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Will You Forgive?

16 Feb

Saturday night and I am cozy in my bed with my two little kittens by my side. It is freezing outside. A beautiful sunny day has turned into a cloudy and bitterly cold evening. I turned up the heat and got under the blankets. I am all alone in my room as I turn on the Beyonce interview on OWN. She spends quite a bit of time talking about her daughter and being a mom and all that comes with being a parent.

There was a scene where Beyonce is filming herself at home in her bed. She looks at the camera and talks about feeling the baby move for the first time, the excitement that comes with those first kicks.

I immediately shutter. I try not to think about things like that regarding my own pregnancies. I have not forgiven myself yet.

I have not forgiven myself yet.

My sister wrote a beautiful essay about our sweet angel Ronan and his passing on February 15th. She wrote  when something like this happens, when a child dies, you realize why lie. Why lie about anything.So here I am. Being as real and raw as I can be. As I sat and watch this woman on television talk about how she felt her baby kick and how exciting that was I realize that I still feel like a failure. I feel like I let Blaise down. Why wasn’t I one of those women counting every kick, monitoring every moment in the womb. If I had would things have been different? Could I have changed things in his life? Would I have saved him and I from three years of suffering. All of the tests were fine when I was pregnant. I did feel his body move inside me, but there were no big baby kicks, like the ones everybody talks about. Some babies are quiet in the womb, the doctors told me .

Why didn’t I question that more? Why didn’t I push more? Why didn’t I do more. More Period.

It still weighs on me that he wasn’t diagnosed with Prader Willi Syndrome for three years. Of course it took me a year of testing to get that diagnosis. I did all I could once I knew there was work to be done, but there is always the feeling of not soon enough. It still weighs me down in my few moments alone. I still feel that it was up to me to protect him, and I didn’t, not soon enough.I try not to watch things regarding pregnancies. They bring up such raw and unnerving feelings for me. I push these things down and away. I want to believe that I have come to terms with the way things transpired in my life, in his life. Things happen exactly as they are supposed to, I want to believe this, but I  am left feeling that I got it wrong somewhere.

I don’t wan to lie anymore. I still feel that in some way I could have done more. It leaves me feeling incomplete. I want to say that I have been the best most powerful and dedicated mother. I worry sometimes that I wasn’t dedicated enough or strong enough in the beginning, in the first moments when it mattered the most. Does that set the stage for the future?

This is the most honest and human I can be.

Where is your honesty wanting to come out. Post below and share it now.

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Careful When Judging

13 Sep

I normally do not rant on my blog, that is all about to change.

This is what I have to say. I am going to say it as loud and clear as possible.

When you are out in the world, at a restaurant, grocery shopping, driving in traffic, or at the doctor and you see a child screaming or a mother losing her cool and grabbing her child by the arm and being stern; BE CAREFUL BEFORE YOU JUDGE THEM. Be careful placing judgement upon others for you know not what battles they are fighting. 

It has been months since my family went out to eat. We went out for a bite at a local, casual restaurant. Very loud, very kid friendly or so we thought. At the end of the meal the waitress, who was very sweet, became very overwhelmed with her tables. A young man came in and was singing while playing the acoustic guitar, and a very unfriendly table had just sat behind us. Our little one was really struggling so my husband decided to take him home, and our oldest son refused to leave and stayed with me. He wanted to see the guitar player, but I had to wait for the check. All hell broke loose. He started screaming, the table behind us was in my face, and the large table of young 20 somethings was looking at me as if they should call DFCS on me for grabbing my son and walking away. Now my son is screaming at the top of his lungs and I put my hand over his mouth, at this time he proceeded to bite my hand, just narrowly missing breaking the flesh. All the while the entire restaurant was staring. Let me point out that this hasn’t happened to me in quite some time, and typically it doesn’t bother me, this time it did.

 

As I left the restaurant I wanted to walk back in and confront the 2 tables that were staring at me like deer in headlights. I wanted to say something like this.

“It isn’t polite to stare, but since you are let me break it down for you. This is my 5-year-old son. He suffers from a rare genetic disorder called Prader Willi Syndrome and autism. Although he may look “normal” to you, I assure you he is fighting many battles. Before you judge my behavior regarding how I handled my son you should know this. I only slept for 3 hours last night. My son is sick and when that happens his behavior becomes more than any of you could understand. My husband and I are in the middle of the most difficult financial time of our lives, and I am dealing with my mystery medical issues that seem to elude my doctors. I am human, I am not a robot. I have one child with PWS and autism, and a second with hyper-activity and mood dysfunction disorder. I may have looked like a crazy woman to you, but you couldn’t imagine that I have been up handling this since 4am today. As the parent of a special needs child we are “supposed to stay calm and not lose our cool.” Unfortunately for me I am not perfect and I do lose my cool on occasion, tonight was one of them. I can say this with absolute certainty. Most people in the world could not walk a day in my shoes, most people could not even begin to comprehend what a typical day is for me, let alone these days where things are just not going well.

Tonight I write not just for myself. Tonight I write for my thousands of extended family members. My family of parents/grandparents and caregivers of those with special needs. Tonight I write for them. Tonight I come to you and challenge you to this:

When you see a situation like me taking place, don’t stare. I challenge you instead to offer a hand, offer your heart and see if that parent or caregiver could use some help. I will tell you that a smile goes a really long way. A smile goes a really long way in the heart of a special needs parent in the midst of a crisis with their loved one.

“You must be the change you want to see in the world”-Ghandi

Help me spread the word and please share this blog with all of your friends.

Namaste and thank you for reading.

Joys of Motherhood

20 Aug

 

When my oldest son was born there were complications. I however always looking on the bright side believed that he would outgrow them. As time went on it was clear something was not right. When the verdict came in and he was finally diagnosed I was devastated. I don’t say this lightly, let me be totally clear on this.

On September 14th, 2009 at 9am, my world changed forever. I was shattered, heartbroken, and alone. Prader Willi Syndrome, what the heck is that? In reality it wasn’t quite like that because I knew what Prader Willi Syndrome was and I wanted to die knowing my son has this. I was standing in my driveway in my pink robe and I collapsed, I nearly knocked myself out on the pavement. It took every last bit of energy to pick myself up and walk in the door to inform my husband of the news. We sat and cried and cried. These weren’t your old run of the mill tears, these tears came from the deepest of deep spaces in our hearts, we felt as if we were sucked into the abyss.

When I finally collected myself I was filled with questions.

What will my son look like?

Will he be morbidly obese?

Will he fall in love?

Will he have friends?

Will he be bullied in school?

Will he ever talk?

Will he ever play sports or swim in a pool?

Will he live on his own and go to college?

What will his life look like?

This is just some of the things that were teeming through my brain like a swarm of African Honey Bees that have just had their hive destroyed.

I am feeling the tears well up in my eyes as I sit and read back the words I am writing. The emotions of that day still live inside me, they always resurface when I go back to that day in my mind.

It is almost 3 years since that day and life is quite different from what I imagined.  So different from what I imagined.

I need to add that not only does Blaise have Prader Willi Syndrome but he also is on the Autism Spectrum and has Sensory Integration Disorder. My life is never, ever dull.

I am not here to say that my life is easy and that my son’s diagnoses don’t impact our lives, they do, but our lives are good.

I wanted to share a few things with you that have happened to my dear son in the past few weeks. I share them in hopes that all the families who have children with special needs will read this and smile again. I share them as a glimpse of hope of what could be the future for all special children in the world. I share them as a reminder to never give up and let others dictate who our children are. I share them because I see first hand that our world is changing, and it is possible for our kids to live a life full of love, laughter, and happiness.

My sweet boy started kindergarten on August the 6th.

I couldn’t sleep the night before I was terrified. He was going to be in school all day long. I wondered how would he handle this, would he ask for food all day long, would he steal food from the other children? I actually had a nightmare that the parents of the children in his “typical” class wanted him taken out. I dreamed that they were mad that their children could not have treats because my son was in their class. Oy, I can’t begin to tell you how sick I was over all the emotions that were plaguing me.

The first day of school came, not a problem in sight. The second day of school came, even better than the first. This has been the case every school day for the last two weeks. Of course he has had a few major glitches, but so do all kids, ‘typical’ or not. Every time I walk into the school people ask me, “Are you Blaise’s mom? We love him so much.” You have no idea how much that means to me. My heart is over flowing with pride for my son. I had originally wanted Blaise to be in a ‘typical’ class all day long with an aide. It didn’t work out that way and truth be told I am absolutely fine with that. He does most of the day in a self-contained class and 2 hours in a general education class. He is doing great and I will not let my ego get in the way of that(note the hidden lesson here).

Last Monday I picked him up from school for his therapy session. We were walking down the hall and encountered the kids from his general education kindergarten class. They were all calling his name and waving at him in the hall. Then a little boy grabbed him and hugged him. I asked if they were friends and the little boy said, “Blaise is my buddy.” I can’t tell you how I almost fainted because I realized that not only was my son not getting picked on, he is accepted for who he was!!!!!!! Two days later the same thing happened as we left for therapy. This time all the kids were so excited to see him, and a new little boy was hugging him and saying that he was Blaise’s buddy.

How could I have ever imagined such love. I could only go on what I know and have seen in my life. When I was growing up kids were cruel to children with special needs. I am seeing such a difference in our young kids today, or at least the children who go to my son’s school. Just think these beautiful precious children can see my beautiful precious child for who he is inside, and not what he looks like, or what diagnosis he possesses.

As he gets older things might change, and he will probably encounter more unkind people in the world. I see something very special in my child, and I will remind him of that daily. If he encounters people who aren’t as kind to him he will have the strength to shake it off. My hopes are that he knows how loved he is and those folks just don’t matter.

I know this is a much longer post than usual, but I haven’t written in over a week.

I will leave you on this note. Here are some pictures of my beautiful son surfing this past weekend. Blaise and his dad went to Florida to participate in Surfers for Autism in Flagler beach, Florida. It was amazing and there aren’t even words to describe the pride I feel for my child today.

I am in a constant state of wonder at my son. He is determined to prove that he can do it all. It might take him longer, but he will eventually get there. I will be by his side the entire time.

I love you so much Blaise.

 

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.

Noises

7 Apr

I have always understood my sisters hearing loss. I have always had compassion for her struggles, and as of late they apparently are my struggles too.

I have always had mild hearing loss. There are certain tones and pitches that I just can’t hear, no big deal right. I started to notice years ago that I also was beginning to have Tinnitus. It would come and go and I never paid it much mind. I always knew that after a concert there would be a few days where I had tunnel hearing and so on, but that always passed. Over the last few years it has gotten worse and worse. I am not quite sure what is happening but I do wonder if I am to follow in the footsteps of my sister and my aunt.

For the last week I have struggled with the worst case of Tinnitus that I have ever had. Not only does the ringing make me want to scream, but as of today I am almost completely deaf.

I really can’t hear.

Tonight I talked to my sister on the phone and I really felt like what it is to be in her shoes. I couldn’t understand anything she was telling me, and that was in my good ear. All the words were jumbled together. I asked her to repeat herself a dozen times and still I couldn’t make out the words. I can’t hear my phone ring, and I can’t hear what my children are saying to me.

My life is all about my ears. I am always listening to see what my children are doing, especially sweet Blaise. I can always hear him walking to the kitchen, even though everything is locked he still tries, but this week I can’t even hear his footsteps. That is rather scary.

I couldn’t hear myself breathing today. If not for the movement in my belly I would have thought that I had stopped breathing all together. What a scary place it is to live with one of your senses gone. I have prayed this week that this is only temporary, that this too shall pass. It is a frightening thought to have the loss of my hearing, or vision, or taste, smell or touch.

I always think of myself as somebody with enormous amounts of empathy and compassion. That being said until you experience something for yourself you never truly understand. I get it now. I really do understand what is like for those who have lost one of their senses.

Today while we were out with the children I called Blaise’s name. He never answered me. I started to get really frustrated and I asked myself, “Does he have hearing loss, or is he just ignoring me?” Years ago they said he had mild loss of a certain tone in one ear. I opted not to do the full test because it required sedation. Now I am fearful, does he have hearing loss too? Will Maddock having hearing loss too?

I am feeling overwhelmed by the sound in my head. I want to go to sleep and stay there all day, for it is the only time I can’t hear the ringing. When I am awake I am finding it hard to concentrate or focus. I am praying that this all ends soon. I am trying to figure out what my body is going through now. There is clearly some really big stuff happening emotionally and physically.

MY 3 WORDS FOR TODAY 

NO MORE RINGING

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