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!