25 YEARS of FASD and a Promise

As I woke shortly after the bringing in of the New Year I laid in bed thinking not just of the past year, but the past 25 years of our journey with our adopted sibling group.  In 1997 six siblings who were separated in foster care for 5 years in three different homes joined our family. Our family is well versed with special needs because of our youngest biological daughter Becca who was born with severe Noonan Syndrome.  We embarked on faith and our hope that we could help our newest children, just like we had with Becca. 

We took on our children with the promise of the legislation The Adoption and Safe Families Act of 1997 that helped remove barriers of waiting children from foster care into families with promised federal support for many.  We finalized the adoption of 5 of the 6 siblings after one of the children was separated from the others due to his needs of having a home of his own.  TWENTY FIVE YEARS, a quarter of a century we have walked the walk of Parenting Complex Children and now Complex Adults.   Adoption is not just for childhood, but for life.  Childhood abuse, neglect, poverty, trauma.  We adopted HURT Children. We now talk about the ACES, the Childhood Adversity Experiences.  Those experiences my children knew well.  But somehow we do not look deep enough.  Where are the Prenatal ACES?  What about the prenatal exposures they faced?  Set up for adversity, trauma and before they took their first breath and the effects of those teratogens would affect each one of them. Our adopted children have Prenatal Alcohol Spectrum Disorders.

The oldest we know the history as they tell us what they experienced.  The oldest ones told us of the prenatal exposures to the younger ones along with the blood tests that labeled them at their birth for the illegal drugs that were in their system.  But the drug that had the biggest effect on their lives is perfectly legal.  I would fight to get them diagnosed.  I found out from the children’s guardian ad litem and digging through our youngest birth to three files after fighting to get access, that the foster Mom had asked for an assessment for “Fetal alcohol syndrome”.  The team and social workers said they did not want to diagnose her prenatal alcohol exposure due to it would make her UNADOPTABLE.  She was two.  Documents reveal that she was prenatal exposed to crack and cocaine positive.  I would fight for her to be diagnosed with the confirmation of prenatal alcohol exposure by her oldest brother who told stories of his birth mother drinking with her swollen belly until she  passed out.  Years later we would find diagnosis for 4 of the 5 we had and the brother who was separated from the sibling set.  The middle one of the sibling set said he was “too high functioning” to have FASD.  They said he would have to worry about the survivors' guilt that he didn’t get affected.  According to Ann Streissguth and her early findings about Prenatal exposures to alcohol he was the most at risk for adverse outcomes as he would struggle to live up to society’s expectations and would be misunderstood for his hidden challenges.   FETAL ALCOHOL SPECTRUM DISORDERS is the umbrella term for the differing diagnosis for individuals affected by prenatal alcohol.  (PAE). 

Studies have shown that a very high percentage of foster children have been exposed to alcohol prenatally and poly substance exposures like with my children are common. 

Back when we adopted the children, we knew that love and stability was not enough to heal our children.  They were a special needs adoption.  We found ourselves with a small adoption stipend and Medicaid to help pay the costs of their “special needs”.  But what I didn’t realize was that we were in the no-man’s land of our society's failure to help children with severe mental health needs where we were supposed to find services.  We had to fail first to get help.  They had to fail school enough to get a label. They had to have behavior problems to get support. They would have to fail enough to fall into psychosis, be suicidal or violent to get emergency support only to be discharged after things settled down.  We would have to fail enough as a family and parent to get outside help which often did not exist. Blamed for their behavior, blamed for our parenting, setting up the entire family for dysfunction and falling into secondary trauma for the entire family.  I would find myself in the no-man’s land of how prenatal alcohol exposures do not fit in the mental health fields.  When we adopted our children we promised to find them stability and help.  But we were set up for failure.  Because the system does not recognize FASD as a disability and a qualifier for much needed long term supports.

The promises of help for kids from the care systems who are Prenatally exposed to alcohol may never find them and most may never find diagnosis.

I would find myself learning from other older foster and adoptive parents, reading books on fetal alcohol syndrome and becoming a fierce advocate for my children just like I had to with Becca.  Back in 2002 I attended the first task force on FASD. I founded with another parent a facebook group on parenting kids with FASD. I have journied with thousands of parents like myself.   Our children may have prenatal exposures to legal and illegal drugs, alcohol, other teratogens, prematurity, trauma, genetic and epigenetic disorders and they need support and understanding. The continued trauma of poor fit and reactive help and the lack of supports tailored to FASD means that they continue to build layers of trauma and its reactions.

I once asked someone where the evidence based therapeutics for FASD?  He told me we were? I said we will have lost an entire generation of kids who didn’t get help.  That was 2003. He said that it takes time to turn the ship, to research and make change.   Here we are over 20 years later and we do not still have any UMBRELLA of support for those affected with an appropriate label.   Did you know that even Fetal Alcohol Syndrome is not a recognized disability when you can see the exposure?  FASD is not just about learning and brain damage?  Over 428 diagnoses have been found to be co-morbid with prenatal alcohol exposures. But for those with Prenatal alcohol exposures will find their diagnosis under ADHD, Autism, Bipolar disorder, learning disorder, intermittent explosive disorder, intellectual disability, and a plethora of any of the co-morbid labels. And the medical pieces will be left out.

It's time that we see FASD!

Some questioned our sanity when we started over again with the fostering of a frail little boy who was 17 months old adopting him at 3.  He had the hallmarks of Fetal Alcohol Syndrome.  I knew that he had many more challenges than they had found.  Our second time around a little guy who again would change our lives.  This time, I had the knowledge of Becca’s medical complexity and over two decades of advocating and navigating the medical world and the years of raising our kids with FASD and the support and experiences of other parents walking our FASD walk.  This time I would find myself navigating both systems at once as McKellan would have many many medical challenges from his prenatal exposures but also genetic and epigenetic challenges we are beginning to understand affect these children from the care systems.

I am looking back.  Twenty five years of walking with FASD. 

The promise of diagnosis, support and HOPE for those affected by FASD in the foster care, kinship care and adoption world has not happened.  Until we have an UMBRELLA under the US Care systems where they acknowledge Prenatal alcohol exposure diagnostics as a DISABILITY these children and families will continue to be failed.

A step in the right direction had been introduced in Washington DC.  The FASD Respect Act (HR4151/S2238) was on target to be passed as a stand-alone bill on December 22, 2022 in the Senate with language agreed upon by bi-partisan Senate HELP committee leadership and the next day in the House but was blocked at the last minute by one Senator. In 2022 the State of California passed SB-1016 which made Fetal Alcohol Spectrum Disorders a qualifying diagnosis for special education under the category of Other Health Impaired. The first state to recognize FASD as a condition to qualify for much needed support and help.

Most children with prenatal alcohol exposure will never find diagnosis, support or understanding under the FASD labels. We can do better.

   

It is 2023, a quarter of a century 25 years  of rocking my Red Shoes fighting for my children.  I am still parenting, supporting my now adult children as they walk their walks with their differing challenges from their prenatal exposures and trauma.  But it doesn’t end at l8.  It gets even more difficult for us and them.  My daughter paid the price with her life of PRENATAL alcohol exposures.  We do not even yet talk about the effects of prenatal alcohol on the body.  She died from complications of end stage renal failure at 34 and still misunderstood. I write as I watch my best friend's daughter fighting for her life and a new kidney.  FASD is REAL and it can be heart wrenching.

It’s time to start writing again and fighting for those with FASD.  Did you know that 1 in 7 pregnancies have a prenatal alcohol exposure.  It's not just kids from the care system that are struggling, but it's widespread.  But for my kids, they had the promise of the FEDERAL GOVERNMENT when they took them from their Parents to help them have a better life.  And that means we need to create the support and understanding  they need and that begins with passage of the FASD RESPECT ACT for the kids who are in our care systems and beyond.

And BIG ALCOHOL does not want us to raise our voices. It's a 6 billion dollar a month in sales piece of our economy. They put a label on the bottle that turned it into a personal responsibility issue and they really do not want any more research about the effects of prenatal alcohol.
TWENTY FIVE YEARS, of experience and too much failure... It's time to write again. Anny

31Years Ago, Looking Back to Quarantine and The Lessons That Prepared Me For The Pandemic.

30 years ago, my tiny Becca was in heart failure, no immune system and living in our home Pediatric Intensive Care unit with her 16 hour a day nursing.  She had fought and survived despite her being ruled out for a heart transplant and due to her immune disfunction and high white blood counts (we now know that it was JMML a cancer sometimes seen in those with complex Noonan Syndrome).

Any HOPE for her survival was if they could fix her severe pulmonary stenosis and ASD, but with her severely thickened heart muscle, she may not survive the surgery. 

She was scheduled for surgery and the day before her brother Ian broke out with chicken pox.  Calling the nursing agency and  hospital and soon everyone was busy trying to figure out what to do.  Becca was at home at pediatric intensive care level of care.  The fact her siblings all but Kristy, had not had chicken pox had kept Becca away from seeing her siblings for her entire hospitalization but for one short gowned, masked up visit in a conference room carefully arranged by the hospital staff.  They planned this visit, not expecting tiny Becca to survive.  They had a sister and they needed to at least meet her once.

Now the dreaded pox had intervened again.  Becca's heart was critical and a delay would worsen the already precarious trajectory she was on.  The Red Cross had been called to get her "immunities" to the chicken pox. Checking in with the experts on her immunology team, recommended seeing as Chicken pox is highly contagious rash illness that is transmitted from person to person by direct contact or by airborne spread from respiratory secretions or aerosolized fluid from skin lesions.  The kids would have to be removed from the house. Ian has chicken pox, according to the experts, we cannot avoid spreading it in the house.  65-85% of household contacts will become infected.  The incubation period is 10 to 21 days. And the kids could be infectious 1 to 2 days before they have any sign of a rash.

Learning that infants, and immunocompromised persons are at higher risk of complications which we knew Becca already had, she was in heart failure and medically fragile, she was at risk of secondary bacterial infections (which she already battled with several rounds of systemic staph and bacterial infections), dehydrations, pneumonia, encephalitis and all which may result in death which she was already on the edge of.    The decision was made to move our kids out of the house (all but Kristy) as she had already had chicken pox.  Packing the kids, moving them into my Mom's house and then bleaching our entire house and opening all the windows in March in Minnesota.  We began our quarantine of Becca.

Thank God for Becca's 16 hour a day nursing care.  I juggled home and the sick house at my mothers.  I couldn't just drop off my 3, 5, 7, and 9 year olds without helping. Mom was already babysitting my 1 year old niece in their two bedroom townhome.  I would leave the nurse with Becca and run down to Mom and help out getting home before shift change at 3.  Shedding my clothing in the garage, then to the shower and afterwards scrubbing and disinfecting the only bathroom in the house. Nothing I wore could come into the house.  Lessons I learned would give me a crash course in infectious disease control and how to keep Becca safe and get her to surgery.   Every 21 days another child would break out in the dreaded pox and of course no two at a time to get this over with.  My niece would get them with Marissa.  A toddler and my 5 year old would get a very itchy feverish case.  My siblings would come home from college and walk into a pandemic.  They both would get the pox and have to delay their returns to the college dorms.

The kids were still at Mom's. Every 21 days like clockwork someone else broke out. I had to keep those who were in the middle or end of the chickenpox epidemic in continued  isolation.  Slowly one by one they could come home but 7 days after the last pox was crusted over.  And with Becca's fragility we just kept them at Mom's until Becca's surgery.  My laundry had to be taken to the laundry as it couldn't be done in my laundry room where the furnace could take it airborne to her nursery.  I was still stripping and scrubbing the bathroom some days twice a day as I had to head to Mom's twice a day to help with morning routine, come home for shift change, feed the kids at home and then down to Mom's to help with dinner or saying goodnight to my children.    

Becca's surgery would happen finally after 30 days at the end April of 1990.  10 months old, she would get a chance to live. Knowing the odds that she would not survive the surgery were high.  She would spend 14 days in the Pediatric Intensive Care unit and the little known complication of chylothorax and her damaged lymphatics would make her critically ill again.   Fevers, infection and more.  But the Tiny Titan, fought on.  Testing on her immune system showed now she was severely immune compromised.  Virtually NO immunities.  Infusions of IVIG hopefully would protect her from the normal viruses that circulate and a simple cold could be a death sentence for Becca.

Becca was barely home when the hospital would call to say Becca had been exposed to measles in the hospital and her IVIG was quickly started.  I began the road of understanding what it meant to be a parent of a medically fragile immune compromised child and she had 5 siblings. Chicken pox quarantine, measles exposures.  Flu Shots for everyone who would come into contact with Becca were mandatory. 
We have to protect her or she will pay a huge price. 

Becca is still medically complex.  Living at nursing home level of care in the community under her long term care support waiver and medicaid care support.  She is blessed to have her funding and the choice of where she lives. Just like when she was a baby a waiver brought our daughter home with care support after the fight of the trailblazer Katie Beckett. We went on to foster and adopted another medically fragile child and God found Becca a little brother who needed a family who could help him like we did Becca.

When I saw the leaked video from China, New Years weekend last year, I began to watch and prepare for the pandemic on the horizon. Stocking up knowing that we may need to hunker down.  Becca had two surgeries, one in January and one on March 6. Normally, I do all our follow up care and medical visits in the spring, summer and fall, avoiding the hospitals in the winter.  Clinics and hospitals are not a safe place for people who are at risk. With these surgeries,  she was in protective isolation from the middle of flu season.  Masks for her and for staff. Reminding staff to wash their hands before examining Becca. The return to get the stitches out of her new feeding tube would not be able to be taken out.  As the hospital shut down for elective care.  Out of the box medical care, Doctor Dad's nurse and the PA from Madison with Dad assisting they got her care done and documented her follow up.  We were now home for the duration.   But Dad worked in the hospital and made the hard decision to retire early or he couldn't come home for months or years. 

We are at home, telemedicine has been a Godsend for people like Becca and her little brother who is also medically fragile.  He like Becca only goes to school when everyone else is healthy.  The note on our front door warning people that "Medically fragile children live here"  Do not enter if you have a cold, wash your hands, take off your shoes.

We are now home in "our bubble" of 4.  Fortunately her brother and sister and their families were also in extreme bubbling for the summer and we had a chance to see them once or twice.  Planning ahead for contact and keeping Becca safe.  We are at home, the curbside pick-ups, the now society wide adaptations is making it easy for us to get what we need and stay safe.  I just hope those do not go away as the pandemic wanes for those with disabilities who struggle to navigate the greater society.

The lessons of the years with Becca helped me be well informed in how to shield her and our family.
The COVID19 media and the concrete language of "Stay home, Stay safe." cause confusion for Becca and Mac.  They are fully aware of the repercussions of getting sick.  They lost their grandfather, they nearly lost their aunt, their 'favorite' protective brother was hit hard and blessed to survive.  But the anxiety of going out is now our battle.  Daily rides, visiting the horses at the stables, avoiding people at all costs,  virtual rides at Disney and Universal Studios.  Virtual school does not work for the visually impaired boy.  Technology is our lifeline to the world and connections.  Going for a ride will trigger Mac to have a tic outburst will follow.  "F....... "Que-own-a-virus".  You wreck everything.  I want to see my friends again as we drive by the school.  Driving by the movie theater, another outburst or sad tears,  I want to have a Mackie's movie night with everyone again. Driving by Culvers, a longing "I want to eat out again."  "I want to go look at the toys at Target again."  "The Que-own-a-virus needs to become extinct like the dinosaurs!"  and Mac wants to invent a laser to "zap that pesky virus out of the atmosphere."

As the Covid 19 vaccine is coming out, Doc and I were able to get our first miracle vaccine as medical care providers for Becca and Mac.  But that does not mean we can let down our guard.  No one seems to know where Becca fits in the tiers of vaccine roll-outs?  Then there is Mac.  I read the other day a newspaper article where the same Nurse Practitioner was talking about there begin testing of the vaccine on children.  It will take months and more time.  Patience and shielding will continue.

I am hopeful that someday we can see our family, friends and others again.  But as you get back to your lives of normalcy, Becca and Mac and others like them are still at home or vulnerable every day of their lives.  If you are sick stay home, if you are out, do not sneeze on someone.  The Coronavirus has taught us to have health awareness and I certainly hope the cart wipes, hand sanitizers and more do not disappear.

In the meantime Becca and Mac are sometimes patiently waiting for the Coronavirus to become extinct and we can safely open up again.  

2020 Writing Again! Launching "Just Another Day with My Tiny Titans"

As 2019 comes to a close, we all reflect on the past year.  This year has caused me to reflect on my journey, my family and my life.  I think the decade milestones hasten the reflections.  It has been 30 years since life changed in an instant when a baby was born and changed everything.  Crisis and survival helped me realize just how strong I can be and the things I would find myself having to do, I never thought myself capable of.  I cannot believe it has been 30 years, but even more I cannot believe that the teeny tiny fragile baby who doctors gave no HOPE and her medical difficulties stacked against her would still be here.  But the Tiny Titan, not only survived but showed us the important things in life.  She taught us to smile through all the pain and to never ever ever give up and that you "Just do it".  To do whatever it takes.

Our Tiny Titan taught us resiliency, patience, that everyday is a precious gift.  When a parent has a child with a poor prognosis, a parent learns in time to cherish each precious moment.  It has been 30 years of living each day on the roller coaster that life with a medically fragile baby, child and now adult.  Life is never dull, but it is full of blessings and challenges.  After 30 years I can see the pieces of the tapestry of our lives with Becca, my children, my friends and special needs families who I have come to know and love.  Our children are tiny teachers who change us for the better.

Becca changed everything.  Our lives were turned upside down.  Instead of tearing apart our family, that tough road made us stronger and we found out what we are truly capable of because we had no choice.  We learned to fight and press on despite the odds stacked against us.  Becca showed us the way.  I made a promise early on that I would make something good happen out of all the pain.  To help others not be alone and have someone who would walk beside them.  Paying it forward the help we received along the way.  Moment to moment, day by day, week by week, year by year time would march on.  Living in the moment is a gift.   I had a hard reminder this year of that fact.  My daughter Shay passed way and I had to say goodbye to my daughter.  I joined the club that no parent wants to be part of.   Her holiday ornament hangs on our tree and I believe my daughter is free from the pain of this world and in a better place. 

In 2006 I wrote our story, Tiny Titan, Journey of Hope.  Part I our story with Becca and part II the story of our adopting 5 siblings who needed a family, residency with eleven children and the crazy journey that God helped us through.  People told me that that book helped them feel not alone and that someone else walked their walk.  I have been mentoring and working with parents for many years in the special needs world and in the foster, adoptive worlds as well.  Our families are unique.  Our children unique in each and their own ways.  Social media is our lifeline to meeting and knowing others who walk our walks.  Supporting and encouraging each other while raising our extraordinary children.

Others have asked me when am I writing a followup to the story.  But life usually gets in the way, but even more, where would I start.? I am not certain I can go back and catch up the years.  A few people have said my days are a reality TV story.  But I would never want cameras in our lives.  I can write, I can share the reality of life of living with this family of mine.

I had written long ago when the internet was just starting to explode on a site that would become Oxygen Network.  How do you handle adversity?  That story would catch the attention of New York and Mom's on line.  I worked with the producers to send in pictures, tape record me reading the story and it sat on the internet "Our Stories" for years.  It caught the attention of Oprah and we were to appear on a story about Extraordinary Families when all of a sudden Becca would put a pencil through her palate and develop a systemic staph infection and she landed in the hospital instead of heading to Chicago.  They followed up for a couple of years, reminding me that I needed to write "that" book.

It took me several years to have the courage to write and the NaNuWriMo November Writers challenge helped me begin.  Every Tuesday morning and every Thursday morning after sending the kids off to school and Becca was still sleeping in, I write.  One day at a time until I hit a writers block.  I second guessed myself.  I was "Just" a Mom, I was not a writer.  I had no idea how to publish a book.

We had been working hard on our family project with Backpacks for Kids and the day I sent out over 1800 backpacks and the news channel had crashed the phone lines at social services, we got a phone call from People Magazine.  They were doing a story about "Kids Who Care."  The writer sat at my kitchen table and was asking questions about the underlying story she stumbled on to and told me I needed to "write" a book.  The writer from People Magazine, the producer from Oprah and so many others.  I knew at that moment I needed to finish my long procrastinated biography.  I pulled out the first two chapters and let her read it.  She encouraged me to finish my story and called to check up on my progress.  I had prayed to God for the people to help me and he actually found "People Magazine"
He would find me the people to help me get that book to press.  Through that prayer found me a friend of the heart and our stories and more stories would be be woven together.  But that Story is for another time.

I have been called to write again.   No more procrastinating.  I just finished another book and I am going to find the time to write again.   I need to be intentional and commit to doing it.  I learned the power of sharing our stories.  From helping others, to advocating for our kids and families.  In our communities, in our state capitals, in Washington DC.   Writing and speaking has the Power to make real Change.  Though slow moving, when I look back the three decades I see so much progress, but we still have so far to go.

Families have a voice and sharing our "Day to Day challenges and HOPE, we offer a glimpse into our lives with our children and families with extraordinary needs.   If we do not share them, how can they understand how to help us to be the village we need them to be.

2020 is upon us and I know it is time for me to write again.  So here it goes. I will use this blog to host my daily blog posts of the Day to Day of Life with my Tiny Titans; Becca and Mackie and our family.   I struggled to title the blog and found many of my ideas taken.  But then it hit me.

 "Just Another Day with my Tiny Titans".

As I close tonight and I share my resolution to begin my next writing journey.  Writing and 2020 here we come! I will be back tomorrow with sharing Just another day.

Welcome 2020 and I pray that you and your family will have a blessed New Year!

Anny

30 Years Ago. The Christmas That I Can Never Forget. HOPE

Christmas is a time of HOPE.  God sent a tiny baby into our world to change our world.  For our family, Christmas sent angels to give our family HOPE and HELP when we most desperately needed it. It has now been 30 years since that Christmas and that Christmas can never be forgotten.  A promise to pay it forward is being fulfilled not just at the holiday but everyday as it has changed us for the better. 

This Christmas Story has been retold time and time again.  Shared with parents who have children with Noonan Syndrome like Becca and others who just need to be inspired.  The story has been shared  in magazines, news casts and even recreated as one of The World's Most Astonishing Stories on Nippon TV in Japan.  Miracles in those shares.  Christmas is the time of Miracles and offering HOPE to those who are struggling.  The Story Continues... New Christmases, our family grows, Jim finds a new career, I found my voice and best of all Becca has grown and we have learned much from our tiny teacher.

May you find your Santa to this World with Kindness and if you can reach out to someone who needs a hand up this Holiday season.  Listen to the Whispers of God he will show you HOPE and HEART.

Merry Christmas from our family to yours.

Anny


Chapter 9
Christmas

I sunk into despair. The holiday was fast approaching and Christmas was the last thing on our minds with Becca critically ill in the PICU and everyone else sick too. There was no money for gifts, and there was no time to buy or make anything. I was sick, tired and depressed over the circumstances we found ourselves in. If the phone rang, I was afraid to answer it because it might carry the news that Becca was worsening or no longer here. The phone was a constant reminder of trouble. It rang with bill collectors waiting for money. It rang when medical personnel had more dreaded news or another crisis for Becca. My emotions rose and fell like tidal waves, up, up, up and down, down, down. I tried not to think; not thinking was how I coped. It was like the stairs I ran at the hospital, up and down, and then I’d stop and sit, empty and mindless. I could not think about my children going without gifts at Christmas, but our lives were impossibly out of control. We had fallen into a dark hole due to no fault of my innocent children. At any moment they were going to lose their new baby sister. They were caught in the tidal wave of catastrophic illness when they needed a Santa most to give them hope. How would I explain to my children that Santa forgot them?

I was used to planning ahead and beginning in July bought two presents each month to cover birthdays and Christmas. Over the years my frugal plan had worked flawlessly. I squirreled away the hottest toys for Christmas gifts with early season purchases. While other families were school shopping I was  making wishes come true. It was a challenge to make my kids birthdays and Christmas memorable. I love the holidays and I began to bargain shop for Marissa’s September birthday gift. I budgeted a little each month until Christmas, finding sale and clearance treasures, completing my shopping race under budget. In November we celebrated Jim, Nathan and Ian’s birthdays followed in December by Matt’s birthday, and then Kristy’s birthday in early January. The gifts I bought with Jim’s carpet points guaranteed the boys November birthday gifts. Matt at age three was easy; all I needed was something big. Big for my little kids were exciting and ten dollars went a long way. Other than that I had nothing. We had already used the house payment money to pay for medicine, throat cultures and doctors visits for the kids and me while we were sick.

I was a rookie in the being broke game. I called Toys for Tots and discovered I was too late. They quit accepting new registrations before Thanksgiving. Luckily I remembered buried in the rafters, hidden from my sneaky children I had one gift I had purchased before things fell apart. Before Becca was born I had purchased the new pirate ship Lego set that had caught Nathan’s eye. It was an expensive present, and I could put both boys’ names on it. I had already cut out doll clothes and a dance costume for Marissa, but the fabric pieces remained on my closet shelf while I was sick. Now that Marissa was home from kindergarten I would not be able to get the covert sewing done, besides I was still too dizzy to sew my visions for Marissa’s holiday present. My eyes were seeing double. We would share dinner with relatives and I hoped I would have a dish to pass, but my cupboards were as bare as Old Mother Hubbard’s. My head spun at the thoughts of a hopeless Christmas and the room took another whirl; exhausted I took some Benadryl and fell back to sleep.

While I slept, Kristy took the picture of Becca from the fireplace and sat alone in a quiet place to cry. It was something I never knew she did until years later. People often think children don’t know what’s happening but they are much more a part of the reality than the adults realize. Kristy never complained and she protected us by caring for the little ones and not adding to our burdens. I worried sometimes about how this would affect her in the future. Today, she tells me it was the substance that made her strong.

The little elves in my family executed a Christmas plan. Kristy found the Christmas tree in the garage, and she and Nathan, my mechanic, assembled it. Ian and Marissa got busy cutting out paper snowflakes and hung them with dental floss from the ceiling and windows. My little red and green sewing pins stuck six stockings to the mantle. When I awoke, they surprised me with their magical transformation. I had not lifted a finger. They had carefully hung each of their hand made wooden, beaded angel and needlework ornaments crafted by Jim’s parents. Hundreds of hours of love radiated from the tree centered in a carpet of paper snowflake snippets.

I explained to them that Christmas was about family and being together and sharing memories. What was going to be special about this Christmas was that the Yurceks were a family. Christmas is about the baby in the manger who brings hope to a dying world. Our baby was in the hospital and all we had was hope. After spending seven days in bed, I was regaining my strength.

Why did I feel such shame that Santa might not come this year? I prayed, “Oh Lord, How can I find gifts for Kristy, Marissa and Matt? It is already December 23. How can I let my children down? How can I face Christmas morning empty handed? The kids’ baby sister is dying. They need something good to happen.  Please don’t let their baby sister die at Christmas.”

My children were ready for Christmas. I was not. I couldn’t expect my parents to shower my children with toys; they were struggling with my dad’s recent unemployment. My parents blessed my children with attention, but had no financial resources to give.

Becca was transferred to the Pediatric Intensive Care Unit (PICU) just as I had fallen ill. It had been a very long nine days and finally the kids and I were well. I was healthy enough to see Becca and had been given clearance to drive. I was no longer dizzy.

The PICU had a circular desk, and different beds surrounded it. Off to the side with glass doors were the isolation rooms. One of them housed my Becca, who looked so tiny in the crib in such a big room. She was on oxygen, and they explained to me that she kept forgetting to breathe due to the RSV and pneumonia. The respiratory therapist gave her a treatment to help clear her lungs. She had a blood staph infection, her feedings were on hold, and they were giving her nutrition and fluid by IV. Her heart was in failure. Merry Christmas was far from my thoughts. Bah Humbug! This was not merry, not merry at all. I was dreading Christmas and I was feeling like Ebenezer Scrooge.

Startled out of my doldrums, Mary was standing in front of me saying hello. The nurses had called her to let her know I had arrived. She had something she needed me to sign. That’s all I had been doing, signing, and waiting, and hoping, and praying. Bah Humbug!

She took me to her office. I had no idea where her office was as she always brought the paperwork to me. She opened the door and picked up a large shopping bag. Her smile radiated. “Merry Christmas!” she exclaimed. The nurses had shopped for families who would be without for the holidays. They picked out a present for each one of my six kids. They even purchased the batteries for the remote control car for Nathan. They thought of everything. The bag contained a roll of wrapping paper, bows and even the tape. It’s nooks and crannies were filled with little treats – a box of candy canes and five chocolate Santa Clauses to peek out of the top of the stockings. Miracles really do happen and my wish had been granted. My kids would have Christmas.

Mary told me that the hospital employees often play Santa for families to make sure they would not face the holidays empty handed. She knew that if I were skipping meals to feed the children, there would be nothing for Christmas.

I returned to Becca’s isolation room. She was much too sick to be held. I savored a moment of calm and thankfulness. Slowly I was learning to savor tiny moments of peace and tranquility. I stayed by her side quietly reading before heading home with my miracle sack. I felt so thankful for the graciousness of these kind people. With my ritual kiss goodbye and whispering I love you, I prayed to her angels that she would be here when I returned.

My kids are notoriously nosy and I wanted to surprise them on Christmas morning. I rushed off to pick up Matt and Marissa at Mom’s and stashed the Christmas gifts before the older ones had a clue. While I had been sick, Mom had been busy and blessed us with another surprise. She had sewn Kristy and Marissa new Christmas dresses and my aunt had bought sweaters for the three boys. All my five kids would have new matching outfits to wear for Christmas.

Jim closed the store early on Christmas Eve and helped me dress the little kids for the Christmas Eve service. I told Jim my secret miracle and we smiled eye messages across the heads of our stair step sized children sitting between us in the church pew. We sang for the birth of baby Jesus and our hearts cried out for a Christmas miracle for Becca. After the service the kids played in the manger, Marissa and Matt rode the lifelike donkey proclaiming they were on their way to Bethlehem while I stared down at the tiny doll in the manger and said a quiet prayer for my little baby lying so far away, all alone, in a bed in the PICU. We needed hope in the midst of such incredible sorrow.

Mom invited us for cake and ice cream after the service, but I had other plans. Families are supposed to be together and I was not going to allow Becca to be alone on Christmas. We all went to the hospital to visit Becca, but only Kristy and I were able to go to PICU. Jim stayed with the other kids in the lobby while Kristy and I went to say Merry Christmas to Becca. Each child had made Becca a card and the nurse taped the cards to the wall above her bed. I hung Becca’s handmade stocking on the foot of her crib, putting on the Christmas music Kristy had recorded. I made a special Christmas wish, asking for a miracle for Becca. I left her again with a kiss on her feverish cheek and wished her a Merry Christmas and a very blessed goodnight. The walk from PICU to the lobby seemed endless, my heart heavy laden with grief, babies should be home with mommies and daddies on Christmas Eve.

Fresh snow had fallen, and instead of hurrying home on the freeway we meandered past the lighted mansions on Summit Avenue of St. Paul. We passed the Cathedral and the Governor’s manor. The children marveled at the beautifully decorated homes. Matt clapped his hands in joy, while the others argued over which house was the favorite. Ian and Kristy engaged in a competitive battle. Marissa’s face was lit up from the wonder of the lights and its beauty. The kids were enjoying the ride so much that we wound our way home through parks, and lakes, and residential streets for over an hour. It was peaceful and calming. The kids quieted and Matt fell asleep.

Scattered snowflakes were falling and Jim and I listened to the Christmas music playing from the radio. The radio DJ announced that Santa was spotted circling the globe, and Marissa and Ian excitingly questioned how he managed to get all the work done in one evening?

This explanation I left to Jim, it was his turn to try to satisfy his children’s curiosity. His eyes sparkled as he told them Santa was magic and can make anything happen if you only believe. It was a heavenly ride. I reached across the seat setting my hand on Jim’s knee. Jim’s answer had satisfied the children’s curiosity, and Kristy had caught my glare, playing along with the magic of the moment.

It was nearly midnight when we arrived home and the house was pitch black to save on electricity. As we pulled in the driveway, the mini van’s lights shone upon dark shadows lying near the door. Jim hopped out of the van to see what was going on. Then he summoned us as if it were nothing.

As I reached in the back seat to get sleeping Matt, the children shrieked, “Santa came! He came! Santa was already here!”

What were they talking about? I grabbed a confused, groggy Matt. There were nearly a dozen or so thirty-gallon black trash bags left sitting by our front door. Jim and the big kids carried in the bags.

The children tore open the plastic bags to discover dozens of wrapped presents with their names on them. It was blessed chaos. There were tons of groceries, toilet paper, and shampoo. Everything we were out of.  Kristy, Nathan and Ian were stacking the packages by the tree while Marissa and Matt played mountain climbers scaling the huge mounds of packages. Kristy screamed as she caught the tree from falling. Marissa narrowly escaped a plunge from the top of Gift Mountain. Our children were bouncing off the walls, but we finally convinced them that it wasn’t Christmas yet, and Santa required they open presents on Christmas morning like in The Night Before Christmas. They didn’t argue because we had just read the story.

Marissa wondered why Santa left them outside, instead of bringing them down the chimney. Ian, who always had an answer for everything, announced, “he had so much dummy; if he brought the bags down the chimney, he would get the chimney stopped up.” Kristy added “that the house was locked and he could not bring them in the door.” Finally they all scampered off to their rooms and soon were snuggled in beds dreaming of Christmas miracles.

Shortly after midnight the phone rang. It was the resident from PICU calling us to let us know Becca had turned the corner and they upgraded her status to stable. She was improving and was breathing easier so they had removed the ventilator; Becca was now breathing on her own and on supplemental oxygen! Becca was getting better! My Christmas prayers had been answered. And someone, some Santa somewhere had fulfilled my wishes. He or she arrived with bags of toys, and goodies, and groceries. My cupboards would no longer be bare. Jim and I had no means to provide for our family, yet someone, somewhere, knew our needs. I thanked the baby in the manger for this Christmas miracle.

Jim and I put away the much-needed groceries. Two turkeys, packages of hamburger and chicken went into the freezer. We put the canned goods on the shelves . . .apples and oranges, carrots and potatoes, and onions . . . bathroom and hygiene products. There were even a couple loaves of expensive rice bread. Whoever brought this Christmas miracle, had not forgotten anything. They had even picked up a double pack of diapers for Matt who was regressing from his potty training in his upside down life.

The real Christmas miracles were hidden in the tiny details. Buried deep in one of the bags I discovered a brand new pair of much needed white Reebok tennis shoes for me. They fit perfectly. We filled the stockings with candy and small gifts from the bags the kids had not seen. With the gifts from the hospital and the one from us for Nathan and Ian, we had more presents than we had ever imagined. Our room looked like a Hollywood movie Christmas morning scene. Where did all this come from?

Jim and I crawled into bed, hoping to get a few hours of sleep before the kids scrambled upon us to open their presents. They were tired from the late night and for the first time ever on Christmas morning; they slept until 8:00 A.M..

Kristy in her sweats and the little ones in their blanketed sleepers tore into the pile of packages. One, two, three, four, five, six, seven, I lost count of the gifts they each received. Nathan screamed pulling out a pair of roller blades, the current hottest trend retailing at $l50 a pair. Who had done this? Ian soon discovered he had a pair too! Kristy found a boom box, a jewelry box, curling iron and music to play. Packages marked to the Yurcek family contained a VCR to replace the one that had been stolen when our house had been robbed and ransacked right before Becca’s birth. There were movies, games, books, colored markers, and art kits for each child. Even Becca was not forgotten. She got new clothes, a diaper bag, several new pink animals and more music. Marissa found a big package with a dollhouse and furniture. She was surrounded in pink heaven. Matt tunneled and laughed through the wrapping paper and boxes. We corralled him to open his presents, a big floppy eared dog, trucks, cars and a train track. The boys tried to set up their new remote control car racing set in the middle of the wrapping mess.

Jim was not to be forgotten and he discovered new socks, sweats, jeans and a belt. He handed me a tiny box from under the tree that he discovered while we were cleaning up and making sure all the tiny toy pieces were not thrown away with the mountain of boxes and wrapping paper. Inside was a solid sterling silver heart necklace with six tiny stones. The necklace was a reminder of hope, a mother’s heart with my six precious children. The six little diamonds sparkled in rainbow colors from our Christmas tree. It was bittersweet to look at as Becca’s heart was slowly failing. But I reminded myself that for today Becca was doing better, and this Christmas we had witnessed a true miracle. Some unknown Santa with a caring heart had done all this for us. But who, how, when?

No longer were our cupboards bare. The kids and I made a fresh fruit salad with real whipped cream. Kristy peeled the apples and Nathan chopped them along with slicing frozen strawberries. Marissa cut banana coins with a bread knife and Ian added one handful of marshmallows to his mouth before adding the next handful to the magical miracle bowl of Christmas fruit.

We dressed for Christmas dinner at my cousins. The family celebrated the day together with aunts and uncles, cousins and second cousins. All were there but one, our Becca.

No longer would we be hungry again. We had food for the next month until our food stamp case opened. The kids had new toys to keep them occupied. We had warm clothing and mittens. I later discovered when our bills arrived, that some unknown Santa paid our phone bill, the utility bills, and our car insurance! We will be forever grateful for the gifts of that year, and we will never forget we witnessed a true Christmas miracle. I have from then on remembered to give back to others as you did for us. Thank you! What you did for us that year was unbelievable! You gave us the gift of hope and belief in miracles.

Buried in one of the bags of the hundreds of dollars in gifts we found a card, wishing us a “Merry Christmas and to all, and to all a good night. You are loved! Santa.”

Those were the same words whispered in tiny Becca’s ear ten days earlier. Was it connected?

Over the next few years, the miracles continued helping us when we needed it most. I tried to find who our anonymous Santa was but we never discovered the giver of the gifts. Whoever it was did not want to be found out. Maybe someday that person or persons will read my writing, and I will finally be able to thank her or him for our Christmas miracle and generosity.

Perhaps we will never know.
Chapter 9 of "Tiny Titan, Journey of Hope"  by Ann Yurcek

Becca Christmas 2019

Tiny Titan, One Small Gift is Available on Kindle at Amazon.com

Merry Christmas from Our Family to Yours.

Ann, Becca and the whole Yurcek Tribe

Why Do I Rock My Red Shoes?

Today is International Fetal Alcohol Awareness Day.  I am rocking my Red Shoes.
Our logo says "Start the Conversation... Ask me"  FASD  Red Shoes Rock.

Why do I rock my Red Shoes?

For my children who were born affected by prenatal alcohol exposures.
For all children who have yet to be born with FASD.
For all the families who are raising children with FASD
For all the children who have yet to be diagnosed with FASD.
For all the adults who are living with FASD.
For all the adults who do not know that they have FASD.
For all the individuals who have a lifetime of medical and chronic illnesses because of FASD.
For all those who are supporting those with FASD
For all the teachers and schools who do not know how to help children who have FASD.
For all the communities who do not know how to help children & families who are affected by FASD
For all the medical and mental health professionals who need to know about FASD.
For all the researchers who are trying to find answers to help those with FASD.
For all the systems that have yet to find supports for those with FASD
For all the governments that need to learn so that they can support those with FASD.
For the world to wake up to the knowledge about FASD
For my daughter who died because she had FASD.

Anny

You can Create your Red Shoes Rock Gear at Thirty One Gifts LLC

Last year I learned about how to make Red Shoes Rock Gear at Thirty One Gifts.  I rock my Red Shoes while I carry my catch all bag with all Mac's gear and while grocery shopping and more.

I posted a picture of my bag the other day as Mac and I headed to his medical appointment in the city.  A couple of people asked me where I got it from.  Finally I have time to sit down and blog the instructions!

First go to https://www.mythirtyone.com/us/en/ and find a consultant near you.  If you do not know of a consultant you can always support my friend Katy Pitzen, Lancaster WI. She has a medically fragile daughter and I want to support her in her business.


The bag is the Crossbody Organizing Tote
Charcoal Crosshatch  $38.00    Plus Personalization is $10.00

Find the Crossbody Organizing Tote Charcoal Crosshatch.
Select Personalization

Now it will ask you to personalize your tote.

Click on the Charcoal Crosshatch

Then Click on 2.

Scroll down until you find the blue Tennis Shoes. Click on it. 

Then the Design Color button will pop up.  Change it to Red. 

Click 3 to do the text for the bag.

Fill in the box for the text:  Red Shoes Rock

Then pick the color of the thread:  White
Then pick the font you want to use. I used Chalkboard.

Then it will pop up the sample of your bag.
Click 4 and save your design to your shopping cart.

You did it!  You created your own Red Shoes Rock Logo Awareness Gear

I hope that you got it to work for you!

If you have any questions.  Let me know by commenting on the post.

My other favorite is my Large Utility Tote- Gray Crosshatch  Item Code:  3121   $35.00   

It is perfect for grocery shopping or heading out wear you need to carry a lot like the beach or a picnic.  For me it is my carry-all for heading out to raise awareness about Fetal Alcohol Syndrome with all my gear!

I can Rock My Red Shoes and also Rock my Red Gear all year!

Anny 

End of the School Year: Mom Tears of Joy and We Got It Right!

Curious Cat Award for always being full of curiosity about the world.

In my history of parenting children with special needs for over two decades, the end of school usually means the end of meltdowns, the struggles of my children being misunderstood and the constant educating and fights for services and accommodations for their educations.  I looked forward for school  ending and having a blessed summer of no stress.  I could work on building back up their self esteems that were by the end of the school year bottomed out.

This year is different.   I do not want second grade to end.  I just put Mac on the bus to school for his last day.  His last day is met with this Mom's tears and sobbing.  This is surprising me.   Who would have ever thought that I hated for school to end?   I do not want this year to end.

Mac and Friends

Where do I begin to share just how amazing this school year has been for Mac.  Mac has fetal alcohol syndrome and was adopted from the foster care system here in our state.  They said he would never, this, never that.  Prematurity and at l7 months he was hanging onto life by a thread when he came to us.  As a veteran parent of medically complex children Mac entered our lives.  He would show us and teach us something every day.  My biggest fear for him was that school would not be able to  meet his complex needs and he would grow up lonely and friendless as I had seen happen to so many other children in school settings.

Mac and his friend who has been at his side since Kindergarten

This year I have seen a team and a school that believes in my child. They got it right. They got to see beyond the wheelchair, beyond the anxiety and beyond the lack of being able to talk to see and know my Mac. He has friends, he has teachers who accommodate him and find ways to access what he knows. I have seen a team of teachers, paraprofessional, therapists, office staff, and administration go out of their way to help us get it right for Mac and for other students. I have seen friends surround and understand him and fill in the gaps for him. They know he struggles to stand, they stand behind him and support him to be included with everything. They know they do not have to have him answer to be part of the conversation. They talk to him and often ask Furry for the answer. The children truly care for him and his team taught class is appropriately called the "The Second Grade Dream Team".

Mackie and friends 

Dreams did come true in that class this year.  The dream that children can learn, no matter the challenge.  The dream that everyone is included.  The dream that everyone will have a friend. The dream that he has teachers who care and love him.  A paraprofessional that knows him and his challenges and steps up everyday to help him soar and learn to the best of her ability. To the team that came together every month to share ideas, strategies to keep improving on the IEP and how to accommodate his complex needs.  To the special education director that saw a need and bought the stairlifts to plan for emergencies to get our children safely out of the building. The approved the Matt Connect magnification device so he could see the classroom and his materials.  His homebound teacher who teaches here every afternoon after him spending his morning in the school.  So much more, AT evaluations and the equipment,  even his special toileting chair for use at school, new curriculum with the ability to be able to be read for him and accommodate so many more students with meaningful learning. The special busing and everything it takes for Mac to shine. Thank you to the school district for doing what is needed and stretching and thinking out of the box for children like Mac.

Mac is shining and he has shown them that he can learn, he can think, he can be accommodated with this typical peers with giving him the tools and accommodations to reach those goals. Mac is determined and will measure up to the goals we set when we get it right.  We got it right and he has shown us that with his new curriculum that he has comprehension skills at the top of his class.
This is the same child who they only saw the disability,  not the ability not too long in the past. They saw the little boy in a wheelchair off to the side, flapping and flailing, non-verbal silently just existing.  The team saw him in our home, they saw who he could be and together we figured out how to help him shine and grow at school.  Thank you all for believing in Mac.

The Second Grade Dream Team

I sit here writing as tears fall. Everyone who knows me knows that this MOM has tears of happiness and for good things.  My PTSD from years of systems trauma, means that I have more HAPPY tears of HOPE and JOY and more determination to get it right this time.  Tears that Mac soared and he has what it takes for him to shine!

All it takes is a little help and accommodation

Today I write that Second grade will never be forgotten.  This is the year that I finally saw a school get it right. Yes we had bumps in the road, but those little bumps are normal and if we did not have those bumps, we wouldn't have been doing our jobs and stretching the schooling and experiences for Mac.   For the first time ever, I am sad for the end of the school year to come. But also celebrating that we got it right.  

Friends and true inclusion

We got it right! We did it for Mac and he soared. And a little stuffed penguin was part of the classroom and even a part of the yearbook because he was in the IEP.  Thinking out of the box and doing what it took for a young boy to learn and most of all be apart of the school and valued.

We would have never imagined Mac being able to go to school for a full day.  He has made the whole day the last Friday and today he will walk/roll out of the building with his friends after a whole day of end of the year celebration.  He will be there to say goodbye until next time to his friends and celebrate the last day of school.  He could have never done it without having the supports he needed to shine and thrive.  People believing in him and friends.

Thank you to everyone who helped make this possible.  And for going the extra mile to help Mackie make sure that his friends could make it to his Mackie's Movie Nights at our local movie theater.
This is a year of dreams come true, friendships, empowerment and memories that will last a lifetime.

And to you Mac you did it ! You taught us all more than we could ever teach you!

You Rock and we are so very, very proud of you.

Love,
Mom