Raegan's therapy

My little Raegan is doing so well with her therapy I just had to take a moment and do a little bragging on my sweet baby Ray. She is tolerating the whole hour now. Just a year ago she could barely handle 30 minutes and there was a lot of complaining and crying to be heard. It was very hard as a mother to watch. I asked myself several times if I was doing the right thing for Raegan. I always try to balance quality with quantity but quality usually wins. It is a difficult struggle. I hate to see her crying and in what seems to be to be pain. It makes me feel so terrible. I just want to hold her and comfort her and tell her she doesn't need to do this nasty therapy. But I don't. I've tried to be patient and listen to her, to let Raegan be in control of herself as much as she can. So we kept up with her therapy and sure enough she has not only endured it she has started to thrive in it. Raegan is so very tenacious and I absolutely love that about her. Thank you to my sweet little Ray for teaching me to never give up, to work hard, and to enjoy it in the end. I love to watch her work and grow and figure things out. I love that she is showing us just how stubborn and unstoppable she really is. You go girl!

My Alphabet Of Gratitude...Letter W is for Water!

Water = Life. You can drink it, cook with it, bathe in it, swim in it, splash in it, sail on it, and clean with it. Some people use it as you would a road, some people even live on it. It falls from the sky, can be turned into a gas or a solid. It's what causes our crops to grow. It forges canyons, bridges and other magnificent natural works of art. It also makes my munchkins smile. Priceless. Nothing makes my little Easton happier than floating in warm water. He is part fish, I swear. Either that or he fancies himself a merman. Either way, He loves it. He could spend hours in the water with no problem, even cries when I take him out when he isn't quite ready to say goodbye to the wet stuff. How pruned can his feet actually get? Very.
Megan loves her baths too. She doesn't swim like Easton does. She simply enjoys the warm water buoying her up. The weightlessness is what she truly enjoys. She loves to sleep surrounded by water. She always looks so peaceful, so content, so comfortable.
Raegan isn't to hip on the bath scene but she does love her showers! That's right, I said showers. It was hard for me to believe at first, I thought it would pass. It didn't. Ever since she was a newborn she has loved the water hitting her in the face and the back. Her tummy, her feet, she doesn't care. She smiles and giggles at times, it is quite the special moment.
Water. Amazing. Simple and yet profound. We would literally die without it. And yet, I know I take it for granted too. I couldn't imagine a day without water, and yet I know there are many in the world that can, that do. I know how blessed I am to live where I do and have the resources available to me that I do. I can simply turn on a tap and out it comes. I happen to have a well that my water comes from so I also believe it is the best tasting...not to mention free. I don't have to hike anywhere to get it. I don't have to get it out of a dirty ditch. I don't have to wonder where I am going to get it. There might come a day when that changes, I don't know, I do know that today it is readily available to me. I thank God for it whenever I see my babies smiling in it, or when I smell my sweet Hannah's hair freshly washed in it. Whenever I am thirsty or have clean dishes or clean clothes. Whenever I see a beautiful waterfall, or a rainbow in the sky, I am thankful for water.

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!!