Tag Archives: Prader-Willi Syndrome

The Broken Glasses

22 Oct

I am always navigating through a crazy maze of trials in my life. Always trying to figure out if the “what is” now is “what it’s supposed to be.”  I constantly examine this concept with myself and especially my children.

Last Tuesday was an especially difficult day. I struggled through the day and my kids weren’t even home from school yet. Once my little ones arrived home things went from hard to climbing Mt. Everest. Blaise my sweet boy who has Prader Willi Syndrome and Autism was in a state of destruction. As dinner approached I asked my sweet angel where his glasses where. Very nonchalantly he responded that they are broken. The two of us found our way into his bedroom where he showed me both pairs of his glasses, broken, twisted and shattered in little pieces. I found myself cracking into those little pieces too. I lost my patience and started yelling, I hate that part of me that comes out when my soul cracks.

I screamed at him, “Why, Why, Why?”

He never answered, he didn’t understand what I was asking him. This led to the real issue. The glasses aren’t the issue, they are at the surface, they are the like the skin, they are just the part you see. The real issue was exploding inside.

Why can’t my son understand me? Why can’t my son be normal? Why doesn’t my sons brain work?

There it is the guts of it all. It’s the insides coming out, the organs and the blood.

Seven years of dealing with special circumstances doesn’t make it easier. Seven years doesn’t make those bitter moments sting less. Seven years doesn’t close the wounds. I have spent the last few years stuffing down my feelings and pretending that all is cohesive, tough but working. In reality it was all still there under the surface, inside a pressure cooker about to explode.

I found myself crying after my kids went to sleep that night. I cried for myself, I cried for the stress that his syndrome can create in me, but mostly I cried for him. I cried for what I thought was missing. I was quiet after I let it all out, I was quiet all through the days that followed. Something had opened up and I had to finally face it and deal.

I had to accept what is.

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Blaise accepts his life. It’s time I remember how to live more like him. Blaise doesn’t see failures or “lack of’s” in his life. He accepts things and does so with a smile.

I am working on accepting “the what is” now. I added into my ah ha moment that I can accept what is now and trust that things may look different in the future. I have to let go of what I think it is “supposed” to look like in my life, and my kids lives.

As the parent of a special needs child I tend to be on a roller coaster of emotions daily. Going through the struggles with my child. Walking the path of his life right by his side. It can be a daunting task. One thing I don’t need to add to my plate is judgement to what I think the picture of my child’s life should be.

I happily bought the little one a new pair of glasses. Hopefully this experience will have us both see a little clearer.

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What to Learn from a 6 Year Old Who Has Autism « Positively Positive

28 Mar

Choosing something different. Choosing to shift, be different, move on, move forward, or live something new.

You don’t need to ask permission or wait for the okay. You just need to say the words. I’m all done now. I choose something different.

via What to Learn from a 6 Year Old Who Has Autism « Positively Positive.

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It Finds You

4 Mar

Blaise woke up promptly at 7am, “I am hungry mom, I need an apple.” Today is our day to sleep in, I was hoping for just 20 more minutes, well nope, not today. I got up and BAM. Holy, you know what, migraine city. I don’t typically get headaches, let alone migraines, up until recently. I think to myself, “I am fine. I have medicine for this, I will rest before work, this shall pass.” Six hours later, 2 pills later, a nap later, and I still think my brains are ready to come out of every possible crevice in my head. Oh did I mention today I decided to start my juice cleanse/fast/feast.

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Probably not smart because I am going out-of-town on Friday and well, let’s just say it’s about that time of the month. I went forth with reckless abandon, thinking I made it four days last time, I can definitely do four days this time. Ha! At just around 1:30 I was ready to eat my left arm for lunch. I started thinking. Listen to your body, what is it telling you, it’s telling you to eat. I had some nuts. Headache still here.

Rewind:

7am in my house:

Rachel: “Blaise you need to get on the scale it’s been a while.”

Blaise: “Okay Mommy”

Rachel: “Oh my god you gained 4 lbs. What the heck. I did everything the doctor said. How could this be?

hate the scale

My husband senses a major meltdown and hides under the covers. My heart starts beating. Oh my god. I hate PWS. I hate scales. I hate food. I hadn’t planned on getting on myself, having gorged on some serious Italian last night, and the night before, but of course I did anyway. I stepped on. OH MY GOD I am up another 10 lbs. Panic sets in, sweat beads are forming on my forehead, my voice deepens, every living thing in my path should run for cover. I deal with panic, I ask for help from good friends and move on with my day. Experience and release, I hope.

WHAT YOU SEEK IN LIFE WILL FIND YOU

I am sleeping in my bed when my phone goes off. It is 1:45 headache is still raging, it’s Blaise’s teacher. Shit, do I answer? Is it important? Oh god, I want to sleep. I answer. Conversation goes as follows. “Blaise had an accident, a big one, he wet his pants big time. Oh and there are no clothes here that fit him, they are all too small, oh and by the way he needs bigger pants his butt keeps showing.” Well, after that mouth full I am fully awake. I rub my eyes, put my shoes on and head out the door. I start the car, oh I need to bring clothes, my child is naked in his class. I get to school and he is wrapped in a blanket, naked from the waist down. Conversation from phone continues: “Blaise needs BIGGER pants, his butt crack shows, he is too big for his clothes.” Yes, I get it.

Universe said to me: You wanted to deal with this today. You asked for it. You put it out there. I didn’t say how I would give it to you, but I did. So the universe presented me with this horrible and ugly situation with my son. For the non PWS  parent let me explain why such situation is ugly and horrible. Our kids gaining weight is the ultimate enemy, (the bigger PWS kids that is). After leaving the doctor in January and her saying no more weight gain, another four pounds feels like I have an elephant sitting on my chest.

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I pulled up my boot straps and drove his little hiney down to the store and got new pants. Situation handled, NOT.

Said voice in my head(in one long breath): You are failing as a PWS mom, this is too much to bare. I have to monitor everything he eats, make sure he gets exercise and therapy, I have to practice reading, writing, and math at home, dole out countless medications everyday, make sure his GI tract is functioning, make sure he is breathing at night, keep him safe from food, help him dress, brush his teeth, use the bathroom properly, give his GH shot every night, drive to Atlanta and Florida for countless doctor appointments, and there is too much more to list. OH AND SHIT HE GAINED 4 LBS, like I need one more thing.

This is the voice inside my head. Sometimes I wonder how I get the courage to wake up in the morning and face another day of battles and victories, or joy and hurt. All I know to do is keep moving forward, connecting with my support system, and write.

My mom was here for 2 months when I got sick, she is an angel from heaven. Just knowing I had somebody to turn to at any point in the day was heavenly. I still have that, via phone, but I have it. PWS can make you feel so alone. I don’t feel alone today, but in the spirit of ABTTT(always be telling the truth) I am admitting that today I am overwhelmed and exhausted. If it was weight issues I wanted this morning I sure got them.

Sometimes I can do all the right things and the outcome still doesn’t fit my plan. This is that such case. I did everything the doctors told me and it still backfired. Time for plan B. I will always turn to plan b, and then c. I will do whatever it takes to get it right for Blaise. I want him to live a happy life, I want him to be healthy and fit, and move with ease. I will tackle this latest monster. I am tired and don’t know if I have the energy for monster slaying, but there is a job to do and so I go forth, with reckless abandon, because I love my son.

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Little Lion Man

25 Feb

I never knew how to be a guarded person. I always felt completely at ease sharing with others. That is part of the “story” of who I am. Sharing personal issues, triumphs, victories, and defeats all comes with the territory.

I am the proud mother of 2 young boys. I love them both dearly. They are little tiny heartbeats of mine walking around this earth. They are each a  little tiny phenom. I am in love. I have loved them both since their first breath, and our first touch.

Saturday evening I decided to keep my word and leave the house. An old friend, a woman I have not seen in 20 years, had come to Atlanta for a visit. I was so tired, not a shock, so I really debated going or not. I heard a little voice in my head tell me, “Your word is all you have. Have integrity and go.” I went and took Blaise with me. We went on a date as he shouted so eloquently across the Barnes and Noble parking lot. Prior to the bookstore Blaise and I enjoyed a wonderful dinner with our dear friend and her husband. Two hours we sat there, he was a perfect gentleman. He looks so “NORMAL” it really is the bain of my existence. It is confusing to the world when your child looks “normal” on the outside, but is fighting a full-fledged war inside. After almost 4 years of dealing with Prader Willi Syndrome and Autism I think I got this. I am doing well. I go out in public, I travel with my kids, I go on living my life. That is not where it ends. Remember I have 2 children. My second child, “my typical” child is anything but “typical.” I have written of this before, and it is worth re visiting.

I recently saw an article posted on Facebook regarding medicating small children. The article was long and some of their argument alluded to the fact that; these children have nothing wrong with them, the drug companies just want to make money. Now, I am no fool. I know we live in a capitalistic society, but I also know there is a real possibility that my Little Lion Man has mental health issues. It’s not his fault, but it’s there. It lives there.

There is nothing wrong with him. You are a first time mom. Your first child is disabled, you weren’t able to parent him. You don’t have a clue with your second. This is normal behavior.”

I ducked when that sentence came flying out at me. I was in front of the big spinning wheel as the magician is throwing knives at me.

YOU ARE A FIRST TIME MOTHER. YOUR FIRST CHILD DOESN’T COUNT.

The knife went in deeper. I could feel the warm blood starting to pour out of my chest. It stung. I put a bandage on it, covered it up gtfvwith two layers of clothes and moved on. The cut was just superficial, painful, but not deep enough to kill me.

Here is the truth, my second heartbeat, my Little Lion Man, has mental health issues. They are real. A mother knows. A mother can feel when her heartbeat is hurting. A mother can feel when her heartbeat fades in and out.

My little man turns to me and says, “You hate me. You think I am stupid. I know you think I am stupid.” Those words have never crossed my lips, never. Where does it come from? Where does this glitch start? Where can I go in with my tools and repair the loose wires.

As I drive my normal route home I pass a sign on a PreSchool billboard. It reads:

“How we talk to our children becomes their inner voice”

I always tell him I love him. You are smart little man. You are loved little man. You are the best thing in my life little man.

Those should be his inner voice, but they aren’t. My son is diagnosed as having a mood disorder and ADHD. Yes, he is 3 years old, the doctors didn’t even think twice. They knew he could hurt himself or us.

Sadly I had to take him off the medication, again. Insurance won’t cover mental health. Nobody wants to talk about mental health in small children. It is taboo, We need to talk about this, it is a real issue. I am not here to debate the issue of medicating young children. I am here to say lets call it what it is. Let’s talk about it. Let’s offer help to the families who feel helpless. Mental health effects people of all ages, even Little Lion Men.

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In life things may seem perfect and tidy on the outside. They may pass all the tests, they may make all the marks. My hope is that we have the courage to take our looking glass and look a wee bit closer. Take a loving look inside. There are little lion men all over who don’t show that their little heartbeat is hurting. My little lion man is brave and courageous.

How many little lion men do you think you pass everyday? Do you see them in the store, the movies, at school? Where are they in your life?

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Connections, Connecting, Connector

23 Feb

It feels like a Sunday morning, it’s not, it’s Saturday. Typical Saturdays at our house are so hectic, I should be out the door for karate now, not sitting and watching tv and drinking coffee. I was meant to be here, on my big plush green microfiber sofa. I was meant to sit and sip my coffee out of my new coffee mug, the one my mom bought me that reads, “Life is Good.”

I love Oprah. I really love Oprah. I cried when her show ended. I was elated to find her having her own network, The OWN network. I love it to the umpteenth degree. I have a new favorite show called, “The Trouble Next Door.” Here is the premise. A family in the neighborhood is in some type of crisis, desperate and running low on options. They call a neighborhood meeting and the family, who most don’t know, ask all of the neighborhood for help. Tons of neighbors show up to the meeting to meet this family in peril, they show up and take it on all the way.

This episode is serendipitous. This single mother has 5 children, one who is severely autistic, and one with major behavioral issues. Oh my heart beats for her. I feel like our hearts are connected. I don’t know her, she most certainly doesn’t know me, but I wish we could. Hey, this family is from just here in the Atlanta area, it could happen.

This mother is drained, she is sad, she is desperate, all emotions I have felt often. As the episode moves forward you see these connections building. They start out small, maybe like a flimsy wood suspension bridge, but then they build. Now they are the Golden Gate bridge. Miracles happen everyday, you have to ask for them. My heart is pounding as I see the courage it took for this mother to reach out to these stranger and just ask for HELP.

What changes will take place in her life? Has the course of her life been altered forever because she chose to connect, get connected, be a connector. It is powerful.

When Blaise was first diagnosed with Prader Willi Syndrome I was defeated. I was lost, angry, and hopeless. That never stopped me before in my life, why would I go there now. I got on the phone and started making connections. In 24 hours I was on the phone with two PWS families.That was nothing compared to meeting the Georgia chapter of PWS USA. I was so nervous that day. My stomach was way down by my feet. I felt the earth giving in underneath me with each step. I just kept telling myself, “put one foot in front of the other, keep walking, keep breathing.” I was completely unprepared for what was to follow. It was family, it was connection instantly, it was a group of people who genuinely looked in my eyes and let me know, “we are connected, you are one of us now, we have your back.”

I look back on that day over 3 years ago. Life changing and eye-opening. It was a day full of promise for me, a day filled with opportunity and hope that my boy would be part of something in his life.

My writing has brought me connections that would other wise never have appeared. I feel a sense of utter calm when I am in a room full of connected souls. That is what we all want. We want to feel connected. We want connections. We want to know:

WE ARE NOT ALONE, YOU AREN’T!

making-connections

Connections provide that safety net, that harness that holds you up in a ropes course. When I was 20 years old I did such a ropes course. I had to climb to the top of a tree, I don’t know it was like 80 feet high, probably not but it was really high. I had to then climb on a disc placed at the top of such tree, and jump. Oh, I had to jump and catch a trapeze. When I got to the top of the tree I could make it on the disc. My stomach was churning. I am getting nervous just thinking of that day, that moment in time. I remember yelling down, “I am going to throw up on all of you.” A voice came from down below, it was a friend I had made named Eliza. I could barely make out her words at first, she kept repeating them. “We are here for you, you can do this, we are all doing this together, keep going.” I don’t know but I just gave one big push and up I went. I said, “shit Rachel, I can’t believe this.” and then I jumped. I screamed as I leapt through the air, but I knew the 20 folks on the ground were there for me.

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In your dark night of the soul, or your brightest day of light sending, find your connections. Be a connector. I have this feeling crawling up inside of me. It is creeping up through my restless legs at night, it is finding a home in my belly, it is finding its way up to my heart. This is what i want to do. I want to make connections, keep connecting, and be a CONNECTOR.

Have you connected your soul to another yet? I say go out and make connections. Facebook connections are great, but make those real face to face connections. Get out there. Make plans with your friends even when your tired. Call up your friends on the phone, instead of texting. Make genuine and authentic connections, and then sit back and watch what unfolds for you.

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You could reach down in your soul and find more than enough things to connect with. I look at my own life and realize I am full of connections waiting to happen.

I am connected to Special Needs Families

I am connected to recovering addicts

I am connected to the Jewish community

I am connected to people from Philadelphia

I am connected to people who love the Bay area in California

I am connected to people who lost their parents too young

I am connected to those who love yoga.

I could go on forever. Sometimes I pick and choose which connection I want that day. Sometimes it is more than one. All the time I know that they are there and waiting to bust out.

Are you a connector or are you searching for connections? Share below

 

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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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Poor Little Chickens

12 Oct

If you read my blog then you are aware that I am the proud owner of 14 chickens, 3 goats and 2 dogs. It is a teeny little farm we have going on here. I being the city girl that I am have adjusted to what I would consider acceptable standards.

At the beginning of the summer my husband went away for a few days. I begrudgingly said I would take care of all the animals. I will not lie I am not a huge fan of the boy goats(they are kinda mean to me, like spear me in the privates kinda mean) and the chicken coop is a poopy haven. I had no choice it was up to me. Well I thought I was doing just fine until well…….Maddock and I left the coop open and a fox got in and ate and or scared away about 6 chickens. Needless to say my husband was a wee bit mad at me. After some steam we were fine and our on way to eventually building up our flock again.

Cut to this week. We are happily collecting 8 or more eggs a day and all my girls are so happy. My hubby is away and I am mother earth again tending to my animals. As my husband calls me everyday I recall to him just how well I am doing with the animals, just how easy it is, and how fabulous a farmer I am. Thursday morning I made my normal rounds; chickens and goats fed and watered, check. Oops! As I would later find out, no check. As I went to collect my eggs there were NONE, to my horror. I began to look around for signs of distress, what could cause my girls to go so haywire and not give me any eggs. Is it too cold? Is there not enough light? Oh why me, why not when my husband is here? Then I look oh wait a minute there is NO WATER, ANYWHERE!! Oops. I filled up all the water on Tuesday in the late afternoon and NEVER BROUGHT IT BACK IN TO THEM. I dehyrated the girls. Oh are they mad.

Thursday afternoon hubby calls and I say, “wee little problem with the chickens.” He says, “oh no how many did you kill this time?” I said, “no they are alive but haven’t had water in a few days.” He then explained to me that they are mad at me and won’t give me eggs. So I am waiting and waiting. Finally this afternoon I got 2 eggs. I have redeemed myself with at least 2 of my girls.

Moral of the story is: Don’t leave your wife from Philadelphia alone with farm animals. It’s never a good idea.

Better luck next time.

The other part of my sharing this story is this: I really didn’t want to do it, NOT AT ALL. But I am.

I have been getting really bothered by how worried my hubby is that I am going out of town. He is really worried about how to feed our son with Prader Willi Syndrome. He is of course going to make it happen but it is causing him anxiety, the same anxiety the animals cause me. Taking care of our ‘farm’ is no biggie for him, just as taking care of our family is no biggie for me.

I realized that sometimes it can be a bit unfair to take somebody else’s worries and make them un-important because they aren’t worries for you. We all  can practice being careful when telling somebody that their feelings don’t matter. Un arguable truths I have written about it before.

Where in your life do you take somebody’s un-arguable truth and make it not true? We all do it.

Here is a great explanation of an un-arguable truth is found here from the Hendricks Institute.

I think about this on the mat and off the mat.

Where can I acknowledge other’s truths and let them know that they are heard? How can I shift my thinking so that I can be more supportive in other’s journey of communicating their feelings?

Just some thoughts to ponder on your Friday afternoon.

Happy Farming and Namaste-

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