Tag Archives: Warrior Mom

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.

Angels in Heaven

22 May

I have convinced myself that every time somebody I love passes they become angels. I created this idea in my head at the ripe old age of 5, after the passing of my beloved father. I not only believed he was my angel but I believed that he was the brightest star in the sky at night. There have been hundreds of nights over the last almost 30 years where I have looked up at night, seen that star and thought to myself, “hi dad, I miss you and thanks for looking out for me.”

The thought sounds nice right, it is just one way I chose to learn to deal with grief. When my beloved Gunner, our first dog, was laid to rest I told my children now they had another angel in heaven looking down on them. This they understand and once again I find comfort in knowing I have a whole bunch of amazing people on my side, up there.

All that being said it brings little comfort as the news comes of another Prader Willi Syndrome child who lost their life from the syndrome. Dear sweet Lexus, who I never met, but none the less feel a connection with. Only 17 years old and a week before graduation Lexus has made her way to heaven. I know that she will be another angel looking down and protecting us, but it still doesn’t feel fair.

My heart aches for her family, she was the first thing I thought of this morning as I opened my eyes. She was the last thing I thought of last night as I closed my eyes. It is a very real wake up call to all PWS families. Not only is the thought of losing a child beyond terrifying, but our kids have PWS, it could be one of our kids next. That hits really close to home.

I had an incident this week with Blaise ingesting medication, even with the child safety lock on he managed to get the lid off and drink the bottle. My heart stopped and it hit me like a sledge hammer to the head. My child could DIE because he is so hungry he would drink medicine because it tastes good.

I don’t want to sit here and slam PWS and say how much I hate it and what it does to all those who suffer from it, that is a given. I want to say this. WE MUST FIND A CURE, A TREATMENT, A PLAN OF ACTION TO SAVE OUR KIDS. I am committed in every way that I can be to letting Blaise reach his full potential and live a long and full life. I want this for all kids and adults with PWS. They all deserve a chance.

The thought of this syndrome taking my son’s life is beyond my realm of thought. I will never give up the hope of a better future for him.

If there ever was a cause that needed your support I believe it is helping to find a cure for PWS. How can we do this? We can through research. Please consider taking the time to learn more and even consider making a small donation.

please visit

www.fpwr.org

www.pwsausa.org

I am hosting a One Small Step walk here in Georgia for my son Blaise.

Come and join us and help us find a cure.

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.

Maria Lin: 6 Things You Don’t Know About a Special Needs Parent

10 Mar

Yesterday as I scrolled through Facebook I came across an article posted by numerous friends.

The title struck me, “6 Things You Don’t Know about a Special Needs Parent.”

I must read this I am a Special Needs Parent. I opened the article up immediately, wow!


This article was beautiful and spoke to me, and for me.  I am not the only one. I lost count at how many times the article posted  online.

I read the article and it hit me immediately. I tapped into exactly why this article was so important, why it was touching so many lives. It goes back to what the amazing storyteller and researcher Brene Brown writes in her books and shares in her videos.

We all need to feel connected, we all want a sense of belonging.

This article does all that. For the millions of moms and dads who raise special needs kids it is a reminder that we are not alone. Then the icing on the cake is the connection that you feel to the author, and even greater the millions of others who feel as you do.

1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I’ve gotten a good night’s sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs.

via Maria Lin: 6 Things You Don’t Know About a Special Needs Parent.

I read this brilliant article and immediately wanted to know who was this amazing woman, I had to find out. I immediately tracked her down on twitter and beyond. I found her private email and sent her a letter straight away. I want to be friends with this poetic writer of special needs truths, this everyday normal mom just like me.

Who is Maria Lin?

Maria Lin is the editor in chief of LearnVest, the preeminent website for women and their money, where she writes about money, time and human behaviors. She was the co-founder of cult lifestyle site UrbanDaddy, and has written for publications such asReal SimpleNew York magazine, Time Out New York, and has appeared in The Washington PostABC NewsFox Business NewsThe Wall Street Journal, and theBBC. She graduated from Swarthmore College and Berkeley Law School, and attended the Columbia Graduate School of Journalism. She lives in Manhattan with her son. www.marialin.com

She blew me away. She wrote back. She was kind and humble. I asked if I could share her blog and she said, “YES!” I am so thrilled.

If you are one of the few people who hasn’t read this article please take the time to do so now.

Parents of special needs children will rejoice that you are not alone.

Even if you don’t have a child with special needs, this article will open your eyes and your hearts to our everyday struggles.

Thank you so much Maria Lin. You have made so many families feel a sense of connection and belonging. I am so very grateful for that!

The Pain in My Heart

11 Jan

INTELLECTUAL DIS-ABILITY

There are no words to describe how my heart hurts when those words are used to describe my son.

I feel the sadness take over my soul. The well starts to fill, and if not contained I might very well overflow today.

I listen to all my friends talk and prepare for their child to enter kindergarten. It is all really simple stuff like, what teacher will they have, or will they ride the bus?

I wish it was that simple for us. No, it isn’t. We have to undergo another round of testing, followed IEP meeting after IEP meeting.

We have to fight to get the extra help our kids need. We have to be prepared to go to war for them.

My child is not disabled.

We are all human aren’t we? We aren’t so different inside.

So here are my 3 words for today.

Here are my 3 words to explain how I feel about my son. Here is how I feel it should read.

Today I was informed that the school psychologist is suggesting that Blaise not be completely mainstreamed. Why? She feels that he needs to be labeled as being, “Intellectually Disabled.” God, that just burns me up, it hurts.

Does my son have learning disabilities, of course. I know plenty of “typical” people who have learning disorders as well. I know they are trying to get him the best care possible at school, but my heart is heavy right now.

I want my son to get the best education possible. I want him to have as “normal” a life as possible. I want him to love school and love life. I know that the labels are just there to get “services” for school, but I hate them. I hate labels. I hate it when others label my son.

I hate that I even have to fight for him to get an education. I hate that I have to fight to get him an aid so that he has the best chance at learning. Oh let’s not forget the aid to help him stay away from food, you know because HIS LIFE DEPENDS ON IT!

Why, why is this even a question. Why with all the information you give people they think they know better. They think that your child has an eating disorder that they will grow out of. They think that your child should be able to learn to control themselves around food. They think that sheer will power is all your child with PWS needs. I wish they only knew. I wish they knew what it was like to be on a 24/7 vigil for your child. To wake up in the middle of the night and say, “oh crap I left the fridge unlocked.” To know what it is like to never get a full night sleep because you are always listening, always waiting for the moment your kid gets into the food when your asleep.

Blaise has it tough. He has 3 diagnosis. Prader-Willi Syndrome/PDD-NOS(autism spectrum disorder)/Sensory Processing Disorder. This is a lot for one little man to deal with. In saying all that do I think he can handle school, YES!!! ABSOLUTELY. Do I think he needs an aide full-time, YES! ABSOLUTELY.

I will keep an open mind as I go into this meeting with the school. I will think about what they are offering. I will also be ready to go to battle if I have to, whatever it takes.

This is just a normal day for us. There is always so much, so much to think about, so much that weighs on me. Today though I am in a valley. Feeling sad for my son. Feeling sad for his never-ending fight in life.

As the parent of a child with special needs we already fight so many battles at home. Why, why I ask, should we have to fight for our children to get an education? I will never understand. ;(

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