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!

The Brushing Experiment

I'm going to try something on Raegan that her therapist recommended. It is called "brushing". What I do is take a plastic brush, resembling the brushes you get at the hospital when your baby is born, the one they use in baths, just minus the sponge part.
7 times a day I take the brush and go up and down Raegan's legs, feet, arms, hands, and back. This only takes about 1 to 2 minutes. Then I do compressions on her spine, hips, major joints, and finally on her chest. I'll try to have someone take pictures of me doing this to help explain it better. We start at 7:30 in the morning and then repeating the proceedure every 2 hours until bedtime.
Brushing is supposed to help with eating, sleeping, and movement. I'm giving it 2 weeks to show me what it can do for Raegan. She isn't a big fan of it so far, but it is over with so quickly that she doesn't have much time to get upset. The whole proceedure only takes less than 5 minutes.
I really pray this helps with her eating, she has been without her feeding tube for a whole month now! But she is wanting to eat in little bits, like a bird, which I don't mind during the day, but I don't like it at night. I have a machine that will feed her at night but I don't want to use it unless I absolutely have to, so this is kind of a last resort option. Let's keep our fingers and toes crossed that the "brushing" will work like it is supposed to!

Oh Boy!

What a wild ride this past month has been. Where to start? I could start with the coulda woulda shoulda's but I won't. I think we all know where that gets us. So ever onward and upward.
Megan has had a battle the last few months with bronchitis, it took her the longest time ever to get over it and she is still struggling a bit. She still needs oxygen at night, but she is fine without it during the day. She is happy as ever and smiles all the time. Since we switched her food, she has a lot less tummy problems and is spitting a lot less too. She is not gagging as much and that is a triumph!
Easton has had his battles with pneumonia. Very scary stuff for a rhizokid. He toughed it out though and is now oxygen free! Woo Hoo! He is such a fighter and does so with a smile on his face for his Momma. How can I put into words how much his smile means to me? Impossible, but if you're a momma then you understand and I won't have to.
Raegan has had her battles with ear infections, coughs, and sore throats. We had quite the setback with her eating solids through her mouth because of her not wanting to swallow, due to a sore throat. She isn't quite back on track yet, but she is eating all of her formula through her bottle without the need for supplementing at night through a tube. I am VERY happy with this, she is much prettier without a tube in her nose, and she much prefers it!
I have gotten a swing for the babies that has been so much fun for them:

They absolutely love to swing and now that they are oxygen free they can enjoy it even better, (without the tubes!) It was the best $60 investment I've ever made. Their smiling faces and their laughter is priceless.

We are now waiting for the weather to warm up a bit so that we can spend much needed time outdoors soaking up the sun (come on Vitamin D!)

Raegan has a bit of the sniffles (darn spring colds), so we are inside bound for the time while I try to help her fight this lastest irritation.

Raegan's therapy is going well and she makes improvements every day. She is getting very good at controling her head and she is also very proud of this, her huge smiles when she does it gives her away everytime. Her legs are getting straighter and she is becoming very good at batting and trying to grab object with her cute itty bitty hands. She laughs at herself sometimes and that is a priceless treasure for me also. She loves her floor gym and has a great time playing in it.

Megan is talking to me at the moment, and I'm not sure if she wants me to post what she is saying or not, so maybe I will leave that to her, I know she loves to play on the computer when I am not looking. Easton taught her and cheers her on! So be on the watch for posts from Megan and Easton as I'm sure they have plenty to say!