So this is the first edition for
About a year ago I was introduced to an amazing
blog by my old childhood best friend. Everyone meet
Kelle
When I first laid eyes on her blog it was when she put up the entry of her
birthing story for Nella. I was taken back completely at how open and real her story was.
"I held her and cried. Cried and panned the room to meet eyes with anyone that would tell me she didn't have it. I held her and looked at her like she wasn't my baby and tried to take it in. "
I read the story and not a single bone in my body didn't feel like I wasn't there in the room with her, like I wasn't completely relating myself to her story and I've never had the pleasure of giving birth myself.
I found myself wanting to read more and more. Everyday I wanted to hear more about Nella, Kelle and her family.
Danielle is someone who I remember being in the back ground of my childhood. Burning the side of my ear while trying to curl my hair. Making fun of her sister and I playing with barbies when she herself collected porcelain dolls. I even specifically remember a day where I turned on the t.v for her after she begged her sister to do it for her. Her reply was "Thank you Emily, I wish YOU were my sister" and I'll admit, I took a smug comfort in that because I've never had an older sister to look up to.
Time went by, our families moved far from each other and faithfully facebook brought us all together (as it has everyone else) I saw her brother who used to fart in his baseball cuff and sniff it afterwards with a beautiful blonde fiancee. My best friend now a trainer for some spiffy gym in Orlando and Danielle married with a baby on the way! I read the updates up until she gave birth.
and well this is her story..
"We had been trying so its ironic I was still surprised when the digital pregnancy test said “pregnant” on June 10, 2009. That month was hectic and I kept thinking it was no big rush if God didn’t give us our baby just then. But he did! And pregnancy felt like a membership to the cool club... even if I did live off bread and gummy worms with 24 hour nausea for 15 weeks.
I’d never had a healthier relationship with my body, mind and soul as they nourished this miraculous child within me. Life was blissful; I squeezed my belly into 4 bridesmaid dresses for near and dear weddings and absolutely adored bump rubs from everyone. We had many sonograms, including some 3/4D ones and when the sonogram tech said our baby was the cutest she had seen in the womb... I really believed her.
I’ve used the expression “when it rains, it pours” as often as “things come in three” and December 2009 defined this. At 32 weeks pregnant, the clinic where I worked as a speech-language pathologist shut down suddenly. I was laid off and completely unemployable. Just 1 week later on a rainy night in the ER, I held hands with my husband and mother-in-law as my father-in-law passed away suddenly. And one week after that, my OB told me that due to pre-eclampsia, I required bed rest. The cool club was turning on me.
It was decided it was healthiest for mom & baby to induce labor on Feb. 2, 2010 and we arrived to the hospital at 5:30am with a serious case of nerves. Wouldn’t you know, when you try to force a baby to enter the world before she’s ready, sometimes the body doesn’t respond... it was eerie as I was prepped for an emergency c-section, and I honestly still have anxiety when I think of the following moments. The Dr. pulled out our daughter, and all I could see was flaming red hair! Then I waited for her cry which was delayed and it seemed more and more nurses and doctors were working with her while my OB gave me the generic “they’re doing their job & you just need to stay calm”. Then Kinley cried. The nurses went to leave with her as the Ob yelled for them to show her to “mom” and I got that one kiss I had waited 10 months for.
There are research- based papers written on the best ways to for a physician to relay a diagnosis of Down syndrome to parents. My husband & I have shared that in many ways we’re not sure HOW we found out would have changed anything. I do believe my OB did the best she could in the moment she was in, but I also feel having my husband by my side would have been better. In post-op, just a thin curtain between another mother healing from her recent c-section, and with my mother at my side I heard these words: “I’ve spoken with the NICU and they think your daughter has Down syndrome. They are concerned she has a heart defect and a cardiologist is speaking with your husband.” My OB was in tears.
Racing thoughts... we did the quad-screen blood test, had multiple sonograms and for the love of GOD I even saw her face and we missed this? “How did we miss this?” was all I repeated. And it bothered me that I had to somehow process this news while I couldn’t even feel my legs. While next to some woman who got exactly what she expected and was celebrating with her husband.
Non-fluid rambling...
I felt betrayed by God- hadn’t we been through enough?
I felt fouled by science. I was 27. My odds were 1 in 1390... the highest the geneticist had ever seen with a false negative.
I felt shocked, but NEVER ashamed.
And after fighting for my right as a mother to see her daughter, I was rolled into the NICU on a stretcher to meet my daughter... Kinley Brynn Edwards. I was pretty sure the Valium I needed was kicking in as every nurse in the NICU had a shiny crown on. With a super bright smile, our first NICU nurse congratulated us on our baby girl and said “its even Tiara Tuesday!”
Oh and to behold that perfect child! The Dr.s did the official business of pointing out the physical markers of Down syndrome, but I kept thinking “well, my siblings and I all have tiny noses” and “my dad has a line like that on his palm”... not in denial, but more like these “soft signs” are also just ways she looks like my girl.
Because she is my girl. That is all that kept me breathing during that week in the hospital. Kinley kept the trend of surprising everyone- her heart was healthy, she got off her oxygen in less than 48 hours, breastfed like a champ and went home in half the time they expected.
I know now I mourned the loss of a child I thought I was having... the sadness had scary depths and without love, support and prayers from friends and family, I would continue to be ill-equipped. After years and years of reading self-help books, practicing yoga, and using homeopathic remedies, it took Kinley to truly learn to live in the moment. Many mothers have made similar comments to me. And those moments are FABULOUS!!!!
I do have to make an effort daily to put fears aside and not get caught in the “what ifs” (every mother does), but one glance at Kinley can bring me back to reality... and this is reality:
-We had all the chance in the world to NOT get our Kinley... but thank God we did.
-I have been in training to be Kinley’s mom since my first volunteering moment with the special Olympics at age 5, all the way through grad school and working as (pediatric) speech language pathologist.
-Perhaps it was better not to know about Kinley’s diagnosis while pregnant- it gave me less time to stress over things I cannot control. Also, a prenatal diagnosis would not have changed our decision to have a child. It pains me to think when Kinley was born, she was just 1 out of 10 babies with Down syndrome who was given the opportunity to LIVE. Currently, 7 out of 10 babies with Down syndrome are terminated.
-Kinley’s parents are supreme advocates for all children with special needs. Full disclosure: I have said many times (prior to becoming a mommy) that I have less patience for “typical” kiddos and I have also said I could never deal with having a child with special needs after seeing all the families I work with go through so much. Guess I didn’t give myself enough credit!
-Kinley has a busy life. She works her tail off in physical, occupational and speech therapy as well as “school” time with Grandma. She also goes to Gymboree and we aim to keep life well balanced for her. She has many friends, some with Down syndrome, most without. She loves people regardless of their abilities or disabilities. She is much more like her peers than different.
- At 11 months, Kinley is a shining star. Down syndrome is just one of many things about her. She hams it up for the camera, loves manicures, prefers to drink water out of a wine glass vs. sippy cup, can point to pictures in a story, says hi daddy, signs milk, attempts puzzles and gets invited to play dates weekly. She has also helped raise over $5,000 for groups that support individuals with special needs. With her 47 chromosomes, I like to think there is even more love in her than most and I thank God daily for trusting us with her."
Danielle would also like for people to use “People First” language; it’s not “an autistic boy” but “a boy with autism” or “a downs kid” but “a kid with Down syndrome”... we each have several facets to our individuality and defining anyone by their diagnosis isn’t kind nor fair. Also, the term “mental retardation” is no longer used, “Intellectual disability” has replaced this out-dated word. It is also socially unconscionable to use the slang “retarded”. Please see the following and spread the word to end the word:
Advice for mommies- be kind to yourself as you journey through hormones, sleep-less nights and minimal showers. Ask for and accept help. Trust your instincts!
I like the following websites for information on Down syndrome...
When ever someone asks "Who is your role model" I always flash back to high school in my nursing class with the best teacher in the world. Mrs. Kyle Smith. The only way I can describe her is what I imagine God was adding to create her...
1. Heart the size of a grand hotel.
2. Attitude like chuck Norris.
3. All soft and squishy inside.
4. Unstoppable force like superman.
5. Eyes in the shape of hearts.
6. Leaves foot prints where ever she goes.
7. Chief of chefs...
Every day was story telling time. She had a story for everything. Everything good and everything bad. One of the ones I remember most was how she met JoEllen.
I'll just let the storyteller at it...
"My name is Kyle Smith- I am an RN who after completing a community nursing project at the University of Miami realized if I recognized a need in the community and did nothing about it- I would become another part of the problem. I went to 2 other nurse, a respiratory therapist and a business woman who were like minded. We started a not for profit organization called PATCHES. We care for the weakest, sickest and most vulnerable children in South Florida. Our center provides nursing care 12 hour a day for children with extraordinary medical needs. In addition to nursing we offer respiratory therapy, occupational therapy, physical therapy and speech therapy. We believe in the whole child concept so we also provide educational and enrichment daily. I like to refer to our organization as the "Wal-Mart" of health care for special needs children.
Long before PATCHES was started I was a nurse in a hospital in NY. We had a baby(Sharon) in our ICU that had been born in a toilet. Her medical needs were many! After 3 months of working with her parents it became evident this child could not return home. Both mother and father were severely limited and unable to count out the 15 drops of phenobarbital she needed to control her seizures. To make a very long story short- My husband and I took that baby home- eventually adopted her and her natural sister. Both girls had extremely complex conditions, required apnea monitoring, both had severe seizure disorders and a familial genetic disorder similar to Huntington's Chorea.
At age 14- Sharon was tragically called to heaven. She suffered a seizure while swimming and we were unable to save her. The younger sister (JoEllen) is alive and well and lives with me in Homestead
The obstacles that children with special medical needs face are as varied as their conditions. My youngest daughter doesn't "look" the part so people expect more from her than she can produce. Being her "voice"(and the voice of all the special needs children we care for) is the most challenging fete for most parents. Years ago these children didn't live and if they did -were most commonly institutionalized.
As these children mature to adulthood- we have a society that is ill-prepared to care for them. Parents are often faced with caring for these young adults alone- When they were young there were services to help with their growth and development but once they reach their 22nd birthday- all support services through the school districts stop- parents now must make some very tough decisions. I've agonized with many a parent who either must quit their jobs to care for their child or put them in a nursing home.
I find most adult practice doctors are clue-less when it comes to meeting the medical needs of special needs child- It was a horrible transition from my pediatrician to an internist
My advise for any parent of a special child is to always be their voice-Don't take no for an answer. God gives us an innate sense about that child and from experience I know to follow it- If your physician isn't listening to you- go somewhere else- Don't stop!!!
Love your child unconditionally! Only us mother of special needs children truly understand HOW BLESSED we are to have these little people in our lives.
I was given a poem when my youngest son was born- He had clubbed feet and severe respiratory problems at birth- I remember it to this day..
God gave this child to you to guide
to love- to walk through life beside
God picked you out because he knew- How safe this special child would be with you...
God bless you in your miraculous journey
Kyle Smith RN, BSN"
If you would like some more information on P.A.T.C.H.E.S you can visit their website at
So today's Sunday special is dedicated to the many amazing mothers out there just like Kyle, Danielle and Kelle and to help spread the word for these lovely people I urge your to visit
P.A.T.C.H.E.S and
Nellas ONEder Fund and if you can please donate to both organizations
Special thanks to everyone who helped me post this blog today. You are all such an inspiration to me.
.
