“Every child is gifted they just unwrap their packages at different times.”
Dear Young families with special needs children I want you to remember this…
I had a choice to test for certain conditions when I was pregnant with my daughter, Amy, but I turned them down. My reasoning was that the results wouldn’t matter to me one way or the other. I, of course, would love my child regardless. So, on June 27, 1994, the day I first touched my beautiful daughter, was the same day I found out that my baby had Down syndrome. Because she was premature, I had to wait a week to actually hold her in my arms. That week was very difficult, as I just wanted to take my child home and keep her close to me.
According to the National Down Syndrome Society, Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. It affects a child’s development and physical appearance.
A nurse in the hospital gave me advice that I want to pass along to all you young parents who are trying to grasp with the reality of your child’s diagnosis.
The nurse told me, “Take it one day at a time.”
To this day, her words echo in my head.
Medically, Amy has endured some serious challenges.
Amy was two-and-a-half pounds when she was born and eight weeks early. Thankfully she was still healthy even though she was underweight. As she got older, she wasn’t performing some of the milestones as other kids. They had her tested and found that she had Cerebral Palsy on her right side. Then shortly after, two years or less, she was diagnosed with Hypothyroidism, so she is on medication for the rest of her life. When she was four years old, she was diagnosed with leukemia and underwent two and a half years of treatment.
How did Amy handle all the adversity? Well, Amy doesn’t even know she’s been through anything adverse. She is the happiest person we know. But Amy’s condition has definitely been a challenge for me, even when she is in good health.
When my nieces, my nephews or my friend’s children, who were the same age as Amy, would reach milestones, I would always compare Amy to them. Don’t do that! I know, it’s tough to get over the fact that while your friend’s children are crawling or talking your child is not able to do the same. It took Amy three years to walk! Your child will meet all those milestones but he or she will do it on their own schedule.
Remember, “One day at a time.”
Your child will meet all those milestones but he or she will do it on their own schedule.
Also, I don’t care who you are, I know it is very hard to accept that your child isn’t going to live the life that you think they should live. But you must accept it. There is nothing you can do about it. You can’t change it. It is not going to go away.
Your child may be differently abled than Amy but for her, I thought it would be best to give her the same opportunities as my other children.
Amy still wants to sing and dance and run and swim and all those things, she just does it at her own pace.
In fact, in high school, the swim coach included Amy on the team. I was a little scared the first time they let her go in the deep end because I am afraid of water, but they had people all over to pull her out if needed. In the end, she became such a good swimmer that she no longer required one-on-one attention while she was in the pool. She also ran track, the 50-yard dash. And her coach made an adjustment to the hurdles for one year so she could race.
I want to tell you that everyone is going to be kind and compassionate. But the truth is that some people are very welcoming and other people are not, but I don’t care anymore and you shouldn’t either. Focus on doing what is best for your child.
Amy was in chorus and she was in sports. She did all the activities that she wanted. I think the benefits were immeasurable. She has a lot more confidence and like any child who participates in team sports, she is a better person for it. Her experiences enriched her life as well as the lives of her teammates and friends.
You might think as our children grow into adults, it gets easier. It doesn’t. Understanding social cues are a problem. Trying to understand what’s right to say, what’s wrong to say, what’s good, what’s bad, who is good, who is bad and why is a constant struggle. You can’t get angry because they just don’t understand. If you get angry, it is detrimental. Patience has to be number one in my book.
Like I said before, “One day at a time.”
Amy is 25 now. She is in a day program that volunteers daily in the community. She is also involved in theater, chorus, bowling and several social groups, which she loves.
I want you to know that even though your child may have a disability, it doesn’t mean he or she will not be happy. As long as a child is loved and cared for how can they not be happy?
Amy is not grumpy. She is a joy to be around and I love spending time with her. She always asks to do things that she likes. I would say 95 percent of the time she gets what she wants because it’s nothing extravagant.
My biggest fear now is not only her happiness but also her safety. That will probably never change for me or for you. That worry is just a part of our lives as parents. I feel the same way about my two older children.
Through all the ups and downs and the challenges and surprises, most of all I want you to know that the love you feel for your child that is strong and so overwhelming that you can’t put into words, that is what makes being a parent so special. That is what family is all about. It’s not when your child achieves. It is not what your child accomplishes or how they stack up against anyone else. It’s about love. On the toughest days, the days that test your patience or make you cry, that is what you need to remind yourself. Because the love I felt for my child when I was pregnant and didn’t know her condition, is not only even more present each and every day but very much returned.
From one parent to another,
About the author:
Kathy is the mother of three children. Her youngest daughter, Amy, has Down syndrome.
About the sponsor and the charity:
Gigi’s Playhouse changes lives through consistent delivery of free educational, therapeutic-based and career development programs for individuals with Down syndrome, their families and the community, through a replicable playhouse model.
Lauren Hall and Lauren Brill are donating $50 to Gigi’s Playhouse in Buffalo in honor of the first 50 shares of Kathy’s letter.
The Unsealed will match the donation if we get 21 new subscribers and Facebook followers.
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Thank you Lauren. Yes, we all have to start with the person in the mirror. Your reflections are received with mindfulness and appreciation. I've shared your article on my network. Stay safe and well. IyaSokoya Karade CEO/Owner Athletic Arts Academy NJ LLC Orange, New Jersey
May I encourage everyone of every color or shade, every ethnicity, and every faith (or no faith) to read the book Benjamin Watson wrote after he made such powerful and welcomed comments following the Ferguson, Missouri, killing and riots? Under Our Skin. Read the reviews, search and find the Under Our Skin Forum, it was in 2016, the video can be purchased and it is well worth the time and few dollars to watch. But read the book then give the book to a friend of another color or the same color as you! https://smile.amazon.com/Under-Our-Skin-Getting-Frustrations/dp/149641330X/ref=sr_1_1? When shopping on Smile.Amazon.Com you pay the same but Amazon contributes to your charity of choice (and ParentsUSA hopes you select it, the National Association of Parents, Inc.) David DeLugas, Executive Director, ParentsUSA
Nothing like maintaining a positive outlook! When i need to fight off despair i set goals. It is a great way to fight off negative thoughts and feeling!
Very interesting! Opinion at a later date!
Crazy that this still goes on. I fear for my safety almost all the time. Black or brown males are subject to arrest and violent behavior. I just read a article where a former New York cops claims they had to arrest more people of color to get a promotion. This is sick and I'm tired of living in fear. People are going to start fighting back.
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I think me and your grandpa would have been friends. I been a type 1 diabetic since three years old. I would have said the same thing waking up and seeing two nurses. Do I get to choose. I'm pretty sure I've done that before.
I have learned over my Fifty-Eight years of life, and more specifically over the last 10 that FDR's words about fearing only fear itself ring true; to me, they do, anyway. And, at the same time, how the words of the 23rd Psalm comfort me and my abundant faith in G-d allows me to fear only fear, knowing full well that He is always with me. Growing up in a Non-Orthodox, yet Observant Jewish family nicely brings both together and not only makes me feel more protected but commands me to believe so. You see, I have lived a different kind of life, as we all have to some degree, but mine changes daily. Not that I am ANY BETTER than anyone else, in fact, probably less so... I stray from my stories often. I shouldn't, but since my Stroke in 2012, I have somehow developed some sort of ADD, so please bear with me, the end will justify the means and I will *try* to stick with my story; for you, my readers. I moved my family of the ex-wife and four children Cross-Country in 2002 to be closer to my dad who was turning 75 that year, and while I could not afford both financially as well as mentally to move back to Southern California (where he and my mother lived), I chose the Midbar (Hebrew for Desert) of Arizona. Within just a few short weeks of moving here, I woke up one day with some of the most severe abdominal pain I had ever experienced. I found a local doctor and made an appointment to see him that day. I arrived at the appointment and was ushered into an examination room by their PA (Physician's Assistant), who is supposed to be the same as a Doctor, but not really (?). I was examined and Prescriptions for a Pain Medication and an Antibiotic. They continued to treat me in a like manner for almost six months when I ended up in an Emergency Room, where a CT Scan was performed and Colonoscopy was scheduled. I was then diagnosed with a grapefruit-sized obstruction and abscess in my colon that would require surgical intervention. Surgery was scheduled for two days later, on a Friday in Mid-March 2003. I arrived at the hospital at the designated time, 5:45 am; was admitted to the hospital; told them about ALL my allergies (including a BIG ONE, an allergy to a particular anesthetic agent), and taken to a room where I was put into one of those awful gowns and told that they'd be "right back" to take me to surgery. They promptly came back at 10:30 in the morning and took me to yet another room... to wait some more. At 11:45 the Anesthesiologist came in to talk with me. He informed me that he was going to use Propofol for my induction and that he was planning on using the EXACT ANESTHESIA TO WHICH I AM ALLERGIC to maintain me through surgery! "NOT ON ME, YOU'RE NOT", I exclaimed! "I'M ALLERGIC!!!" On my wrist sat a red band that clearly said ALLERGIES: CEVOFLURAINE. I then proceeded to give him a list of anesthetic agents that I knew to be safe. He tapped me on the knee and said: Okay, Smart guy, put yourself to sleep and quickly left the room. I awoke from the anesthesia on the following Wednesday evening. In addition to the NINE small incisions from various attempts to perform the procedure of removing 18" of my diseased colon through a scope, I also had one 6" cut in my belly that began around my navel and continued to just above my groin. I also began experiencing severe shortness of breath. The staples were ripped out of my skin by the Butcher Surgeon two weeks later, but my breathing difficulties continued. After being examined by one doctor after another, I finally decided to be examined by The Mayo Clinic. Over a ten-day to 2 week period, I was examined by multiple physicians, underwent numerous tests and procedures and was finally ready for my Report Appointment. I would learn the results of all of the tests and procedures and hopefully have a clear diagnosis and prognosis. The verdict had come in. Diagnosis: Terminal COPD (Chronic Obstructive Pulmonary Disease Causation: Bacterial Pneumonia due to Malignant Hyperthermia caused by induction of Detrimental Anesthesia Prognosis: 5% chance of Five-Year Survival I then took my report to a highly regarded Pulmonologist for Follow-Up Care, but not before enrolling in Rabbinical School in New York City. I had, (since age ten) always wanted to be a Rabbi. It was now or never. On the advice of the Pulmonologist, I began taking Prednisone (a Steroid) that would open up my Bronchioles and make it easier to breathe. The normal dosage for a man who is 5'9" and weighs 150 pounds (before I got sick, I weighed 174 pounds, all muscle, by the way) is <100mg per day. My STARTING dose was 100mg THREE TIMES a DAY. the dosage was increased every few months for the following THREE YEARS, when, on Sunday, September 9, 2007, at the weight of 340 Pounds (the Steroids had been increased to 250mg Four Times a day), I collapsed and at Mayo Hospital, was intubated where my organs began failing. Two nights later, on the First Night of Rosh haShana, the Jewish New Year, and while being mechanically ventilated, I went into Full Blown Total System Failure, and suffered a Cardiac Arrest for 14 minutes, followed by a Coma of several weeks duration. During my Coma, I felt as if I was in a box. The box had four dirt walls and smelled like the Morning Dew. In the upper right corner of the box sat a red square with a white X inside of it. "If only I could click on that X, I might stop this program", I thought to myself, but I could not move; I could not stand; could not reach, and could not scream for help. I lay in this place crying out in fear for what seemed like days and weeks and months. Suddenly, my cries were replaced by Psalms. I was reciting Psalms, some of which I had never even read before! And the Psalms turned into Prayers; The Kol Nidre, chanted at the beginning of our Day of Atonement, Yom Kippur; every other prayer recited on this Holy of all Holy Days; the Prayers for the Sukkot Holidays that follow the next week and the Readings for every single Torah Portion of the year. I somehow knew them all. By heart. Without hesitation of memory and obviously without any text to look at. I kept reading and chanting day and night; night and day and resting in between. Really resting. Sleeping... until one day, I opened up my eyes to see my beautiful son Zac sitting at my side on my bed. Covering the holes in my throat and on the side of my neck, I managed to spit out "C'était le rêve de dix minutes le plus étrange que j'aie jamais eu"! I told my son that was the weirdest ten-minute dream that I have ever had in FRENCH, my first language and native tongue. He then told me that it had been over two months, and I was in a Hospice Facility. The night before, I had begun to breathe on my own a minute or so after being disconnected from the machines that had sustained my organs since September. A few days later I was wheeled to an ambulance outside to be transported to the truly amazing HealthSouth Rehabilitation Hospital in Scottsdale. The sun kissed my face as I felt like I was pulled up into a body of love. It spoke. In Hebrew: Don't worry, it said. "You and I are going to be okay". I spent the next six weeks learning to do things like eating and holding a pencil; how to shower and dress. I learned how to return to life. Six weeks after leaving HealthSouth, my dad died. In July 2018, my mom joined him. I have had many trials and tribulations over these last twelve years. A Stroke in 2012 took my ability to project my voice loudly; I've been hospitalized many times and know how very precious time is. I do not live for today, rather, I live for tomorrow. I do everything I can do today to help others, and pray that I am again awakened tomorrow to do more good. And if so, great! And if not; if G-d decides to take me tonight, I will hang out with my parents and loved ones forever. I win either way. President Roosevelt was right to believe in only fearing fear. Psalm 23 is even more so, as Faith follows all of us.
Funny my mom passed in 1991 as a 13 year old it was hard but she was much more then beauty. She was a fighter from the beginning and I will never be able to explain her impact. It shows you came from a strong famiy and I'm glad you had both a mom and dad because a lot of people don't. I pray your truth can make a difference
This is trying to scare us with more misinformation then actual information but thank you for giving us your reality. I like it a lot.and people just wash your hand like you should be doing anyway 😂
Great discussion, as well as some interesting numbers which I'm not sure are meant to calm us, or install even more fear. I have many of your same concerns. Just yesterday I scheduled a work trip to Miami for late next week, but am unsure if it will happen or not. And while i say or act like i'm not concerned, sub-consciously, i am quite sure it is weighing on my mind each time i cough, or sneeze, or feel "a little warm", or if someone around me does. One of the biggest fears i have is that with all of the media coverage and the additional testing becoming available, the numbers are sure to skyrocket, and this is going to really set some people off. Our country is going to go absolutely bonkers . We are all guilty of taking limited amounts of information and either talking about it like an expert, or completely overreacting. Here's hoping that the number stat to level out, and then drop. Lets hope that the American people can follow simple suggestions. Lets hope that countries from around the world can work together to come up with a viable plan to slow this train down. And last but not least, lets hope our politicians can come together to provide our country guidance as we all try to get through this. Lets hope they can forget about the presidential race for just a minute to remember what their job really is; to serve the American people. And now is their time to really step up and lead by example.
Lauren, like you I have to balance my fear and confusion. I work directly with the public and I have an immune system that is partially suppressed as a by product of treatment for Rheumatoid Arthritis. I fear for my Father the most as his body is much weaker than even mine. I visited the Cleveland Museum of Art on Sunday just to learn three people were positively diagnosed on Monday in Cuyahoga county. You aren't alone in that fear. I think that we must turn to hope to keep us in this trying time. We have to...
Terry, As a man who has lived and breathed baseball, your letter was an absolute joy for me to read. What young boy wouldn't want to be in the clubhouse with his Dad? During your time as manager I've been to quite a few games in Cleveland. None though were as special as July 12th 2014. That was the day I celebrated my 30th birthday. Though the day centered around my birthday it saw me doing something for someone else. It was the day I took my Father to the very first professional sports game in his 59 years of life at the time. It was so touching the certificate that he got from the wonderful folks at Guest Services. And although the home team lost to the White Sox that day, it will always remain one of the best days in my heart. Letters like yours only serve to renew my love for the game of baseball. Thanks for sharing it with the little boy still inside of me wanting to throw that 0-2 curveball to the best hitter in the league.
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Sweet Lauren, I agree completely with the promise that Brian asked you to make. Frankly, it is the only way that I know to love; totally, completely, wholly and unconditionally. You deserve nothing less, nor does your future love.
Wow. What a truly moving and powerful story. We often take for granted the small gifts we give each other just by being present. I'm sad for the heartache. I'm glad you stayed and became. Who knows what little girl or boy will be attributing their life's purpose to some kindness you shared. Peace and Sunshine
You’re welcome Lauren looking forward to all the future stories :)
Thank you Tony. I appreciate all your support.
Thank you Tony. I appreciate all your support.
I’m sorry to hear about Brian but he was right you are too beautiful to not receive roses Lauren:)
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Thanks for this! So what movie set did you get on?
So nice Roger <3
Pat, Your letter touched me in a very profound way. It left me in tears in the middle of my work day. It made me want to share something with you. On a July morning in 2007 a police officer answered a 911 call I had made when my Mother went into cardiac arrest. Between that officer, my best friend and the fire fighters who showed up minutes later they were able to restart her heart, however at the hospital she passed away an hour later. At the end of his shift that officer stopped by my home to check on the situation and cried when I told him the unfortunate news I received only 4 hours prior. He tried to apologize to me. I looked at the anguish in his eyes and asked him directly what for? He described the ways he felt sorry. What I want to leave you with was my reply to him. I told him he had nothing to be sorry for because he answered the call in what was the darkest moment in my life. I told him that he was a hero regardless because it takes a special person to answer calls like that. You are a hero to people Pat. No one can ever take that away from you. I understand the process you're going through as I've been there myself and like you I still struggle with it when no one is looking. You aren't alone in this. I hope your healing process continues on and you can regain the happiness in this beautiful life. You'll always be a hero to those people, because you were there when the call came Best wishes Roger Chamberlain
Ruth, your letter moved me to tears. Once upon a time I was very closed off about the LGBT community but over a course of several years, I turned my fear into understanding and I actively stand with the community for their equal rights because it is the right thing to do.