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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.

juice fast

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.

elephant-on-the-chest

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.

monster slayer

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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.

leap

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.

hands2

 

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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To Be Special

10 Feb

“My daddy has a tractor, my daddy has a key for that tractor.”

This is what my little guy squeals out as we walked through the Tractor Supply store yesterday. I would like to state for the record that I never thought I would be shopping at a tractor supply store. Yet here I am writing about it as if I were discussing shopping at CVS.

“My daddy wears boots. My daddy hunts pigs and deer.”

It reminded me of a memory I had of myself when I was in the 5th grade. After living five amazing years in California it was time to move back to New Jersey. It was an incredibly tough time for me. I loved California. I loved my life there. I loathed Cherry Hill, New Jersey. We lived with some close family friends while my mom searched for a house to buy and call home. Our family friends were actually my godparents and I called them aunt and uncle. They had two sons I had always revered as my cousins. Both were boys and were athletic, popular and well liked in our town.

We finally found a house and began the move in process. Two houses down there was a boy who was 2 grades ahead of me. He was in the same grade as one of my “cousins.” I had an overwhelming feeling of wanting to belong. It was such a strong need and I didn’t feel I possessed anything special inside me. I remember meeting the boy who lived two doors down and the first thing I said to him was, “My cousin is _____ .” I said that to quite a few people. I thought well that would get me in. That would give me that sense of belonging, that sense of worth.

Years later the boy next door and I were best friends, as close as friends could be. One night while we sat on the  swing on my front porch, as we always did, he reminded me of the first thing I ever said to him. He laughed when he recalled the story for me as we swung and smoked cigarettes. I felt so silly, so many years had passed and as an older woman of now 14 years old, I laughed at my 10-year-old silly self.

I WANT TO BELONG. I WANT TO BE PART OF SOMETHING. I WANT TO BE SPECIAL.

I see this now in my little angel. I see that same expression in my little ones eyes. He so desperately wants to be special, to be wanted, to be needed, to be loved.

If you follow my writing than you know my youngest has some emotional issues. I worry about him and what his future looks like if his struggles continue to escalate. Recently a new issue has come up for him. If I look at him a certain way or confront him on misbehaving than his response to me is, “You hate me, you don’t love me anymore.”  My heart breaks into a million little pieces when he says that.

I felt that same tinge as I listen to him tell people about his special daddy. I am happy that he loves and admires his father, it is the intense desire and need to be special that makes my heart ache. It is that desperate need to feel like he is part of something, special and that he is wanted. I want him to feel that way all on his own. I want him to know he is special without validation from an outside source.

We all have a need to feel special and be wanted and loved. Some of us search for it harder than others, some of us are more content to find that specialness within. I was much more quiet this past weekend at the yoga retreat at Kripalu than I usually am. I still walked away with 30 plus new friends, and 30 plus people who thought I was great. I started to think long and hard about how can you share your specialness without throwing it out there in someone’s face. What are the ways that I can share my light with others without stealing the spotlight?

I want to share this idea with my children. We spoke a ton about this at Kripalu. We talked about letting out light shine for others. I want to teach my children to share their specialness with the world by shining their lights for others.

I don’t think we are ever to young to take a look inside.

I am curious to see the different aspects of myself that shall arise as I focus on being a light sender in my life?

If you shifted from wanting to be in the spotlight to being the light sender, what would shift in your life?

special

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Wear Batman Pajamas!

18 Oct

It is a typical Santa Monica morning. Overcast and breezy and if I listen closely I can hear the rumbling of the nearby waves.

There is nothing that can take the place of being home.

For me, home is a confusing term.

I am not quite sure if home is Philadelphia, the place I was born, if home is New Jersey, where I also lived, and, the place my father is laid to rest. Maybe home is California, the place where I lived most of my life, and the place where my mother, stepdad, and my sister still live?

Mostly it doesn’t matter.

When I am in California, Philadelphia, or New Jersey I still have that same feeling. Like a gigantic sigh that comes from deep down inside of me. It is my soul is coming back home. My true Self is back in its favorite sweatshirt, the one with all the holes that you have had since the beginning of time but can’t bare to part with.

I love the sound of the ocean, the quiet deafening after the waves crash on the beach. I love that sound. I love the memories that come crashing into my mind every time I hear another break hit the sand. I can close my eyes and remember that house on Lincoln Blvd. I can remember that monstrous rod iron bed that I had as a little pipsqueak of 8 or 9 years old. A bed that required a step stool to get into. I remember leaving the window open in my bedroom to hear the ocean, the same way my sister does in her living room, right where I slept last night. It is as if I have time traveled. As a little girl I used to sit as I am now, listening to that quiet, an irony that is not lost on me.

I find it very difficult to be in silence.

Here I am, on this couch transported back in time, a time when I had my beloved Monet, our West highland Terrier. A time when my sister and I had hamsters, skateboards, and bicycles with banana seats. (You remember those awful seats, don’t you?)

Yesterday I took my youngest on a school field trip to a local farm. They have what they call a jumping pillow. Maddock was all over that, as you can imagine.  I watched as 20 of these jubilant 3 years old ran for that nylon filled air sack and jumped their little hearts out. They were so happy to bounce up and feel that squish under their feet as they came down. I watched those children jumping intently.

I thought to myself: What can I learn from this? What can I learn from being airborne?

Here is what I came up with. As kids, all you know is fun. Kids don’t know financial stress, they aren’t worried how the mortgage will get paid. They just want to know that Mommy and Daddy want to play with them and tuck them in at night. Kids don’t know love lost, they love everybody. Kids don’t know self-consciousness, they don’t care what others think of them. If they love those batman pajamas then they will wear them to school no matter what anybody thinks.

Kids can sit and listen to the ocean and imagine faraway lands, as I did when I was a child, or jump on a trampoline and imagine flying, as my son does. They aren’t worried about the stress of the day. There is no room for that when you are living that moment to the fullest.

There is a feeling you get when you are jumping. A sensation that takes over when you are airborne. You are weightless, fearless, and full of joy. You aren’t worried about hitting the bottom. You only live for the air beneath you now.

This is where I chose to live my life from today and all the days to follow.

I am airborne. I am going home.

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.

The Nitty Gritty

3 Sep

Day 4 of my adrenal recovery is about to come to a close, and I am already feeling better. I know that it has only been a few days, but my body is responding well to the small shifts I have made.

I have no withdrawal from gluten, I have been off that for months now. I have no withdrawal from dairy, don’t know how that happened since I could live off of cheese for every meal of my day. I have had a bit of withdrawal from caffeine. I had given up coffee for quite some time, but still drank tea. I recently started drinking coffee again and hadn’t realized just how much it was kick starting me in the morning. I really struggled this morning to get myself going.

I believe that some of my cleansing has had an effect on my gall stones. I had a major attack today and my breakfast didn’t last too long in my stomach. A gallstone attack can leave you vomiting and doubled over in pain. I can get rid of them naturally and have opted not to have them removed surgically.

I am eating a ton of protein, so many vegetables, a good amount of fruit, but not too much. I am eating lots of beautiful complex carbohydrates and drinking water. I also am partaking in any and every opportunity to sleep. Today I had the afternoon off, it was just my oldest son and I. We had been up since very early this morning and had lots of running around that we accomplished. The afternoon was all ours, so we napped for 2 HOURS. It was lovely and I felt so much better afterwards. I am in bed every night before 11am,and I wake every day at the same time. I eat breakfast within an hour of waking, and it always includes a protein, good fats, and small amount of carbs and NO COFFEE OR TEA AT ALL.

It may sound fairly restrictive, but it really isn’t. We eat delicious meals everyday and never feel that we are missing out.

Here is my new favorite dessert.

Mango Yogurt Treat

1/4 cup good quality low fat plain greek yogurt

1 mango cut up into bite size pieces

cinnamon

honey

add the mango to the yogurt, drizzle with a small amount of honey and then sprinkle with cinnamon. Yummy and nutritious.

I have been struggling with one aspect of the ‘whole food, clean eating’ lifestyle I have now. I do not live near a Whole Foods or Trader Joes. The Farmers Market is an hour away with traffic. The local grocery stores do carry some organic fruits and vegetables, but they are very expensive. A year ago this wouldn’t even be a conversation. I definitely bought any thing I needed for my family at the grocery store, but times have changed. I can no longer afford to pay $6 for a teeny tiny container of blueberries, it’s just not a reality for our family in these times. We eat a ton of fruits and vegetables. I wash them as well as I can, but buying all organic is not in our means now. It does really wear on me, I want to provide all organics for my kids. I get really frustrated that in our country we make the healthy food out of reach for those who are struggling financially.

My children eat 3 square meals a day made from home. We don’t own a microwave and when we want to eat I prepare each meal from scratch. I have had to make the sacrifice that if I want my kids to continue to eat all the fruits and vegetables that they currently do then we just have to do the non organics now. I so strongly believe in all the micro nutrients that my kids get every day from eating a diet high in fresh fruits and veggies.

I know at some point in time I can change this, but I am grateful for the ability to feed my family.

I read this MindBodyGreen gratitude poster this morning. It spoke volumes to me and how I was feeling about being a good parent and providing a healthy life for my children. I realized quickly how lucky I am to provide for them at all.

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