doubt that he knows you, sees you, and understands you! When Megan lights up at the sight of you and babbles with you for a while you will know how much she knows. When Raegan looks you right in the eye and laughs because you said your were going to get her there is no mistaking she understood you. I'm spending my life trying to understand them. I couldn't think of a better way to spend it!

My Alphabet of Gratitude...Letter T is for Therapists!

I have had the opportunity, through my wonderful Munchkin Trifecta, to meet many wonderful therapists. My children have worked and are working with physical, occupational, visual, and play therapists in the past 10 years. I have learned many educational things from them, including how the muscles work, what it takes to move this part this way or that way and why it's even important. Therapists come to my home just about every day of the week. They have become a part of my family in a way. Many of them have become dear friends. I know as much about their lives and families as they do mine. They have all come to love and adore my children and my children them. We have exchanged laughs and tears. We have watched as my children do the simplest things and have shouted in joy together over it. They have taught me how to do things I thought I would have to go to school for. I appreciate the time they take to listen to my children and what they are saying to them. They understand them almost as well as I do, in some ways better. I have been blessed with so many wonderful personalities, so much caring, and a great amount of knowledge through these awesome people I call therapists. They not only have healing hands, they have healing hearts. I can't imagine my babies world without them, I can't imagine having to do it all on my own. Doing therapy on my children myself can be heartbreaking for me, I am so very thankful I have their support and guidance. It is so nice to know on the days they come over I don't have to do that particular therapy on my child that day and it is such a great relief. I have come to find that therapists, at least the ones I know, go way beyond the therapy aspect of their job. They invest their whole hearts in the children they work with. I can see the love in their faces. The smiles my children give them are all I need to know they are happy with them and they love them too, even though at times they can make them cry. The work my little Trifecta have to do can be very hard at times. I marvel at their strength and endurance. I also marvel at a person who can do this type of work for a living. Traveling from house to house. From child to child, making them do things they really don't want to sometimes can be very draining I'm sure. I hope they know how much they are appreciated in my house. How much I love the work they do and how much I depend on it. I am so very thankful to live in a place where my children can even receive therapy. So to all of you therapists out there I say Thank You! You are loved and appreciated more than words can say...just as the Munchkin Trifecta!

My Alphabet of Gratitude...Letter S is for Stories

I love a good story. I love to read them and I love to listen to them being told. I enjoy hearing stories from anybody who wants to tell them. I enjoy reading stories to my children, some of them numerous times! I love the stories that the old folks like to tell about their youth and their experiences. I adore the stories children tell and the way they tell them. I love to talk and tell my own stories as well as hear yours. I enjoy Facebook and all the tidbits of people's lives and stories that I get. I can remember loving to read from a very young age. I couldn't wait to go to the school library and pick out another book. My favorite series from about the third grade was the Boxcar Children. Oh my goodness how I loved to hear the teacher read a little part of one of the books every school day. I could see everything she read, I could hear it and even smell the things she described at times. I was hooked. I had to read more. Anything and everything I could get my hands on I read. I would still be that way today if it weren't for the time constraints I have. So many other obligations I didn't have as a child! My children do know that every once in a while I will find a book that I just can't put down. They always seems to understand, mostly because they are readers and story tellers themselves. I love to read everything from fiction to reality, fantasy to horror. There is nothing like a good book to take me away from it all. Growing up in the south I heard many stories as I would travel around visiting people with my step father. I learned a lot just from listening to what other people had to say about their lives. I enjoyed their funny stories and their sad stories. I remember when I was 17 I decided to drive around the country to see as many states as possible. I would put audio books in the cassette player and away I would go, enjoying the scenery as I enjoyed a good story. I remember my Mom and I driving to move to Utah later that same year. I was reading The Stand by Stephen King as we were driving through Nebraska and Kansas. The people in the book were crossing through Nebraska and Kansas the same time I was...it was kinda creepy, particularly because it was a story told by the master of crazy weird himself, Stephen King. I remember being scared, and I loved it! So I say thank you to all of you who have shared your stories with me, I thank all the authors who have written the countless books I have read for sharing their imaginations with me. I thank you all for taking the time to listen to my stories. Like I said before, there is nothing like a good story to take me away from it all for a moment, to be transported in time and space to a different reality then my own is a very therapeutic thing at times, as long as I don't overdo it!

My Alphabet of Gratitude...Letter R is for Raegan

Raegan is my youngest. My baby. She was a surprise, but a welcome and very loved one. When I had my first ultrasound of Raegan she had her thumb in her mouth. As I had not yet had anything to do with my Rhizokids group, I did not have any other kids to evaluate Raegan by but Megan and Easton. Both of which could never put their thumb in their mouth. I knew Raegan was going to be different, but I had no idea how different she was really going to turn out to be. When Raegan was born I was shocked. I had really expected her to be without RCDP. I had to face the harsh reality of my dreams being flushed down the potty once again. I had to grieve, which I did and I had to go through the anger again, which I did.... It was horrible and I can tell you the third time doesn't make it any easier. In a way, it makes it difficult simply because I knew what to expect this time. I knew what I was in for and I knew what was in store for Raegan. Boy, was I right in some ways and Way Wrong in others!
Raegan has taught me that no matter how hard I try I cannot fortell the future. What a lesson to learn. All my life I figured I was psychic, I mean why else would I worry about the future? I must know what is going to happen right...wrong. Raegan has taught me what true perseverence is, what it looks like, even what it can smell like. She works her little body so hard it makes me short of breath just watching her. Raegan has no problem with being assertive either. She will tell you, in no uncertain terms, exactly what she is thinking and what she wants you to do, or not do, what ever the case may be. She doesn't have to use words to communicate her feeling effectively either, just about anybody can understand her when she has something to say. I love Raegan's smile, I love her laugh. I love the way she looks at me, focuses on me, and just lights up. I love the way she searches for her Daddy when he does her special whistle. Raegan loves to be thrown into the air and hung upside down. She loves to be bounced on the bed and twirled around in circles. These simple things make her so happy and she rewards me with giggles and dimples. I enjoy kissing her cute little piggy toes and watching her smile because she enjoys the game. I adore Raegan's fierce temper. It has served her well over the last 2 years. She is a fiesty one, I pity the fool who doesn't give Raegan her way. Out of all three of my RCDP children, Raegan is the only one I am absolutely sure would reach out and slap me, pull my hair, or scratch my face if she could. Megan gets her little heart broke when she is mad, Easton wants to just run away from it all, but Raegan is like a crazed cat, claws at the ready. I really do enjoy this part of her, it gives her the drive she needs to do the things that are asked of her on a daily basis. When I want her to push with her legs and she gets so mad, she pushes...haha! Therapy has occured!
Raegan is a very demanding child. She has constant needs that must be met, and she isn't very patient. I've chosen to view this as an opportunity to really work my muscles of patience. She has given me many opportunities to do this over the last 2 years. With feedings that go on through the night, to 3am play sessions, to just plain walk me around and entertain me all night episodes, Raegan has made sure to put her Mom and Dad through them all. I couldn't think of a better person I'd rather be learning with than Raegan though. One smile and I'm melted. I think of it this way, I honestly do not know when Raegan won't need me to get up through the night with her anymore, but as long as she does, I will. I will because of the day that I'm not needed anymore. Because of the day she won't be with me anymore. Because of the day I won't have her to hold and take care of. Today, I have my angel with me. Today, I am happy to do all she needs me to do, for I know tomorrow she may be gone. My Rhizokids group has taught me that all to well. One of our precious new Rhizokids, Adalynn, passed away. She was only 4 months old. Adalynn was the latest in a list of children that is far to long. RCDP children whose mothers can no longer comfort them, can no longer pace the floors with them at night. There are some RCDP mothers who never got to even take their children home with them and have the pleasure of a restless and sleepless night with their angels to even complain about. What any of them would give to have just one night.
 Megan and Easton have taught me special things in their own unique way. Raegan has done the same. She has taught me to reach out, to go outside of my comfort zone and to speak up. She has taught me to care for myself, simply so I could have what I needed to care for her. She has taught me to work and to prioritize. Raegan has given me hope. She still sucks on her thumb to this day, she absolutely loves it unless she accidently bites her thumb, then she doesn't like it so much. She thinks it is very funny when I pop her thumb out of her mouth and say don't bite on that!
I often call Raegan my little Ray of Sunshine. That is exactly what she is. I love my Ray Ray and I am very Very grateful for her!!

My Alphabet of Gratitude...Letter Q is for Quiet!

Ahhh...Peace and Quiet, how often I've overlooked how powerful just a few minutes of this really is. Any mother can relate to me. When the babies are all sleeping and no one is sick with a cough, it can be the most wonderful thing in the world. I don't like to much of it though, just a dab will do ya. The world I live in can become very noisy. It is full of beeps and babbles, music and TV, background noise. Hannah can talk and talk and talk. Megan loves to babble and join in the conversation even when there isn't one going. Easton is a bit of the silent type but even he can't stay quiet forever, thank goodness becasue I love his laugh. Raegan is constantly making noise even when she sleeps she snores. Dakotah plays his music whenever he gets a chance and Zachary is almost always giggling or telling stories. I love their noise. I love it individually and collectively. But just for a second, when it all stops, just for a moment mind you, it can be bliss. I breathe it in, like a priceless treasure. Ah, the wonder of a quiet moment. To refelect or to just listen to the breath go in and out of my lungs. After a prayer, silence is golden. It gives me time simply to listen. Quiet can be a wonderous thing. I remember as a child folding my arms and seeing who could remain the quietest during primary. It was HARD. It isn't hard anymore. I've really come to appreciate it. Right now, it's very quiet in my house. All my babies and children are sleeping and I love to hear the rhythmic breathing sounds. This is quiet to me. This is wonderful to me. It means no one is coughing, no suction machine is going. No oxygen machine is rumbling and noisily heating up the room. This is quiet. I know everybody has their own version of what quiet is to them. This is mine. No shrill beeps, no pulse oximeters going off scaring me yet again. Did I mention no coughing? How I've come to hate the sound of a cough. Quiet is a treasure. It means to me for a moment, for this moment, everything is okay. I can breathe easy and relax and refill my bucket so to speak. So Shhhh! Be very very quiet...I'm hunting wabbits!

My Alphabet of Gratitude...Letter P is for Prayer

Prayer. I couldn't live without it. It is as essential to my soul as oxygen is to my body. I know I can talk to my Father in Heaven anytime, anyplace and for any reason I need. I never have to feel alone. I never have to feel unheard. I don't always get the answer I hope for but I always get the answer that is best for me at the time. The best part is that I always get an answer, even if it is to wait, be patient. I have a lot of self doubt, so sometimes it is hard for me to know if I'm answering my own prayers or if I'm really listening. It isn't always easy to hear that still small voice. Sometimes I have to be quite persistant in pleading my case, just to get the same answer I recieved in the previous prayer. I am so thankful for this open line to my Creator. Who knows me better, so who better to talk to? I have seen the power of prayer on many occasions in many people's lives. I have seen it in my life in simple and in great ways. He answers my silly prayers along with my serious life changing prayers. I love that. It gives me security, like a warm blanket. I've prayed on my knees, standing up, sitting down, and driving. I've prayed with my eyes open and my eyes closed. I've prayed while crying, and sometimes while wanting to scream. But, I've always prayed. I look back on my life and I can see that, and I am very grateful for it. I've prayed for myself and for friends. I've even prayed for enemies, it's not easy but I always feel much better when I've finished. Like God has cleansed me somehow through understanding and unconditional love. I remember praying in school, I wish my kids could still do that. Unfortunately some people don't believe in praying. I can understand that in a way, but I don't like it when I don't have a choice and they do, so I tell my kids to pray silently to themselves, God always hears. If he can hear Jonah in the belly of a whale at the bottom of the sea then I am certain he can hear me everywhere at everytime. What a comfort. What a joy. What a gift of priceless value. It is nice to know that God listens, that He cares and that I don't have to wait in line or take a number to be heard. I don't have to shout or jump up and down. It is a simple act of communication that saves my life everyday. I am thankful for prayer and the power it holds. I am thankful that God listens.