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.