From the very beginning when people started reading the manuscript of Remembering Alexis, I learned that the honesty of our story touched people deeply and gave them permission to feel. And when I asked readers what their strongest reaction was to the book, I was blessed with their stories. I hope you feel comfortable in e-mailing me your story, short or long, at rememberingalexis@gmail.com. Learning about other people's lives broadens and deepens our perspective.
Christmas 2009
My Sweet Dear Noah,
Happy Birthday Noah, you are one-year old today.
Your beginning started out as a terrifying struggle for survival. I still remember so very vividly when I first laid my eyes upon you. Your sweet body was covered in tubes and wires and you rested in a little plastic container destined to take you away from me. I was not in that moment frightened for you. I cried tears of joy as I said out loud, "He's the most beautiful thing I have ever seen." In that moment I felt no pain, could hear no one else around me, it was just you, me and God. You laid quite still. I watched your stomach move to breathe, looked at all the dark hair with a single curl at the very top. I loved you with every inch of my being, more than I've ever loved anything in this world.
Our journey began a year ago today - a life-altering event that we didn't expect. I didn't initially realize how serious your condition was. Thankfully, as I look back on it now, I was grateful to have had been medicated as heavily as I was, so I didn't fully comprehend how much you were fighting to be here. Christmas morning came, and we were still apart. Before the sun came up your doctors called us to ask if we would allow a blood transfusion and told us you had been having seizures all night and they couldn't get you stable. Your daddy spent the day with you, by your side. I remember trying to watch a parade on the hospital television, but I went in and out of sleep, missing blocks of time. I tried talking to people but could hear myself slurring words and not making sense. A lady came to me, although I couldn't tell you today what she looked like, but she kneeled down by my bedside, opened my weak and unsteady hand to give me a pink rosary, and told me we would be okay. Your daddy came back filled with tears that day. I was worried he didn't know how to tell me you had gone to heaven.
When I was finally strong enough to be reunited with you, I rushed to your side only to find that you were hooked to so many machines and wires I could barely get to you. Your entire body shook with breathing machines. Your head wrapped in what looked like a gob of tin foil, you looked lifeless and swollen. They said I could touch you. I didn't know how, didn't know where to even begin to find a way to comfort you. All I could safely get to was your little foot. I picked it up and held it so gently not to disturb the saturation monitor they had on you. I couldn't talk to you, I just cried inconsolably, with my painful cry echoing every hallway. You moved your foot that I was holding and I told your daddy, "see, he'll be fine. He moved his foot." I felt you come alive. I knew you felt me.
My confidence in your survival was strong until they told us that your test results showed global brain damage and that you would not be able to survive on your own without breathing assistance. Our world crumbled. We didn't know what to do. We had faith you'd be okay, but all the doctors told us there was no hope. We thought we had gotten the courage to say goodbye if you had wanted to go to heaven. We chose a day to take special pictures of you and take you off all the machines. I knew I wasn't going to say goodbye that day even if it meant putting you back on machines to stay. I wasn't ready. But God knew that. He sent for you two very special people, Bill and Ernie, who held your foot, prayed for you and helped give you what you needed to stay. Even after they had left, I wasn't sure you would stay with us through the night. I looked at you and you looked at me with the same seriousness that you still do to this day. Do you remember what I asked you? I asked that you not look at the angels, not to listen to them, as I knew they must be pretty, and I felt many of them, but that I wanted you to stay with me, not to go with them.
You came home with us two days after, still not knowing if you would leave us at any time. But as the minutes turned into days and days into weeks and then into months, all the while you continued to get stronger and stronger. You had declared you were here to stay.
You have since made such a difference in this world in such a short amount of time. People who haven't yet had the wonderful opportunity to meet you have fallen in love with you. We had asked that those you've touched send you special letters this year and this is my letter to you:
You have taught me a multitude of things in this short year. I planned my life out for as long as I could remember, calculating every step I made along the way, counting each goal as if it made me a superstar. The first thing you taught me is you can't plan life. Someone once told me "If you want to make God laugh , tell him your plans for your life." That is so true. Life is unpredictable. We have some control over things, but most is God's plan for us. Houses, cars, fancy diplomas, big careers, and possessions — none of them matter. Life matters. Love matters.
You were meant to be here, meant to have the difficult birth you had, meant to face the challenges that you are. One day I pray that it will all be revealed to me, the purpose behind all of our hardships, our tears, that you will rise above every challenge before you to conquer all the dreams you desire.
When I look into your sweet baby blues, I think you understand that best of all. I feel you chose this. You knew that this is how it would be and you still wanted to be here. For that I am so very thankful. I can't imagine what this world would be like without you in it. And I'm so glad you had the courage to stay, knowing that your road would be harder than most.
You've shown me patience to give you the time to accomplish all these milestones that are moving slower for you. The sweetest rewards in life are the ones that you have to work the hardest for. You've shown me what things in life are truly worth fighting for, what things are trivial, and taught me to focus every part of positive energy I have in all the best directions.
You've taught me so much about people. Before you were born, I was hesitant to be that "social butterfly" that you'll find your grandmother to be. I cautiously went about choosing friends, always wondering what intentions lay behind each person before including them in my life. You have opened doors to show me the beauty that people have, the love that they have for even those they have never met. You've restored my faith in my fellow man. God has brought countless people into our lives, none of them I would have had the pleasure to know had it not been you that had connected us. You have gathered people in love, restored faith, and given us hope.
When I see your smile and hear your laughter, it reminds me of everything beautiful that God has created, the miracle that he has given to us, and presented to all. You are living proof that all things are possible, Noah. As time goes on, I see such determination and you're strong will to succeed. Although there are a lot of things that do not come naturally for you, I see you trying so very hard everyday to find a way around it all to accomplish all that you set your mind to.
I couldn't be more proud of you, more happy to be your mother. You are amazing in every sense of the word. And we are never alone. There are days when the house smells like fresh cut roses, those are the days I know God comes to check in on you. I wish you could tell me about all of your experiences, all that you know, all that you've come to do in this lifetime. There are secrets I see in your tender face, that I hope you'll be able to share with me someday. You offer me comfort beneath my worries and always find an unspoken way of reminding me of all the sunshine that surrounds us if I only look hard enough for it.
You will always be the most important part of our lives. We are so blessed to have you, to be able to share this journey with you. There isn't a day that goes by that I don't thank God for his December Rainbow and his sweet promise to you. Happy First Birthday, my little boy. We love you so very much.
Chad and his mom, Cindy, are from the Denver area. Chad was one of the first special needs graduates at Chapparal High School. He now lives in a host home in Parker. Cindy wrote the following poem to Chad as a tribute to him and to thank him for being the best son a mom could ever have.
Dear Chad,
Today is your graduation and with the teary eyes you have seen a million times, I want you to know...
I am "still" so very fortunate to be your mom.
Why?
Because your milk mustache is better than any advertisement.
Because your crow's feet show you laugh a lot.
Because you never drink and drive.
Because you "keep" money in your wallet.
Because you let me wear your Avs, Rockies and Broncos shirts.
Because you smile at me in the morning after many seizures.
Because you don't make fun of my cooking.
Because you forgive me for not being able to take care of you every day.
Because you hand your money to the lady in the drive thru and let me keep the change.
Because you walked up to mom/grandma's casket.
Because you help weed out the people who don't have depth.
Because you don't get offended by the word "retarded" like I do.
Because you hug my arm while we are driving.
Because if you could pray (and you might), I know you would thank God for Gordon and Liz.
Because you sleep holding on to your bubble wands.
Because my high school girlfriends' children still ask about you.
Because you are my buddy.
Because you remember Grandpa Clark's clock and cigar.
Because Shannon imitates you and watches you so closely.
Because the neighbor kids you used to play with have grown up looking "rough."
Because you give me good muscle tone from the waist UP.
Because you hug me as I pull up your pants.
Because your smile melts my heart.
Because Aunt Christy still makes you an Easter Basket.
Because you didn't care that I cried when I looked at your senior proofs, or when I bought your first bow tie, or when I watched the school bus leave every morning.
Because you survived the El Jebel Shriner taking you to the circus (he had to be over 90 years old!).
Because you are proof of pure innocence.
Because every opportunity worth anything has been because of you.
Because you get up quickly when I come to get you.
Because you can still walk.
Because your eyes are mine.
Because what other mom is composing such a list?
Because I am proud to be your mom.
In reading Remembering Alexis, I thought a lot about what my parents must have experienced with me, though certainly not to the same degree. But their experience certainly shaped who I have become.
In the 1950s, it was not uncommon for hospitals to place premature infants in incubators with 100% oxygen in order to facilitate breathing. In many instances, this resulted in damage to the optic nerve, causing significant loss of sight or even blindness. Such was the situation my parents found themselves in when I was born, and as a result of being premature and incubated, I developed a significant loss of vision.
I'm sure that it was devastating to my mom at the time because she relates how she cried for several days after making this discovery and her only consolation came from a caring nurse who told her how fortunate she was to have an otherwise very health and happy son.
My parents spent the next year searching for a cure, including a trip to the Mayo Clinic for confirmation of my situation. And although my dad is no longer alive, my mom still grieves occasionally. I know because she'll sometimes still say "if only" about my loss of vision.
When I was four, my parents met with the only expert they could find in Cheyenne, Wyoming, the guy in charge of vocational rehabilitation. Although I was a long way from the work world, this man also happened to be blind. His suggestion to my parents was that I should go to a residential school for the blind to learn all of the things I'd need to survive in the world - and since he was the expert, they heeded his advice
In September following my 5th birthday, my mom and dad filled my suitcase with clothes and belongings and, along with my older brother, we headed off to the Colorado School for the Deaf and Blind in Colorado Springs. I don't remember much about that day, but I do remember watching the 1954 White Pontiac disappearing from the parking lot of Jones Hall. I'd been deserted, abandoned by people that I loved the most in the world. My dad left a picture of all of us - mom, dad, my brother Rod - in front of that 1954 White Pontiac. And I remember ripping the pictue in half and throwing it on the ground. And I remember how happy I was that the house mother, Mrs. Burchett, picked it up and saved it, after carefully taping it back together and returning it to me a few days later. I also remember how long it seemed before I saw my family again. I wasn't aware that the school psychologist had told them they should not contact me for at least a month so I could acclimate. I really thought I would never see them again, even though I got letters from my mom almost daily.
By the beginning of my next year, after spending the summer in Cheyenne, I was thrilled that my parents had decided to quit their jobs and move to Colroado Springs to be closer to me. I was even permitted to go home every other weekend.
Although I don't know to what degree, I'm sure that it was a huge sacrifice for my family to leave Cheyenne and all the rest of their family to move to a town they knew nothing about. It was thrilling for me to have my family back if only every other weekend.
Kids know how much they mean to their parents - as I did. And the beauty of Remembering Alexis is that Alexis had - and has - a perspective on how much she is loved.
I just finished your book and my eyes are still wet with tears. I celebrated my 45th birthday this week and so it was the perfect time to read Remembering Alexis. It gave me perspective as to where God is leading me with my son, Spencer, and my unfulfilled dreams because I, too, have been living the life of a handicapped mother for 9 years.
I lost my "normal" son to the effects of viral encephalitis at 6 years old. For 9 years Spencer has been severely handicapped - cannot walk, talk, eat. I understand your heartache! I am amazed you lived it for 29 years!
I think the hardest thing I struggle with right now is watching my husband go after his dreams year after year and feeling stuck in the role of caregiver, mommy, counselor, friend, nurse and all the other roles I play. I feel my life slipping away, but I still have so much more I want to do. Some days I feel God has me exactly where I need to be and other days I want to start my life over.
I could identify with so many of your struggles, ideas, and emotions, but the strongest similarity we have is how we feel so connected with our angels. I call Spencer my little saint. And I have been told through people who have prayed for us that he sees me as his angel. I truly believe there is a supernatural realm with our special kids that is more active than with normal people. Because they are limited in so many ways, I truly believe that God blesses them with supernatural moments on a daily basis to remind them how special they are. As you know, they certainly don't get that vibe from the world around them!
Thank you for being bold enough to share yourself openly and for passing on the lessons learned through Alexis. I asked God several years ago if my son and I chose this life and I got a yes. I'm still processing that, especially on the difficult days. But I'm understanding the reasons for all the lessons learned and the strength Spencer gives me to move forward with my dreams. I hold onto the fact that I will one day see how all the pieces fit together into the big picture. I know he has touched many lives. I just don't think I know the magnitude of how many!
I went to middle school with both of your daughters in Denver. Although I could never begin to understand what Alexis went through in her life, I do know what it is like to be looked at as being different. I experienced a skull injury at six months and had a bone removed which left me with a bald spot on my head. God made my heart very empathetic to those who some would deem "different" simply because we do not fit into their idea of normalcy.
My wife Sandi lost her six-month old son from infant crib death almost 27 years ago. She was at work at the time and she had a caregiver taking care of him which left her racked with guilt for a long time. She still has pictures of him on the dresser in our house and we still visit the grave with flowers.
My best friend gave birth to her second child and the first words out of the OB/GYN's mouth were "Oh my God, we have a Downs baby!" Can you imagine the feeling? She and her husband had chosen not to have the testing and not to know the sex of the child. And then before they even knew if they had a baby boy or baby girl, the doctor spoke those words. My friend confided that she feared after her friends heard the news that they wouldn't even come to see her in the hospital. She was wrong. We came and we still come, and we delight in every milestone that precious little Drew makes. As my freind says, "For some people, having a child with Down Syndrome is the end of their world. For me, it was just the beginning." My friend is now a huge advocate for Down Syndrome, even chairing the annual "Buddy Walk" fundraiser in Oklahoma City. She has been the top individual fundraiser for the past 5 years. She attends the national convention each year and was on Capitol Hill a few months ago advocating for changes in the law. I am giving her a copy of your book for her birthday.
I started reading your book last night shortly after putting the kids to bed. I told myself I would just read one chapter and then carry on with my never ending list of things to do. I ended up reading until 1 a.m. and then getting up again a few hours later so that I could finish before the kids woke up and the day began.
I had just finished reading Alexis' letter to you as my kids woke up and I was whisked away into the usual morning routine. It wasn't until I dropped the kids off at school and Acacia gave me a hug and a kiss and said "I love you the mostest of the toastest Mommy" that I felt this wave of emotion come over me. I found myself racing to my car avoiding eye contact and the usual "Good Mornings" knowing that at any moment I was going to burst into tears and be unable to stop it.
I cried the entire way home. I cannot say they were tears of sadness or tears of joy. They were both. They were tears that for six years I had pushed aside because I didn't have the time to think about it or the capacity to deal with it. I just simply had to hold my head up and keep moving.
Reading of your journey and life with Alexis brought them all to the surface and I could no longer hold back. I cried for you and Alexis and knowing all that you had gone through and the struggles and joys that you experienced. I cried for my own sweet Acacia and all that we have gone through together, the trials and triumphs no one but the two of us know of. I cried for her father and all that he has lost in choosing to abandon her. I cried for my son and all that he has and will continue to go through. I cried for myself for the struggles and fears and grief and hurt and joy and laughter that I have gone through. I cried because in reading your story, I knew I could make it. I knew I could keep going, keep holding my head up and eventually the tears would cease and life would go back to normal.
When Acacia was born I was completely overwhelmed with grief. All I could think about was what I had or hadn't done to cause her to be born this way. I needed to know why she was "normal" at her ultra sound and then born without a hand. I needed to know that everything else was "normal" and could not accept the answer "we don't know." I couldn't accept that 90% of children born with short or missing limbs would also have an internal failure of a major organ and that they didn't know for sure which side of the scale Acacia fell to. When I went to the endless array of doctors and specialists and occupational therapists and not one of them had any answers, I felt betrayed by everything I had ever believed in. Doctors were supposed to have the answers. They were supposed to be able to fix her. I found my steadfast belief in God rocked to the core, and I was angry with God. How could he do this?
I kept all of these thoughts and emotions to myself, and it wasn't until Acacia was several months old that my sister, knowing me better than anyone in the world, saw through the mask and took me aside. What she said to me changed my life, "Amber, stop thinking about all of the things that Acacia will not be able to do and start thinking about all the things she can." I then broke down and told her how angry I was and how I felt that a just God would never allow this to happen, that I couldn't understand it, and she said "I don't believe for a minute that God intended for Acacia to be born this way, but I believe that he equipped you to be her mother, and he equipped Cade to be her brother, and that she is the greatest gift you will ever receive. And I believe God equipped her with the personality to deal with her differences and do something amazing with them."
From that moment on I started seeing what she was talking about. I started seeing that Acacia wasn't just born with physical differences. She was different inside too. She had this knack for making people love her. She drew people to her like a magnet, and I could see that she touched people in a way they had never been touched. Acacia taught me and continues to teach those around her what it means to truly love and the real meaning of beauty.
She is now six years old and continually blows me away with what she is capable of. She has the best handwriting in her class. She can do everything every other six year old does, and she does it with a smile, and in six years I have never once heard Acacia say she cannot do something. I have seen her spend hours figuring things out, and then she will look up at me with those big blue eyes and smile this mischievous smile that I know means "I told you so." She has taught me that there is nothing in life I cannot do and just as I start to tell myself I cannot go on, she does something to show me that I can, and I will.
When Acacia was one year old, we were at Children's Hospital when one of the therapists asked if I would mind speaking to a mom who was pregnant and just found out her child was going to be born with very similar birth defects as Acacia. I agreed, and the Mom met me and broke into tears. She looked at Acacia sound asleep in her car seat, with her hand wrapped up in a new brace they wanted to try, and the mom broke into tears and said "I am sorry but there is no way I can have a child like that" and she ran from the room in tears. I was shocked and appalled. I have thought about that woman numerous times over the past six years and wondered what she ended up deciding to do. I have always hoped that she carried that child to term and didn't rob herself of the amazing gift she was given. We never know what life has in store for us and the unknown gifts that line our path.
I cannot thank you enough for sharing your story with me. It gave me the courage to move on. It reminded me to be thankful for the tremendous gift I have been given. While I know there is nothing more challenging for me than being Acacia's mom, there is also nothing so rewarding.
You are an amazing woman, and your strength and courage and tenacity has encouraged me beyond measure. I greatly admire your ability to listen to your heart and your own intuition and do what you knew was right for Alexis. I wish I had the opportunity to get to know Alexis. She was obviously a remarkable woman. I realize that while my journey as Acacia's mom is still uncharted and in many ways vastly different than your own, in many ways it is the same and it touched my heart. Thank you for sharing your experience with me. It means more than you could ever know.
Our mother was a hard-working farm woman and the mother of five children. I kept thinking of mother as I read your story. We had a severely handicapped sister who was five years older than me. Olive Elizabeth was born with a non-functioning pituitary gland. Indianapolis Mercy Hospital specialists referred to her as a "cretin," a disparaging term. Olive could walk and talk, but she never attended school. As she sat and watched mother patch overalls for the men and boys, Mother would say, "Olive is too busy to go to school."
The nephews who lived on adjoining farms would distress Olive as her birthday, August 1, approached by saying she would have a "Devil's Food Cake." Olive would cry and say, "Food Cake!" which meant Angel's Food Cake, mother's specialty.
Mother bore the burden of Olive's condition for almost fifty years. She did outlive Olive and lived to complete a life-long ministry. Ula Marie, my sister, cared for our mother at home until death closed the long chapter. Ula Marie will appreciate your book and will shed tears as I did while reading your journey with Alexis.
