Tag: Down Syndrome

Bluebirds

Published on by Kristen McGinnis1 Comment
Bluebird-a symbol of hope and joy

Noah was growing and hitting milestones that typical two year olds master. He was walking and getting into trouble. His speech was of course delayed. He had a few words, mom, dad, sis, bro, that, yes and of course no! We had started using sign language early to aid him in expressing his wants and ideas. We would have a sign language instructor come into our home every Wednesday evening to teach us how to communicate with our boy. What is really amazing about this memory is that even my step father would come to the lessons and learn this new language so he could interact with Noah. Week after week we would get out our book and practice signs. We would quiz each other and sometimes use only signs throughout our homeschool day. Joe will still catch my eye even a decade later and sign something to me . Zoe uses this skill with her babies as they develop their language skills. God has never wasted one lesson we have learned on our adventure with Noah. He has brought deaf friends in and out of our lives. Thinking about them brings a smile, knowing spoken language wasn’t a barrier to our love for them.

It seemed every time the seasons changed Noah’s breathing would become compromised and a quick stint in the hospital was the only thing that would cure it. We were on a first name basis with the nurses, they even started ordering Noah special toys and videos. The older kids adapted and would take turns spending the night with Noah and I in the hospital, while Joe and Mom held down the fort at home.

One year though it wasn’t routine. I took Noah to the pediatrician and as the pulsox kept dropping, we were told to go immediately to the Emergency Room. Thinking this was just another one of our bi-yearly stays, I wasn’t hysterical. We got admitted and went to our usual floor. The nurses greeted us, and took Noah to get the IV inserted. As any parent of a young child knows, this is torture! I hated watching them put him in a papoose and stick him repeatedly. I usually delegated this task to Joe, but on this occasion it was just me. After numerous failed attempts, Noah, the nurses and I were all crying. No one could get a viable vein to hold the stick. They finally took us back to the room and cautiously advised us to try to keep Noah hydrated.

The breathing treatments began in earnest and every four hours the respiratory nurse would comes in and administer the nebulizer, chest poundings and suctioning. This went on for days. Our normal stay was 2/3 days. By day four Noah was restless, bored and still not better. Friends dropped off drinks, food, prayer and clean underwear! Zoe, Marley and Malia were shuttled to swim practices, and co-ops. Their world limped along while my life with Noah in the hospital stood still. I kept asking what we could do to improve Noah’s breathing, the doctor had tried steroids,increased breathing treatments, antibiotics…but Noah’s health was declining.

Finally on day seven, we were at our wits end! We decided we were going to have a meeting with the pediatrician. We were losing patience and disheartened by the lack of improvement with our baby’s health. We agreed that Noah would get transferred to A.I. DuPont. Talk of whether he would go by ambulance or helicopter ensued. As the nurses and doctors started putting arrangements into place, the severity of the situation became apparent.

A decision was made to take Noah by ambulance. We loaded up, I was in the front seat by the driver, a doctor was alongside Noah in the back with an oxygen mask, and a stern face. Mom followed behind, driving a zillion miles an hour trying to keep up!

Joe came home from work and rushed up to A.I. Wanda and Carol took the three older kids for the foreseeable future. They admitted Noah onto the respiratory floor. They again tried to get an IV into Noah since it had been seven days without one. This again was met with cries that ripped my heart out. Mom, Joe and I held hands, bent our heads and prayed that they could find a vein and his pain would stop….it didn’t happen. They made him as comfortable as they could. It was after midnight and everyone was running on fumes. We decided that Joe and Mom would go to my Uncle’s house near the hospital and get some sleep and return in the morning.

I would not leave Noah’s side. Around two o’clock in the morning alarms started going off! Immediately I was pushed aside and a small army of doctors and nurses started working on him. Lung…collapse…ICU…I overheard snippets of talk between the professionals. They looked at me and told me they were moving him to intensive care, his lungs were in danger of collapsing. What? We were just at Kent General. We were supposed to come up here and things would be ok. Is he going to die? No one would answer me. In fact, it was as if I was not even there. I tried to call Joe, nothing…Mom, no answer as well. I was alone and my baby was going to die. I could not breathe. I was frozen with fear. Help my baby, Lord, help!

They whisked Noah down into the intensive care unit where specialists were waiting for him. The first thing they did was insert a central venous catheter into his collar bone. The doctor told me that Noah’s lungs were filling up like a balloon but he could not exhale the air, so if they did not intervene his lungs would collapse. Nothing in this world is worse than coming face to face with your child possibly dying. Then to have to do it alone. My knees were shaking, no one asked my permission, they were doing anything and everything they could to keep our Noah alive. Even writing this years later, my heart races, I have a lump in my throat. Fight or flight is engaged.

They hooked Noah up to a bipap machine that would breathe for him for the next week. He would not be able to eat, drink or talk for the days he was attached to it. Mom and Joe found me downstairs the next morning…I had lived a thousand lives at this point. They stared incredulously at Noah,, who was ‘fine’ when they had left less than a few hours ago. No one would say the obvious, but we all thought it, if they had not transferred Noah yesterday, he would have died. Kent General is a county hospital, they were not capable of handling such complex medical issues. God’s providence in Mom demanding he be transferred saved his life.

When Mom saw Noah, she had an emotional breakdown. This had been going on too many days. She went to the doctor and asked for a Xanax! What she was offered was a coffee and danish.

Our pastor, friends, the kids, family all came to visit. The Berries left a thousand dollars in cash on the threshold of our front door so that Joe could take off work and not worry about finances. I slept either by Noah’s bedside or up in the Ronald McDonald room. Time was meaningless, the outside world no longer existed. It was just endless hours and days of the machine breathing for Noah.

After a week in A.I. (two weeks total) Stacey came for a visit. She asked me how I was really doing? What comes out of my mouth, still holds true to what I believe today….”I wake up each day, believing, truly believing he is going to get better. The bluebirds will sing, the sun will shine. Just like that scene in Cinderella. The one where she is doing endless chores but the birds surround her with their melody and the darkness isn’t so dark anymore.” We were walking around the children’s floor, each corridor had a name, we were turning onto Bluebird Court as I answered her question. Serendipitous?

Noah eventually got released and when we came home that night, the sweetest gift awaited us. The Berries had started a fire in our fireplace, turned on the lights, lit candles and had food waiting. It was like the warmest hug from our Heavenly Father. It was still touch and go those first few days home. Noah was so weak, he kept running a fever and every little cough would send us all into a frenzy.

That Christmas Stacey had given me a little bluebird tchotchke that I still have today. I still pick up every feather I pass. I gave a dove feather to my sister-in-law when her father died. My granddaughters get them in the mail, and I have received dozens of feathers from Joe. I named the blue heron who shows up at our pond each morning, Scout. The call of the geese flying overhead soothes my soul. No matter how hard my journey has been, He has never forgotten me or our family. His faithfulness surrounds me and sustains me. Tender Mercies.

The Plan

Published on by Kristen McGinnis3 Comments
The original blueprint of the ‘plan’

As Noah got older and stronger his imagination grew too! He was constantly exploring with his preschool buddies. They would make forts in the woods and zip line to the ground. I know of three such hideaways on the property, but there could be a dozen more. A rusty chandelier would suddenly disappear, as would a plastic chair, cutlery and of course food. He and his best friend Ezra would create real life Minecraft structures with wood, bricks, shovels and pickaxes.

One day all the older kids had plans. Zoe and Malia were at swim practice and Marley was at the golf course. it would be a perfect time to take a hot bath and relax. I set Noah up with Backyardigan’s, a snack and a drink. I told him I’d leave the bathroom door cracked and to come get me if he needed me.

Things were peaceful…quiet…too quiet? Noah? In he strolled with a satisfied look on his face. He stood beside the bubble filled tub and started smoothing my hair back. “Are you o.k.?” I asked. He told me he was very sorry, that he loved me and would see me soon. Then he turned and walked out, back to his show. Hmmmmmm, not good, not good at all. I quickly dried myself off and got dressed. I peeked around the corner of my door, Noah was happily eating his popcorn laughing at his show.

I guess I was being paranoid. I walked into the kitchen and slipped on …oil? There was a whole bottle of cooking oil poured all over the floor! String, what? There was string tied around the legs of the chairs criss crossed over the walkway. Forks, this is really crazy! On the other side of the string lay a dozen forks with their tines pointed upwards. What in the world?

Nooooaaaahhhhh!! What is going on? In comes my little towhead with a mischievous smile on his face. “You fell into my plan,” he said. “Plan, what plan?” I asked. He then brought a rudimentary drawing out and showed me how I was supposed to slip on the oil, hit the string and land on the forks! Are you kidding me? I was in the bath for ten minutes! How in the world was this little booger able to draw his plans, execute them and come in and console me for what was about to happen all in ten minutes!?

Right at that moment my friend Wanda called. I told her exactly what happened and what I was looking at. Her reply,…”I don’t know whether to be thrilled or very, very worried!”

For weeks our kitchen floor had a sheen that would not go away. Noah’s master plan was retold far and wide. For weeks I slept with one eye opened wondering if I’d get my little angel or the devil in disguise?

Lightning in a Bottle

Published on by Kristen McGinnis5 Comments

Having a child with a disability will bring out the very best and reveal the worst in you. They say that necessity is the mother of invention, I know this to be true. My fear of Noah being alone or left out, FOMOFYC, fear of missing out for your child, is real! Having a diagnosis of Down Syndrome is an odd thing, everyone would come to anything and everything I planned and hosted but invitations were few and far between.

Since my mom and I are both teachers by trade, I proposed to her the idea of creating a schoolhouse for Noah. A place where we could gather his friends once a week and offer companionship, learning and exploration. My mom, Cathy, is the quintessential decorator. When she was young, she would decorate anything and everything that crossed her path. One of my favorite stories is when she was younger, she would go down into the storm drains, where the water would run off the roads and adorn the space! She lived in a borough of Newark named Brookside.To this day, she/we run a staging company named Brookside Inc where we go into people’s homes and stage them so they can put them on the market. Just this week, I was redoing my dining room, and couldn’t make a piece fit, my text to Mom…Brookside#911….and immediately she appears ready to put her talents to use.

With that being said, Mom was all in when she realized that she would get to turn our unused migrant home into a play space. It combined her two loves, children and sewer decorating! ❤️ We painted the walls a sea foam green color and put big colored circles on the wall. Joe ( my handyman) installed a toilet donated by Stacey, whose son Derek was one of our students. Carol brought brightly colored fabric in pastels that we swagged from the ceiling. We painted the floor and added more circles. The doors were painted with chalkboard paint so the kids could draw on the walls. Easels were bought, bins were filled with puppets and crayons. Mom purchased smocks for each of the students with the Daylilly emblem stitched on them. It was a true labor of love.

Since Noah and his friends varied in ages from 3-6 the first year, with Noah being the youngest, I knew I wanted to minimize the gap in learning abilities as much as possible. The best way to do that was through song, rhyme and play. We would start each co-op with show and tell. Each student would bring in a possession and explain why the object was important to them. It incorporated so many learning domains: language, sharing, ingenuity, turn taking. Mom and I were included in this exercise so we could model all of these traits for our young explorers. Most children with Down Syndrome have issues with speech. Hypotonia and differences in the structure of mouths and tongue are a big reason why. When Noah would share his ideas and interact, all his friends quickly developed an understanding of his speech.

We would then work on language skills by introducing nursery rhymes. The cadence and tempo of these century old verses have proven reliable in helping children with memorization, singing and pronunciation . The kids would then pair up and perform a retelling of the rhyme their own way. The only caveat was that they had to work together and share the stage equally. Derek, Stacey’s son was the oldest of our students. He always wanted to go first, no matter what we were doing. One day I pulled him aside and told him, “those who are first on earth will be last in heaven!” Derek looked me square in the eye and replied, “I’m o.k. being last in heaven! “

We would snack together while playing a myriad of beautiful music Blue Danube and anything by Louis Armstrong were their favorites. Letters were learned, art was created. Each week we would take a book, for example, Wacky Wednesday, by Dr. Seuss . We would come to class dressed to match the theme of the book, in this case our pajamas, and do everything backwards. The kids were the teachers, we did outside playtime first, and afternoon snack was breakfast. We had a tire swing, a trampoline, four horses and chickens. There was no end to the mayhem we found ourselves in.

My oldest daughter Zoe, now has two little girls of her own, Charlotte-Mae ( Mae-Hem) and Callie Jo ( Calliegator) and she has recreated our schoolroom in her playroom in Florida. I see the play cash register, we used for the Green Pocketbook, the plastic bowling pins that we used for P.E., the cradle we rocked countless dolls in, the books that line her shelves hold a thousand memories.

We built the schoolroom so that Noah would be surrounded by love and acceptance, little did I know that a whole different generation would receive the blessings we created a decade and a half earlier. Each story, game, song and craft I do with my granddaughters reminds me of stepping out in faith years ago….trusting if we built it, they would come!

The Little Red Schoolhouse That Could

Published on by Kristen McGinnis1 Comment

Christmas time of 2007 was filled with so much joy. We were learning that the Down Syndrome diagnosis, and ‘life in Holland’ was just different, not worse.

Noah at 15 months could scoot, crawl, cruise but not yet walk. We were preparing for all of the holiday festivities. Two of our best friends from Virginia, who happened to be sisters, had moved up to Delaware with their families.We decided that we were going to have a progressive dinner at each of our homes. We would each host a course and would move from house to house. Since Mom and I lived on the same property, and Carol and Wanda shared their land in Hartly, it would work out perfectly.

Carol had a daughter, Eliza that was turning 2 that December. She was agile, bright and adventurous. Her gross motor skills were off the chart, and even today, she excels in any sport she applies herself to.

As we entered the appetizer course at Carol’s farmhouse, Eliza ran to Greet Noah. She wanted him to follow her to the playroom to enjoy her toys. When she realized that Noah could only scoot and not walk, she did the most amazing thing, she got down on the floor and imitated Noah’s movements! For the rest of the evening, regardless of whose house we were visiting, Eliza and Noah could be seen scooting from toy to toy, engaging with the various friends and family.

This special bond, spread to Noah’s other friends as well. Soon he had a small core of typical kids that he would engage with on a regular basis. As I watched the friendships unfold, I knew I wanted him to be surrounded by all of this love and acceptance. In 2009, my mom and I began a preschool on the farm.

Daylilly Academy was established. We turned the migrant home in between our houses into a one room schoolhouse. We painted the walls, hung tapestries from the ceiling. A bathroom was installed. Things were donated, bought and repurposed. The first year we ‘enrolled’ five of Noah’s friends. Every Thursday from 12-3, the kids would get dropped off and bedlam would ensue. We did plays, crafts, songs, we fed our horses, did experiments, walked our nature trails and skimmed the ponds.

Year after year, the school grew until we were finally turning kids away because the schoolroom couldn’t contain more students. We watched the three and four year olds turn into seven and eight year olds. What a joy it was to not only have Noah’s life filled with so many friends, but to have the privilege of teaching alongside of my mother.

As time went on the academy whittled down to just Eliza and Noah. We took field trips, built elaborate structures, read amazing books, and performed exciting science experiments. Just like when Noah was a baby, Eliza would lead the way to his learning, carving out a path he was able to follow even if it was at a slower pace.

When I look back over the sixteen years of Noah’s life, the Lord was so faithful in providing a community of friends who loved him, and who we loved. I’m still amazed at all of people in our life who came to ‘Holland’ and enjoyed our little school there.

The C-9 Life

Published on by Kristen McGinnis2 Comments

Have you ever driven by a home and everything is pristine? From the landscaping to the manicured yard, the white lights burning brightly in the window…

When we moved to Daylilly Farms, our multigenerational land that houses parents, children, grandchildren and great grands, that is what I envisioned. I was growing accustomed to life with Noah. The uptick in doctor visits, therapies, a slower life …but I was still clinging to the ‘American Dream.’

I began decorating for the holidays, making cookies with the kids, hanging the outdoor lights on the eaves. My vision was becoming a reality as I placed a single white candle light in each of the windows. Legend has it, that in Colonial Times the light represented a safe haven for those traveling dark, lonely paths. Houses that had these candles would be a place of safety and refuge for weary visitors. I’d love to say that was what I was signifying by putting one on each sill. In reality, it was that I was declaring that I too had an immaculate, tidy home and life.

I made sure that each of the candles were centered in the window and secured so that at night we had a warm glow beckoning from within. I was going to take this life, with its diagnosis and brokenness and manhandle it into the image of my own making.

The next evening as I was making dinner, I peeked out to check on Noah and he had the electric candle stuck in his mouth like a lollipop! I ran over and snatched it out of his mouth. I carefully repositioned it, then I secured it back to the windowsill. Crisis avoided…or so I thought. Night after night, the candles would be turned on, and like a magnet, Noah would toddle over and insert them in his mouth. I tried stronger tape to hold them down, he would just rip them off with both hands.

A logical response would be, put the candles away! If I put them away then I was admitting that my life wasn’t perfect, pristine, shiny. Obviously, the candles had way more emotional significance than their $2.00 price tag. After going back and forth with Noah for a week, him waiting expectedly for the lollipops to light up; me patrolling the perimeter like a prison guard, I gave up.

Who was I kidding? Myself? My family? The church? My friends? This was a three ring circus, and I was the ringmaster! I ripped the lights from the sockets and threw them into the trash can. As an Ennegram 8, I have no moderation, I’m either one hundred percent in or out. I was definitely out.

Joe and I took the four kids and marched to the back of our pasture, I pointed to the top of a blue spruce. We chopped it down and hauled it back home. It had to be eight feet tall and ten feet across! We named it Behemoth. Up until this particular Christmas, our trees were always decorated with white lights. Not this year..I was done with the farce! We weren’t a ‘white light’ family.

I went out and purchased the biggest, brightest colored lights I could find C-9 bulbs. We hung them on Behemoth, she was a sight to behold. If the dream was going to die then I was going to light the sucker on fire! The Phoenix that arose is still talked about each Christmas.

I still use the C-9 lights every Christmas season, much to the chagrin of my grown children. Ceeniner is my handle on Words With Friends (if you ever want to play.) Now when we drive through neighborhoods and I see the twinkly white candles burning in the windows of the stately houses in the curated neighborhoods; I look back at my Noah and offer him a circus peanut and enjoy the ride!

The Rock

Published on by Kristen McGinnis1 Comment

Every family has them….stories that are told over and over again. Maybe they bring a sense of comfort or laughter, maybe both? Many of the following essays will be just that, a myriad of stories that involve Noah, our family and (mis) adventure.

We live on Daylilly Farms a thirteen acre, multigenerational plot that houses three to four generations at any given time. There are two houses, a migrant home turned schoolroom, two sheds and two barns on the property. The land is surrounded by woods, but there is a lot of grass. From March until October, someone is always on a mower, tractor or using a weedeater.

One of mom’s chores is mowing our beautiful, winding looonnnggg driveway. When she was looking for a property to buy, she came upon our current location. As she turned down the lane in mid fall, with the leaves changing and the colors bursting, she declared that regardless of what was at the end of the lane, she was purchasing this land! Thankfully, there was a cute ranch style home waiting for her to make it her own.

When mom mows, she has some of her greatest epiphanies. Sometimes, she mows when she’s mad or when she’s working out issues in the family. Regardless, everyone knows when she’s on the mower because she often sets the level for cutting grass too low. We know this because we hear the crunching of gravel or wood. Perhaps we have to push to get the mower unstuck or it runs out of gas.

On this particular day, Noah was about seven months old. He was taking a nap on my bed downstairs. I had the windows opened, the curtains were fluttering, a picturesque afternoon. I could hear mom and the mower grinding up the pebbles outside the arbor.

All of a sudden we heard a horrific grinding of the motor and a pinging of rocks on the side of the house. One rock must have gotten stuck in the belt because the mower came to a stop. Mom came sheepishly inside to ask for help.

I didn’t want to leave Noah asleep when I ran outside, so I decided to grab him before we went to look at the latest mishap. When I walked into the room, a three inch boulder rock had sailed through the screen and was lying on the bed inches away from Noah’s head!

I hollered for Mom who came in, saw the rock and gasped. Not only was there a huge hole in the screen, but Noah’s head was a mere inch or two away from being cracked by a lawn mower projectile.

Noah now 16 wants to hear ‘The Rock” story every time he hears mom mow. The legend has morphed so many times. When Noah retells it, sometimes his head was gushing with blood, other times we had to call 911. I’ve even heard him recite the story as if he is a youth walking and talking and not a seven month old baby. If we are really lucky, sometimes he re-enacts the tragedy.

They say that family stories that reflect trials and triumphs are an important kind of communication. It builds family unity and binds hearts together. Noah lives in a world where he is the super hero. Being a part of his adventure has helped me to experience life with a different set of eyes.

Breakdown

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After Noah’s first smile, there were many more firsts. At Christmas Noah was ready for rice cereal. All three of my older kids, were exclusively breastfed their first year. We decided to let Mom feed Noah rice cereal, since she never got the chance to feed the other babies. We wrapped up a beautiful bowl, baby spoon and a box of rice cereal and gave it to her as the first gift of the day. Noah happily gobbled up the mixture and we all patted ourselves on the back for how ‘normal’ everything was.

As homeschoolers we had started our seventh year of learning when Noah was born. We would meet in the mornings, review lessons and assignments and then I would work one on one with whoever was struggling with the days task. When Noah started being somewhat mobile we changed schooling to our upstairs family room. There was a small table and chairs, a sofa and on either side Zoe and Marley’s bedrooms. It seemed the perfect solution!

As we started this particular day, emotions were running high. Farm chores were late getting done, the goats needed to be milked. No one got the chicken’s eggs and bickering was at an all time high. My level of overwhelm was climbing and climbing. As I worked with Malia on her reading lesson , Noah started banging his head against the wall. Thinking it was an accident, I moved him to the center of the room, and proceeded with the lessons. More arguing, pencils couldn’t be found, the eggs still needed to be gathered….then Noah rolled/scooted, shimmied back to the wall and started head banging again. That was it! Something broke inside of me. I quickly asked Zoe, almost 13, to watch over things. I got in the van and drove.

I needed air, perspective, a donut! Living in rural Delaware, I had few options, so I went to the only place I knew would be safe to have an emotional breakdown, the parking lot of Food Lion. I stopped the car in the far corner and cried. I had no idea what I was doing. Not only with Noah, but with homeschooling and ‘farming’ with marriage and teen years breathing down my neck. I was a hot mess. Knowing the only way through is through, I put the car back in drive and headed home.

Noah obviously didn’t want to be confined, so we returned to schooling downstairs. We sold the goats, got rid of the chickens and anything else that took up emotional energy and got back to basics.

This lasted for approximately one month. I was taking the trash out in our side yard when I notice a black lab was squeezing herself in between the fence posts carrying something in her mouth. Over and over she did this. I walked over and discovered she was bringing seven Labrador-mix puppies into our playhouse. She then left! The puppies were covered in fleas! Immediately, the girls got to work. Zoe, Renee, and Malia set up the baby pool and began washing the pups, while Marley and I got them food and water. What were we going to do with seven puppies? I had just gotten rid of seven goats and a dozen chickens, there was no way I could handle anything else that required care and feeding.

We set about finding homes for the brood. Six were black and one was chocolate. We called church friends, they took some, Renee asked her teachers at school, they took another, the archery store took one, until we were only, conveniently left with the brown one. Please, my kids begged. We will take care of him they wheedled. I finally relented and Choxie was ours.

Apparently those closest to me started making bets over how long I would be able to handle a six week old puppy, a six month old nursing baby, three kids homeschooling not to mention helping mom with Gram. Choxie and Noah must have conspired together , because if I wasn’t up breastfeeding Noah, the puppy was biting my toes, whining, or having an accident on the floor.

Noah was in and out of the doctors offices and hospitals every year from September through February with allergies which turned into croup which turned into pneumonia. Unfortunately for Choxie he came during one of Noah’s health spirals. After five days of no sleep, our little brown bundle was gifted to Renee’s favorite teacher and another rendezvous to Food Lion was averted!

The Call

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After a few days in the NICU, we finally were able to come home. The doctors said it could take up to two weeks for the genetic tests to be verified. Friends and family surrounded us during this time. Noah seemed so typical just like his older three siblings. He nursed, he cried, he cooed. Inside each of us were going through worst case scenarios in our heads. Mom, Gram and I would sit on the front porch at the farm and watch the kids play as we took turns holding our baby. That’s what he was our baby. If I wasn’t breastfeeding him there were seven others waiting to hold him.

Things I remember during the wait; searching the car for change to buy a bottle of Boones’s Farm to drink at sunset with Mom and Kate. Getting cable tv after years without, why? I don’t know it just seemed necessary. Our church bringing meals, as a celebration or condolence? If that period had a color it would be gray with swathes of pink hues.

Finally, the call came from our pediatrician that Noah did have Trisomy 21. I was in my bedroom when I took the call. Since I was the one to hear it first, I was also the one who would have to tell everyone. Joe was out by the fence overlooking the pasture, I came up beside him and put my arm around him. He looked at me and said, “Well, we will win a lot of Special Olympic fishing tournaments I suppose.” That was it, no tears, no hesitation, just a humble acceptance.

I took my Grandma Kate out on the porch swing and told her. Gram had a massive stroke in her fifties. Her right side was paralyzed and she was mostly nonverbal. As I told her about her great grandson’s determination, she hugged me with her one arm and repeated one word over and over, good, good, good.

My mom and I were in somewhat of a denial phase. We read all we could about Down Syndrome and determined that IF Noah had Down Syndrome (this was after the testing) he had Mosaicism where only some of his chromosomes were affected. We of course, had good genes and this couldn’t possibly be our fate. Mom even went so far as to tell the Geneticist the testing was erroneous and we would like another one!

Zoe, the oldest, the caretaker was determined that she would step in and mother Noah. Marley fretted and worried about his little brother and became super protective of him. Sixteen years later they are still the best of friends. Little Malia, the twinsie, just loved her sibling. My niece Renee who lived on the farm, would get off the bus each day and proclaim him the most perfect cousin.

Life limped along but I was angry at God my fist was clenched to him. I had a failed first marriage, a son with juvenile diabetes and now another son with a disability? Everyday I woke up with a hard stone of anger in my stomach. All that I knew of God was being tested. Believers who were trying to comfort often said the most hurtful things. Joe and the kids seemed impervious to all of this. They joyfully, and lovingly adored our baby.

My older children say that I was different before the birth of Noah that after the diagnosis, I lost a lot of my carefree, happy ways. I of course beat myself up. Maybe I was too old to have another baby? Maybe I got exposed to something I shouldn’t have? Why me God? I have had enough hardship. Then one day in November of ‘06 it was gone. The hardness, the accusing of God’s goodness. I was flooded by the beauty of a different way of life. I’ve always zigged while others zagged, often out of step with those around me. Who better than our family to love, raise, nurture and adore this gift?

My family and close friends will tell you throughout my pregnancy I talked about Down Syndrome often. When we found out I was going to have a baby, my mom said I prefaced the announcement with a reference to loving and accepting the Lord’s will, regardless. I got up from the table at 28 weeks when they wanted to do the amnio….I was being prepared, it just took me a few months to catch up to what my body and mind had been trying so hard to tell me.

The Wedding

Published on by Kristen McGinnis2 Comments

Well, of course I said yes! The wedding planning began in earnest. We decided we would get married in February. In true tongue and cheek manner, I decided I wanted to get married on Honest Abe’s birthday. February 12th. When mom had me back in the good ole days, I was the first grandchild on either side. You can only imagine the love and anticipation that accompanied the birth. Mom, being a young 19 year old had a very hard time with the birth and they proceeded to use the medieval device know as forceps to ‘help’ in the delivery. Kate walked in and declared that I was the sixteenth presidents doppelgänger! Also, our pastor was on a missionary trip that weekend and we had to move the date by one week.

It was decided that the kids would walk me down the isle. It’s weird planning a wedding with four generations. Everyone had a say in how they wanted the wedding to look and feel. Our budget was small and Joe’s one request was that I wear white. This being my second marriage, I struggled with the whole purity thing. While Joe and I as believers had decided to wait until we were married, we both were obviously not virgins. To compromise (not really) I found a sea foam green dress at Goodwill that I fell in love with.

The date was drawing near and we decided to have the ceremony at our church and the reception at a nearby restaurant. A fun fact, the restaurant we chose had a gazebo on the water where my first wedding had taken place. As a chronic nail biter, I got my nails done. On the day of the wedding, poor Marley was recruited to help me pull up my stockings so I didn’t tear them with my talons, an action he tells me scarred him. The girls wore matching green dresses, while the men wore suits with daffodils in their lapels. It was simple and meaningful. Towards the end of the service we performed a ceremonial hand washing acknowledging that the person you have chosen is not perfect, yet fits with you in a way no other person can.

After the pictures we headed to the restaurant, Joe told me we had exactly two hours to enjoy the celebration and then we were heading to our honeymoon! The DJ played ‘our song’ Mr. Mom by Kyle Casey. Noah thinks our wedding song is Lilo and Stitches theme song, no matter how hard we try to tell him otherwise. It came time to cut the cake and as I was beginning to feed my husband, I let go and his slice splattered to the ground. A fact that he reminds me of every time I use our cake server. Joe then scooped me up and we headed to the beach house. When we were finally together, we both cried. Christ really can make all things new.

The next day we returned home. My life friends, Carol and Wanda, not only watched the kids but had gotten us all new, beautiful linens for my room…our room. We really were beginning again. Little did we realize less than a year and a half later our lives would literally be turned upside down.

The proposal

Published on by Kristen McGinnis2 Comments

We slowly started emerging as a family of five. Trying on the guise of an intact family. Joe now 23, Zoe 7, Marley 5, Malia 3 and I’m 35. Joe has the intuition of a much older man and he steps into the role of father figure. This role has been void since my first marriage. Joe begins watching the kids while I work, alternating shifts so that we can accommodate breadwinning with the needs of homeschooling. When I reflect back over this time I remember tons of camping, field trips and nature exploration. We were learning to become a family as we tamed the great outdoors.

Joe came to me shortly after we we had started dating and told me he felt like he had won the million dollar lottery ticket. After being in a loveless marriage for ten years, I was overjoyed to be with someone who not only was falling in love with me but also with my children . One day Mom, Kate, the kids and I decided to go to Wild Quail with Joe. Mom and I wheeled Kate to the baby pool so she could soak her gnarled feet in cool water. Joe had taken all the kids to the deep end to play Marco Polo, Gram, Mom and I craned our necks to see Joe without his shirt as he jumped in to play with the kids. We were overcome with giggles as he held his nose before he took the plunge!

Later that summer we decided we were going to all meet at our beach house in Bethany. This was our safe haven for years, growing up, LSD ( lower slower Delaware ) was our refuge, our breathing space. Mom and her crew had headed down the day before. Joe and I loaded up the kids for the weekend. It should have been an hour and a half trip! Bathroom stops, air for the tire. bearcubbing, and cries of hunger required a stop in Milford, about forty minutes from our house. When we got out, we realized Marley’s blood sugar was plummeting and I proceeded to run into McDonald’s to get a sugar soda to alleviate the hypoglycemia that was coming. We finally reached the beach house and I climbed out of the car and drug myself up to my second story bedroom. Joe got the kids comfortable and kneeled at the foot of the bed. I raised my head up suspiciously, unsure of his intentions. Was he going to try to rabble rouse me? Urge me to get up and join the fray? No, he got down on one knee, and asked, “will you marry me?”

Are you kidding me? Most men would run, no this man…this boy/man who just happened to live next door to me…saw the craziness, the brokenness, the fragility of a single mom trying to raise three kids while also helping her mother and grandmother….this man was saying…I do! I do to the mess, the brokenness. I choose you!