I Am Who I Am
"Beginnings...Well, in my case it was an emergency C-section, about 6 weeks too soon. We knew the baby had a heart issue, and a 30% chance of DS. I was in for monitoring because my blood pressure was too high and I was swelling up. After an amneocentisis the Doctors decided that the lungs were developed enough to deliver. Later that day, with nothing ready at home, a party planned for my son's birthday just 3 days away I was wheeled into the delivery room and joined by my nervous husband. We were scared for our baby, who we knew would be facing open heart surgery to repair an AV canal defect. After the delivery I got a quick flash of a baby girl and then the room was quiet. No baby cried, the team of Drs just worked on and she took so long to cry. It felt like forever. Finally someone brought her over to my side so I could see her and told me her eyes were slanted so they thought she had Down Syndrome. I said for them to tell me something else because my eyes look like that. It's a family trait. They said there were other markers, I gave my beautiful baby a kiss and they rushed her to the NICU. In recovery, I was clearly upset, the nurse told me I had a 'beautiful, Healthy baby.' I snapped. If she had left it at beautiful I would have agreed! For Violet was the most beautiful baby I had ever seen. But when my baby was rushed to the NICU, it wasn't because she was healthy. My stay in the hospital was sad. I was isolated. The staff did not know what to say to me, so really they didn't say anything. All they did was send in the chaplain. Several times. If they had just said they understood, it was scary, we as parents were overwhelmed, and were given a baby we were not quite expecting. If they had taken a few moments to point out just how beautiful, and to reassure us that even though she had hurdles to overcome that we her parents were strong enough to help her. That would have helped. I know it now, but back then, whew was I a wreck!"
Our amazing little boy, Chase, is now 8 1/2 years old. He has Down Syndrome, but that doesn't define him. He is a handsome, loving, intelligent, dramatic, musical, ornery, wonderful son, brother, grandson, uncle and friend. Chase was a huge surprise to us as doctors told us I couldn't have any more children. He was born very prematurely at 33 weeks, but had stopped growing at 29 weeks--after my x threatened to run over me with his SUV. (He's rich so he got away with it!) After going to the hospital to be checked out; the doctors decided I needed an emergency C-section. Chase was born 15" long and 2#15oz, but after 2 collapsed lungs he went down to 2#. It took many doctors to get him to the point 44 days later to even come home at 5#. I was home with him 13 days and I had to go back to work as the headmistress at the Independent School where I worked, refused to allow me to stay home even for another week, even though teachers always work for free in Aug. (Our pay was from Sept. to Aug. so I'd already worked for that $) My husband/Chase's Dad had to learn to take care of a tiny, sick baby who had to eat every 2 hours. Chase had to be taught to suck, swallow and breathe. It took almost an hour to feed him 38cc of breast milk mixed with formula and medications. We were also taking care of my Mother-in-law who was ill with COPD and lung cancer. We rarely went anywhere as we couldn't risk him getting any kind of illness. Therapists came to the home as did nurses to make sure he was gaining weight and to give him his injections. Chase was finally getting bigger and was able to go to Rainbows at age 2. There were times when he had trouble with his O2 levels and we had to take him to the ER. All told this little boy has had 10 surgeries--the last one being open heart surgery right before his 5th birthday. He has been through so much and always perseveres. He was up and about 3 days after the surgery and we came home on the 4th day! He works so hard to do what everyone else does naturally and is so proud of himself. If he works that hard, how can we do anything less? Our son knows all of his letters and sounds and is reading pre-primer books! He sings lots of songs and even makes up some of his own! How many children do that? He is very imaginative and expressive and we wouldn't change him. He has a laugh that is contagious and gives the sweetest hugs and kisses ever! He is very polite and says "Thank you!" whenever he is given anything. We are blessed to be his parents and will do what we can to make his life meaningful. We wish everyone felt that way. We have had great people helping us as well as those who should never be around special needs children. We finally got the SCDDO to accept him on the roster/waiting list. We still just try to do everything on our own. So far we've been doing ok juggling all of the doctors and/or specialists/therapists. We have doctors here in Wichita as well as at Children's Mercy in Kansas City. We do wish we could afford to move to a place where he could get a better education. We liked his teacher last year, but are unsure about the current placement and what will happen this year or in the years to come. We worry about moving schools and who will be his teacher(s) and if they will believe in him, encourage him, guide him to be his best. We have support with our local DS group and our family and friends, esp. "Auntie N", his 2nd grade teacher, Mrs. Kelly (Isley) as well as our family doctor, Jed Holmes and his PA, Charlene Bui. Summer 2012 we started running on the track at the local YMCA and we found that Chase LOVES it! From the 1st of June until today—March 20, 2013 (exactly 9 months!) we’ve run 160 miles! We’ve signed up for Special Olympics and are waiting to meet our team. He actually “ran” the Buddy Walk this year and crossed the finish line laughing and kept right on going! “HE CAN DO IT!” just like the song I wrote for him to sing! Our son is amazing and we love him and are very proud of him and just want him to be the best he can be and to enjoy the life God has given him and given us. This is the greatest blessing and we are amazed every day that we were chosen to be his parents! (Chase has 3 adult brothers, one sister-in-law, 2 nephews as well as grandparents, aunts, uncles and cousins. One cousin, Ryan, also has DS)
My Story - By Holly Simon
November 26th, 2002
I have told "my" story hundreds of times.
It has been published and talked about.
The entire story though, has been kept deep inside my ultra crazy mind.
Not certain what the world needs to hear-or wants to hear for that matter.
We all have a story.
One that can beat the next.
One tear that stings worse than another.
A memory so vivid in a technicolor dimension that is too bright at times to surface.
Some have a pain.
A jagged edge buried deep into their flesh.
Stinging like an open wound when the memory is provoked.
I have my story and I think it's time to set it free.
I can no longer carry it alone.
I shall set it free like the caged doves at the wedding of your dreams.It was my 5th pregnancy. (6th to be truthful, 4th month miscarriage)
Praying for that girl - Mackenzie Rae.
She was my surprise.
I was 'older' 37 to be exact.
A 'high risk' pregnancy they labeled me.
Never gave it much thought.
Never cared for labels.
Dismissed in my many scattered daily thoughts.
Many ultra sounds ahead of my months.
Fantastic 3-D pictures of my little girl.
Who was I kidding.
I saw the boy, no denying...My 4th son.
My pregnancy seemed to last a lifetime.
Growing larger than skin should bear, I was gigantic.
I had a feeling.
I kept it to myself for a long time.
Something felt different.
Something felt wrong.
I told my girlfriend.
I told her many times.
She smiled. She listened and smiled my worries away.
I made it.
No worries or concerns.
But alas, my son was breech.
I had never had a C-section before.
I was nervous.
No time for recovery when there are 4 little kids at home."Not gonna happen," at least that's what my husband said. Dan went on the Internet to search for ways to turn a breech baby. I wish this was all a made up little joke in my head, but I actually allowed Dan to put a bag of frozen peas on my unborn son head....Hoping the aggravation would make the 10 lb. baby turn right side up in a womb of no room. A Chinese herb was to be burned near my left toe...I was intrigued until Dan moved suddenly to the televisions football game's touchdown, burning my little digit. But; before the Chinese herb nonsense, I had a procedure called a "version".
Picture yourself laying on you back, while 2 adults stood above your mountainous belly. All in unison they push with all their might the outside of the babies unborn body. The only shield was my taut, aching skin.The pain was unmeasurable. Tears flowed onto my cheeks like Niagara Falls.
It didn't work. He was too big and too stuck into position. My C-section was scheduled for November 26th. The doctors had one more alternative. No one wanted me to be laid up. Dishes, laundry, cooking needed to get done. The doctors said that since I had delivered 4 babies vaginally (sorry), it was possible to deliver the breech baby normally as long as I would take the consequences. This is yet again not a joke. I was to make the choice.
Are you frigging kidding me?
The fear weighed on my mind like a knife stuck in my eye.The choice of injuring my son or not was solely up to me? Cut me the frick up. No gambling here. You have truly got to be kidding me.
November 26th, 2002..
Prepping for my first C-section.
Ready? Get set...One last ultra sound.
Wanna check placement. Holly gets one more chance to decide what to do...Risk the head getting stuck?
CUT ME OPEN.
The doctor waves around the cold jelly on my abdomen. Silence. A gasp. MY SON had turned. WTF. Somewhere, sometime he got up, packed his bags and moved. Jubilation filled the room.
Chinese medicine miracle. Or so they thought and they believed. The med students poured in to take notes. The janitor high fived me. The party was intense and I was so proud of my little boy. One, two, three pushes. Damn she almost dropped him as he made his way into the universe with vengeance. Silence.
Time stood still.T
he room began to spin."Cry dammit, cry!!!!!!!!!!!!!!!!!!!"
Darkness fell upon my room. I began to panic.
Dans gentle voice whispered in my ear,"I think our son has Down Syndrome".
I went into shock. Fear of the unknown consumed my every cell.
A hush in the room surrounded me.
The silence stood still.
No more jubilation.
No more high fives.
No eye contact.
I'm sorry. Oh my God, my son must be dying. Is he dead? I demanded? Is he going to live?
Moments felt like hours. I was scared to hold him. I am ashamed.They were sorry.
He must be a fright. There must be a mutation. Fear consumed me as the silence grew deafening. He must be a monster. Why else would they say they were sorry?
I held my little boy Nathaniel; "A gift from God."
He was perfect.
10 fingers, 10 toes. My journey begins. He smelled like my son. The softness of his delicate, peach covered face was as gentle as a miracle. His lips were drawn by Picasso. His fingers were the beginning to great writings, His toes were the beginning to his amazing life. I remember with clarity."I will never let you go, I will protect you from everything and everyone in harms way, I will be your everything. No one will ever hurt you, I love you my son.I love you. "I don't know how the lioness knows. But she does. Instinct. He was rushed away. It was different. It was cold,frightening and bleak.
Dan and I cried rivers.
Not ever certain why we cried. I suppose we were invited into the mourning. The following day, I went down to visit Nathaniel in the NICU. My doctor happened to be on the elevator.
"I'm sorry Holly, I wish there was something I could have done.
"HUH?What the *%#*?
Nathaniel was not injured, not an accident..I didn't do anything wrong neither did you...Or did I? Did I eat something wrong? Bump my belly too hard? I can go on for days. But no one had any answers. No one looked at me. In the first few days I learned that Nate was "different."
"Slower, delayed, maybe won't ever talk, maybe won't walk, may never eat by mouth...."
"He can always be a bagger at Jewel".
"God only gives you what you can handle".
How I desperately wanted to be talked to like a new mom. A mom that just delivered a baby. A beautiful gift from God. We still cried.
The tubes, the feedings the fears were consuming. It was all we could do just to breathe.
No one smiled at me...Can you imagine?
I was that Mom in room 414, enter with caution...Until my Mom walked in.
Dan and I were holding Nathaniel. Crying. My Mom asked "Why are you crying?"
"Because our son has Down Syndrome Mom."
"So WHAT", she said tenderly yet strong."He is alive isn't he?"
Indeed, he was alive. And I would do whatever I could to make that life spectacular. I surely did get my gift that day. An endless gift of learning, accepting, challenges, fears, doctors, teachers, understanding, crying, and awareness.
But one thing I have always had.
This is a tough ride. You cant just hop off when you want to.
Sleepless nights, anxiety, fears....still consume my soul.
But one thing that remains louder than the rest?
MY son was born on November 26th 2002.
Nathaniel Joseph Simon. The love of my life. The love of many lives. He is here.
Teaching others how to love. With a smile, a hug a warm hello.
That's my son. 'He never became what the doctors thought he would be.
He became Nate. Nate the Great. A teacher among lost souls. Spreading humor around every corner.
When we were in the middle of our private hell, people would always ask me "How do I do it? How can I always have a smile on my face?"
I often wondered what my alternative would be. To hide, to run, to set the bar low and accept the sadness?
No way Jose.
I'm a big girl and I put my big girl panties on a long time ago.
He is NOT a number.
He is NOT Down Syndrome.
He is NOT retarded.
He is NOT different.
He is NOT to be laughed at.
He is NOT to be made fun of.
He is NOT to be ashamed of.
He is NOT to be thought less than.
He is NOT to be ignored.
He is NOT to be forgotten.
He is Nate.
I thank God for November 26th 2002.
I wish you all could have a day like mine. So now you all understand. Why I fight this fight. Do the things I do, dare to demand a difference. I should have celebrated my magical little boy. Instead I was invited into the darkness. I did not chose to go there. I was robbed of Nate's celebration.
Who became the judge and jury?
Lets all accept.
We all have a story.
This should have been my choice.
Let us finally live in a land of harmony.
For all children.
The pink, the polka dots and the bent.
Love each other with vengeance.
Until that day I will continue to educate and bring the joy back into the delivery room.Its our own decision how to handle the deck God hand
Please do not say your sorry.
There is absolutely nothing to be sorry about!
"Sometimes the smallest things take up the most room in your heart."~Winnie the Pooh
Whether it was a meal, a gift, a card, a donation, a hug or a prayer, it meant more to us than you will ever know. Thank you for your kindness...and for joining us on Lulu's journey. Which was brief, but will be everlasting memories.
Dear Holly, This summer, we welcomed our daughter, Elizabeth Marie at Little company of Mary Hospital. "Lulu", as her siblings nicknamed her, had Trisomy 13, which caused her to have muktiple incurable congenital defects. During our 2 week stay at Little Company, we received your beautiful "I am who I am" blanket- and we were so touched.
Lulu is no longer with us, but that blanket will remind us of the precious time we had with our baby girl!"
(there are moments in my life that I am rendered speechless. The gift that this mom gave to me is priceless. God bless all of our special moms, dads and children. This is not an easy road. But it is certainly worth it. Holly)
"After reading you blog today, I decided that I wanted to extend my own gratitude. Being a part of Saturday's event was an awesome experience. I feel so fortunate to have been able to help in even the smallest of ways. Throughout the evening, I heard countless stories of what you, Nate and the I Am Who I Am foundation have done for others others. It was heart warming to know that just one person with one idea could do so much. Like I said, I read your blog weekly and it never ceases to bring a tear to my eye. Hearing your story of trial and tribulations, but most importantly celebrations is amazing to say the least. It's moms like you and children like Nate (and his great friends) that remind me why I want to become a special education teacher. Keep doing what you're doing because it's inspirational."
"I want you to know I am very thankful and blessed to have met you! In five years since my daughter was born, you were the first person to ever acknowledge my feelings regarding my daughters birth. There was NO celebration and I know YOU understand. Now I celebrate every day."
"When our son Sean was born, we did not know he had Down syndrome. It was very confusing at the hospital and we did not get a clear diagnosis but we knew their was a chance he may have Down syndrome. We were scared, fearful and felt alone. The pediatrician told me that the reason my son was born with Down syndrome was because of the "mother's maternal age". No one at the hospital talked to us about Down syndrome. We left the hospital on Christmas day, 2011 with no resources, no Down syndrome support. As a mother, I felt this was my fault and was concerned how this affected my family's life. I was ashamed.
We eventually received confirmation of Sean's diagnosis and began to reach out for support. There are so many great people in the Down syndrome/special needs community. That is all I wanted those first days in the hospital and weeks after, was to know that their were people out there and that everything will be OK. Those first few days in the hospital are so crucial and set the stage for a family's journey. Life will change but what family does not change with a new addition?
It's only 10 months later and we could not be happier with our Sean! We appreciate every milestone he hits, no matter how little - it is celebrated as it's so much more work for him. He is a great addition and brings big smiles, laughs, big big love and heart!! We can't get enough of kissing and squeezing his cheeks."
"I just had to share this with you! We had a patient recently, 39 yr old female with down syndrome, that we had to do a procedure on. She came down without any family with her and only a small bag containing all her personal items. My co-workers brought her down before I even came in to work and when I arrived, I saw her sitting there waiting to go back to her room. My co-workers were complaining about how combative she was and how she wouldn't listen and they weren't able to do the test. Later in the day, the Dr. insisted we try the study again and I was alone at the time and agreed to try. Once again, I heard from other workers in the hospital how combative and unruly this patient was. When she came down to the department and I spoke to her like I would any other patient, she was completely receptive to me and let me try the test. Unfortunately, she had pulled out her own IV so I wasn't able to do the test that day but I tried again the next day and once again, speaking to her like an adult, she was cooperative. What I find sad in this whole situation is my co-workers approach to things. You were right-she was treated like a puppy and not explained anything that was going to happen. She was scared, not unruly! This was another eye-opening experience and I just wanted to thank you once again for letting me be part of this wonderful journey to get awareness out there!"
"I just wanted to take a minute to say thank you. Leigh's Mother's Day was a little more special because of her new friendship with you. She sees the special relationship you have with Nate and she dreams of what will be in 9 years. She was a great mom before, but she will be even greater for having met you. God Bless and Happy Mother's Day."
"You want to know what to tell that mom? Tell her that six months ago I cried on my mom's shoulder for the first time in 25 years while I said, "I'll love him no matter what, but I just want him to be normal." Tonight I spent an hour tickling him and laughing with him, being the dad I didn't have time to be with the twins. It was as normal as my life has ever been."
"Hi Holly! I have been meaning to write you. I am just starting to get a hang of things around here after the surgery. so i am just catching up now. i love what you wrote in your blog about us. I have read it several times and it gets me every time. It has been such a blessing meeting you and Margie. Your excitement, energy and involvement with your kids is so uplifting and contagious. I am excited for the path ahead of me and my family and where these shoes will take us."
My name is Maureen Brennan and I am a social worker at Advocate Hope Children's Hospital in Oak Lawn, IL. I have had the pleasure of meeting countless families who have a brand new baby born with Down Syndrome. I offer words of hope, encouragement, support -- and now I have these beautiful I Am Who I Am blankets to welcome these beautiful babies to the world. To wrap these babies in love and blessings. To let these babies and families know there is a community of people ready to embrace them, walk with them, support them. These blankets bring smiles, hope, friendship -- and are the beginning of a lifetime of love, happiness, and endless opportunities. I can think of know better way to welcome these beautiful children into the world."
I Am Who I Am - Get To Know ME!