Time For Truth

Ok. Here goes. Inspired by my dear friend Gwen and her insistence on blogging and bearing her heart. Also inspired by another dear friend Mark and his reminder of doing things for yourself too.
Today has been a bad day. Not a rough day physically, lazy in fact. But emotionally a bad day. As I begin to write this that sweet insistent voice inside my head is screaming HUSH! I am a positive person. I am ever searching for that silver lining. If it isn't there I will put it there. I have crayons. But that's what I DO. Not what I FEEL. I FEEL like screaming most days. I FEEL like crying most days. Screaming scares people and crying just ends up giving me a horrible headache so I usually don't. I float. I float somewhere between hope and despair. A phrase from a well known movie "Finding Nemo" is one I quote quite often, "Just keep swimming." That is how I would describe my life. Did I mention I'm afraid of water? So here I am, where I would never have chosen to be, trying to find a life preserver.
Guilt. There is a word that occupies my every day. I fail everyday. That's it. No way around it, I'm an imperfect being. When I fail, my child could die. That's a hard pill to swallow. Yeah, woe is me. I'm learning lessons I would have never learned. Becoming someone I would have never became. I am grateful. Most of the time. Is it horrible when I am not? Is it horrible to want a life that is "normal?" Is it horrible to have dreams where you made different choices? I guess it is if you dwell on it. It can keep you from "smelling the roses" so to speak.
So much has happened in my life these past 6 months. There have been times when I honestly wanted to stop. Where I wished for a special watch that could actually freeze time and stay that way. There were some days where I just checked out...they were to hard to bear. I had a nurse refer to me as "stoic" yeah, that's one of those check out times. They asked me when Raegan got her trach if this was something I really wanted to go through with. "She is going to die anyway, she has a terminal condition. Are you sure this is something you will want to deal with?" I wanted to scream at her, "NO!!! I DO NOT WANT TO DO THIS!" My baby was fine!! What went wrong?? Why did this have to happen?? Was it my fault?? Did she aspirate that time when she threw up? Did I allow this to happen to my sweet Raegan? Of course I wanted her to live, of course I would do whatever was necessary to make that happen. Of course I wanted her to be happy and have a good quality of life. How could I possibly make this decision? I remember sitting in a tiny parent's room on a little bed just being woken up and asked to make this decision. Hard cannot describe how this was to deal with. Yet I must, there is no time to feel, no time to discuss, do you want your daughter or not? No question, of course I do.
So that brings us to today. Why I felt so utterly horrible. It was time to Raegan's trach care. Chad was gone. Do I attempt to do it myself? Sure, why not I've done it before. That was it. I started to cry. I didn't want to see that horrible hole in my daughter's neck. I DID NOT. But, she needed it done. I didn't do it. I decided to wait for Chad to get back. That was it. I was a horrible mother. I needed to buck up but I cared more about how I felt that I cared about what Raegan needed. Bad mom. I am not amazing. I am not an angel. I have A LOT of questions for God.
I have 3 children who are going to die. That's it. I have to deal with it. We are all going to die right? I've heard that line before and I try to use it often to fight away that demon called despair but it doesn't always work. Sometimes he calls my bluff. My friend Jess called this kind of despair "anticipated grief." Okay. Great, it has a name. Now what? Be sad. Feel the feelings. Choose how to act. Move on. Nice plan. Looks good on paper but it isn't that easy. I am human after all. I constantly struggle with that "natural woman." I do not WANT to change Raegan's trach. I do not WANT to suction her out every time she coughs. I do not WANT to organize supplies every month. I do not WANT to get a blood gas for her in the middle of January. I do not WANT to struggle to sit Easton up every time I want to give him a bath. I do not WANT to hear Megan cry every time I brush her teeth. So what? There are people everywhere doing things they do not WANT to do everyday just to survive. What right do I have to complain? Because it's how I FEEL. I've decided negativity is like a poison, if I feel it I must extract it. Look at it, then let it know I have a choice.
During my times of deepest struggle, I have reached out. I don't leave the house very often but thanks to technology I have the internet...and Facebook. The world at my fingertips. I can reach out and be supported with so much love and energy. It is fantastic. People supporting people. That is my kind of world. Thanks to Carla, a wonderful woman the universe sent to me just in time for Raegan to get her trach...her son has a trach also. She has been an awesome friend and an invaluable supporter during my most difficult times. So many wonderful friends that I have been blessed with come to mind. I would count myself lucky to have but one of them.
Thank you for letting me vent. Negativity has been purged. I love the way my children laugh. Even Raegan, with her silent laughter is a wonderful sight. I am blessed. I have three of the happiest children in the world. I get to take care of them everyday. They truly are a joy. I would not be the person I am today without each one of my children. They have all put me through their own fire. I do look forward. Maybe only into tomorrow, but I do look forward.

My Alphabet of Gratitude...Letter X!

Definition

By Mayo Clinic staff

An X-ray is a quick, painless test that produces images of the structures inside your body — particularly your bones.

X-ray beams can pass through your body, but they are absorbed in different amounts depending on the density of the material they pass through. Dense materials, such as bone and metal, show up as white on X-rays. The air in your lungs shows up as black. Fat and muscle appear as varying shades of gray.

For some types of X-ray tests, a contrast medium — such as iodine or barium — is introduced into your body to provide greater detail on the X-ray images.

I have had the priveledge to witness some of the amazing marvels of man throughout my years. I have always been captivated and fascinated by it although I admit I do not at all understand it. It blows my mind to think that someone, somewhere came up with the idea that gave us the ability to see I side the human body. What a wonder! These X-rays have helped the doctors so much in taking care of Raegan and helping her body through this difficult sickness. The nurses and doctors have shared their knowledge with me about what they see on the X-rays so I am able to understand and feel more comfortable about what is going on with my daughter. The black in her lungs is good, the white is not. Simple enough. Through X-rays we have been able to catch things early and treat them quick. Raegan is back on the road to recovery. But I can't just stop at the X-rays. What about those trained to take them and read them. The people who invented the film, and the computer at which I'm able to view images of my daughter thought impossible just decades ago. As all the hustle and bustle is going on around me, I think of all the accumulated knowledge being used for the benefit of my family and I am deeply humbled. There is not one thing in Raegan's hospital room that I came up with. Not one single thing. And yet, we enjoy the benefit of the ideas and hard work of many. My daughter is alive because of community. As I look back over this experience through the years I will undoubtedly learn other things. The process of the journey. There are times, in the high alert setting of the PICU that I have learned to live literally moment by moment. I have learned to surrender. I have taken baby steps of my own in healing and growing. To be grateful for the machines that my daughter is on and yet have to see her in them is a dance with the bitter sweet. It is hard. There's were times when I felt utterly overcome with grief at the sight of my sweet baby struggling for her life. There were moments when I wondered if she would live or die. Horrible, heart wrenching moments of pure agony when all I could do was surrender. Surrender or fall apart. It is a choice. It is always a choice. And it is mine to make. I know the harsh reality of RCDP. I am in no denial that my little munchkins will more than likely die in a scenario much like this one. I pray and hope that ths isn't the time of course. But I know I'm not the one in charge. Not at all. So I pray, literally beg at times for Raegan to be allowed to return home with me for just a little while longer.  We are not out of the woods yet but I'm pretty sure for this time anyway God said yes. I literally breath a sigh of thankful relief as I appreciate my children on a deeper and more understanding level. I have had many loving and supportive friends that have made all the difference in the world to me. The support and love were tangible and sustained me through very difficult times. I thank you all for your support and prayers. Raegan will be going home soon, maybe within the next week and that is good. Yes, that is very, very good. God bless. 

Raegan's therapy

My little Raegan is doing so well with her therapy I just had to take a moment and do a little bragging on my sweet baby Ray. She is tolerating the whole hour now. Just a year ago she could barely handle 30 minutes and there was a lot of complaining and crying to be heard. It was very hard as a mother to watch. I asked myself several times if I was doing the right thing for Raegan. I always try to balance quality with quantity but quality usually wins. It is a difficult struggle. I hate to see her crying and in what seems to be to be pain. It makes me feel so terrible. I just want to hold her and comfort her and tell her she doesn't need to do this nasty therapy. But I don't. I've tried to be patient and listen to her, to let Raegan be in control of herself as much as she can. So we kept up with her therapy and sure enough she has not only endured it she has started to thrive in it. Raegan is so very tenacious and I absolutely love that about her. Thank you to my sweet little Ray for teaching me to never give up, to work hard, and to enjoy it in the end. I love to watch her work and grow and figure things out. I love that she is showing us just how stubborn and unstoppable she really is. You go girl!

My Alphabet Of Gratitude...Letter W is for Water!

Water = Life. You can drink it, cook with it, bathe in it, swim in it, splash in it, sail on it, and clean with it. Some people use it as you would a road, some people even live on it. It falls from the sky, can be turned into a gas or a solid. It's what causes our crops to grow. It forges canyons, bridges and other magnificent natural works of art. It also makes my munchkins smile. Priceless. Nothing makes my little Easton happier than floating in warm water. He is part fish, I swear. Either that or he fancies himself a merman. Either way, He loves it. He could spend hours in the water with no problem, even cries when I take him out when he isn't quite ready to say goodbye to the wet stuff. How pruned can his feet actually get? Very.
Megan loves her baths too. She doesn't swim like Easton does. She simply enjoys the warm water buoying her up. The weightlessness is what she truly enjoys. She loves to sleep surrounded by water. She always looks so peaceful, so content, so comfortable.
Raegan isn't to hip on the bath scene but she does love her showers! That's right, I said showers. It was hard for me to believe at first, I thought it would pass. It didn't. Ever since she was a newborn she has loved the water hitting her in the face and the back. Her tummy, her feet, she doesn't care. She smiles and giggles at times, it is quite the special moment.
Water. Amazing. Simple and yet profound. We would literally die without it. And yet, I know I take it for granted too. I couldn't imagine a day without water, and yet I know there are many in the world that can, that do. I know how blessed I am to live where I do and have the resources available to me that I do. I can simply turn on a tap and out it comes. I happen to have a well that my water comes from so I also believe it is the best tasting...not to mention free. I don't have to hike anywhere to get it. I don't have to get it out of a dirty ditch. I don't have to wonder where I am going to get it. There might come a day when that changes, I don't know, I do know that today it is readily available to me. I thank God for it whenever I see my babies smiling in it, or when I smell my sweet Hannah's hair freshly washed in it. Whenever I am thirsty or have clean dishes or clean clothes. Whenever I see a beautiful waterfall, or a rainbow in the sky, I am thankful for water.

My Alphabet Of Gratitude...Letter V is for Valor!

Valor is defined in the dictionary as bravery, courage or boldness. Strength of mind or spirit that enables a person to encounter danger with firmness. Personal bravery. To be strong.

I have been blessed with seven glorious children. I love them all very much. They have all taught me many unique and special lessons. They have humbled me with their spirits, with their personalities and with their lives. Three of these children I refer to quite often as the Munchkin Trifecta. They are my trio of little people, my babies, my passion. It is them that I would like to thank for their valor. My faith teaches me many things about why my babies are here, what their purpose is, what their future is. You don't have to believe like I do to see how valiant these children truly are though. I am so very grateful to live in the time that I do. The internet is an amazing gift. I have been blessed through this gift to be able to share in many children's lives that have the same condition my trifecta has. Our group is refered to as Rhizokids. I see such valor in each and every one of these children's eyes. I see their strength in their smiles. I see their courage when they are faced with odds that would scare the bravest of men. I can feel their spirit and strength even through their pictures.
These children fight a battle everyday. A battle to simply survive. But most of the time you wouldn't know it by looking at them. They usually have a smile on their face and a giggle on their lips. I've seen them put into contraptions that give me nightmares, I've had to put mine in some of these contraptions myself! Any yet, they smile. They remind me to be a little more couragious. A little stronger, braver. If they can do it so can I! Right?
All of my children have had surgeries right after birth as most RCDP children have. Cataract surgery. Yuck. Seeing those huge eye patches on your baby's little bitty face is tear wrenching. They endure braces, splints, casts, and tubes just to name a few. Some have even had to have their tiny little hearts mended. Some have never left the hospital. To look into their eyes and see such strength, even in the littlest ones can be lifechanging. I often find myself telling my Munchkins that I would trade places with them in a heartbeat if I could. I wonder if I could handle what they do with the valor that they do. I don't think so, that's why God put me in this body instead of theirs. They have proven themselves, they are warriors. I am here to learn from them.
I also think of the many wondeful mothers and families of RCDP children that I have met online. I would also describe this awesome group of people as valiant. Most of us have had our children born to us, but some in our group have joined voluntarily so to speak, by adopting and taking care of these special children. This screams valor to me. To know what you are up against and to dive in anyway, knowing the future holds heartache. I'm sure if their little RCDP children could mouth the words "Thank You" to them, they would...repeatedly! But since they can't let me be their representative by saying how truly valiant you are.
To each of my special RCDP angels here and in heaven I say thank you for your valiant lives. Thank you for your strength and your smiles. Thank You for showing me how to fight and how to live. Thank you for teaching me what is important and what is not. Thank you for fighting this battle with all the joy that you do. I love each and everyone of you!
To my Trifecta, my Megan, Easton and Raegan, my heart swells when I think of you. Each one of you has such strength of spirit and heart. I can not imagine my life without you. I love you more than words could ever say.

My Alphabet Of Gratititude...Letter U is for Understanding!

I was at the grocery store with Megan when she was just a baby. A young girl in line behind me asked her Mom why the baby had a tube in her nose. Her mom was very kind and told her to ask me, I thought that was fabulous. The way the little girl looked at Megan as she asked, the pure innocent curiousity in her eyes, made my heart melt. I told her what Megan had in the best and least confusing way I could. Her mom thanked me and that was that. I've gotten very used to encounters like this over the years. I've never minded the children, and the adults with kindness behind their curiosity. I know they just want to understand what is different and unusual to them. I try to explain to all those who are curious just what it is like having a child with RCDP. The little things you don't normally think of, like being able to scratch your nose, Megan and Easton can't do. There is a whole list of things they can't do...it goes on for miles. It can be heartbreaking if I dwell on it. What I want people to understand, really understand, is what they can do. It's a list that is not so long but what it says is incredible. Megan, Easton and Raegan can understand. Simple. Understand what you say? Anything. Everything. I assume they know it all, hear it all, and comprehend it all. If I'm wrong, oh well. If I'm right, ask yourself this, would you treat them any differently? Not just my trifecta, anybody who has special needs, anybody who can't speak for themselves and put into words what they know, how they feel, what they want, etc... Would you talk about them as if they were in the room or not? Would you talk TO them instead of by them? Would you listen to hear if they had anything in response, in anyway? I've asked myself these questions many times. My little munchkins have given me many many moments to answer myself. I truly love it when I meet someone who understands how to treat my children. Someone who will look my child in the eye and speak directly to them. Someone who is not afraid to ask questions, someone who isn't afraid to touch them, hold them, kiss them. I've met so many of these wonderful people. My little angels recongnize their wonderful spirit and heart right away. I appreciate their kindness and yes, their understanding.
Understand that these children aren't that different. They need the basics we all need, love, shelter, food. They need to be played with, sang to, danced with, snuggled with...all the things every other child wants and needs. They need special things too like therapy and equipment, but those things are physical and I guess I'm talking more about the mental. Understand they want to be recognized and appreciated too. They want to learn and they want to see how excited you get for them.
Understand that these children are not vegetables. They are not useless, they do not simply exist. Please. Don't stare and say rude things behind back's because you think they can't hear. They can. Don't gaze at them with utter pitty and cluck your tongue because they will understand that too. Treat them as you would want to be treated. Drool isn't toxic. Dwarfism isn't contagious.

I am so thankful for all of you who do understand. All of you who have gone out of your way at times to treat my little muchkins with such kindness and understanding. When Easton looks at you with that little twinkle in his eye you will have no doubt that he knows you, sees you, and understands you! When Megan lights up at the sight of you and babbles with you for a while you will know how much she knows. When Raegan looks you right in the eye and laughs because you said your were going to get her there is no mistaking she understood you. I'm spending my life trying to understand them. I couldn't think of a better way to spend it!

My Alphabet of Gratitude...Letter T is for Therapists!

I have had the opportunity, through my wonderful Munchkin Trifecta, to meet many wonderful therapists. My children have worked and are working with physical, occupational, visual, and play therapists in the past 10 years. I have learned many educational things from them, including how the muscles work, what it takes to move this part this way or that way and why it's even important. Therapists come to my home just about every day of the week. They have become a part of my family in a way. Many of them have become dear friends. I know as much about their lives and families as they do mine. They have all come to love and adore my children and my children them. We have exchanged laughs and tears. We have watched as my children do the simplest things and have shouted in joy together over it. They have taught me how to do things I thought I would have to go to school for. I appreciate the time they take to listen to my children and what they are saying to them. They understand them almost as well as I do, in some ways better. I have been blessed with so many wonderful personalities, so much caring, and a great amount of knowledge through these awesome people I call therapists. They not only have healing hands, they have healing hearts. I can't imagine my babies world without them, I can't imagine having to do it all on my own. Doing therapy on my children myself can be heartbreaking for me, I am so very thankful I have their support and guidance. It is so nice to know on the days they come over I don't have to do that particular therapy on my child that day and it is such a great relief. I have come to find that therapists, at least the ones I know, go way beyond the therapy aspect of their job. They invest their whole hearts in the children they work with. I can see the love in their faces. The smiles my children give them are all I need to know they are happy with them and they love them too, even though at times they can make them cry. The work my little Trifecta have to do can be very hard at times. I marvel at their strength and endurance. I also marvel at a person who can do this type of work for a living. Traveling from house to house. From child to child, making them do things they really don't want to sometimes can be very draining I'm sure. I hope they know how much they are appreciated in my house. How much I love the work they do and how much I depend on it. I am so very thankful to live in a place where my children can even receive therapy. So to all of you therapists out there I say Thank You! You are loved and appreciated more than words can say...just as the Munchkin Trifecta!