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.