Advertisements
Archive | Family RSS feed for this section
Quote

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

Advertisements
Quote

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.

little_lion_man_by_bigdaddyez-d32ec9t

 

 

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?

Quote

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

 

Quote

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

Quote

Home Depot Men

2 Nov

There is a Home Depot on Ponce De Leon Avenue in Atlanta. It is in the same shopping center as Whole Foods, you can imagine how busy this place is. On the corner as you turn in there is always a host of men waiting there, looking to get hired as ‘Day Laborers’. I have never  been one to look down on the men waiting there for work but,  I have been guilty of not looking at them.

I am not feeling well today, and with two sick kids in tow it has just been slow-moving. After an hour of sitting at the doctor’s office and x-rays we headed off to Whole Foods for a slice of pizza and some steamed veggies. When we were through eating I exited the parking lot at the corner where the Home Depot men stand. I got to the intersection right as the light turned red. It is a long light and for some reason I was compelled to look over at the men. There was probably about ten or twelve men there but, one stood out from the rest. He was dressed nicely. He was wearing a really nice pair of shoes, clean jeans, a nice button down long-sleeved shirt, and a clean white baseball hat. I couldn’t help but watch him. I started to create a story about him.

He didn’t look homeless. He didn’t look like a drug addict. He looked like a regular guy, a ‘normal’ guy, whatever ‘normal’ is. I started thinking what if he has lost his job and can’t find work in his field? What if he is a father and has kids to feed? What amazing character he has to go out and do whatever it takes to take care of your family. What a great example for his kids. I was deep in this fantasy about a complete stranger.

Of course my story doesn’t mean anything, and probably most of it isn’t even true. For all I know he could be a wife-beating drug addict who was arrested 49 times since last year. We shall never know, but I like my story better.

I started immediately to think deeper. What if my story is true? How many times have you passed a homeless person on the street and not given them a second look? That could be any of us, really it could. If you follow my blog then you know that the economy has hit my family really hard. We have had to give up everything and start over. We are still okay and we have great family that has stood by us. What if you don’t have any family? What do you do then?

I really think we need to start thinking like a community. I think we need to start looking at people and seeing them for who they are, not where they live or what they have. I think we should reach out and connect with people. I am not suggesting that you run out and try to save every homeless person you meet but, a smile is a start. A kind gesture goes a long way.

I didn’t grow up having a lot. We grew up in a modest home, had food in our stomachs, and clothes on our backs. I always knew that I would be taken care of, but I also knew as a young child that everything could be taken away in an instant. I think that has been the saving grace in my life over the last few years. These are tough times we are living in now. The comforts that we have grown accustomed to could be taken away and then what? What do you do when it’s all gone? Who are you, if you don’t have your ‘things?”

Are these people that we see on the street sub-human because they don’t have homes?

What if they were you in a not so distant past? I think we have a habit of sympathizing with things only when they relate to us. I think we need to remember that pain, hurt and loss don’t know economic lines or ethnic background. We can all be affected by these issues.

Go out in your world and take the time to really look at someone. Take the time to see the people who you have chosen to eliminate from your field of vision. Go home and write about what you saw in their faces. Read it to yourself and think about what you saw that you never did before.

Quote

The Animal Planet

24 Oct

Have you lost your wonder?

I sit and watch my 3-year-old watch his favorite television show. It is a show all about nature on the Animal Planet network. He is in such wonder at all the information he sees. He listens with such intent at every morsel of science and nature coming his way. Tomorrow as we go about our day he will recall all the material he learned a day earlier. He is a little sponge.

I watch my son and think to myself, “Have I lost my wonder?” If so, when did I lose it? I would like to think that I am still in wonder of the many amazing things that surround me, there is always room to have more.

Be Awe. Be Wonder  – Jennifer Pastiloff

This past weekend I spent 48 hours in Ojai Valley, California. I was there assisting my sister on her Manifestation Yoga retreat. It was amazing! I was definitely in wonder of my surroundings, the people, and the energy.

(the view of the pool and valley at Casa Barranca in Ojai Valley, California)

Then real life happens.

Upon returning home yesterday I found that I had lost my steam. I felt deflated. I was missing my wonder. As I put my head down for sleep last night I asked myself a question. “How can I be in wonder in real life? How can I be in wonder when I am doing laundry or washing the dishes? Wonder is one of the beautiful things that look different for all of us. It is not quantifiable or measurable, it just is.

I feel wonder when I stop focusing on myself.

 I spent the morning today surrounded by 3 year olds at my youngest son’s preschool. We sang, danced, painted, and played. It is hard not to feel wonder in the presence of smiling and laughing children. I truly had so much fun. They are so full of pride and joy. They experience wonder at least a dozen times an hour.

I am in wonder of the body that moves me.

I am in wonder of my children.

I am in wonder of the amazing weather today.

I am in wonder of the delicious food on my table.

I am in wonder of the curiosity of my dogs.

I am in wonder of the love of new friends.

What is your wonder today?

 

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.

%d bloggers like this: