Before the last breath, a man was a babe.

Second son of an immigrant proud to give his name.

Before the last breath, a man was a boy.

Devoted and loving, his parents’ pride and joy.

Before the last breath, a man learned his duty.

Sent to shine shoes, every dime to his fam’ly.

Before the last breath, a man was a youth.

Hardworking and noble, never wavering from truth.

Before the last breath, a man gave his service.

Full of pride for his country, now sure of his purpose.

Before the last breath, a man was called home.

His obligation to family, both parents now gone.

Before the last breath, a man was a groom.

Committed to one woman, their love would soon bloom.

Before the last breath, a man was a father.

Blessed with a son and years later a daughter.

Before the last breath, a man was a patriarch.

Protecting and loving with all of his heart.

Before the last breath, a man was a grandfather.

Three children he loved, his purpose grew stronger.

Before the last breath, a man lived his Life.

Devoted and graced he cared for his wife.

Before the last breath, a final call from Above.

Last words to his daughter were full of his love.

With her hand in his, he mustered the strength,

“I love you sweetheart,” and then his last breath.

When you find something you thought was lost, you feel relief. Excitement floods your body at the sight of that lost item and you are overjoyed. But, when you find something that you never knew existed, the feelings are unexplainable. A thousand emotions run through you and at the heart of them all is surprise. I felt that exact emotion the year after my mother passed away. I came across my old senior portrait in a frame that had hung for decades at my parents’ home. It had been sitting in a moving box in my basement. Something made me go through that box and pick up that frame. Something made me bend back the hooks and remove the cardboard backing. There I found the most beautiful image I had seen in years. It was a sketching of my mother from 1951. An artist must have drawn her as a young woman when she visited Coney Island with friends. I immediately felt her presence, and, in that picture, I saw her innocence. She had already survived the loss of both of her parents; yet, she hadn’t met my father and she hadn’t started her journey through motherhood. She hadn’t started that journey through the sorrow and the joy. I never expected to find such a treasure. I never even knew it existed. It made me think about my journey and I realized I had found so many things along the way that I never knew existed within myself. Finding that sketch was the beginning of finding myself. You’ll be surprised at what you find out about yourself when you’re ready to open your eyes.

“Always remember that you are braver than you believe, stronger than you seem, smarter than you think and loved more than you’ll ever know.” (A.A. Milne, Winnie the Pooh). I had never truly believed I was any of those things. Bravery is reserved for soldiers and heroes. Strength is found in those that overcome great physical obstacles. Intelligence is something inherent in those with years and years of eduction and schooling. Being loved by many is something the pious and benevolent possess. It took me years to uncover and “find” those traits that I never knew were part of me. It took me until now to understand, accept and let go of the voices in my head and the guilt in my heart. It took me twenty something years to “find” myself . As I sat in amazement holding that sketch of my mother I had found, I realized that I was about to discover so much more.

I found my bravery. I believe there is bravery in every mother that holds their child through any illness, rocks them to sleep after hours of crying, holds their child’s hand while looking into the eyes of a doctor telling them very difficult things, and realizes their child is never going to be like other children. Courage, fortitude and fearlessness reside in every mother. I was no different. I held my baby girl after every seizure, rode with her in ambulances comforting her as best I could, rocked her to sleep hundreds of times when she fought rest with every ounce of her being, held her hand while doctor’s told me what it was going to be like for the next twenty years and, more importantly,  I looked into the eyes of that little girl and told her she was “smart” and that people were looking at her because she was “beautiful.” Years ago I wanted to run and hide because I was ashamed. Those aren’t exactly hallmarks of bravery, of course, guilt never let me forget that I had those feelings. Guilt kept reminding me that I once didn’t want that baby girl and that I didn’t want to be her mother. I found my bravery when I quieted that voice.

I found my strength. Stability and tenacity were never my strong suits. If you asked me what I wanted for breakfast I’d simply say, “whatever you’re having.” If I disagreed with someone, I kept it to myself, smiled and walked away. When something seemed too difficult, I moved on to something else. I was always changing my mind and doubting every decision I made without fail. I crumbled under pressure, especially when I felt the weight of responsibility.  I was never strong, at least, not on my own. But, when Boy was around, his strength lifted me. He set the compass for due North and that’s where we headed. He took the reigns and always got us back on track. His strength, decisiveness and authority put me back together when I was rubble. When I couldn’t handle being her mother, he’d carry the burden for both of us and when I shared my guilt with him………he listened and understood. In life there are so many decisions; so many choices to be made. Neither one of us knew what the right choices were, but, at least, he was there for me when I needed it the most. Through him I found my strength.

I found my intelligence. I remember the first time holding that baby girl and how scared I was. Every parent has that moment when they realize they have no idea what they are doing. I felt that often. I had no idea what to do with a child that wasn’t “typical” and that almost drove me to give up and walk away. But, something inside me wanted to learn and something inside me wanted to understand. I read books, talked to professionals and found myself back in the classroom all because of that little girl. I found my purpose and my passion and I finally realized I was smarter than I ever let myself imagine. I had no purpose and no passion when I first started out in college. I had no idea what I wanted to do with my life. Boy and I both took our time in that area. We actually grew up…… together. There is no better platform for learning than struggle. There are no better avenues to learn than the streets of life. I learned everything by walking down those unlit streets of Holland; turning on lights one at a time. I still have plenty of lights to ignite, but I’m more sure of how to do that than I was twenty something years ago. I believe more in my ability than I ever did.

I found love. More importantly, I realized the value of loving others and the strength in loving yourself. That sketch of my mother that was hidden away for years, hangs in a frame outside my bedroom door. It reminds me everyday about the importance of loving others. Her example of selflessness lives in my heart. Family was everything to her and she gave so much of herself to them. My brother and I were loved and we never doubted it for a second. She took on our problems and our worries and prayed for us to find our way through them. I kept so many things from her because I knew how she worried and I didn’t want to be a burden to her. But, she instinctively knew everything and when I would open up to her she’d cry for me and tell me that, “she knew” something wasn’t right. She would have given her life to make things better for her children. That kind of love for others is what I’ve found through my own children. But, loving myself was much more of a challenge and something that has taken years to finally comprehend. Those voices kept me down. Those voices whispered over and over again that I wasn’t good enough or strong enough. That picture of my mother reminds me everyday not to listen those whispers. That’s not what she would have wanted. That’s not what she would want to be her legacy.  “Stop hating yourself for everything you aren’t; start loving yourself for everything you are.” Author Unknown.

I also found forgiveness. When you’re used to blaming yourself for everything, absolution is hard to find. Most of us live with guilt over something and those without it don’t know how lucky they are. The tears still continue to fall when I look at her sometimes. That dream I had for her all those years ago continues to appear from time to time. I’m not free from those thoughts or feelings; but I’m able to forgive myself for having them. I still get mad at her for being different. I’m only human. And, I still blame myself for her disabilities. I understand that I shouldn’t spend my whole life wishing for something to be different. So, I accept the guilt, let it go and then forgive myself. I allow the tears and the self-doubt. “Remember when you forgive, you heal. And when you let go, you grow.” Author Unknown.

Finally, I found my story. Everyone has a story. I never thought mine was an important one. I didn’t survive a horrible tragedy. I haven’t had to face many of the atrocities the world hands many individuals. I’m grateful for that. I’m grateful to have been raised by two wonderful parents. I found love with a Boy at the tender age of 19 and we’re still together. I have three beautiful children and I’ve watched them grow into loving and compassionate individuals. I never thought there was much in my story and I downplayed it as much as I could. The only reason I kept diaries and held onto those journals was for myself. To remind myself of the way it used to be. That story sat in boxes. Those poems sat stagnant in manilla folders tucked away in drawers. I started putting things together and realized something. As I laid everything down in front of me, I finally could see it. I could see the progression from a young, naive, scared young girl to a more confident, intelligent and grateful woman. At that moment, I knew I  needed to share my story. I knew I needed to set it free from those journals, diaries and manilla folders. I wanted to write it down and share it and finally set it free. I wanted to stand and share my story so that I could finally begin to heal and so that others could know that they aren’t alone. And, as I sit here and write these final words, I close my eyes and see my mother’s face and hear her beautiful voice faintly singing in the distance;  “When you walk through a storm, Hold your head up high, And don’t be afraid of the dark. At the end of the storm, Is a golden sky, And the sweet silver song of a lark. Walk on through the wind; Walk on through the rain, Tho’ your dreams be tossed and blown. Walk on, walk on, With hope in your heart, And you’ll never walk alone, You’ll never walk alone.” (Rogers and Hammerstein).

Sometimes you just have to let things go. Eight simple words that speak volumes. The years have taught me so much and with age I’ve learned to understand. It’s easier now to let things go than it was in the beginning. Twenty-something years ago I was lost. I was engulfed by so many emotions that I couldn’t make sense of at the time. I was young, naive, scared, lonely, unsure, confused, envious, guilt-ridden and remorseful. I worried about what everyone around me was thinking. I cared too much about what others perceived and I let those feelings override common sense. The voices in my head controlled me and I allowed guilt and shame to get too comfortable. But, I’ve learned now, that sometimes….. you just have to let things go.

But, letting go isn’t as easy as it sounds. In fact, everyday I have to remind myself to, “Just let go.” I think that’s what makes it hard for so many people who are struggling through hardships in their lives. They hear from every direction that they should move on, let go of the past and forge ahead. They innocently believe they have to accomplish letting go all at once in order to be happy. But, I’ve realized that letting go is more than just a one-time cleansing of the soul, it’s actually a daily task of acknowledging, grieving and understanding. Letting go, for me, is something I allow myself time for each and every day.

There are moments I think about when Boy met Girl all those years ago and the innocent dreams they had when they first started out. Every now and then I wonder what things would have been like if we had taken a different path. But, no matter where those thoughts take me, I remember to let them go. I’m reminded of the things that Boy and I have been through and how our love has been strengthened.  When I think about that hot July day that Baby Girl came into our lives, I stop and recall the laughter Boy and I experienced with our baby before things changed. And, when images of those not so pleasant years appear in my mind, I let them go and remind myself that we survived. We survived the seizures, the wild behaviors, the endless nights of crying, the not knowing and, even, the knowing. One deep breath and I let them go and I remind myself how much we’ve changed for the better because of all of those difficult moments we survived.

When someone reminds me that I was Chosen by God to be her mother, I simply smile. My thoughts wander to that cynical place each and every time. I continue to struggle accepting that I was picked to have a child with special needs. Trying to understand that concept led to so much internal conflict all those years ago.  Instead of a blessing, I felt I was being punished. I created a situation for myself that involved such guilt and shame over something that I must have done that displeased God. It was only after years of beating myself up inside, that I finally realized that I just had to let it go. I’m not chosen, nor am I being punished. The answers will never come and the reasons still aren’t clear but I’m in a better place. “The soul knows what to do to heal itself; the challenge is to silence the mind.” (Caroline Miss). My soul knew that, for now, I just had to let go.

There are moments when I remember that journal. That journal was my only friend during some of my most difficult days and nights. That journal was the only place I felt safe, the only place I felt that I wan’t being judged by others around me. The only place I could ‘say’ the words and thoughts I was feeling. I remember the envy and guilt and the places those emotions took me. The memories of wanting what others had and I didn’t still haunt me. Even now, I may quickly glance over at the car next to me on my morning drive and catch a glimpse of a young girl about 25, on her way to work, putting on her make-up or talking on her cell phone and I envy her. I can’t help but think about what should have been. Then the tears pool up in the corners of my eyes and the lump swells in my throat. I put my sunglasses on, turn the radio up and let the tears fall; wiping them away as I pull into my parking spot.

Unfortunately, I’m reminded daily of the Truth and that horrible word that stopped me dead in my tracks 18 years ago. Morning, noon and night I’m reminded of her deficits, not delays. There’s no way to escape any of those feelings except to acknowledge them. I stop and stare at her sometimes, recalling something funny she may have said or how she put her arm around me and told me she loved me and I feel the guilt each and every time. The guilt and shame of wanting her to be different. Again, the tears pool up and I grieve. There’s no end to the grieving process when you’re a parent of a child with special needs. The grieving process becomes a cycle and once you think you’ve finally accepted things, you’re thrown back into that infinite loop. Every day I’m witness to how much she knows and how much she yearns to be like everyone else. It’s never easy watching someone you love want something you can’t ever give them. But, once again, I simply have to let it go.  I have to put my trust in the belief that her life will be happy and the people in it will continue to love and support her.

Moments often arise when I think about Baby Boy and Baby Girl. I worry that the attention and love from me wasn’t enough and for that I feel sorrow. As siblings, they were witness to so many things within our home because of their older sister.  They were called upon to help and they were inadvertently expected to grow up faster than their peers and for that I cry.  I struggled for so long with the fact that SHE wasn’t like THEM. I could never truly enjoy their accomplishments because I always lamented for what she would never have and that tore me up inside; honor roll, graduations, girlfriends, boyfriends, driving, college, jobs and friendships, just to name a few.  But, then, after the tears fall, I sit in amazement of them and the people they’ve become BECAUSE of their sister. Their compassion, understanding and patience console me and I realize that I must have given them enough. Despite everything, it must have been enough.

When I look over and see an older couple with their adult child with a disability at a store or restaurant, I can’t keep the image of Boy and I twenty years from now caring for our oldest child the same way. I realize that someday the best and safest option may be for her to live with us. Still, I can’t help but feel such sorrow. I cry for those families and I cry for the future. There are currently 4.9 million citizens with developmental disabilities in our country and only 25% of them are receiving state developmental services. That means 75% of them are depending on their families for their daily life activities, safety and security, socialization, community opportunities and health (US Census 2013. Braddock et al, State of the State 2013). Each and every day I let that go. I remind myself that we’ve come a long way since the days of institutions when parents were made to think that was their only option. Despite my sadness about the future, I’m encouraged that things will continue to change for the better for individuals with disabilities and their families and I am thankful for the amazing human beings giving so much of their lives to helping adults with disabilities and their families.

The happy moments in my life make it easier to let go. There have been many voices in my head telling me things, but thankfully, the loudest voice has been the one telling me to smile, be positive and laugh. I’m not exactly sure where that little voice came from and how it became the loudest, but that’s what truly saves me each and every day. In all my years of tying knots and searching for “the truth,” I would always come across a saying or proverb that resonated something within me. “A thousand candles can be lit from the light of just one and the life of that candle will never be shorted. Happiness never decreases by being shared.” (Buddha). So, in a sense, if I want to live in a world where people accept my daughter for being different, I have to keep my candle lit so they can see that happiness can survive absolutely anything. I often repeat those proverbs and sayings over and over in my mind to keep those ‘other’ thoughts from turning up their volume. Letting go doesn’t come easy but nothing worth it ever does. Finding yourself is a journey best begun with an empty suitcase.

Each day I find myself in that place, 

Doubting, questioning, trying to erase, 

Those thoughts and feelings that bring me down, 

Twisting and turning my spirit around.

Accepting those feelings but never for long;

Allowing those tears to swell up and fall.

And then a deep breathe and one sigh of woe, 

I tell myself softly to just let go. 

Just let go……open your eyes,

Just let go……let your beauty rise.

Just let go……live in the light;

Just let go….know it’s alright.

Just let go…..feel the peace of today; 

Just let go…..let the guilt float away. 

I often sit and wonder about the past twenty-something years.  The memories, good and bad, are still so vivid in my mind. The streets and roads that we chose to go down as a family were all influenced by having a child with special needs. I sometimes wonder if Baby Boy and Baby Girl would be the same people they are today without their sister and her special needs? And, what would Boy and I be like? What kind of relationship would we have today if we weren’t forced to come together and work things out so many times during those early years? But, more importantly, what kind of person would I be today if I hadn’t been made to face my guilt, shame and envy? Had my little girl truly changed our family and made us better people despite everything?

I had never understood what people meant when they thanked God for their special needs child. My bitterness often made me scoff at comments like that when I would read them or hear them. I honestly couldn’t understand why someone would be thankful that their child was disabled; it just didn’t make sense to me. I had always yearned for things to be different and for her to be ‘normal.’ I struggled accepting the fact that she wasn’t going to live the life that I had imagined all those years ago and I wanted so much to change things. I didn’t want it for myself, but for her. I wanted her to have those experiences that every mother wants for their child and that was the cause of so much grief and pain that I carried with me each and every day. Although, now, twenty-something years later, I’m able to understand what those people meant when they said it was “a blessing,” I still struggle everyday accepting it.

What I mean is; I understand that our beautiful young daughter has changed our family. She has given us a unique view on life. One that’s focused on acceptance and understanding of others that are different. A view that’s granted us patience beyond what’s typical for any family and a view that includes loving each other no matter what the circumstances. I understand that she has given me strength to handle so much more than I ever thought I could and she has given me resilience to climb back up that metaphorical rope each and every time I slip off.  Our family wouldn’t be the same without her in our lives and I understand that, but, I do not accept it.  I do not accept it because those feelings and emotions are the very things that keep me fighting to understand her and others like her. I realize I can’t change it, but I’m angry. I’m angry that these things happen to such innocent people. And, I’m angry because there isn’t enough support for so many individuals with disabilities as they become adults. Yes, I’m grateful for the positive effects on our family, but I want more for my daughter and the tens of thousands like her. I want a life for her beyond the four walls of her bedroom and beyond just her family.

You see, after high school, she hasn’t had much of a life. She, along with thousands of others, remains on a waiting list. Waiting for her medicaid waiver services so that she can attend a day service program every day, live in a group home with some of her other adult friends and have care-providers to help her with some basic daily-living skills. At this point, while she’s waiting, family is everything for her. We continue to be her support, her care-providers, her entertainment and her transportation; but we can only do so much. We’ve given up certain things within our own lives and we’ve had to set aside time and money to provide a life outside our home for her because the alternative would be…..nothing. On the days she sits at home, she does….nothing. She sleeps in her room and when I make it home after work, she’s frustrated. She’s frustrated because she’s bored, anxious and lonely. She’s abnormally attached to me; following me around wherever I go, petting my hair, talking to me nonstop, mostly in the form of repetitive questions because that’s how she communicates. She can’t stop her worries and fears that someone else may be talking to me and this makes her angry. So, she aggressively acts out on anything and anyone in her path; which ends up being me…..most of the time.

Family is everything for her, but I wish it wasn’t the only thing. Through the years, I’ve met so many incredible families. I’ve witnessed their tenacity as they care for their child with special needs. From young families to old ones; I’ve watched them. No better people exist in this world and my heart pours out to each and every one of them. I see them; especially those older parents that have been on their roller coaster for years and years. I see past their smiles and pleasantries and I know them. I see the fatigue and exasperation of years caring for their loved one without complaining or questioning; sometimes without even stopping to care for themselves. They do it because the love they have for their child is enormous and surpasses all those other feelings they’ve held back for so long. I know in my heart they’ve felt the same things; the guilt, the shame, the envy. It seems, however, that the years have subdued those feelings for them. Perhaps, they’ve allowed themselves to accept things.  And, every time I see them, I catch a glimpse of my own future. Boy and I will always be everything to her and our love for her surpasses everything else because that’s what family is.

Family is everything, but it shouldn’t be the only thing. I’ve learned from years of talking to young people with disabilities that they want their own lives apart from their families. They don’t want their parents ‘caring’ for them like children forever. They want what their peers have; friendships, relationships, love, and the choice to do what they want to with their own lives. Even my daughter, despite her ‘low IQ’ wants the same things and it’s taken me years to realize and understand the importance of that. Self-determination, self-advocacy, self-reliance, self-sufficiency, all of those things are vitally important to our growth as individuals and as adults. Why wouldn’t it be important to people with disabilities as well?

Tomorrow I will look upon with joy instead of sorrow, because the best is yet to come with the acceptance of tomorrow. When I wrote those words over fifteen years ago, I was hopeful that the world would take care of my little girl. Now, whenever I see those aging parents, gray hair, tired eyes, dragging bodies, I realize how far we still have to go. They’ve been worn down by the years. The years of fighting for services for their child. The years of fighting against substandard programs and second-rate care. The years of worrying that their child was being taken advantage of by others. Many of them have given up and have taken their adult children back into their homes. Sadly, many of those adult children have experienced what we fear the most as parents; being used, abused and neglected by their so-called care-providers. And, while that reality scares me to death and makes me sick to my stomach to even think about, I’m going to put my faith in the fact that there are good people in this world that won’t let that happen to my little girl.

Acceptance and respect are out there;  I know they are. They are there in the young people I see all around me. The ones giving up so much of themselves to help others in need. The ones who’ve grown up surrounded by individuals with disabilities in their classrooms and in their communities. Respect and acceptance are there in the people who are fighting for the rights of individuals with disabilities so that they can experience self-determination and make their own decisions. They are there in the hearts of the amazing individuals providing exemplary care to adults in day-service programs and group homes for minimal pay. They are there within the siblings, selflessly helping their parents without questioning or complaining and sometimes taking on guardianship of their special needs siblings after their parents have passed away.  And, they are there within the parents and extended family members giving everything of themselves and never stopping. I’m encouraged by these observations but I know we still have a long way to go and I understand that Boy and I will always be everything to her for the rest of our lives.

Michael J. Fox once said, “Family is not an important thing, it’s everything.” Family was truly everything in our lives. We depended on each other for so many things. Boy and I worked hard to hold ourselves together and make the best of everything despite the trials and tribulations we faced on a daily basis. We never wanted to complain or ask too much of others. We didn’t know how. We were both too proud to ask for help and we knew we’d eventually make it through the hard times. We were grateful for everything we had but the most important thing was our family. Despite the adversity that we sometimes faced, we always grew stronger together. The people in our ‘normal’ world brought us joy and hope for the future, but nobody comprehended our situation or took care of us like our family.

We often counted on our extended family for support despite the distance between us. There was no one else I trusted more to take care of my little girl than my mother-in-law. She had the strength and energy to keep up with her when she was little and she was there for us when we just needed some time away.  Those times when she would babysit so Boy and I could reconnect and get away were essential to our survival. We rarely asked anyone to babysit. It was such a chore when our girl was little. There were the medications, the possibility of seizures, the special diet and the behaviors.  I always felt guilty and would worry constantly about what trouble my girl was getting into. I would rather deal with it all myself than put someone else through it.  I think I can count on both my hands the times we asked friends or acquaintances to stay with her. But, my mother-in-law was the exception, and I can honestly say I had no worries when she was around. She was there from the beginning and every step along the way. She would even take Baby Girl and Baby Boy for weeks at a time in the summer; giving me a break from the craziness of all three. Her help and support was just one example of how family was everything in our little world. My parents, my in-laws and my sister-in-law supported us in so many ways and I consider myself lucky to have all of them in my life.

Whether our families supported us financially or emotionally, they were always there for us. My own mother, who instinctively knew what I was going through, even if I rarely spoke a word to her about it, would spend hours praying and worrying about all of us. She loved her grandchildren unconditionally and spent her final years being simply, Nonna. She had waited so long to become a grandmother and loved every minute of it. My sweet mother, who never wanted to burden anyone, would cry out to me often during her final years demanding, “Why are you here? Go home. I don’t want you here. You have enough problems of your own, you don’t need to take care of me. I don’t want you to see me like this.” The answer to my question of why I kept so much to myself and why I didn’t want to burden anyone with my problems was staring up at me through the eyes of Dementia. And, in those worried and troubled eyes, I saw so much of myself.

Family was everything. Once my mother began her decline into that dreaded place called ‘Dementia,’ I knew I had to move my parents closer to me. Despite everything else I had going on, I wanted to be there for her and I wanted her to spend her last few years with her precious grandchildren. Nothing made her happier. Nothing made her smile like being with her babies. Even though she was often confused, she knew she didn’t want any of us taking care of her or worrying about her. That was exactly what I had always felt myself; “It’s my problem, I’ll deal with it, don’t worry about me, I’ll be just fine.” It suddenly all made sense to me; I was just like her. But, nothing made me more proud than to be like her. Nothing made me more proud than to be like that woman who had given more of herself to others than anyone had ever given her.

My mother’s story was one of strength, courage, perseverance and faith. Born to Italian immigrants in 1927, she lived in pre-WWII Brooklyn, in a tiny one bedroom apartment along with five other children and her parents. Her family survived the Great Depression, sometimes forgoing many things, like, clean clothes, shoes without holes and three meals a day; but, that’s another story. She lost her own mother at the age of five and then her cherished father at fifteen. She spent years being shuffled between her older sisters; sleeping on their couches, living in their tiny apartments with their husbands and their children. She worked, went to school, paid her sisters room and board and still found time and money to spend with her beloved nieces and nephews. She grew into a beautiful young woman who contemplated becoming a nun so she could help others; much like the nuns at her school that had helped her after her mother passed away. But, that would not be her fate, and instead, she would marry my father and selflessly help him raise his two younger brothers after his parents died within months of each other.

Always helping others, that was her legacy. I never heard her complain about any part of her life; she was only humbled by it. She minimized the struggles and the suffering of her youth growing up without a mother, and kept so much of it silent. When she became a mother herself, she was overwhelmed with joy. Finally, a family of her own. But, it wouldn’t be easy for her and much like my own journey, she found herself often overwhelmed caring for a sick child. She must have felt the same guilt, exhaustion and confusion. Her baby boy was always sick, struggling to breath and allergic to so many things. She did her best and continued to have faith in the world around her. I know when I came along, I was loved beyond belief. My mother’s example of unconditional love has played an important part in my own life. Her example of selflessness, kindness and compassion are with me each and every day. Even during her final days, she didn’t want to be a burden to anyone. Family was everything and having a mother as selfless as mine was an honor.

In her eyes I saw a child, whose mother lost too young. 

A child faced with hardships; a selfless journey just begun.

In her eyes I saw a girl; now a father’s left her side.

A girl without a home; left to sisters to reside.

In her eyes I saw a woman; working hard and never wanting.

A woman full of faith; trusting God was always watching.

In her eyes I saw a bride; giving so much love to others. 

A bride whose selfless heart, would raise two orphaned brothers. 

In her eyes I saw a mother; her greatest deed unbound. 

A mother’s love unending, her purpose finally found. 

In her eyes I saw a martyr, quietly grieving for her son.

A martyr who’d give anything to see that grief undone. 

In her eyes I saw a grandma; bursting love from deep within.

A grandma loving life, through the laughter of her kin. 

In her eyes I saw a soul, sometimes lost and full of fear.

A soul that didn’t know me, as I shed a silent tear. 

In my eyes she is an angel; one that guides me down my road.

An angel who softly whispers, you’ll never be alone. 

Now that we learned our precious girl had Autism, what was going to change? What was this information going to do for us as she was entering adulthood and transitioning into a woman? Would there be more help for us? Would someone miraculously tell us that this treatment or that medication works perfectly for people with Autism? Would some book or website have all the answers for us now that we had a name for her disability? Would the lights suddenly turn on and the streets all of a sudden be marked? No, not really, but I do believe as parents of children with special needs we have a need to know. We have a deep desire for answers because we desperately want to know why? Why did this happen and why is our child so different? At least, for me, knowing that there was a name for her social anxiety, obsessive-compulsiveness, oppositional defiance and communication difficulty helped me better understand the woman she was becoming.

We survived those early years without calling it Autism; when seizures, medications, wild behaviors and special diets consumed our lives. We survived the transition, the middle and the knowing without Autism as well. But now, I could ‘see’ the Autism as I watched her grow into a woman. A woman with one dream and one desire. Simply, to be happy. Simply to do the things she loves with the people that she’s comfortable with and the people that she calls friends. That’s all. It’s the most basic of needs.  We all desire to belong, to have friends, to laugh with others and to share with people who accept us. All throughout her schooling, we talked about ‘inclusion’ and the amount of time she spent with her ‘typical’ peers throughout the day. The school teams even had to document it down to the minute. But, now as a woman, the amount of time she spends with typical 20-something year olds is diminishing and that’s OK. What I’ve also learned is that she’s the most comfortable with others like herself. But, that doesn’t mean she’s not quietly yearning to be with the rest of us in our ‘normal’ world. That’s what Autism is.

I don’t know the exact moment she became a woman. In my eyes, she had always been a child. A child I had to take care of each and every day. A child that needed me and only me because no one else knew her like I did. But, the truth was, she was no longer that child and she knew it. Her knowing was the biggest obstacle in our sometimes strenuous relationship. Maybe it all started for her in high school during her senior year. Despite the fact that she was almost 20, we were planning for her high school graduation and all the pomp and ceremony that goes along with it.  She joined her classroom peers as a group of them prepared for prom. The very handsome young man that was her date was my friend’s son, J, who also had Autism (Fragile X). His mother and I worked together to plan out the evening for both of them. We knew it wasn’t going to be easy but it seemed like the right thing to do. So,  I found the dress, scheduled the hair and nail appointments and had a young neighbor girl come over to do her makeup. She couldn’t help but smile the entire day; I’m sure she was feeling special and beautiful. But, I, on the other hand, struggled with all of it.

I struggled because I didn’t think I could go through with it and I admit that I was bitter. Bitter because this was going to be another opportunity for the world to remind me just how different she was from everyone else. And then, it hit me.  I ran upstairs to my bedroom and shut the door so no one would see me. I fell to my knees in my closet, so no one could hear me, and I cried. Boy walked in and found me. I sobbed and told him that I didn’t think I could do it. He put his arms around me and told me that I had to do it….for her. Even if it was hard, it was her day. I had to put my trust in the fact that she deserved this experience and that she needed it and wanted it. He grounded me and reminded me of my purpose and I took one giant deep breath and put a smile on my face.  I went straight into autopilot.  I sat with her at the salon holding back tears as I watched all the ‘other’ senior girls primping and priming for their big night. I continued smiling as we put on her elegant purple dress and I resentfully beamed as everyone “oohed and aahed” at how pretty she was. I maintained my grin as the rest of her group came to the house to take those ritualistic prom pictures. The chaperones that we hired to “watch over them” arrived and my friend and I put them in the car and we waved goodbye. I can still see her face beaming from ear to ear as she rocked and smiled in the back seat of their car. I think that was the moment I first saw her as a woman. That was the moment that I felt such immense joy and incredible sorrow all at the same time. It’s just so hard to explain.

I see you smile and beam with pride. 

I mask my tears and run to hide.

Who is this woman I see today?

That child of mine has gone away. 

And, then, I think of how you’re not; 

Those thoughts they leave me so distraught.

Because I know your life won’t be; 

The same as mine has been for me. 

I’m trying hard to just accept;

Your life won’t be what I expect.

And all I hope for you today;

Is for that smile to always stay.

She ended up having a wonderful time despite my bitterness and I realized the only thing that mattered was HER happiness. I had never seen such joy in her as I had during those few weeks between prom and graduation. Again, I realized how lucky we were to have had so many wonderful teachers, friends and people in our lives who came out to celebrate HER. She was beyond ecstatic during her graduation party as she opened the door for each and every guest that arrived. She greeted them with the biggest smile I had ever seen. And it was contagious. I had never smiled and laughed so much in my life as I had on that special day. I guess I never realized that so many people loved my little girl.

Ms. Boeding, her teacher and another one of our miracle workers, had told me how important her senior year would be and she was right. I had her to thank for encouraging us to stay that year so we could be a part of it all. I don’t think we’ve had anything as joyous since……….it was truly life-changing for the both of us, but mostly me. “Enjoy the little things in life because one day you’ll look back and realize they were the big things.” (Kurt Vonnegut). I wanted to give her that same joy each and every day but I wasn’t the one that had performed that miracle.  It was actually the people in her ‘normal’ world that provided her that perfect day. It was actually the people that I had envied just a few weeks before and I had them to thank. I just hope that she’ll find such joy again in her life……someday. And, I hope the people in her ‘normal’ world will be there for it.

So, twenty something years ago we stepped off that plane into a different country called Holland.  We didn’t speak the language; we didn’t know where to go and we really didn’t want to be there.  And, the pain of that never ever went away and the loss we felt all those years ago continues to haunt us even to this day.  But, despite those feelings, we tried our very best to learn everything we could about the very lovely parts of Holland. And, boy oh boy, the things we learned along the way. Dr. Seuss could never have imagined the things we learned and the places we went. “You will come to a place where the streets are not marked. Some windows are lighted, but mostly they’re darked. A place you could sprain both your elbow and chin! Do you dare to stay out? Do you dare to go in? How much can you lose? How much can you win?”  Dr. Seuss, Oh, the Places You’ll Go!   So many of the streets along our journey were unmarked and I found myself lost so many times because of that. So many times I found myself in the dark wanting to just give up. But, I never did because along the way so many things saved me. Oh, the places we went and the things we learned about that little girl and about ourselves and we were about to learn the biggest thing of all.

Where there are communication difficulties………….there is Autism.  Where there are sensory issues…………there is Autism.  Where there is social anxiety……….there is Autism.  Where there are repetitive actions………..there is Autism.  “Textbook; Classic Autism; Misdiagnosis,” those were the words we heard from the therapist when we began behavioral therapy services to help our Girl control her anger and rage at the age of nineteen.  There we were sitting in the basement after she had visited with our family for several hours.  She had observed her, set up situations for her and attempted to engage her in conversation. When she was sure, she asked to speak with us privately.

I remember her voice cracking a little bit as if she was nervous to tell us that she believed our daughter had been misdiagnosed for over eighteen years.  “I see this frequently, but your daughter has all the classic signs of an Autism Spectrum Disorder.”  I admit, I felt cold and clammy after she shared this ‘Truth’ with us; but it all made perfect sense.  I remembered what I would say to people when they asked if she had Autism; “Well, she has autistic tendencies.”  It wasn’t that I was in denial, believe me saying that your child has Autism has much less stigma attached to it than what I had been saying for years, “No, she has mental retardation.”

After listening to her observations, I felt angry. Angry because I could have been a part of the Autism community all those years ago and I should have been. I should have been able to utilize all the services available to other parents of children with Autism. My little girl should have had all of those ‘therapies’ and behavioral interventions and outside professionals working with her, but she didn’t. And then, like so many times before, the windows were “darked” and I was lost on another unmarked street. The only sound I could hear was a faint whisper; “She’s been misdiagnosed  all these years because YOU didn’t fight hard enough. YOU didn’t search out the right doctors. YOU didn’t demand more for her. YOU didn’t give her what she needed. YOU didn’t try the right medications and therapies. YOU weren’t a good enough mother.” Guilt never needed to shout at me……I was always able to hear it, no matter what. 

Maybe I didn’t fight hard enough and maybe I didn’t follow my instincts but I didn’t know any better and I couldn’t help but wonder; what exactly happened when doctors and teachers were with my daughter?  Why didn’t anyone say Autism and why did they dismiss it when I asked?  What was it about my little one that was so different from the other children with Autism at that time?  When I look back on all of the behaviors and difficulties we dealt every day, they were all classic AUTISM!

Journal Entries:

January 30^th, 1995:  You protested and carried on.  The two things I CAN’T ever do with you are brush your hair or tell you ‘NO’.

January 31^st, 1995:  You weren’t too happy and everything upset you. 

February 10^th, 1995:  We were invited to Grace’s birthday party.  Her parents were cooking in the kitchen and you wanted to eat, all you said was “I eat”, “I see”, and on and on.  

April 3^rd, 1995:    Everything sets you off.  Your tantrums are getting worse and happening a lot more often.

May 6^th, 1995:  This afternoon I put you up in your room because I needed a break and when you were up there you went to the bathroom in your diaper and then pulled out everything and finger-painted the walls and yourself!  It was horrible!

May 21^st, 1995:  Naughty things you say and Do:  you still get into your diapers and finger-paint the walls in your room, you throw everything in the potty (mommy’s makeup, magazines, and paper), you climb on the kitchen counters and table, you say “da dam”. 

September 1^st, 1995:  You started school about a week ago.  They’ve been having trouble with you going into tantrums about every fifteen minutes or so.  They were talking to me about getting a helmet for you to wear so you don’t hurt yourself.

December 9th, 1995:  I tried to sit on the floor and play but all you would do was climb on me and jump on my back and throw toys at me. 

January 3^rd, 1996:  You were a lot of work and you kept us all on our toes, you kept saying “shut up” all the time. 

January 12^th, 1996:  Today we met with the developmental pediatrician.  She said you had ADHD and Developmental Delay…..

School Journal Entries:

August 22^nd, 1995: Her temper flares are shorter, quick screams, then compliance. 

November 15^th, 1995:   Lots of talking-wish I could understand more of what she’s saying.  She bit herself during her first fit.

January 22^nd, 1996:  She continues to challenge authority continually.  We’ve gone back to the 10 X 2 compliance.  She seems more comfortable with the structure.

February 1^st, 1996:  She challenges everyone by putting toys in her mouth, picking things that she shouldn’t, and crawling under tables. 

February 26^th, 1996:  Still not interested in playing with the others but is playing closer to them now.  We worked on compliance and “Give me…” 

April 4^th, 1996:  She was upset before the egg hunt and got more upset after we got there.  Is she biting at home?

October 17^th, 1997:  It was a hard day for L, lots of hitting and pinching herself and us, very non-compliant all day. 

November 3^rd, 1997:  She had to come back from Pre-K classroom because she wanted to take her shirt off.

November 20^th, 1997:  She alternates between laying her head on her table and being a monster. 

December 12^th, 1997:  In her Pre-K class she tore up materials, hit and bit herself, banged her head against the wall, threw toys and wouldn’t pick them up. 

December 15^th, 1997: Our little girl was amazing, she pulled down her pants and Santa’s beard, stomped, yelled, bit several kids and herself. 

January 7^th, 1998:  Wow!  She messed in her pants and wet her pants, got her poop out (to mold it I guess).  

April 16^th, 1998:  A little rough this morning-noncompliant.  Tried to bite Maggie and couldn’t sit in a chair for her five minute time out so had to stand with me and hold my hand.

November 6^th, 1998:  She has been very impulsive and stubborn, saying “shut up, shut up” and “fa-oo”.

November 18^th, 1998:  L still having problems in PE, maybe over stimulated.

November 20^th, 1998:  Very shaky today and also trying to beat me up, pinching, hitting, trying to bite me and lots of yelling “shut up”. 

November 30^th, 1998:  … she was writing on other people’s papers, unfastening her pants in circle time, stood on the chair, constant “shut up”.

December 3^rd, 1998:  L has been very scary today, very defensive and didn’t seem to understand when we talked to her, didn’t eat lunch, she hit a girl in PE and pulled her hair, noticed a lot of nail biting, and some staring episodes. 

December 16^th, 1998:  Quiet today but very impulsive, unzipping pants, chewing headphones, cut up set of flash cards, and colored on everyone’s pictures.

January 14^th, 1999:  Wow!  It has been a day.  I finally just kept her by me and held her hand. 

February 19^th, 1999:  We have noticed that today and yesterday she has started to bite her shirt, it’s probably related to being hungry, lots of things have been going in her mouth lately.  

 May 7^th, 1999: Her high school buddy said he was really impressed with how well she was talking and interacting with him.  She put a 60 piece puzzle together too!  

September 21^st, 1999:  Oh my gosh, we have had a total meltdown this morning, doing the total opposite of what’s asked. 

November 5^th, 1999:  I know L has played chase with Maggie and other adults, but I’ve never seen her play with the other kids here….

February 23^rd, 2000:  We had a little problem this morning when she hit at me.  The rest of the morning has been shaky because she doesn’t want to comply much and she even laid out full body on one of the tables.

March 8^th, 2000:  Got off the bus yelling “no” at us this morning and went downhill from there.

May 23^rd, 2000:  Maggie went to a workshop and a woman suggested these squeaky toys to put in L’s shoes to help her walk on her heels and not her toes. 

October 24^th, 2000:  L’s friends from 1^st grade asked her to play but she wanted to look for birds and squirrels.   

December 4^th, 2000:  We saw some behaviors today that we haven’t seen in quite some time, defiance and running away. 

Doing what’s the most uncomplicated for the family isn’t always fair for everyone. The ‘other’ passengers on that roller coaster sometimes didn’t want to be on it at all, but they had no choice. They were the siblings and Betsy Cohen says the following about them; “Your siblings are the only people in the world who know what it’s like to have been brought up the way you were.” The siblings in this story are two of the most incredible individuals that I know and I’m proud to call them my children.  Of course, being brought up in our house meant that they probably saw things and heard things that confused them, tore them up inside, made them angry or made them cry. I can only assume what they were feeling during some of those crazy times inside the four walls of our home. They were sometimes the forgotten ones in so many situations. Not because Boy and I didn’t love them, but because we were often overwhelmed with caring for their sister.  I know, in this story, I never wanted them to feel like they were forgotten and I gave everything to make them feel special themselves. After all, they were my saviors so many times and they deserved nothing less.

I said I could only assume what they were thinking and feeling but I did have some idea. I had grown up with an older sibling that was disabled, in a way, himself.  I watched my parents for years and years struggle with so many things.  I watched my mother make countless trips to doctors, hospitals, therapists and emergency rooms.  I watched her shed tears for my brother and I laid in my bed many nights trying to drown out the noises coming from the room next door. My brother had been sick since birth, suffering with asthma, allergies and eczema. Then, as a teenager, he struggled in school and with his self-esteem and that led to experimenting with drugs and alcohol. My parents tried everything to help him and sought out counselors and therapists during his adolescence and adulthood. He was learning disabled, had attention difficulties and eventually was diagnosed with depression. As a young man, he unfortunately attached himself to all the wrong people because they offered him acceptance. His use of drugs and alcohol was an escape for him from whatever demons were inside his head telling him he wasn’t good enough. I know because I heard him crying in his room and I heard him telling my mother each and every time he slipped that he was sorry.  He left us at a very young age…….his heart gave out after years of suffering from severe asthma and struggling to breathe. One of the hardest things in the world is to see your mother cry……..it breaks your heart as a child……..and you never recover. Because I knew what that felt like, I never wanted them to see me cry, but I couldn’t always stop that from happening; I was by no means perfect.

The walls of a typical bedroom aren’t sound proof and sadly siblings hear everything. They see and know more than we think they do and they walk around with that baggage each and every day. I walked around with heavy baggage as an adolescent and I’ll always remember what that felt like. I’ll never forget my 15th birthday…..my brother came home late after a night of drinking and smoking with so called friends. He had missed my birthday dinner and celebration. I heard my father yelling, pushing him against the wall as my mother cried for him to stop. As if in a daze, I opened the door and screamed; “Please stop! Don’t yell at him! I don’t care!” My father and mother were both stunned to see me in my pajamas crying for my brother and they stopped, turned around and walked away, leaving us alone together. I went into his room, sat on his bed and told him I didn’t care that he missed my birthday or that he forgot my present. None of that mattered to me. I’ll never forget his words as he put his arms around me;  “I never want anyone to hurt you. I love you Gigi.” Thirteen days later he passed away. I was the sibling that was brought up that way……brought up the same way……the silent sibling that never gave my parents a hard time because I knew they had more than me to deal with and I never wanted to be a burden to them. I never wanted to make my mother cry like that ever again. And I could see that in my children…….there is something to be said about the bond that forms between siblings and the feelings that they have for each other even if nothing is ever said between them.

These two siblings that were brought up in our house were special beyond belief and like so many other siblings of children with special needs, they were compassionate, understanding, patient and wise beyond their years on the outside. But I never knew what they were feeling on the inside. Were they feeling left out? Were they angry at their sister for all the attention she was getting? Were they embarrassed by her when we were out in public and she threw a fit? Were they wishing they had different parents? Were they wishing they had an older sister that was normal? And, were they feeling guilty for even having those feelings? Siblings of children with special needs have so many questions and concerns that seem to never get addressed because we don’t know what to say. It’s hard to even talk about those things……but they need to hear them. They deserve to know the truth and, most of all, they need to know that they shouldn’t be embarrassed by any of their feelings. On the outside these two siblings were wise beyond their years …….but what were they feeling on the inside?

I could only hope that these two silent siblings, Baby Boy and Baby Girl, knew how much they were wanted and how much their parents loved them each and every day.  I was always worried that I wasn’t giving them enough and I didn’t want my problems to become their problems. That wasn’t fair to them. But, I was once given some wise advice. I was reminded that everyone has something to overcome in their life and that sometimes, “What doesn’t kill you makes you stronger.” Everyone that had ever met THEM, always noticed their kindness and patience. When Baby Boy was dragged around to numerous activities with his sister, he was always complimented by other parents on how mature he was and how compassionate he was. And, when he sacrificed and came home every day after middle school and high school to stay with his older sister without complaining, he showed us that he ‘understood.’ The same is true about Baby Girl. She somehow had a sixth sense about everything; understanding others came easily for her. As a teenager now herself, she drives her big sister around and includes her in activities with some of her friends. Her warmth, compassion and patience go beyond what’s expected of an ordinary sixteen year old. They are both extraordinary beyond words and if they struggled on the inside, nobody would ever have known……except me.  I ‘saw’ them and I knew. I ‘saw’ all that they sacrificed because they were a part of THIS family and I knew that it wasn’t always easy.  Like so many other siblings brought up in untypical situations, they were and are amazing.

The word lonely by its definition means, “affected with, characterized by, or causing a depressing feeling of being alone; lonesome.” It wasn’t that I was alone, or even that I was depressed all the time. For me lonely meant being lost. Lost between Italy and Holland. Lost between what to do and what not to do. Lost between knowing and not knowing. Lost between a mother and a special needs parent. It was a feeling of never fitting in anywhere, never feeling comfortable in any place except within myself. For years I was consumed with everything about my little girl and even though I worked hard to educate myself and advance my career, I always came home to the same feelings and issues. Even though I made friends and had acquaintances, I never really opened myself up to any of them. I felt the most comfortable with other ‘special needs’ moms. They were my community.  It was like we instantly connected without even saying a word. We knew what it was like behind closed doors and we never worried that the other person was ‘judging’ or questioning what we were doing as parents. But none of us ever seemed to have time for a social life. We were always busy dealing with our children and the only time we were together was when we were sitting in the bleachers watching our kids at Special Olympics. I spent a lot of time sitting on those bleachers sharing stories and just connecting with some of the most amazing and resilient individuals. 

But, I was lucky in that I landed in a place where a group of women pulled me over to their side. They were the ladies of Darby House and I contribute part of finding myself to them. They brought me out from the ‘shadows’, so to speak, by including me in their group. I discovered another side of myself……one that laughed, sang, danced and generally acted like a silly child. They included me in their Girls’ Night Out adventures and I even went along on several weekend getaways. Those times were so important to my growth as a person and they allowed me to separate myself from the world of my little girl if only for a few days. I began to realize the importance of friendship and the power of laughing. “Through humor you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation may be, you can survive it.” (Bill Cosby). To this day, laughter gets me through most everything and I’d much rather laugh about anything and everything than the alternative.

Laughter came easily when I was with the ladies of Darby House, but there were times when it was much harder to come by. My Big Girl was maturing and we were faced with so many different issues than when she was younger. She wasn’t a wild tornado anymore and instead it seemed that she was being consumed from the inside by her fears and frustrations. We weren’t ‘lucky’ and I could see that even though academically she was ‘stuck’ at a level far below her age, she was still experiencing many of the things that a young girl her age would face. She knew she was different and she knew people were talking about her or looking at her. I know this because she would tell me so. Even with her limited vocabulary, she would would tell me. She would tell me through her screaming when she was alone in her room. She would tell me through her ‘talking to herself’ when she thought no one was looking. She would tell me through her anxiety about being in public. She would tell me by wearing a coat everywhere she went, or by wringing her hands, or by rocking in her seat, rubbing her hair, or by constantly picking at her clothes and herself. And she would tell me through her words and that was what hurt my heart the most; “I don’t like it here. I don’t want to go. People are looking at me. People laugh at me. There are too many people here. I don’t like it, mom.”

And, so, despite finding my laughter and letting myself open up to new friendships, the Guilt returned. How else was I supposed to feel about this new phase? How else was I supposed to handle this new Truth and move past it without hurting inside for HER? It always came back to me and the way I felt about all of HER issues. They were all my fault and I struggled again with so many decisions. I hesitated to try antipsychotic medications because there were always side effects…..and I felt Guilty. I hated having to consider the fact that this was more than just ‘mental retardation’ and that now it could be so much worse…..because I felt Guilty and I hated seeing her so conflicted, so anxious, so depressed and so Lost herself…..because I felt Guilty. I was her mother and I was supposed to be able to take care of her…….and I didn’t know how to do that………and I felt Guilty. But, nowhere in the books and rhetoric about being a special needs parent did I find how to handle the Guilt and so I did what I had done in the past and I pushed myself to learn more. I went back to school. If I couldn’t help myself then I wanted to help other parents. I wanted to be there when they learned about their child’s disability and I wanted to be the one to tell them because I knew what it felt like to hear those words. And that’s how I found another piece of myself that I had dropped along the way all those years ago. If I couldn’t help my Little Girl, then maybe I could help someone else’s.

And, so, the years of the Growing Up went by and we tried the medications and we didn’t. There were times when we accepted the ugliness because we felt horrible about giving her ‘those’ pills. Both Boy and I struggled accepting that horrible Truth. It’s truly difficult for parents of children with disabilities when it comes to medicating their child. Because we’ve all been on this roller coaster ride with them; going up and down and up and down and we’ve gotten used to the ‘downs’ because we know if we just wait, we’ll be on our way up again. So,Boy and I rode that roller coaster up and down with our Girl for several years. We grieved for her and all that she was going through and when she abnormally attached herself to Boy, we let her and we dealt with her obsessive-compulsive behaviors because she had nothing else. We simply wanted her to be happy; she deserved to be happy. It wasn’t that we were giving in to her, we, along with other parents, just did what was the most uncomplicated for ourselves, for our families and for our child.

I never thought I’d see the day she’d know that she was different.

I never thought I’d look into her eyes and see the anguish. 

I never thought I’d see the day she’d know that she was different, 

I never thought I’d see those tears and feel her pain so vivid.

I’d always hoped she’d never know the thoughts in people’s heads.

I’d always wished she’d stay a child in peaceful bliss instead.

But who can stop what’s meant to be and the feelings she has inside?

And who can save her from herself as she makes her way through life?

No longer a child with an innocent mind,

Her carefree childhood left far behind.

A woman now with soaring fears; 

Insecure, anxious and full of tears.

Intense emotions that petrify,

A mother who’s lost to answer why?

My life up to this point had been partly held together by inspirational quotes and stories. Things started out with me believing that I was ‘Chosen’ and progressed into a beautiful analogy about Holland. Then, when things went haywire, I tied knots (oh, so many knots) into ropes and tried my best to hang on. And, in between those, there were others, “It is what it is. It could always be worse. Make the most of what you’ve been given. A step will do just fine.” But they were never as powerful as the quote I came across during this next phase; “Keep your thoughts positive because your thoughts become your words. Keep your words positive because your words become your behavior. Keep your behavior positive because your behavior becomes your habits. Keep your habits positive because your habits become your values. Keep your values positive because your values become your destiny.” (Mohandas Karamchand Gandhi). Deep down in my very nature I had always been a positive person. I refused to get swept up into the negative that I had seen others fall victim to but it wasn’t easy. I found myself defending my positive outlook to others who couldn’t see it themselves. But it was this ‘belief,’ this ‘choice,’ this ‘value’ that would keep me going and pick me up through some of the worst of times.

My little girl was ‘growing up’ and changing despite the fact that I didn’t want her to. Misti had helped me realize that she could do so much more than I had ever dreamed. We were lucky to have had her as a teacher for those years at the beginning of ‘the middle’ and they were good. But growing up happens and things always change. Boy and I struggled with so many decisions in our life and with our family. Every major decision had to include, “What about HER? How will this impact HER? Are we doing the right thing for HER?” There were always so many “what-ifs?” Boy grew tired of his job as a police officer and wanted a career change  and that meant a major transition. We packed our bags and headed to another city; leaving behind the comfort of everyone and everything we had known for years. Moving meant finding a new job, a new home, new doctors, new friends and a new support system. It also came along with new fears, new questions and new doubts. How would our family transition and how would our Big Girl deal with all of it? Change was never an easy thing for her and now everything in her world was going to shift. I said goodbye to everyone and choked back tears because I hated leaving the very people that were our heroes, our therapists, our teachers, our doctors, our “orthodontists,” our friends……our family…… and most of all…….I hated saying goodbye to the very people that had been my safety net for so many years.

I had heard it said many times from people that my little girl was “lucky.” She and I were “lucky” because she was unaware of the world around her and of other people. Because of her ‘low IQ’ she was living in “happy bliss;” unaware of her own disability and shortcomings. I’ll admit that I fell for those statements in the beginning. Sadly, I was going to realize that my little girl knew she was different and it was going to fire up a horrible emotional roller-coaster that would crash into our little world. ‘Growing up’ for her wasn’t going to involve just a change in hormones, pimples or mood swings that most teens experience. Her ‘growing up’ was going to include so much more ‘ugliness’ than I could ever have imagined and it just wasn’t fair. It just wasn’t fair for someone so fragile to have to deal with all of those feelings. It just wasn’t fair for this beautiful young girl to have to deal with the world around her and not understand what was happening to her. You see, she would begin to realize that she wasn’t like everyone else. She would start to notice the people around her staring and looking at her. And she would start to form thoughts in her head that people were laughing or talking about her and there was nothing I could do to stop this unfortunate part of ‘The Growing Up.’ There was nothing I could do……nothing. And even though I once thought that the world would accept her, I now started to doubt all of it.

The ugliness began after our move to Houston so she would have been 13 years old. It was the summer after Boy’s heart attack, horrible timing for any kind of major life transition, but after thinking long and hard about every little thing, we made the decision to forge ahead. Within weeks, we found a house, I found a job and the kids were enrolled in schools. We hoped and prayed that we would find new heroes to work with our Big Girl and we were mostly lucky. The first year we met Ms. Powell and we quickly learned that teaching was a personal mission for her as her own brother had a disability.  She provided us with pictures and positive descriptions of community-based field trips and daily learning tasks. It seemed that things fell right into place until she left at the end of that first year to start her own family. After that, the daily stories and notes didn’t continue as frequently and by the third year in middle school they were completely gone. We started seeing the changes increase each year but without the daily communication, we never knew what was happening during the day and if that had anything to do with our Girl’s progressive emotional decline.

Not that it would have mattered. Nothing could have stopped the changes going on inside her. There were times she spent hours in her room screaming. There were episodes of crying that she couldn’t explain to me. There were strange fears and obsessions that began to emerge and no one could explain anything to us. She started becoming violent and aggressive, hitting and throwing things with little to no provocation. We started talking to doctors about anti-psychotics, anti-depressants, mood stabilizers and other medications to help control things, but nothing worked. We put her on birth control pills to manage her cycle and that helped with some of the emotive ups and downs she was experiencing. Things were cycling so quickly and again I found myself doubting so many decisions. “Should we try this medication? What about side-effects? What will it do to her? Things aren’t so bad……..she’s doing better now. We can wait until things get worse again.” The right thing to do was never in any book and never came off the lips of any doctor. It was all up to us to figure out and again, it was exhausting, confusing, petrifying and lonely.