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I’m Not Alone!

7 Jul

I typically don’t vent on my blog, and am definitely not in a place where I need a pity party. I am at a place where I need complete honesty with somebody other than just my family and super close friends.

I need to say it out loud and just declare it. I AM A GOOD MOTHER, but I don’t know how to parent my youngest child. I feel so alone. I know there will definitely be lots of people who read this and feel like I am speaking their thoughts as well.

Many of you already know that my oldest child has a rare genetic disorder called Prader Willi Syndrome. I read it described recently as the starvation syndrome. He also has sensory processing disorder and autism.

What many of you don’t know is that my youngest son has most recently been diagnosed with ADHD, a mood disorder (bi-polar) but they won’t call it that for his age group, and he is definitely exhibiting behaviors of Aspbergers.

I have spent the last 3 years wrapping my brain around PWS and Autism. I get it. I can work through it. I even get the ADHD even though it is so overwhelming and he is so frantic all day that I am worn out. What I don’t get, what I am struggling with, what I feel so alone with is the mood disorder.

I joined a support group for parents of bi-polar children. It has been amazing. What an amazing group of people. One of them suggested that I read a book entitled, “The Explosive Child“  by Ross W. Greene. I want to cry as I read word for word what is a description of life with my youngest son.

In the book one of the mothers says, “Can you imagine being scared of your own child?” She then said, “I am!” My youngest son is only 3 years old and there are more days than not where I am scared of him, scared of his rages, scared of his violent temper. I am able to ignore now but I have had more than enough of people telling me how to parent him, spank him, discipline or reward him and so on.

Let me just get this out in the air. Children who suffer from mood or psychiatric disorders DO NOT RESPOND TO NORMAL CONSEQUENCES. I am not a bad mother and my son is not just a brat who doesn’t get spanked enough.

I love my son more than anything in this universe. I sleep with him every night and we cuddle and he tells me I am beautiful. His intelligence is unbelievable, and I love having unique conversations with him. I am however am emotionally drained. I feel in my heart that with my continued meditation and yoga that I can handle it, as devastatingly draining as it is. It is him that I feel for, I can’t imagine his soul feels good in such turmoil all day long. It’s almost like he is a prisoner in his little adorable body. When the rages come on, he just can’t stop.

I have decided to do is keep our house as organized as possible. I am on a mission to keep as few distractions for him and my older son. Today I went full force. I packed up almost the entire playroom. I have 4 huge bags for donation and the rest of unused but usable later in life are packed up and put away. I kept the swing in the room and some books and a few cars. This room will now be our quiet space. I will have a quiet space to meditate and they will have a quiet space to decompress as well. I am even thinking of adding some black out lights for a sensory experience. I am feeling really hopeful that this might be helping us move in the right direction.

I am writing this post for all the other parents of “Explosive Children” whatever your diagnosis may be. I am writing this to say you are not alone. I am writing this to say you are a GOOD PARENT. I am writing to say that it is absolutely ok to say that you need help. I am writing this to say it is ok to say you are depleted and need a recharge.

Through all of this I will keep researching and keep loving my son until I find what works for him. In the meantime for all the parents out there who know a family or a child like this, I ask that you have compassion in your heart when you are in your dealings with them. They are lovable and want to do well if they can.

I will not give up on either of my sons.

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My Secret Confession

6 Jul

I thought I would lighten the mood tonight and come forward with my super secret confession.

Since I was in the 6th grade and fell in love with The New Kids on the Block, I have loved Pop music. Yes, I said it! Cheezy pop music that you don’t dare admit you like.

My friend Emily who writes an amazing blog about her journey with her son with Tay-Sachs. She had written awhile back about listening to pop music in her car, singing at the top of her lungs, and just feeling good. I read that and thought. Oh my god that is totally me. Of course this is not the only music I listen too, but when I am in my car it just gets me going, gets my kids dancing, and suddenly sometimes things just seem not so bad.

It was another scorching hot day here in Georgia. We drove with the air conditioner on full blast, as in arctic chill cold. Then I hear those little voices from the back seat, “put on a song mommy!” So pop music it is, and they are rocking out, and so am I. We are bopping our heads, moving our bodies, and singing like we don’t care who hears us. It brings such a smile to my face. I am so grateful for moments like that, moments that exist amidst the chaotic storm that is usually brewing all around me.

As Kelly Clarkson‘s “Stronger” came on everybody was singing. So yes, it’s true I love Kelly Clarkson. I feel stronger when I am singing that song. Of course I am not singing about being broken-hearted, but I am singing about being stronger. I have always heard, thought, and said….WHAT DOESN’T KILL YOU MAKES YOU STRONGER.

I this to myself all the time when I think of losing my dad, living thousands of miles away from my family, and the diagnosis that both my children carry. So yeah when Kelly is singing I am singing right there with her. It makes me feel good, and I can not lie, I really like feeling good these days.

Amazing how you can relearn to do things. I learned how to feel good and find joy in my life from the inside out, not from the outside in. It really has been a bumpy road, but I am getting so much better. I felt a feeling all day that wouldn’t go away. It is a great feeling. I wish everybody felt this feeling. What is this feeling?

I am grateful. I am so very grateful.

As I sing and dance to cheesy pop music in my car, I am reminded how grateful I am to have ears to hear music with, a voice to sing with, and a body to dance with. I am grateful to have kids that think my singing is awesome, and that when I talk to myself in the car it is funny. I am grateful today and everyday.

 

So rise up with me and confess what makes you feel good, what brings you joy, what makes you grateful?

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We are Special

26 May

I received a message yesterday from my sister to call her right away. I was physically and emotionally exhausted but I called. As I listened to her on the other end of the line say, “My friend has a friend with a 5 week old baby just diagnosed with Prader Willi Syndrome, can you call her please?” Normally I would have hung up  the phone and called her straight away, however I live by the new principle of I CAN’T GIVE TO YOU WHAT I DON’T HAVE!  So I told my sister to give me 2 hours and that I would call her. I did call and left a message. Blaise then called her a few times too, haha!

We finally connected this morning and it was beautiful. It felt really amazing and interesting to be the one comforting. I sat and thought to myself what would I want to hear if my child was newly diagnosed? What would I say to me 3 years ago? What are the most important things to really get across?

So I started with the most obvious. Please allow yourself time to grieve. There is a grieving process and we often overlook it and the role it plays in the healing process. Then it was the obvious things to be HONEST. Here is the truth my son is amazing, Prader Willi Syndrome sucks but we are a pretty normal family, living a pretty normal life. I also found myself saying something that nobody said to me in those first few days. It makes such sense to me. FIND WHAT WORKS FOR YOUR FAMILY AND DO THAT! As long as your child is healthy, their labs are good and they are growing then you just do what you need to do to make your family work. I love how natural that felt. I love how it releases you from so much guilt over doing things the “right” way or the “wrong” way.

I shared honestly with this beautiful woman that there will be down days, but there will be so many up days. So many days filled with joyl

The most important things I found myself saying to her was very real and true to my heart. I told her the following:

AS THE PARENT OF A CHILD WITH SPECIAL NEEDS YOU LEARN TO APPRECIATE EVERYTHING even the smallest things mean so much. This not only applies to your child with special needs, but all your children. You take nothing for granted and learn to see the beauty in all the things that your kids do.

It all felt so natural coming out of my mouth,it all felt so real. When my sweet angel was diagnosed I was blessed to talk with 2 amazing people in that first day who have family with PWS. It was a life saver for me, it was my life raft because I was drowning in sadness.

Now I tell you this: 3 years later PWS is just a part of my life, it is my “normal.” I LOVE MY SON WITH EVERY OUNCE OF MY BEING. I don’t sit around and wish he didn’t have PWS I don’t him any other way. He is blossoming into such an amazing young man, and he and his brother are growing up to such amazing young men. I am blessed. My child says please and thank you, he tells me he loves me, and he smiles all day long. I don’t care what that genetic test says, he is perfect in my eyes.

Yes, I have my Broken Heart Syndrome moments, but they are getting less and less these days. As I am on my spiritual journey and deepening my love for myself and practicing loving myself, it is easier to accept all others around me. I love my child just the way he is PWS, Autism and all the rest of the wacky things that his body decided to give him.

Be grateful for everything. Even if it seems like a terrible tragedy or a terrible loss, it may really be a glorious blessing.

Be grateful for everything. Even if it seems like a terrible tragedy or a terrible loss, it may really be a glorious blessing.

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Time for Healing

23 May

I believe there are some people who manage the stress of life and never let it get to a dangerous level. I believe there are people who don’t let stress effect them at all, and then there are the people who push it down and down until eventually they explode or sometimes it feels like an implosion.

I was told yesterday that I am a caretaker. I was told that being the mother of two young children is challenging enough, then you add a medical condition or special needs in the mix and it’s a whole new bag of worms. I was telling this woman that I am tired, depleted, feeling as if I have cracked and can’t snap out of it. She told me that was common for caretakers, that we are often tired, overwhelmed, and drained of energy.

I don’t mind being a caretaker, in fact it is quite an honor, but I have decided to not make apologies anymore. I am taking the time to heal. I DESERVE IT. I need to heal my soul, my spirit, and my physical body.

Yoga and meditation have been a life saver for me. When I am in the yoga studio the whole entire world melts away. All the stress of my life just disappears and I am totally present in doing the practice. When I am meditating it is my time, my time to heal, my time to go inward and get what I need.

I realize that I struggle with that. I struggle with just merely saying, I am tired I need rest. I am tired I don’t want to cook tonight, I am tired I want to sit quietly alone, or I am tired and I just don’t have any energy to hug or be there for you.

It’s ok. Remember we can’t give from what we don’t have.

I don’t know if it’s my age, or just my commitment to my life, or renewed commitment to myself, but I am deep in the healing process. I am more alive than I have ever been before while simultaneously going to places that I have shut down or never even opened before.

As my yoga teacher training progresses I am not only pushing my body to new physical limits but my mind as well. There is so much more to yoga than just the asana practice. For me it is a way of living. How can I best serve my spirit, my body, and those around me?This is the reality I live in nowadays. I am in love with it all.

I do believe that the extreme fatigue I am feeling is a by product of an extremely deep detoxification of the soul, and eventually purification.

I believe something very powerful happened to me recently. I don’t want to call it a nervous breakdown, but more like a “nervous breakthrough!” Something very powerful just clicked inside me. I just knew it right at that moment that I needed to heal, slow down, and move forward. It was an earth moving sensation and I haven’t stopped to look back. I am deserving, I am deserving, I am deserving. This is my mantra currently. It is helping me deal with the guilt of asking for what I should always have readily available, time to love and nourish myself.

So I will end this post tonight with all my fellow caretakers in mind. Before you all go to bed tonight say the mantra to yourself at least 3 times.

I AM DESERVING, I AM DESERVING, I AM DESERVING.

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Open Those Hips

21 May

I can’t believe I am actually halfway through yoga teacher training.

I can’t believe how it has turned out to be nothing that I expected, and everything that I dreamed for.

This journey is such a powerful one. There is much work to be done, and I am happy to be getting busy doing it.

I will not reveal all the intimacies of my individual teacher training, but I will say that it has been a sublime experience. I am most definitely not the same woman I was when it all began. This past weekend in particular really stirred up the pot within me. So here I am on this Monday afternoon and I am experiencing a whole host of emotions and physically altered. I spent the vast majority of my weekend and the week prior working on “OPENING THOSE HIPS.”

It has been said that hip openers are big on releasing emotions. I have been slowly getting rid of so much stuff, but this weekend was like I cleared out the house and had  a major estate sale on pent-up feelings and junk.

I have physically never felt so open in my hips before. It is a liberating feeling. I am walking differently and feel much more centered. I love the evolution. I love watching myself from the outside as I shift and change and become the woman I see in my dreams.

I am an anxious person, and having 2 very demanding children has left me feeling frazzled and depleted on more and more days lately. Everybody under the sun told me to start meditating. Well, for some that might be an easy task, not for me. I am the person who just can’t shut the brain off, I can’t cease the conversation in my head, not even in my sleep. That is until last week. YES!!! I was finally taught to meditate, and to my chagrin I could actually accomplish a meditation. I felt like I had climbed Mt. Everest. I can only say. I have been meditating for a little over a week and the changes within myself are very noticeable and pleasing.

I am here at the table and a storm is brewing outside and inside, literally. I am unshaken. Maddock is screaming and yelling and hitting and I am a rock, impenetrable. I no longer have that feeling that I am going to explode and burst into a million little pieces. I feel like those old school clown toys that you used to punch and bounced right back up. Not that I am a doormat, but I can take a lickin’ and keep on ticking. I can’t wait to see where this journey leads me, just how far I can go with myself, to discover my true divine self.

I have spent a considerable amount of time lately frustrated with people who are uncomfortable with the fact that I am changing. So I made a choice as to how I would let this affect me. I chose to send them love. They are either scared of what they don’t know or understand, or scared that I am going to leave to go off in search of some higher spiritual enlightenment. In reality I am on a spiritual journey, but it is all in an effort to be a better human while I am on this planet. I am in awe of the possibilities that exist when I the best version of myself. What careers are out there for me? What new friends are awaiting me? What new journey is there waiting to be taken? I am full of joy at the possibility of clearing out the old to make room for all the new. It is totally awesome, for lack of a better word. Yes, there are plenty of “not so awesome” days to get through to the good stuff, but I am grateful for it all. I am grateful for all the experiences that come my way because I am here to experience them. I realize that I am only 4 years younger than my amazing dad was when his body left this earth. I am committed to filling my life and my heart with as much love and life as possible. I want to pass on to my children to fully live their lives with integrity, joy, happiness and fun. I think the best way to accomplish this goal is to lead by example so here I am.

I am welcoming a career that I love that will provide for my family. I am welcoming having children who know what it means to truly love who you are, as you are. I welcome the opportunity to live a life where work is a choice and not a “have to.” I welcome waking up every morning and being excited to start the day, even if that day is filled with the not fun stuff in life. I welcome being completely able to change and shift and grow until the day my human self leaves this earth.

They don’t call it a yoga practice for nothing, or a meditation practice or the like. This stuff takes work, commitment to yourself and those around you. I see the bigger picture. I see the end. I see how I have already made my life richer and fuller just by learning to live to be my authentic self. Scared, inspired, liberated, nervous, and hopeful. That is all me, oh there is so much more, but for the sake of not writing novel I will leave the rest to the imagination.

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