My favorite day of the year

When Ellie was in the NICU, I reached out to our local Down Syndrome Association. I remember typing that message in the comment section of their website, Ellie was in the NICU and we were scared and confused, and I wrote our tiny story, a story that had only just begun. Within hours I received a response and within days I had been contacted by two wonderful families. Their voices over the phone felt like hugs and I began to see, from the beginning, how welcoming this Down Syndrome family is.

When Ellie was about a month old, we attended our first Christmas party with our local Down Syndrome Association. I was tired, so tired, living in a daze of little sleep and so many appointments. I was actually really worried about bringing Ellie to a place with so many people, pre heart surgery I was afraid she’d get sick. The party felt like a blur, people wanting to talk to us and me not being ready. Not ready to tell our story and talk about a diagnosis with strangers.

As these years have gone by, and I’ve grown so much, we haven’t missed a holiday party with our local association. We are members and unfortunately can’t attend a lot of events, but the holiday party is an event that I will always attend. There are families from every part of our community and we are all different. Yet we all have one tiny part of us that we share, we love someone with Down Syndrome.

This past Sunday was the annual Christmas party. We sat at a table with a 20 year old woman with Down Syndrome and her parents. We talked about school and how things can be hard, and we discussed the battles you sometimes have to fight. And the parents who had been through it before looked at the parents who had only just begun and they smiled, a little bit of a nervous smile. And we both acknowledged that there are battles you have to fight and those fights are hard but worth it. But then they told us about their daughter’s life and they listed off all of her activities and how she’s been playing hockey since age 8, and how she’s going to be on the news next week. And I saw her smile and the glow from it surrounded her. And we all laughed and the parents who had been through it before looked at the parents who had only just begun and they smiled, a bit of an excited smile, as if to tell us how lucky we truly were.

As the party was coming to a close, Santa arrived, and I felt like I was 5 years old again, and I sort of started to believe in his presence, in the magic of this season, for it was tangible in that room. There was a feeling of love and pride in that room, I could feel it when we went to our first holiday party but I didn’t quite understand it yet. As we were about to leave, a boy, maybe 10 or 11, who had Down Syndrome stopped us to say hello. He had that full body smile that fills your heart and he looked at Ellie and said, “you, I love.”

No matter how involved I am with our local Down syndrome association, I will never miss this party, it’s my favourite day all year.

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Family Meeting

I know its been a little over a month since I’ve written a post, its been a busy month! I like to devote a lot of time to each post I write and the time hasn’t been there recently. Trust me though, we are all doing wonderfully. Today I had the wonderful opportunity to be invited to a family meeting where a caring group of family members met to determine the fate of a child with Down Syndrome. I don’t know all the specifics, nor do I feel comfortable telling their own story on my blog. My job was to let them know what it’s like to have a child with Down Syndrome, to give them our story. I feel blessed to be able to share the amazing things I have learned about having a child with Down Syndrome, but this feeling is always saddened by how little people know about it. How few people have met a person with Down Syndrome and how scary a life that involves raising a child with special need seems. Time and time again I wish I knew what I know now at Ellie’s birth. I am hoping that by the time my children have kids people will understand that we are all different, and that a different life is never bad.

So knowing I would be nervous (there were about 45 people there) and possibly an emotional mess I typed out an essay to read to the family. Here is what I told them:

When I was 13 weeks pregnant with Ellie, at our first ultrasound, they detected a thick nuchal fold and we were told there was a possibility our child had Down Syndrome. I was devastated. I cried for two days. We told no one, not our family, not our friends, not anyone. I had never met a single person with Down Syndrome in my life. Abortion was never considered but there is no doubt that we were terrified. I had opted out of prenatal screening so we let that secret sit way in the back of our minds and looked to our 20 week ultrasound to confirm anything. At the 20 week ultrasound we waited with anticipation, anxiously looking at the ultrasound tech for any indications that she saw something. When the ultrasound was completed, we were told there were no markers for Down Syndrome. I vividly remember being told that there was no sign of a heart defect and no indication whatsoever that our child would be born with T21. Admittedly we were relieved by this information. We left the office feeling certain our lives would continue just as they had before and the vision of the little girl we had always imagined for our child would remain intact. I confess there was a tiny piece of me that never let go of the thought that our child had Down Syndrome. I would rarely acknowledge that thought and never uttered it to my husband, but it was there. And its existence possibly made Ellie’s birthday a little easier, if only a tiny bit.

Ellie was breach as I was approaching the end of my pregnancy so we made the decision to have the doctor perform a procedure to turn her and then if the procedure was successful they would induce labor. All went according to plan and 13 hours after I arrived at the hospital on September 29, 2013, Eloise Nicole was born. I remember when she was born that she didn’t cry. My husband kept asking the doctor why she wasn’t crying. She looked slightly more blue than my first child but the feelings of having her superseded any worries. I held in my arms and immediately noticed how floppy she felt. I tried to remember if my oldest felt that way but couldn’t. As the midwives were doing their initial assessment, I saw a worried look in their eyes. In a blur of emotions and exhaustion, I can see the midwife approaching me and saying the words Down Syndrome. Then within minutes she was taken to the NICU and the on call pediatrician was being called in. Sometime later the doctor came to see me and she felt confident that Ellie had Down Syndrome, she mentioned markers such as crease along her hand, and a space between her toes, things I had honestly never heard of. Flashing through the blur that was Ellie’s NICU stay can be hard to look back on. The information flooding my brain all while worrying about Ellie. We met with doctor’s, therapists, specialists. I received a call and email from our local Down Syndrome chapter. Two families who reached out to us when days felt hard, days I hate to look back on but acknowledge they were part of our journey. During Ellie’s weeks in the NICU it was also confirmed that Ellie had a heart condition that would require open heart surgery. We met with a cardiologist and were explained what words like heart failure meant and how to determine how badly her heart was failing her.

The morning after Ellie was born my husband and I sat in a room full of people. We were invited to join in a meeting to discus Ellie’s case with everyone involved. I was wearing pjs and slippers. I felt like I was going to cry during the entire meeting. I felt completely terrified yet completely at ease, all at the same time. The head NICU doctor looked at me, and I remember these words perfectly, and said, “this may be hard to understand right now, but you are lucky your child has Down Syndrome. There are a lot of diagnosis’ out there, but few that are so heavily researched as T21.” I didn’t see it then, but I do know. There are very few diagnosis’ that have so many outlets for support. We know what to expect, we know what to look for, and we know how to proceed. There are parents out there looking for answers and trying to figure out what is going on with their children, and I have a piece of paper that says my daughter has T21, and there are at least 6 specialists that we see on a regular basis who have spent their careers understanding what that means.

During Ellie’s first year of life she was very sick, they wanted to wait till she was bigger for her to have her heart surgery so the first 6 months of her life were very difficult. I will say that the circumstances surrounding Ellie’s life were difficult, but Ellie herself was not. She has always been a very easy going baby. She rarely cried and had a general sense of ease that was tangible when you were around her. We had a lot of doctor’s appointments and trips to the ER because her heart was failing her. Ellie’s heart surgery was at Sick Kids in March of 2011. I noticed a difference in her health after surgery while she was still in the ICU. Bottles had always been difficult for her, taking hours to barely make an impact, but while she was still hooked up to IVs and lines and confined to her bed in the ICU, I gave her a bottle that she finished in 5 minutes. She actually drank it so quickly she then threw up all over me as I was celebrating the victory. Once we made it past recovery I couldn’t believe the difference and began to realize how hard her body was having to work prior to surgery and how sick she really was.

Ellie is mainly a healthy child. My 5 year old is in kindergarten so when she brings home colds Ellie generally gets them and is sick a bit longer than the rest of us. Her symptoms are usually a bit worse, but she complains the least. Every morning she takes a small amount of medication because her thyroid isn’t working properly. She has been on this medication since right before her heart surgery and will probably be on it for the rest of her life. She has blood tests every 6 months to check her CBC levels as well as her thyroid levels. I believe most children with Down Syndrome have an annual blood test to check their CBC. She has a family doctor, a pediatrician, a cardiologist, and an ENT. She sees her family doctor when she is sick, her pediatrician once every 6 months, her cardiologist once a year, and her ENT every 3 months. She sees the ENT because during her hearing tests they detected fluid in her ears and want to make sure she doesn’t have constant fluid which would require tubes, a very minor procedure that a lot of typical kids undergo. However at Ellie’s last 3 appointments her ears have been clear. She has passed her last two hearing tests and has been discharged from the hospital hearing program. Due to the anatomy of the ear for people with T21, its just important to make sure fluid is draining properly. Ellie sees an eye doctor once a year, because some people with Down Syndrome have correctable issues with their eyes, so far there are no concerns with her eyes at all. Ellie started walking at 18 months (only 3 months later than our typical child). She climbs stairs, and furniture, and tables, and anything she sees. She has been self feeding herself since she was a year old and eats just about anything. She drinks liquid from a cup and uses a fork to eat her food. She has an indescribable relationship with her sister. A bond that is one of the sweetest things I have ever seen.

Ellie has a physical therapist, an occupational therapist, a speech therapist, and a developmental specialist. All of those people come to our house and usually coordinate visits to come together. She was discharged from the physical therapy program a few months ago as she is developmentally on target with typical kids physically. We see speech and occupational about every 3 months. They give us tips to help Ellie express herself verbally and help me with ideas to work her fine motor skills. Later on they will come to Ellie’s school and help her with what she needs on a daily basis. If she needs help with potty training, they will be there. If Ellie needs a stool to sit on during story time in class because she can’t see, they can get that for her. I actually wish they were there with me for my first child because they have wonderful ideas. A friend of mine has a daughter with Down Syndrome who attends daycare and the therapists alternate between going to the day care and seeing her at home so that the daycare provider can be using their tricks as well.

Everyone who is involved in Ellie’s care was set up at that very first meeting the day after her birth. I never called anyone. They all called me and set everything up. They are all covered by OHIP. Like the doctor said, they know what to look for and they know what needs to be done. At a later date I may decide to get outside speech care if I think its necessary but all of our needs are being met. I adore everyone who is taking care of us. They have all become part of our family. They cheer for her to succeed and worry about her if something goes wrong. They are with me when she does something great, clapping and yelling, and I truly believe they love her like family.

She is a little small for her age, but I’m pretty happy she gets more wear out of her baby clothes. She is in about the 16% percentile for height and weight and will most likely always be smaller than typical peers. Ellie does not have as many words as her typical peers but that doesn’t mean she can’t express herself. She knows several signs and uses them. She shakes her head when she doesn’t want something. If she is thirsty she will grab a cup, take it to the fridge and hold it up yelling “mom.” She will clap when she is excited, she dances perfectly to music, and throws a tantrum like a typical two year old when things don’t go her way. Our daily life is completely typical. When she was first born I feel like I said the words Down Syndrome several times a day, now I am focused on Ellie as a child and barely see her as anything different from a typical kid.

We attend a physical therapy group class every Friday with other kids who have disabilities. I know about 4 families with children in area who have Down Syndrome and are Ellie’s age. They are all different. They all have their strengths and weaknesses. They all have different stories, but they and their families are all amazing. Ellie has made us stronger as a family. She has made me a stronger person. I was so terrified of what her diagnosis meant for our life and didn’t consider the positive effect it would have on all of us. When my husband comes home from work, Ellie yells like its Christmas morning. She throws whatever toy she is playing with down on the ground and runs to give him a hug. When my oldest daughter is sleeping too late and needs to get up for school, Ellie races in her room and hugs her and kisses her and yells her name and throws her clothes on her bed. Every single morning she wakes up laughing. She is an angel I didn’t even realize our family needed. Ellie is not always happy, she has every emotion just like anyone else, but her happiness is so pure, so real, that it glows from her body.

I don’t know for certain if Ellie will go to college or be successful on her own, but I also don’t know for certain if my typical kid will either. Nothing is guaranteed for any child. What I do know is that the possibility is available for both of them. There are college programs all over the country for people with disabilities and there are many people with Down Syndrome who have jobs and bills and who are handling life’s responsibilities wonderfully. There is a savings account available through the government for people with disabilities that will match your donation 1 to 3. For every $1000 you put into this account they will add $3000. Children with Down Syndrome are attending classes with their peers all the way through high school.

Life may be harder at times and different with Ellie. But that doesn’t mean that it will be bad. Some things require a little bit more time for her but I’ve realized that isn’t a bad thing. From Ellie I’ve learned the value of taking things slow, the power of a smile, the need to take breaks for hugs, and that traditional success does not dictate the importance of a life.

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Happy Birthday Eloise 

Two years ago today we woke up to a flooded basement and our dog getting sprayed by a skunk. We raced to an appointment at the hospital to have our baby flipped because she was breach. The flip was successful, labor was induced, and 13 hours later Eloise was born. The first thing I remember about her birth is that she never cried and the second thing I remember is how right she felt in my arms. The rest of that day doesn’t matter. Doctors with worried looks, her being taken from my arms to the NICU, and a diagnosis we knew nothing about are merely details. What I remember most from two years ago today is that Ellie entered this world smiling and that from that first moment in my arms I knew she was perfect. 
Although the moments of importance that day, the love we felt, the happiness of her arrival, are what I hold close to my heart, I can’t deny that Ellie’s birthday leaves me with mixed emotions. I don’t know if I’ll ever get over the sadness and regret I feel for Ellie’s first day of life. When babies come into this world, when parents welcome their child, the moments are filled with laughter. Hospital rooms are covered with flowers and balloons. Mothers sit holding their newborns, fathers smoke pretend cigars and gaze at their growing families. Phone calls are made, pictures are taken, that first day is special. Every moment within it screams happiness. But Ellie’s first day was different. She was born, and I held her, and I laughed and felt that intense love, that undying love, breathe within my bones. But then our midwife had a worried look, she said Down Syndrome and things got foggy. And within minutes an on call doctor was being paged and Ellie was being taken to the NICU. That moment was the hardest, her being taken away from me right after she was born, that ache still sits in my heart, that empty feeling from two years ago. One blurry moment followed another and I was laying in a hospital bed without my child. I was thinking of my baby, worrying about her and feeling so far away. A nurse came rushing into my room. I flung myself from the bed, scared for my child and this nurse held me, she hugged me like we were old friends and she said everything was okay but my baby needed to be on an IV and she needed consent. I wandered down the hall in slippers and sweatpants and rang the bell to gain entrance to the NICU. I had to ring a bell and ask a nurse if I could see my child. I slowly walked in, my eyes hurt from crying, and I sat by my daughter’s bedside. That first night, Ellie’s first hours of life, we never called friends and family to tell them the good news, we took only a few pictures and instead of a room full of flowers we sat in a rocking chair gazing at our child to the sound of beeps and alarms. We heard a diagnosis and we let that sink in. I wish so much I could change those moments. I wish I knew then that we would all survive, better than we had before. 
Flash forward two years and that day feels so different. I wish I could speak with myself that day knowing what I know now. I wish I could give myself a hug and say, “it’s okay, you can cry now because different is hard, and fear has the power to physically hurt, but those tears, they are the seeds that awaken you to a new perspective, a shift in your life, a birth for yourself, to see that difference is a tiny detail in something amazing.” I would have hugged myself, and cried, and flashes of this wonderful life would have surrounded the room and I would have known, this diagnosis does not warrant tears.
For some reason, I’m crying as I type this. I don’t know if it’s because I feel guilty for the sadness of that first day or if it’s because I’m so happy with how far we’ve come. In two years, this little girl has changed our lives. Those newborn days, weekly weigh-ins with the doctor, numerous echocardiograms, heart surgery, fighting through recovery, fighting to stand on her own, fighting for those first steps, walking, then running, the first time I heard her sweet voice, that first wave, that laugh, that beautiful all encompassing laugh. This little girl who doctors assumed was broken, could never be described as such. I’ve said it before, but words on a page do not define a person. Ellie is strong and brave and beautiful and smart and has a chromosomal disorder. Details. Details don’t define. A heart defect does not define a hearts ability to love. Low muscle tone doesn’t define a body’s ability to grow. And Ellie’s diagnosis doesn’t define who she is. 
With time, the glory of Ellie’s amazing life will overpower that first day and I’ll forgive myself, she will force me to. To think that different seemed so hard, when loving Ellie is the easiest thing I’ve ever done. To think that Ellie may have to work to gain acceptance from strangers her whole life when acceptance of others comes easiest for her. To think there were tears on her birth when the happiness she has given me every day since then is beyond measure. Ellie’s birthday will always be more than just a day, it will always remind us of how far we’ve come, there may always be a part of it that seems bittersweet, but I know that celebrating Ellie will always be easy, happiness exudes from her body, extra chromosome included. 

  
  
  
  

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Goodbye summer 

Saying goodbye to summer has been hard these past two years. I have recent memories of a hard winter that invades my thoughts sometimes. I remember that first year with Ellie when winter brought sadness. When the entire family was always sick, when we lived at the doctor. When Ellie was sick and Mya was waking up in the middle of the night throwing up. When summer came Ellie’s first year, it felt like a warm hug, a break in sickness and a reprieve from fear. I still feel that way about summer. This summer both kids have been well, Ellie has hit milestone after milestone, and it forces me to fear winter. To fear germs and regression. It forces me to constantly use hand sanitizer and wonder when our first sickness of the season will arrive. But amongst that fear I have to understand that illness can be part of life. That immune systems are stronger, that we can combat illness. That we have good doctors whom I trust. I can’t be scared of winter because winter can be beautiful. Snow flurries on little hands can be magical. Sitting by the fire, when the wind blows hard outside, can make a home feel safer than it ever has. Little boots and little gloves, red noses and sparkling eyes, I’ve decided that this winter I will forgo fear for magical moments. I will forget the memories in my mind that see winter as scary and summer as glory. Life is ups and downs, cold and warmth, sickness and health. Seasons come and go, I’m working on positivity, it has the power to heal wounds. 
  
  
  
   

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Sisters 

I didn’t realize how much Ellie misses Mya while she’s at school, till tonight. After dropping Mya off at school, when we come home, to a quiet house, Ellie crawls up the stairs and sneaks into Mya’s room. She runs to her bed and lays her head on the sheets. She yells Mya’s name (“iya iya”) and sits on the soft carpet of Mya’s floor and plays with Mya’s favorite dolls. Throughout the day, Ellie wanders the house, finding toys in cupboards, holding stuffed animals that she knows have been recently loved by Mya, but aside from these moments, it was tonight before bed, that I saw it. 
After bath time, both girls smelling like soap with wet hair, they cuddled on our bed. Ellie laid her head on Mya’s stomach and laughed. Not because she was being tickled, or because something funny had happened, but because her ultimate joy was with her again. The look in her eyes, almost of sense of ease, was palpable. 
This summer I have seen growth in Ellie with almost every day, her physical strength, her interaction, milestone upon milestone. And while I could site age or timing, I strongly believe it was the constant presence of her older sister. We attend a weekly physical therapy class and in the beginning of class we sing songs that ask for actions, a clap or a stomp. Ellie watches during class and occasionally gives a clap, but tonight on our bed Mya started waving her legs back and forth, stomping on the bed, and Ellie followed her direction precisely. Mya tickled Ellie making a “tick tick” sound and Ellie repeated her action and sound immediately. She copied Mya identically. 
When we were giving hugs goodnight, my squirmy Ellie could hardly be held by Travis and I, yet I placed her on Mya’s chest and she quietly rested her head on Mya’s shoulder, a glow in her eyes, a break in restlessness. These girls were meant to be sisters, forcing me yet again to believe in the amazing powers of fate. Mya was born to be Ellie’s older sister. A fate destined well before they even met. How lucky am I to see their relationship, to see them grow from each other, to see true love at such a young age. The greatest therapy has to be life and connections. The laughing of my girls tonight is echoing in my brain, I’ll keep it under my pillow to help me sleep, wishing I could bottle it up for rainy days. 

  
  
  

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My birthday 

Today is my birthday. I am 35. Officially in my mid-thirties. I don’t know how I pictured myself in my mid-thirties. I didn’t have aspirations to be a scientist or a lawyer, though idealizations such as these may have crossed a thought or two. When I was young, maybe 7 or 8, a friend of mine had a birthday party where everyone was dressed in a costume, a dream of what they wanted to be when they grew up, and I dressed as a bride. Some friends were dressed as doctors or athletes, but I wanted to have a family. This was before dreams such as these meant something, it was of an age where you could truly say what you wanted to be without judgement or guilt, where stereotypes didn’t matter and it was truly what you felt in your heart. I’ve heard that again, in respected literature, that who you want to be as a child is the absolute truth, the uninhibited dream. And I wanted to be a wife and a mother. As you grow up, politics gets mixed up in aspirations and women who go to work are always asked, “don’t you wish you could stay at home with your kids,” while women who stay at home are asked, “don’t you wish you could make something of yourself.” It’s not fair, women know this but still leave those questions hanging in their quiet moments. 
Birthdays, they are an interesting day. We celebrate ourselves while pondering our place in life, is it right, were there any mistakes. But this birthday, for me, this 35th year, I feel wonderfully at peace. I am where I need to be, and not only where I need to be, but where I want to be. I am happy. I am truly, body absorbing, all encompassing, happy. I feel confident in myself. I took a rare picture of myself today, and I looked at myself and I didn’t feel old and I didn’t feel young, I felt right. I saw wrinkles creeping from the corners of my eyes signifying a lot of laughs, and eyeliner drawn too quickly because I raced upstairs to grab Ellie from her crib, and a necklace that Mya told me to wear on my birthday, and I said to myself, maybe you could have been a Pulitzer Prize winning author, but maybe you still can be, because deadlines in life don’t really exist unless you set them. I am right, I am as perfect as I want to be, and 35 is going to be an epic year.  

 

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School 

Mya attends a wonderful Montessori school near our house. Her first day at this school, when she was 3, I was pregnant with Ellie. And I pictured my girls at this school. I pictured myself dropping them off together. I pictured Mya helping her sister with her bag. I pictured them there, learning together. But I have learned that although my visions of my children have changed, they are only altered, not abandoned. At one of our first appointments with our occupational therapist, I mentioned my dream of Mya and Ellie attending Montessori school together. She pursed her lips, had a sadness in her eyes, and with honesty, not cruelty or negativity, told me this dream may not follow through. She told me that with a private school they have the option to say no to Ellie, not because they don’t want her, but because they may not be able to handle her. Being a small school they may not have the resources to accept a child with special needs. This thought hung in the back of my brain as I brought Ellie with me to pick up Mya. I have never mentioned it to Mya’s school because I don’t know what Ellie’s needs will be when she is ready to attend preschool. One of the requirements for Mya to begin their program was to be potty trained, and realistically I don’t know if Ellie will be potty trained by the age of 3. 
Today Mya had an open house at her school to prepare her for her first day back from summer break on Tuesday. When we walked in the door, Mya ran to her teacher, hugging her and telling her about her summer, while Ellie stood in the doorway. Normally Ellie is really shy in social situations, while energetic and joyful around people she knows, she is timid and bashful when confronted with people she doesn’t know. Mya’s teacher looked at Ellie and said, “Ellie you are so big! Look at you!” Ellie stood for a moment and looked at her, then she ran to her, and hugged her and laughed. I couldn’t believe she remembered her. Mya’s teacher picked up Ellie and said, “you’ll have your time at school soon too!” As we continued on our open house we saw Mya’s principal who also hugged Ellie and said, “when are you starting school dear?” I didn’t know what to say. I had kept the thought of Ellie here in a waiting pattern, not willing to look at options till later. But as I was talking to the principal I slipped, “I can’t wait for Ellie to come here in a year.” The words bursted out of my mouth like a nervous teenager. She looked at me and said, “I know, I can’t believe she’s almost two!” Was this a conversation about Ellie attending school here? Was this a normal conversation any parent would have? I continued, “I know you have a requirement for kids to be potty trained before they start but i don’t know if Ellie will be potty trained by next year, but we would love for her to attend here.” And at that point we had a brief conversation about the reality of Ellie attending Montessori school, and you know what happened? It wasn’t a big deal at all. It was the same conversation I’d had about Mya attending this school. There were no issues, no hesitations, no denials. Ellie was treated like a normal kid, she will go to the same school as Mya. They will put their back packs up on hooks in the same cubby room. They will share snacks and fight over friends, and when Ellie needs a reassuring hug in the middle of the day, her older sister will be there to grant her wishes. More alike than different, a mantra I will repeat many times. How could anyone, especially a school, say no to Ellie, the world is changing, I know it. I drove home from the open house feeling a warmth in my heart, I was waiting for acceptance when it was there the whole time. 

  
  
  
  
  

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