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.

My Alphabet of Gratitude...Letter O is for Oxygen

This is Megan, mommy said I could type this one because I'm the one that gave her the idea. I have taught her to be thankful for many things she said but oxygen is one that she really does take for granted. Breathing is so easy for her. It isn't that easy for me. When I was born I didn't breathe at all for almost 2 minutes. Then I got this funny big thing put on my face and other things stuck into my arms and I was put inside a glass tube and sent away from my mommy and daddy. I had to have tubes put into my nose so that it would give me this stuff called oxygen. I didn't know what it was, but I figured out already that I needed it to live. When I got to go home with my mommy and daddy this oxygen stuff went with me. This time it didn't come out of a hole in the wall, it came out of a big silver can thingy. Mommy and daddy had to roll it around on this noisy cart everytime they took me anywhere. My Mom and dad also put little plastic tubes all over the house so they could take me from room to room and just hook me up to my oxygen without having to move the really big silver thingies, I think they called them tanks. And if they would have had to move them, I'm afraid I would have had to stay in one room. When I was still very young I got RSV. I don't know what it is but I do know I couldn't breath. It was awful. I had to go to the hospital and the doctor had to keep putting this tube down my nose and throat and it would take all my yucky stuff that was keeping me from breathing out. It really hurt. I didn't like it at all, so I decided to get better and go home. I also decided I didn't want to have to have the tubes up my nose anymore to give me my oxygen either so by the time I was one I figured out how to get oxygen on my own. The doctors told me I never would, but I know more than they do, I think they are silly. Now I can breath this oxygen stuff out of the air all by myself and I've been doing it very well, unless I get sick, then sometimes I need help and the tubes go back in, but they never stay for long.
I learned from birth that if I didn't have oxygen I wouldn't be here. My body couldn't work, not the way God designed it anyway. I'm thankful I have clean air to breathe. I am thankful that when my body isn't working right that there is oxygen in big tanks to keep me alive. Now my mom and dad even have a machine that takes the oxygen right out of the air they call it a compensator...no wait thats not it...a commentator...nope, not that either....oh yeah! a concentrator! anyway, I'm thankful for it. Thanks for letting me type this one mommy! Now, take a deep breath and Smile!!

My Alphabet of Gratitude...Letter N is for Now!

The present moment holds the key to liberation."~Eckhart Tolle

Now is an adverb defined in the dictionary as the present time and moment.

 This moment is a gift, a priceless treasure. I can choose what I want to do with it, until it is taken away from me. The beauty of that is it is given to me faster than every second, in a heartbeat, in a single breath I have been given another moment in which I can choose again what to do with. The choice is always mine. I have things going on around me that can influence my choice, but the choice is always, ultimately mine.
 I  go through hard times trying to deal with the fact that my Megan and Easton and Raegan will someday die, let's keep it real here, what they have is terminal and no matter what I can't wish it away. I know I will have to say goodbye to them, unless of course God sees fit to take me first. So naturally, I think about their deaths. I used to think about them a lot. Obsessively. No matter how hard I tried to distract myself I would just suddenly start thinking about one of them dying and bursting into tears. Songs, those are the worst, sad movies about death were forbidden. It was horrible. I didn't know how to quit. I knew I needed some outside advice, somebody neutral. I found a wonderful counselor, she has helped me tremedously by simply being a sounding board most days, but she has introduced me to a new way of thinking also, a new perspective on life and it has changed my life. It is simply this: Be Thankful For The Now. That's it. If there is a problem right now that needs my attention, then give it. If it is something in the futre, then it hasn't happened yet so don't stress about it. "Easier said than done," I said. But I practiced it anyway. I know there are things I need to plan for in my future but the emphasis is I don't try to LIVE in the future, it is just as destructive as living in the past. So, everytime I would find myself thinking about one of my angels passing away I would ask myself, "is there something that needs to be done for them to prevent this from happening at this moment in time?" If the answer was nothing than I could give myself permission to not worry about it at the moment. Sometimes I would have to close my eyes and take deep breaths. I would concentrate on the sound of my breathing, how it felt going in and out of my lungs. I would listen to my heart beating, hearing the sound of my blood rushing in and out of it. That would do it everytime. For that moment, even if it was just for a second, I wasn't worried about my babies dying. I was to busy enjoying the moment. WOW! It really was that easy! I can do it whenever I choose. If I don't choose, well then I still have made a choice, as Rush says. Either way I am thankful that I have the opportunity to choose happiness, that it really is up to me and no one else. I am thankful for Now because of the newness it offers me. Every moment I can decide again. If I've made a mistake, I can stop. If I've done something good, I can continue. Now is freedom. Now is all I really have. This moment. This time. I am thankful for Now.

My Alphabet of Gratitude...Letter M is for Megan

When I found out I was pregnant with Megan I was so excited. I love being pregnant. I love babies. I love being a mom. When I had Megan I had an experience I never expected to have. Before Megan, I worked for Wasatch Transportation. I would take children who had special needs back and forth to the deaf and blind schools. I remember one girl in particular. Her name was McKenzie and she was beautiful. Her mom was well to do and gorgeous herself. She always had McKenzie looking so beautiful and you could see the love she had for her daughter. She told me once that she was glad that the decision to let Mckenzie live or die wasn't up to her, that it was part of the doctor's oath to preserve life and the choice was never given. McKenzie was born at 25 weeks and had numerous problem because of this. I remember thinking how brave and wonderful this mother was. I had one son of my own and I couldn't even imagine being a mother of a disabled child. Little did I know.
Megan was born on Christmas Eve in the year 2001. She turned out to be quite the Christmas elf. We knew right away something was wrong. Megan wasn't breathing. We all held our breath, everyone in the room. I didn't realize this until Megan actually took her first breath and you could hear everyone in the room collectively exhaling. I was scared. I remember telling Chad I was sorry. If something was wrong with Megan I just knew it had to be my fault. I had failed somehow. I held Megan for a second and they wisked her away. The next time I saw my precious baby they were lifefilighting her to Provo. I got to say goodbye to her while she was in an incubator. I couldn't even touch her. I was devastated. I returned home on Christmas Day and tried to be brave for the two children of mine I already had there. Not to mention the one Chad had brought with him. It was difficult but I was thankful she was alive. Megan remained in NICU for 2 weeks, a very short time considering some of the parents I met while I was there. Megan left, which a lot of their kids did not. I remember I had to spend the night in the hospital with Chad and Megan and we had to show them that we could take care of her before they would let us take her home. With a bunch of crazy beeping equipment and a head full of new medical terminology we took our angel home. I am ashamed to say we waited for her to die. We didn't know what else to do so we did the best we could. We loved her every minute of every day and she was never in need. Megan was constantly comforted and held and loved. She was kissed a thousand times and held as much as she would let us, which unfortunatley wasn't much because it hurt her. We put her on some pretty strong pain medication but took her off of it because we would rather have a baby that was aware some of the time rather than a baby that was knocked out most of the time. So we held her less and rubbed her little hands and feet and knees a lot more. I cried more than I have ever cried in my life. I yelled at God, I asked him why a thousand times but never really took the time to listen.
 Let me tell you now why I am so thankful for Megan. She has been my fire. She has been the key to my transformation, to my growth. Megan has taught me things I would have never learned without her. She has taught me surrender. I would have never know what it meant to truly surrender without Megan. She broke me, she broke me into a million pieces. God has been putting me back together ever since. Megan has laughed almost the whole way. The one thing that stands out most about my precious little MooMoo is her smile and her laughter. She has a way of lighting up the whole room. My friend Wendy said she smiles with her whole body and I couldn't agree more. Megan is the happiest person I know. If you are feeling bad come and spend a minute or two with my angel, she will have a magical effect on you and you will feel bad no more, ask anyone who has met her. When Megan sees you her eyes light up as if to say "I am so glad to see you!", and I believe she truly is. Megan has a way of knowing just what you are saying, she loves to be involved in the conversation and pipes in at just the right moments. She is full of laughter and it is very contagious. She sings with the most beautiful voice I have ever heard, sorry Babbs, I love ya, but my Megan has even you beat. Megan is the true example of a positive attitude. I never hear her complain unless it is necessary for her care, and I really wouldn't call it complaning as much as asking in her own unique way. Megan has the most beautiful blue eyes. They have a sparkle and shine you can feel in your soul. She can speak to every heart that will listen and brighten every eye that will see. I can not thank my Father in heaven enough for sending his precious Megan to me to care for. What wonderous thing has she done that has awarded her such a position? I am excited to find out someday, I am excited to speak to her one day and to hear her voice speak to me. She is my daughter. She is my heart. Megan is the best of me and I love her more than words can say. She will be turning 10 this Christmas Eve and I couldn't be happier. She hads defied the odds and showed all the doctors who is truly in charge. I look forward to many more years with my love, my Megan.

My Alphabet of Gratitude...Letter L is for Legs

When I was born my legs were a bit troubled. I had club feet. I had to wear casts on my legs when I was just a baby and then I graduated into corrective shoes with bars that ran up my legs. I don't remember any of this, all of what I know my mom told me. I still have the shoes though, I look at them often and think about what my life would be like if it hadn't been for the technology that corrected them.
I remember running a lot as a child. I would love to hang from the bars at the school playground and would make a mad dash for them a recess so that I could. I would hang from monkey bars, trees, bunkbeds, just about anything I could wrap my legs around. I loved to jump on trampolines and of course I would dance, mostly when people weren't looking, but I LOVED to dance, still do actually. I'm not what the world would call good, but I enjoy it.
I really enjoy watching people dance, I love the movements their legs can make and how graceful and easy they make it seem. I enjoy watching the olympics on television and seeing all the perfect athletic bodies run and swim and jump. Beautiful bodies doing beautiful things.
I remember as a young girl, about 10 or so I stepped on a plate glass window that was laying down on two blocks, I didn't see it. It cut my legs pretty bad. I still have the scars. Every movement I made with my legs hurt for days. I felt like a big hurt leg. It was awful.
I've used my legs to hike, work out, run, dance, tip toe, walk, skip, and twirl. I never appreciated any of these things until I had my Megan, Easton and Raegan. Their legs don't work like the rest of ours do. Their knees are pretty big and stiff. Megan's and Easton's hips are dislocated. They will never walk, run, dance, skip, hike or twirl. I have learned that in a situation such as mine, with half of my kids being disabled, it is better to be realistic with a dash of hope. Do I work on making Raegan stand? Of course I do. Do I ever really expect her to do it on her own? No I don't. They will never use their legs in the way that the majority of us do. They have made me appreciate all my legs do for me in a way I never have before. I can only imagine how incredibly difficult my life would be if I had to go without me legs. Could I do it? Probably. Would I want to? Absolutely not.
I put their sister Hannah in dance class. I want her to celebrate her legs. I want her to celebrate her ability to use them. She does so beautifully. She is so young, I know she doesn't fully appreciate their value but I do. I watch her dance and it is hard not to cry. It is a bitter sweetness. Tears of joy and sadness fall from my eyes at the same time. Raegan will never point her toes. Megan will never do the splits. Easton will never run the bases during a game. I am a person who prides herself in seeing the glass as half full instead of half empty though so I do appreciate all they can do with their legs. Easton uses them to scoot like no other. He can swim just like a little fish by just swinging his legs and hips back and forth. He finds this hilarious too. Raegan can push with her little legs so hard. She loves to kick my face and have me kiss her cute little piggies. Megan loves to have her feet rubbed and her knees played with. They do use their legs, just not in the way intended by the "normal".
I am grateful for my legs and all they do for me. I'm grateful that my children have taught me through their disabilities not to take anything for granted. Even when my legs are jumpy and restless just about every night I am thankful that I have them. I run and jump and dance for my trifecta, with my trifecta most times and they love it. My legs are their legs for the time but I look forward to the day when they have legs of their own that work the way they were intended to. I look forward to the day when I can see my little angels run and dance without me holding them, when they can run into my arms on their own accord. Until then, they can use mine.

My Alphabet of Gratitude...Letter K is for Kites!

I love to fly a kite. I have my adopted family, the Wheelers, to thank for that. Every year they would get together and fly kites. It turned into a potluck too eventually I think, I'm not sure but I am sure about how much fun we all had. It was wonderful looking up into the sky and seeing all the beautiful colors and different shapes. It was fun to watch who get their kite up with ease and who had a really hard time.

I remember as a teenager I would go to the beach in Pascagoula and watch people flying all sorts of kites. From simple ones to the ones that require two people and both of their hands, it was awesome.

I guess a part of me feels as though I'm in the sky with that kite, soaring high above the ground and flying with the breeze gloriously.

I've flown kites with my children and I never get tired of watching their faces light up when they get their kite soaring, no matter how old they are. I hope we never outgrow going and flying a kite. It's simple, but it's powerful. Sometimes it really is the little things that can really pack some punch...just as my munchkins!
The picture is of Glen and Linda Wheeler! Thank You so much for all you did for me, I can never say how grateful I am for your family. So K is for kites, but they were more than just kites to me. It was the time we spent together, competing and yet cheering each other on. The older ones teaching the younger ones. Time together. So our yearly kite flying fun was more to me than flying kites, because of this example kites will always symbolize fun and freedom and family to me. They didn't just fly kites with me they showed me what was important in life and that is family. No matter what. I've seen them go through many trials and yet they all still love and support each other in their own ways. I love them so much and I dread to think of where I would be without them. They are my sisters to this day. They know me as well as any sister could and they love me inspite of myself, that is family. I feel even more special because I was chosen, they could have sent me away feeling sorry for me but they didn't. They included me and they never made me feel like they wanted to do anything else, they loved me. So I am thankful for my time flying kites with my second family. I am blessed to have not one but two. One that I was born into that I love dearly, and one that adoped me in a way and taught me how to fly a kite. Thank you Glen, Linda, Julie, Melanie, Christy, Jan and Beckie. Oh, and Kenny, can't forget my adopted brat of a brother either...I don't think he taught us how to fly kites as much as he taught us how to run with them though.....!

My Alphabet of Gratitude...Letter J is for Jesus

How is it possible to thank someone for dying for me? Is there thanks enough for someone who takes on everything I have ever done wrong and answers for it? The name Savior, Redeemer, Lord, and Christ define Him. He is my Savior in every sense of the word. Through His example I know how I am supposed to live. He didn't just sit on the sideline to critique my life, He showed me how He wanted it to be done. He is my Redeemer in that He redeems from from myself. In spite of my wrongs and shortcomings, He has the power of redemption and He gives it freely. My Lord because I choose to worship Him. He is the Chosen One, the one who took it upon himself to give to me the one thing I could not give to myself. A proxy, a replacement. Someone who could withstand the punishment required when laws are broken. He is my teacher and my brother. He is my advocate and my protector. He asks to be followed, in a gently loving way. Reaching out to help me when I couldn't help myself. I think of the poem footprints. There are many times when I know my Savior carried me because I would have surely fallen and wasted away on my own. Looking back, I can see his tender mercies more and more. Times when He showed He knew me better than I knew myself. When I picture Jesus I picture a man with his arms wide open in love and acceptance, with gentleness and compassion. With an understanding only He could have. I am thankful for my Lord, for my Savior. Above all, he decended below all of us and died in such a fashion that I can barely comprehend. Christmas and Easter are by far my favorite times of the year. What they represent is priceless. Something that can't be wrapped and put under a tree, something that can't be found in an Easter basket. Atonement. One word that accomplishes so much. I try to live my life as it's own thankyou to Jesus, but I'm ashamed to admit I fall short everyday. He is there to pick me back up and encourage me, I am so very grateful for His patience. My Redeemer lives. I am beyond Thankful.

My Alphabet of Gratitude...Letter I is for Imagination

I love watching cartoons, one of my favorites was Muppet Babies. It was a cartoon all about using your imagination. You can go anywhere, be anything if you just know how to use it. It is a childlike quality that I am so thankful for. I love more than anything to talk with my children and do the what ifs. We end up laughing hilariously or thinking deeply, usually the former. I get a glimpse of it everyday when I watch Hannah play, she uses her imagination very well. I've eaten so many plastic dinners cooked in her little kitchen I've lost count. I've watched Zac slay invisible foes with his Power Ranger's sword or lightsaber. I've seen Dakotah fix many an imagined problem with his cool tools. These are very special memories to me. But it doesn't stop when we grow up does it? I for one believe it doesn't have to. I imagine things all the time. I appreciate all of the things in my life that I have because someone else imagined them first. Like this computer I am typing on, the stove I am cooking on, the bed my babies are sleeping in. People had to imagine these things before they could be made. I think of all the books I have read, all of the movies that I have seen. I think of all the medical equipment that just blends into the decor of my house. Someone imagined it, and now I get the benefit of using it. How incredible. I also use my imagination to paint the picture of a better tomorrow. I try to make today the best I possibly can but I'm always trying to learn ways to improve it. I have to imagine myself doing things before I can do them sometimes. Take cooking for instance. I love it, but before I started I had a vision of myself cooking fabulous dinners that my whole family would sit down and eat together and everybody would rant and rave about what a glorious cook I am...
I have very fond memories of using my imagination with my best friend, we had our children named, our house picked out, our husbands were named and so were our pets. Life didn't turn out exactly as we imagined, but we had an idea of where we were heading.
To this day I still love to watch cartoons with my children, I love to watch them even without my children! Cartoon have imagination written all over them, and it is fun. I also love anything science fiction. Another wonderful use of what ifs..... I still smile when I think of the Dr. Who marathon my son Zac and I had a few months ago. We were up until 4 in the morning because we just couldn't get enough! And then we talked and talked about all we had seen and heard, he gave his thoughts and I gave mine and it was awesome.
I imagine a day when there will be no more RCDP. When a family never has to bury a child again. When a mother never has to watch her child suffer. I imagine a day when people treat each other with kindness and empathy. I imagine a day when those of us who are different aren't shunned and ridiculed. I imagine a day when the lion lays down with the lamb and it helps me get through the difficult times. The times I simply want to give in and throw in the towel. I imagine my self carrying on, learning and growing and someday never having to cry in pain again.
Imagination is a beautiful thing. I am so very grateful for it and I use it each and everyday!!

My Alphabet of Gratitude...Letter H is for Hannah

Hannah is the one child out of 4 that Chad and I have together that doesn't have RCDP. According to the odds of recessive genes it should be the other way around...for that reason Hannah is known as my miracle child. Born 3 weeks early, Hannah was a tiny little cuddly baby when we brought her home, she weighed a whopping 4 pounds 10 ounces. Even her preemie clothes were a little big on her. Hannah was covered with hair! I called her my little monkey and she lived up to that name not only in hair but also in climbing abilities. She had more energy from the time she was born than I have ever seen in any of my children. She has that same energy to this day. Hannah loves to sing and dance and at every opportunity she will perform for you. I love to hear her voice and how hard she tries to sound "grown up". She loves Justin Bieber and Taylor Swift. She loves to watch anything Disney and I love her laugh. Hannah loves to help. She always has. Lately she has been learning to cook and we have a great time together in the kitchen. I hope this will last for our lifetime. There is nothing like cooking up a meal with your daughter and sitting down to enjoy that meal with your family to bring a tear to a Mother's eye. Hannah loves being a girl. She loves all things girl. She loves to play Barbies and with dolls. She loves to dress the dogs and kitty up in the doll and barbie clothes. The animals don't care to much for it though. Hannah loves to ask questions and it is these questions that I am grateful for also. Sometimes they do get numerous and there are times when I have to tell her not now, but I have to admit the child makes me think. I love her smile and the little freckles that speckle her cheeks. I am thankful she likes to cuddle and be soothed when she has an owie. She is a wonderful big and little sister to her siblings with disabilities. She can do everything from change them to feed them and she really doesn't mind, most times she asks to do these things. I know Hannah will be a wonderful Mother someday. As a mother with 3 daughters, 2 of which I have had to accept alternate plans of living for, Hannah is a breath of fresh air. I love to watch her dance and am so very grateful for her ability to do it. Everything I would have taken for granted about her, my Munchkins remind me not to, and her also. She is a very typical child in most ways but I believe she has an advantage growing up with these special children. It has taught her empathy and sacrifice. Hard lessons to learn, even for adults. Her normal is not other people's but you wouldn't know it by watching her live. She simply accepts. She has a curiosity that is admirable but it is a curiosity underlined by a tenderness that is all her own. A friend of mine once asked me if I look at Hannah sometimes and see a little halo glowing above her head, you just love her that much. I said yes I do, quite often in fact. I can feel it physically in my chest, my heart soars when I watch her play, when I see her smile, when she tells me how much she loves me. My Hannah banana is so many things, none of which I take for granted. She was given to me at a time when my heart was hurting so much and she healed that hurt. She gave me back the dreams that I had given up with Megan. She is my chance at redemption. Hannah is my miracle and I am more thankful for her each and everyday. I have so enjoyed the last 8 and 1/2 years with her and I look forward with childlike anticipation to the years to come.

My Alphabet of Gratitude...Letter G is for God

God, Elohim, I AM, Jehovah, Almighty, Great Shepherd, Immanuel, King, and The Way. Heavenly Father, Master, Judge, and Great Shepheard. He is known by many names and by many people. He is my Creator and I love Him most of all. My search for God really began after Megan was born. My whole world seemed shattered. Everything I believed about the world came crashing down and I was left devastated. It was awful. I felt so dark, so hopeless. I was angry and I was so very sad. I was a rollercoaster of emotions and I was worn out physically from the care Megan required. I had to have answers if I was going to carry on. I had to believe in something or I knew I wasn't going to make it. I had to have hope. I had to have something to look forward to, something to hold on to. I've always believed IN God, but what did I believe ABOUT God? That was what I was going to have to figure out. I began a quest, I studied many religions, I am a very open minded person and I wanted to learn all I could from just about everybody I could. I went to many different churches and participated as well as I could. Questions always going around in my head, listening for answers among my fellow church goers. I found many wonderful people in many wonderful beliefs. I also found answers. I found a Father in Heaven who loves me very much. I found an advocate and supporter beyond my wildest dreams. I found Someone who would listen to me night or day and never complain about my questions. I found a reason I could accept about why my babies are how they are. If all I woke up with tomorrow was my knowlege of my God I would be a happy person. I have nothing without it. I have hope and happiness beyond anything I could have imagined. I am not sad about my little trifecta, I am excited. Not on the earthly sense, the physical is still very hard sometimes. But on an eternal sense, the bigger picture so to speak. I know I don't have to worry about my little angels. I know they are perfect and being protected by a loving and caring God. Do I have questions for Him still? Sure I do, but I've learned to listen more than speak and it is that I am grateful for. A Father who speaks to me and knows me better than I know myself. A God who loves me more than I understand. An answer, a Friend, a Savior. I believe God lives and loves us all very much. I know He wants us all to be happy and learn to love each other and live together in peace and understanding. This is what has helped me the most in my struggles. I know I can go through anything and make it, my faith is strong and I am so thankful.

My Alphabet of Gratitude...Letter F is for Friends

"Friends are treasures"~~Horace Bruns
Friends are indeed treasures. They are a lifeline, a shoulder. Friends are a sounding board, a pick-me-up, a taxi service and a babysitter. Friends are cooks, photographers, comedians and critics. Friends love us through the good and the bad. Through the thick and the thin. I would count myself very blessed to say I had but one of these friends. I am happy and humbled to say I have numerous. Many people have come into my life and blessed me with their spirit and their energy. I appreciate and love each and every one of them. I have new friends and old friends. Each one of them is unique and they each give me part of that uniqueness as an influence in my life.

Joan Walsh Anglund said "Friendships begin because, even without words, we understand how someone feels". This is how I feel about my Rhizokids group. I don't know how I ever survived without them, but I never want to do it again. For me, to be able to go onto facebook everyday and see what's going on in their lives, to see their children's beautiful smiles and bright eyes makes me so happy. To be able to be supported and also support someone is life changing. They are my family in a way. Their kids are my kids. We understand what it is like to raise a child with the difficulties that come with Rhizomelic Chondrodysplasia Punctata. A word I didn't even have to think about to type, it just flew off my fingertips automatically, and the real kicker is, most doctors ask ME how to spell it...I find that really funny. I know whatever my kids go through their kids probably go through and it is more comforting than words can say to know someone understands how you feel. I love my Rhizokids friends so much. I really want them to know that. So many of them and yet the group is incredibly small if you think about it on a world wide basis. Each one of you have helped me in your own way and I hope I have done the same for you. I have made a few special friends among you and I am truly grateful for this. I look forward to meeting one of these special friends. Megan has made such a wonderful connection with her and this is so amazing and touching to me as a mother. To see someone love and care for your child with disabilities as much as you do can be a very dramatic thing. It brings me to tears to watch Claire talk to Megan on the computer. Megan has made her wish with Make-A-Wish and it is to have Claire flown from England to Utah to be able to spend a week with my precious Megan. I am so thrilled. I can't wait to see the two of them together!
"Friends are like windows through which you see out into the world and back into yourself...If you don't have friends you see much less than you otherwise might". This quote by Merle Shain makes me think of my friends from church. They help me see myself in a the way I believe God would. They are supportive, forgiving, and uplifting. They have brought me food, taken my families pictures, been there for me to work out my problems with, reminded me to keep the "eternal perspective" in mind, and have always made me laugh. I thank them for their kindness, for sharing their talents and time with me. Above all, I thank them for their faith, for their love of their Heavenly Father and for their beautiful perspective on a world that can be full of so much hurt. I have made inspiring connections with many people in this group, three of them stand out in my mind. One of them has made incredible connections with my children. Suzanne has learned to take care of my disabled children so well I feel very comfortable leaving them with her and that says A LOT. She is always there when I have asked of her, and I thank her. Another has taken the most beautiful pictures I have ever seen. I am so very blessed to say my family has been among these masterpieces of hers. Amy has such a talent and she shares so willingly and gratefully, she ends up making you honestly believe she is the lucky one to have photographed your family. Incredible. Amy has been with me in very key moments of my life and she has never judged me and condemned me in any of them, she has only supported and uplifted me. She is such an example of faith and she has such a love for her Heavenly Father you can almost touch it. Did I mention she also has one of the most beautiful families I have ever had the pleasure of knowing? Last, but certainly not least, there is a friend who is so Christ-like, so humble, and so easy to talk to. Wendy is an angel in disguise, She has a way of making me feel good, of making me see the laughter in a situation I don't think I would have laughed at. We have had lunch together many times and I have enjoyed each and every one of them. I look forward to many more. She is a delight. A breath of fresh air and a true example of service. She is a warrior and a servant of her faith. I love her more than words can every say.
I have friends that I have never met. Friends that have come into my life thanks to the wonderful site called Facebook. Friends from different countries that I would have never had the opportunity of meeting had it not been for this. I love getting online and checking my Facebook and reading all the comments I have gotten from the wonderful people I have on my friends list. It truly makes me smile, it makes me feel not so alone in this world. As a person who has to spend most of her life inside of her house I can hardly put into words how much this means to me. I am not alone. I have a window to the world right in my bedroom. That knowledge helps me get through some pretty difficult times, especially at 3 in the morning. I have friends on Facebook that are reconnections from my school years. This is so much FUN! To be able to stay connected, even in a digital way, with friends from your youth can be great. I have been able to reconnect with a few of these friends also in very wonderful and interesting ways, I have even learned to love new TV shows because of one such friend. She is the creator of our group "Whovians" and she has truly brought a connection to my son and I that I would have never had. We have had numerous discussions and it has been delightful.
If this was the end it would be enough. I would be blessed beyond my wildest dreams. I am so very humbled to say it is not the end. I have one more friend. A friend that has been with me my whole life. If I did not take the time to thank her I would be a horrible friend indeed. I met her when I was around 2 or 3. I don't really remember. All I know, is that I have always known her. I love her more than I could ever say. She means more to me than I could ever tell you. We have been through things that would make you laugh and make you cry. We have conspired and planned together, we have written poetry and made future plans together. We think alike and often finish each others sentances. Did I mention how much I love her? I watched her grow up with a world of problems. I watch her be teased and shunned. I have watched her struggle with her self worth and continue to doubt herself to this day. How can I tell you how wonderful she is. The lessons she has taught me are priceless. She has taugh me paitience, understanding, empathy, love, family, and forgiveness. If it wasn't for my dear friend refusing to give up on me, I'm afraid I would be lost. I gave up on myself after Megan was born and I shut out the world for over 2 years. I had no phone, no TV and good luck getting me to answer the door. I know she thought about tossing in the towel on us. I know she thought about it because she is not afraid to tell me how she really feels. What matters is that she didn't, she pursued me and she wouldn't let me quit. She has told me she has always looked up to me, but I would like to tell her how much I look up to her, how much I know how incredibly special she is. My friend accepted a life that I believe she knew would be difficult. I know part of the reason she did it. I believe we had a pact, before we were born, to support and help each other. That is what we have done. You don't have to believe like I do to understand the value of a life-long friend. I often say we share the same brain cell. I do this jokingly but in a way it really is true. We are different in many ways but we love each other unconditionally and there is nothing I wouldn't do for you my dear friend. My friend's name is Beckie,  her name was on my first wedding cake....that is another story for another time though. I thank you my dear friend and I will love you for all eternity.
Clive Staples Lewis said "Friendship is born at that moment when one person says to another "What, you too? I thought I was the only one." I know that a lot of you can relate to many of the things I have said, at least I hope you can. I hope my friends I have now really feel appreciated. I cherish each and every one of you, I truly do. If I have made some new friends with this because you feel like you can relate than I say "Welcome!" I look forward to getting to know you and I hope we can learn from each other and enjoy life along the way".

My Alphabet of Gratitude...Letter E is for Easton

When Easton was born his father and I had not yet picked out a name for him. I told his Dad that he could pick the name and then if we agreed on it then that is what it would be. Well, Chad came up with some real winners, let me tell you! First our son was going to be known to the world as "John Wayne deHaas". Whoa. Seriously?? I think not. Second our son was going to be called "Easton West deHass". Nope, not in my lifetime anyway. Then we decided to drop the "West" go with "Chad" and we had a winner! Easton Chad deHaas was born into this world on March 28, 2005. We did not know if he would have RCDP or not until that day. It didn't matter to us, he would be loved and cherished regardless. He would be exactly who he was meant to be, nothing more, nothing less. I wouldn't change him even if I could. It is hard to see him suffer and I would love for him to do the things "normal" children do. But thankfully I am not in charge, God is and I trust him completely. Now let me see if I can put into words how Easton has saved my life. When I got pregnant with him I was not in a good place emotionally. I was still angry and confused about Megan, still trying to accept what was, and let go of what I had planned. I never thought in a million years that I could take care of a disabled child, let alone 2! After I had him my life was different. I was less angry, less scared and more convinced of my abilities. He brought me from a dark place in my life into a bright new perspective. His smile and his laughter disspelled the darkness, it was no match for his bright and glorious spirit. That light is still tangible in his eyes to this day. I love looking at him and wondering what is going on in that head of his. I know he understands a LOT. He just can't tell me in words, but I can see it in his face. He is more somber and quiet than his big sister Megan. He is more patient and long suffering, and it is that long suffering which I am grateful for because he has taught it to me also. E is also for endurance for he is the definition of the word itself. Easton Endures! He teaches all those who are willing to learn this skill also. When he gets sick he gets REALLY sick and it lasts for so very long. The common cold to him is not at all common and it seriously knocks him out. What would take you and I a few days to get over, takes him weeks and weeks. How do you do it? I get asked that often, I just reply I simply do it because it is what needs to be done. I don't like it, I have a love hate relationship with his suctioning machine but we endure it, together. He looks at me as if to say, "I don't like this Mom, but I understand why you have to do it and I'll be patient" How can I be anything but patient with him when he acts in such a way? There was one instant in particular I want to share. When Easton was in the hospital one day for being severly sick and dehydrated I had to leave him, for a little while so I could take my other kids to school. The nurses know I do all of the caretaking of my children when they are in the hospital, mostly for my benefit, I didn't think it would really make a difference to my children who was taking care of them as long as they were being cared for. This made me sad but Easton had no real way of telling me any different, or so I thought. So I left for around 2 hours. When I returned to the hospital I could hear Easton screaming all the way down the hall. When I got to his room I saw 3 nurses all gathered around him trying desperately to figure out what was wrong and calm him down. One of the older nurses looked up and said "Now watch this" and I stepped up to my son lying in his crib and put my hand on his chest. He instantly calmed down and relaxed enough to rest. The older nurse said "YUP! I was right, I told you he just wanted his mother." It was in that moment that I knew beyond a doubt that my son needed and wanted ME. He knew me, he loved me and he wanted me. Easton might not ever say the words I love you to me, but he finds ways to tell me everyday. The way he smiles, the way he laughs, and they way he looks at me, I can honestly see the love in his eyes. I am thankful for a son who can give me this, who can with one look tell me how important and loved I am. I am thankful for a son who understands how much I desperately love and need him and how much I enjoy being his mother. I am thankful for a Heavenly Father who would entrust me with such an awesome spirit. He has blessed our lives so much in just the 6 short years he has been with us. When I hear Easton laugh my heart soars! I used to laugh when he would pick on his big sister Megan, even though sometimes it would make her cry. It showed me how "normal" some things about Easton really are. Easton is my hero. I can't imagine what my life would be like without him. As I am typing this he is laying in his crib next to me and he just looked over at me and smiled and gave me that "all knowing" look of his. I love him more and more everyday. Thank You for being my son Easton, thank you for blessing my life with your spirit.

My Alphabet of Gratitude...Letter D is for Dakotah

Dakotah is my oldest child. He turned 16 this July...although I know I'm not old enough to have a 16 year old! Seriously, what can I tell you about my DK to let you know just how happy I am to be his mother? I am so thankful for all that he has taught me, patience, understanding, forgiveness, and love just to name a few. When he was born I wasn't able to hold him for the first day because of his lungs partially collapsing, they had to put him in an incubater. When I finally got to hold him and take him home I was so happy. He was such a beautiful baby with so much dark gorgeous hair. He grew quickly and I enjoyed him every step of the way. He is smart and talented. I appreciate the music he has brought into the house. He has taught himself to play the guitar, keyboard, drums, and cello so far. No lessons! He plays so well, I have to take some credit for putting headphones on my tummy when he was still growing in there. He listened to everything from Ozzy to Elvis, from Enya to Led Zepplin, he loves them all to this day. He has always been my helper without complaint (most times!). Dakotah can make Easton smile and laugh even more than I can. The first time Easton let out a real belly laugh it was because of Dakotah. I am so proud of the way he treats them and how gentle and kind he can be. He is such a big guy it is wonderful to see. Dakotah has gone through some really difficult times this past year and a half. I have seen him grow into a young man I am very proud of. We all make mistakes...we all have failures but what impresses me most about my son is his ability to turn tragedy into triumph and mistakes into successes. I have watched him embrace critisizm and use it to catapult his growth in a positive direction. He is inspiring to his peers and the adults that have worked with him have nothing but praises for him. My heart just swells when I hear all of the positive remarks from everybody. When a situation that can make you so bitter is turned into something that makes you better instead, well in my opinion it is miraculous. He loves to smile and laugh. He brightens up the room he is in and he can relate to just about anybody. He is a great friend and brother. He is an even better son. Dakotah is respectful and hard working, he is protectful of his brother and sisters with disabilities, you can see the love in his care for them and how much he LOVES to play with them. I told him when he gets to heaven and a big guy comes and sweeps him up in his arms and swings him around....well that will be Easton. The way Easton's eyes light up when he gets to hang with his big brother is Awesome, it brings tears to my eyes just about everytime. Easton really enjoys hanging out with DK in his room while he is playing his guitar, he loves the music and usually has a permagrin on his face the whole time. Dakotah takes the time to teach also. All of his musical talent would be enough but the fact that he is able, willing and wants to teach makes me very happy. He helps his brother Zac learn the cello and has even been able to play a duet with him the first day he started teaching him. He is not selfish or greedy at all. Yes, I'm a proud mother and I love to brag about my children every chance I get. They know how much I love them and Dakotah is not ashamed to tell me he loves me back...even when around his friends, going so far as to give me hugs also. I want him to know I don't take these actions for granted at all. I appreciate Dakotah for who he is. For who he is, is WONDERFUL!!

My Alphabet of Gratitude...Letter C is for Chad

I am ashamed to say I do not tell Chad how wonderful he is often enough. He is a terrific father, his ability to care for our 3 disabled children and our 3 healthy children is amazing. He handles them with humor, with tenderness and with strength. He can do all the dirty jobs they require, I won't go into details let's just say they are jobs usually only a mother would have the stomach to do. Chad does anything and everything required and needed for our children. From getting them ready in the morning to making their lunches, helping them with their homework, even fixing Hannah's hair. He is one of the hardest working men I know. He does everything he does well. I have learned to trust him with everything because I know it will get done right. I love the example he is to our children when it comes to taking pride in your work. Measure twice cut once is his motto. My most heartwarming and goosebumpy moment of thankfulness with Chad happened when Megan was only 3 months old. I went to her bassinet to check on her, she was always in the living room with me during the day, but she was sleeping quietly for the moment. At least, that is what I thought until I seen her. Megan was blue and she wasn't breathing. I panicked. I didn't know what my name was anymore let alone where my phone was. Chad was sitting on the couch and he instantly knew something was wrong. He jumped into action without even blinking. He immediately started CPR on our little angel and suggested I dial 911. He continued giving Megan CPR until the cops showed up...the cop decided to let Chad continue what he was doing until the paramedics arrived because he was doing such a good job. If it wasn't for Chad's quick thinking and ability to work under such emotional stress we would have lost Megan that day, I'm sure of it. She had already suffered from brain damage at birth due to lack of oxygen so....
If that was all, that would be enough. But Chad saved her life one more time. That is our story, I believe it, at least that he had a huge part in convincing Megan how much she was loved and to return to us. The doctor sent Megan home with severe RSV. Our choices were this, she could go home to die or we could send her to Primary Children's Hospital to be hooked up to a respirator where she would die, probably to never be unhooked from the respirator. It was our choice, we were given a folder and some time. We asked Megan in our own way what she would want. The overwhelming feeling Chad and I both recieved was to take her home so she could die in our arms where she would feel safe and warm, and not hooked up to tubes in a hospital where we couldn't even hold her. So we went home with our little baby and waited for her to pass. We held her all night and eventually she stopped breathing. We cried and cried. We cleaned the oxygen tapes and tubing from Megan's face and wiped off our tears and kisses. I checked her heart with my stethascope and Chad did the same. Megan was gone. Our angel was lifeless. We held her for just a bit longer and spoke to her, told her how much we loved her and how proud we were to be her parents. Chad leaned down to kiss her one more time on her sweet little lips and when he did Megan took a deep breath. It startled us very much. I had never seen a person die before, I didn't know what to expect, but I know I didn't expect this. Neither did Chad. We stared at Megan, unbelieving and she took another breath, and then another. We put her oxygen tapes back on,  put the oxygen tubes back in her nose and I just held her and stared at her and was speechless. Megan's breathing increased and her congestion was gone. I called the doctor and he was sure I was calling him so he could pronounce my sweet little Megan dead. He was dumbfounded when I said no, she is doing okay. I took her in to be checked and she was completely well. She had no more RSV when the night before she had it so bad the doctor had to deep suction her every 5 minutes. I knew we had witnessed a miracle that night, I know Chad's love had something to do with bringing that about. I am thankful everyday for a father for my children who loves them so much that his kisses bring them back...amazing. Thank you Chad for everything you do, it would take me days to list everything you do. But apart from being an amazing father you are also a wonderful friend. You know all my dark side and you love me anyway and that says A LOT! Who knew that two people could create such a life as we have? I have been told I should write a book about it...maybe in a way that is what I am doing here. This wasn't what we had planned Chad but I for one wouldn't have it any other way. Thank you again for just being the wonderful you that YOU are.

My Alphabet of Gratitude...Letter B is for Balloons!

Balloons make me happy. I love to watch them float in the air. I love to see the beautiful colors and pretty prints. I love the shiny ones, the squiggly ones, the little ones and the HUGE ones. They make beautiful boquets and I give them at every occasion I can. My babies absolutely love them, Easton the most. He just giggles and can't take his eyes off of them for very long. I love to buy them big colorful arrangements for their birthdays. My kids and I have always loved to hit balloons and see how long we can keep them from hitting the ground. We rub them on our heads and laugh when they stick to they wall and laugh even harder when we see how silly our hair looks sticking up. We suck the helium out of them and put ourselves in tears saying hilarious things with our new chipmunk voices. We play games with them, do magic tricks with them, we can twist the long skinny ones together and make neat balloon animals. Yup! I absolutely am thankful for balloons!!

My Alphabet of Gratitude...Letter A is for Adversity

It is the month of November, a month of Thanksgiving. I try to be thankful everyday, but it's nice to have a holiday to remind me at least once a year. I have so many things to be grateful for. It is not hard at all to come up with something to be thankful for everyday this month and jot it down. I could go through the alphabet, start out with being thankful for adversity, which I truly am grateful for just not while I'm going through it, and end with Zingers...I mean who am I to resist their ooey goodness? The alphabet would be a wonderful way to come up with all of the things in my life that I am blessed with. So, let's start at the beginning!
A: I am thankful for adversity. It is through my toughest and most difficult times that I have found I have grown the most. I'm a bit of a sissy though, I wouldn't actually choose to go through difficult times would I? I suppose that is debatable some of the time. I want to act as if I did choose each and every situation I go through, that I hand picked this experience just for me, and with that attitude I am free to learn all I can. The emotions can be intense ranging from fear to anger. I cry, scream, and have pity parties along the way, while I'm trying to find the valuable nugget of knowledge from yet another opportunity life has given me. I feel in the moments of my worse adversities I can either give in or go on, it's all up to me, I can get bitter or get better. As I reflect on all my past adversities I can honestly say I either grew tremendously, or regressed horribly. But even through the regressions I learned. That knowledge is then able to be applied to future experiences, the choice is mine wether I do or not. The growth comes when I choose to apply what I have learned, however painful that may be a times. So yes, I am grateful for adversity, for without it I wouldn't be as strong as I am today. It's a strength that is bitter sweet, but I've earned it, so I'll take it.

Raegan's 2nd Birthday

These are photos taken by Amy Springer. She is a good friend and an awesome photographer! We had a blast during the "photo shoot" Megan had the most fun though laughing and smiling the whole time. She was contagious, even Easton caught the bug and was laughing about all the to-do! I love the music by Alan Jackson and the fun that it conveys. Enjoy!

Please, Let Me Say Thank You!

I consider myself a deep thinker. I have a habit of analyzing just about everything and finding some useful life lesson in it. Sometimes I wish I could stop, but most times I am grateful. I love peeling back the layers of whatever life throws my way and learning all I can from them. There have been so many big things I have done this with but my favorite is the small things. The little things that happen everyday. The things that tend to get overlooked. I can't take in everything everyday though and so I know there are things that get brushed by or sometimes not even considered. I had the opportunity for such a lesson today. One I believe I was in sore need of. I ask you, dear reader, do you know how greatful I am for you? Have I told you how much I appreciate your friendship and kind words? Not enough I'm afraid. I would like to think that I thank everybody for everything that deserves being thanked for...I would LIKE to think that, but I can't. I would like to think I neglected to say thank you only because of procrastination or a busy day, but I'm ashamed to say that sometimes I don't say thank you simply because I become to self absorbed, to involved in my own desires and needs to stop for just a second, because that is all it takes really, to let you know how much I cherish you. So let me take this time, this moment, to say Thank You to all of those who have made my babies smile. Anyone who has given them a moment of your time, a gift, diapers, medicine, photographs and cards. Let me say Thank You to all of you that have ever said a prayer for them or have told a friend about them to help me spread the word on RCDP. Thank You to all those who have supported me with kind words and laughter. Thank You for your smiles and your tears. Thank You to those wonderful souls who have watched my sweet angels for me when ever I have asked you, who have gone to the hospital with me, or have listened to me cry when things aren't going my way. Thank You to the doctors and nurses and therapists who work with my children on sometimes a daily basis. Thank You to my Rhizokids group whom without I don't know how I would make it. Now that I've found you I don't know how I ever made it without you. Thank you also for sharing your children with me, for letting me share in a little bit of their lives, to see their smiling faces and to cry with you when they are suffering. I believe we all need to take the time to say Thank You more often. From the simple things, to the big things... I never want to neglect to let you know how much I wouldn't want to be without you, how sad I would be if I ever hurt you. This world can be crazy, and a little scary but I believe if we remember to be grateful, not only in our hearts but in our words and actions, this world will be a better place. You are not mind readers and neither am I. Saying Thank You is such a simple thing, with such a dramatic effect and it takes only a second really. It's free too :-)

What Me Worry?!

I had to ask myself what my reasons were for doing this blog. Do I really feel comfortable letting people get so close to my life and how much should I say about said life? What do I want people to know? The answers I came up with are this. My reasons are varied. I want to reach out, I want to share the love of my children, I want to educate people on RCDP. I've been private for so many years and it hasn't really worked for me. I have happy moments and I have sad moments and I have scary moments...I don't like to have them alone. Blogging is my way of recieving help I suppose. It is my way of journaling and having a written memory of the lives my children lead. I'm not much of a writer though...so I cringe at my run on sentences...at my dangling participles...my incorrect spelling...the list of grammatical errors go on and on. It stopped me for a while. If it was my own personal journal I don't think I would be so worried. The words of the infamous Alfred E. Newman..."What Me Worry?" have become my mantra. So I'll blog, errors and all.
As I am typing this my Munchkin Trifecta are doing well. Raegan is suffering from some gas issues but nothing major, just annoying. We just celebrated Raegan's 2nd birthday. I can hardly believe it has been two years. I remember her birth like it was yesterday. I remember the first question out of my mouth was "is she alright?" The doctor looked at me a little strange and said "You have a beautiful baby girl, you should be proud." I was ashamed at that moment for wanting her to be healthy, for wanting her to be what I wanted, what I had been dreaming of her being for 8 months. I remember pulling on her legs to see if they would straighten out and my heart sinking when they wouldn't. I knew what I was in for. I had been in this moment twice before. My heart broke, my dreams were shattered and I began the road to acceptance for yet another child that I would likely outlive. That I would one day have to bury. I cried and I held her close to me and wouldn't let anyone take her. I didn't know how long I had with her but I was adament I was going to make the most out of every second with her. It was different the third time around. I didn't fight it as much. Although I was angry, I wasn't as angry as I had been with Megan. I looked at everything she COULD do instead of everything she couldn't. I entered Raegan's journey with a completely different attitude, I was more experienced in pain, and I chose optimism instead. What a difference perspective can make. I didn't close my mind to the experience. I let myself feel all the emotions, I didn't numb myself to them in order to survive. I let the feelings of sadness, regret, anger, frustration and heartache flow through me, feeling them completely. Not judging these feelings as negative or bad, just pure, raw, and right. I had a right to be sad. I had a right to be mad. I also have a right to be happy, to be joyful, to be hopeful, and to be trusting. My faith in God has changed so much over the past 2 years. I know Raegan and Megan and Easton are exactly who they were meant to be. They are not mistakes or errors. They are perfect. I still get sad, and mad, and frustrated...but it is the natural man in me that feels these things. The part of me struggling to learn and grow and become more. It isn't easy but I wouldn't change a thing. I try not to think about what will be...I just try to focus on what is. If I've learned anything from this it is to live in the moment. Cherish what I have now, make the best of it, find the silver lining so to say. It has become my habit and it has changed my life. My expectations are different. I don't look forward to the things I thought I would. They will live, I will keep them comfortable, and they will die. That is their reality, that is my reality. So with that accepted I am free to move on, I am free to not worry but to simply enjoy. The things I used to take for granted. A simple word, being able to walk, to eat, to run, I look as miracles now, I am grateful for my ability to do these things. My friendships are deeper and my motives are purer. My heart has been broken and wonderfully reassembled by a loving Father who knows me and loves me more than I can imagine. I can wake up everyday and find joy rather than sorrow. For now, my little munchkins are with me and I am happy for that. Tomorrow...well it is never really here anyway is it? So What Me Worry!

Happiness, pure happiness

Prompted by a post I just read on facebook, I must write my own little story of my children, whom I am so proud of. This one isn't about my munchkins though, this one is about my kids without "special needs".

I had the opportunity to be able to take my children to the movies on Father's Day. We decided to go see the Green Lantern in 3D! We love to get there a little early to get the "good seats" and just enjoy the whole movie going experience. We got there just in time so we were in a hurry to find our seats. We gave our tickets to the lady to tear them and tell us where to go. She was a beautiful girl, that is what I see, and I watched my children to see if that is how they would see her to. She had problems with her body, and with her speech that made it a little more difficult to do the job than it would have, let's say, my usually impatient children. We waited for her to get us our glasses, which was slow, but absolutely lovely. It gave me the greatest chance to see my kids, to really see my kids. They all had smiles on their faces. Dakotah's was the biggest and the happiest. They were very patient as this special lady handed them their glasses with hands that were hard to move due to contractures. As she explained to us where to go, my children stood there and listened to everyword she said, never trying to hurry her along or showing any annoyance what so ever. As we walked away, my soon to be 16 year old son, whose image is everything to him, said to me "Mom, that makes me very, happy." "What makes you very happy?" I said. To which he replied "that places are starting to recognize how special these people truly are, they deserve a chance to do all they can do, and we need to support their need to be independant all we can. So I am happy, because I saw how hard she was trying to do a job that most people would scoff over, doing movements that most people take for granted, that I take for granted."

I couldn't help but cry as his younger brother and sister, who completely look up to their older, handsome brother, echoed his sentiments down the hallway as we walked toward our theatre. Dakotah has always had a special love for those children like ours, the special needs ones. I was very happy to be able to see that love in action.

I've always asked myself, ever since I had Megan, what this would do to my family, what this would do to my kids without these "special needs". Would it be fair to ask them to sacrifice, to ask them to be so different from the other families they know. And I've learned through the years, that to be without these "special children" would be the sacrifice. My children have learned lessons that books could never teach them. Megan and Easton and Raegan have given us priceless gifts. The gift of empathy, patience, love, wisdom, and the understanding of what is important. Who is important.
Dakotah said one more thing with me that day that I must also share. He said "Mom, do you know what their secret is, why they are so happy? because they don't get caught up in the things that don't matter, they simply love." then he put on his glasses and the movie began to start. My son, the future Rock-n-Roll star, has learned some tough lessons in this life, he has seen more suffering than I would have ever liked for him to, but his words made my heart soar. He gets it, he really gets it!

End of the Brushing Experiment

Okay, it has been 2 weeks since we starting this new thing called "brushing" on Raegan. Looks like we are going to have to try it a bit longer. I have to be honest, I don't see any improvement in sleeping, eating or movement. It has only been 2 weeks though and Raegan tends to take things slowly, so I'm going to keep trying. A good friend of mine says that she really likes it for her son and that speaks volumes to me.
Raegan doesn't seem to be as "touch sensitive" on her feet, that is an improvement. I hope this means she will let me help her use her feet more in standing and pushing, etc....
Raegan has been off her g-tube for another week now, I don't know if that is due to the brushing or not, but I won't look a gift horse in the mouth.
Easton didn't take to the brushing at all, made him scream and cry, so we won't put him through it.
Megan didn't seem to mind at first, and is still pretty easy going about it, so I'll keep doing it with her too. I think she just enjoys the extra time I get to spend on just her, she loves the attention! Easton would just as soon sit and watch and make fun of his sisters. I guess he doesn't need the extra time with Mommy. He is a bit of a tough guy, doesn't want people to think he is a Momma's boy or anything! At least he hasn't resorted to wiping my kisses off yet, partly because I think he can't! But he gives me these looks like "geesh Mom!"
So even though our official experiment has ended, I will continue with the brushing. It honestly only takes a couple of minutes on each child. Hopefully, we will see some improvements and this will all pay off!

Brushing?! Hahahahaha!

Easton here, my Mommy said I could play on the computer a bit while she is down doing laundry. She said Claire tells on me anyway so I can't get away with being sneaky!
I have been feeling a lot better the past couple of weeks. I'm not on oxygen anymore and that is the BEST! I keep telling Mommy I need a haircut and I think she is finally going to give me one this weekend, as long as she doens't cut off my mohawk, I love my do.
My Mom has been "brushing" my little sister for a little over a week now, she tried it on me once because I was so darn curious. I didn't like it. My bratty little sister does though. I just have to laugh at her being "brushed" Hahahaha! What is she a dog or something? I know she is hairy and all, like an ape, but geesh. Mommy keeps giving me the eye, telling me I'm next. She is crazy. I don't mind it at all until she gets to my feet, then I just want to kick her to make her stop, way to much sensation! She keeps laughing at me and telling me to relax, crazy lady.
I have been wanting to spend more and more time on the cloud and less and less time in my wheelchair and other places my Mommy keeps trying to put me. She "negotiates" with me on how long I need to stay in each place, but with my stubborness and extrememly heart wrenching cry I end up getting my way, with a smile on my face when I do! Am I being a bit unreasonable, yes, but I can get away with it right? I'm cute! I know my Mommy wants me to be happy and comfortable and I know that I can't just stay in the comfy places ALL the time, but I can't help but complain when I am uncomfortable.
We have had some yucky rainy weather lately but it is clearing up! I'm gonna ask my Mom to let me swing today, it is so much fun! I can go really high, and it really makes me laugh. Sister can swing me to if Mommy will let her. My big sister can get a bit crazy, like me! So Mommy keeps a really good eye on her, but I wish she wouldn't, then we could get really wild.
Well, I need to tell my Mommy it is time for me to eat now, if I wake my sister up while I'm hollering she might get a bit upset but I'm HUNGRY! bye :-)

Brushing Day 1

Day one went well, Raegan fussed a bit when I got to her feet, but she is not as fussy tonight as she was this morning, so I will view that as an improvement!
Megan and Easton were giving me the eye as I was doing this so called "brushing" with Raegan. Easton, always the skeptical one, was curious as to why I was "brushing" his little sister. So I decided why not, I'm up for new things all the time, let's see how Easton handles it. He wasn't sure, but he did handle it better than I thought he would, he can be so touch sensitive, especially with his hands and feet.
Megan was next and she handled it as I expected, which was very well. So I am going to do the brushing experiment in triplicate. It will be interesting to see the effects, if any, it has on my trio and how different, or alike, they will be!