This time of year I always get a little sentimental.
It is really surreal to think that I started this blog nearly 5 years ago already. I loved to write and I was going through something and needed an outlet, so a blog seemed like the perfect way to capture and document it all. And it was; until I got so busy with life and 4 kids that a quick photo or FaceBook update were much more manageable. But this might be the year that changes...
5 years ago today, I was busy readying 2 big kids for school, tending to a 1 year old, helping care for my sister and niece and looking at house plans. But I was also getting ready for "the big ultrasound" next week where I could finally find out if I would be buying more blue or (finally) some more pink. After a very rough go through my first several pregnancies (a missed miscarriage, a 32 week preemie and another miscarriage), I had a much easier time with with the boys thanks to a little bit of bedrest and progesterone shots to help stave off preterm labor. I was so excited to find of the sex of baby #4 and it was getting so close.
But, like most things in life, that day did not go according to plan. I wrote about that appointment and the rest of the pregnancy afterwards. Although I didn't share the blog widely for quite a while, it brought me much comfort and I love to now go back and reread all the raw emotion of the experience.
Moments have a way of making their mark...
I can still hear the words from the doctor.
I can still feel the lump in my throat as I left the office.
I can still remember the many tears in the car.
I will never forget the words I spoke to my husband and those he told me as he comforted me so.
And as painful that day seemed at the time and as I sit today, even on those days that adulting is hard, I am grateful for those moments that together became a day when I knew my path had shifted.
Today my life is something that I never imagined, but somehow could not picture any differently now. I wrote a freaking book! I am the Executive Director of an organization that didn't exist 5 years ago and now serves over 4000 families. I have a busy, amazing, wonderful family life - including backyard chickens. I have developed friendships around the world. But I really can't imagine it any other way.
Blessings Beyond The Ordinary
Our journey of becoming a family of 6 with a prenatal diagnosis for Trisomy 21 (Down syndrome).
Our journey through a prenatal Trisomy 21 (Down syndrome) diagnosis and beyond
I wish it were possible to recognize at the beginning of our life’s story what an incredible journey we are truly on. If so, I would have sat down years ago and begun documenting all the ordinary and extraordinary events in this amazing life I have been blessed with. Sometimes, though, it may take just one more thing to open your eyes into the beauty of the life you have led and causes you to pause and truly count the blessings that are now so many they will never be enumerated.
If you are just joining us, please go back to September 2012 to get caught up.
Sunday, August 13, 2017
Thursday, August 27, 2015
Guest Post- Our Diagnosis Story: Brenda Hickson
I remember that day like it was yesterday.
November 18, 2014. I was going in for my 20 week ultrasound. We had found out
about a week before at a 3D scan that we were having another girl, we were so
excited for Brielle to be a big sister! My husband, Josh was working that day
and couldn’t come, so I got my mother-in-law to come over and watch Brielle and
off I went. I couldn’t wait to see my beautiful baby again!
The ultrasound tech (who I am happy to say
I now call my friend!) did her scan and never indicated anything was wrong. She
gave me my results in a sealed envelope and off I went to see my doctor without
thinking anything was wrong.
My doctor opened the envelope and very
quickly, but gently, told me that they found some “soft markers” on my ultrasound
that could indicate a “genetic disorder” which could mean a number of things or
could mean nothing at all. I don’t remember much about what else she said, it
was all kind of a blur after that. I remember driving home totally stunned. I
walked through the door and when my mother-in-law asked me how it went, I broke
down and sobbed “the doctor thinks there might be something wrong with the baby.”
Those next few weeks were a confusing time.
I remember saying, “I don’t care if she has Down syndrome, I just want her to
be healthy.” I look back now and know that the only reason I said that was
because I thought that’s what people would expect a Christian woman, who is
staunchly pro-life, to say. The fact of the matter is, I was terrified. I grew
up in a very small community with very little exposure to people with
disabilities. And to be completely honest, people with disabilities had always
made me feel uncomfortable because I didn’t know how to act around them.
Long story short, about 2 weeks later, I
got a phone call from the Genetic Counsellor who confirmed what I already knew
in my heart; our baby girl had Down syndrome. Brielle, who was about 16 months
at the time, was really sick with a bad virus. I was literally up to my wrists
in toddler poop and puke while trying to talk on the phone getting the most
devastating news of my life. I hung up the phone and started sobbing.
My husband came home and tried to comfort
me. He accepted the news a lot better than I did. He also kept faith that the
test was wrong and that she would be born perfectly healthy. I, on the other
hand, knew. Call it Mothers intuition, but I knew from that very first day that
the test would come back positive.
If it wasn’t for Brielle, I wouldn’t have
even gotten out of bed for those last months of my pregnancy. I was completely
and utterly devastated. I was angry with God. “Why me? Why this baby?”
The following are just some of the thoughts
and fears that ran through my mind:
·
I grieved the fact that Brielle
would never have a “normal” sister relationship. Would she resent us when she
got older for having to always stick up for her sister, or would she be
embarrassed to have her around? What happens to her when we die? Is that
“burden” now on Brielle to look after her? Would Brielle feel always like she
came second because of her sister’s complex medical problems and needs?
·
I thought she would be ugly.
This one is so shameful for me to admit but I firmly believed that this baby
would come out and I would think she was hideous. I resolved that we would
never go out in public for fear that people would stare or say something
hurtful to me.
·
I was frustrated that no matter
how many doctors appointments or ultrasounds that I had (and there were A LOT)
that my baby would still be “broken”. There is no fixing Down syndrome. I was
resentful that these appointments and trips were taking time away from Brielle.
·
I felt like it was a waste of a
pregnancy. I was stretching my body and going through this pregnancy for a baby
that I didn’t even feel like I wanted. Since we only ever wanted 2 kids, we
were done after this. So now we only had Brielle that would ever get married or
give us grandkids or excel in school and/or sports. That’s a lot of pressure to
put on a person. Looking back, this was just my pride. Of course you always
want your child to be the best at everything so it was a huge blow to my ego to
have a child who would have intellectual and physical delays.
·
It pains me to say this, but I
started to resent that baby growing in my belly. I thought maybe it would be
better if I had a miscarriage or a stillborn. Better for us and better for her
to not have to grow up with a disability.
·
I longed for the life that I
had pictured in my head. Two beautiful, successful girls growing up together as
best friends. Someday they would move out, go to college, get married or have
children. My whole “plan” was ruined. (How selfish and naïve I was to think she
couldn’t accomplish some of these things!)
Everyone tried
to say the right thing, but it didn’t matter who it was or what was said, it
made me angry. How DARE people try to encourage me?! They didn’t know what I
was going through, no matter who they were. I remember reading stories from
parents of kids with Down syndrome who said “it will all change once you see
her.” They didn’t know me! They didn’t know who I was or what I was thinking. I
was so angry with everyone. I knew that no matter what happened, I would never
feel the same for this baby as I did for Brielle. I was in such a dark and
angry place, I didn’t even recognize myself.
I started
hating going onto Facebook and seeing all these happy posts about my friends
and family having these beautiful, healthy babies for the tenth time and I wasn’t
even lucky enough to have two normal, healthy children. How was that fair?
Through all of
this, my husband never wavered. He never doubted me as a mother for a second.
He told me over and over that I was just hurting but as soon as I got the
grieving out of the way, that I would love this baby so much more than I could
have ever imagined. I thought he had no idea what he was talking about. To give
you an idea of how amazing Josh is: he said this to me just before she was
born; “We are so lucky that we will probably always have her at home! I think
we would be lonely if both our kids were gone.” He has never looked at this as
a burden or a punishment. I wouldn’t be where I am today if it wasn’t for him.
It’s a funny
thing when something like this happens to a person. You doubt everything you
once knew. You question yourself as a wife, a mother and a human being.
Skip ahead to March 15, 2015. I was in labour and I still had myself convinced that if she came out a stillborn, I would be ok with that. She was born at 5:11pm. The NICU team checked her over and asked me if I wanted to hold her.
It was that
exact moment that I realized I did. Oh, how I wanted to hold this baby girl! I
wanted to love her and cuddle her and kiss her and never let her go. I wanted
to shield her from all the hurt in the world and protect her against people who
are set on extinguishing people like her. That first picture we have together
is real emotion. I wasn’t just smiling for the camera because I thought that’s
what was expected of me. I was crying and smiling because I couldn’t believe how
much I loved this little girl. I couldn’t believe how beautiful she was and how
much she looked like her sister. Yes, I saw the Down syndrome but I also saw
PAST the Down syndrome and saw my baby. She looked up at me and I could have
sworn I heard her say “See mama? You had nothing to worry about! Look at how
awesome I am!”
Charlie Grace
came home with us only TWO days later. Once I thought I would never post
pictures of her or take her out in public. Now I probably annoy people with all
the pictures I post of her and how much I talk about her. I love showing her
off to everyone, including strangers. And what does Brielle think about her new
baby sister? Well this photo kind of speaks for itself.
A child’s love is so pure and so honest.
Brielle doesn’t know there is anything different about Charlie. She just loves
her baby sister. Charlie will make Brielle a better, more empathetic person and
Brielle will make Charlie a better person by just loving her for exactly who
she is!
The Down
syndrome community is fantastic. The people and children you will meet when you
become part of this exclusive group will shatter everything you thought you knew
before. It’s like gaining a whole new family from just having one baby! They
lift you up and support you because they know what you’re going through.
There are still
some hard days. When she had surgery 2 weeks ago to repair a heart defect, that
was hard. When I see something cruel posted online about people with
disabilities, that’s very hard. I try not to hold it against people. I was once
ignorant to the beauty of these people too. When people use the “R” word; it
hurts my heart. But again, I try not to hold it against people because I was
one of those people 6 months ago! All I can do is just be Charlie’s advocate
and try to kindly educate people to the best of my abilities.
All of these
emotions I felt after we received her diagnosis, I was very ashamed of. I never
planned on writing about them because I have a lot of pride and I didn’t want
people to think less of me. But I realized I needed to. I want to let parents
who are going through this right now that it’s ok to feel what you’re feeling.
No one can tell you how to feel or now not to feel. It IS a grieving process.
You need to grieve the baby you thought you were having so you can accept the
baby you were blessed with instead. And nobody knows what you’re going though
unless they’ve actually been there before. Whatever you are feeling is OK! Your
feelings are valid, don’t ever forget that.
I hope you have
the support and love that we have had through all of our friends and family.
Charlie is SO loved by everyone around her. Not once did anyone we know
question us about continuing our pregnancy. Not once did anyone say anything
deliberately hurtful. We have been lifted and carried in prayer and in love and
for that, we are eternally thankful.
She is already
proving to us how determined and amazing she is. I thank God every day for her
adorable smile, her chubby cheeks, her easy going attitude, and her chunky
thighs. I thank God that she is healthy and thriving. I thank God that He
blessed us with her. I don’t know what we did to deserve her, but I’m so glad
we did!
So to people
new to this journey, chin up. It’s such a hard thing to go through, but so
incredibly worth it. If you’re anything like I was, you won’t believe a single
word I just said. But I hope in a few days or months, you will think back and
take comfort in this. Your child is beautiful and will amaze you every day.
“Down syndrome
is a journey I never planned, but I sure do love my tour guide!”
Encounter Sunday: Purposeful Steps....
I was thrilled to be able to share a bit about our life (so far). Here is the transcript to accompany the video....
I have always been a believer, but
I don’t think I really knew about
faith, hope or love until I entered the season of parenting. The last three years, especially, have
solidified for me how destined our lives really and how the path set for us by
Him.
I grew up in the Catholic church.
Church every Sunday morning (or Saturday nights when my parents were feeling
crazy). Catholic grade school, middle school and high school. Some of my teachers were nuns. We wore plaid uniforms- the whole nine yards.
But even through those years of my life, I never really developed a
relationship or deep sense of God or my faith. I rarely attended church through
college and the years before kids. I
prayed and worked to be a good person, but I never got much out of worship and
it wasn’t a priority. That changed soon
after I learned I was expecting our first child.
Entering the season of parenthood
is an interesting one. Excitement,
worry, anxiety, exhaustion – so many thoughts and emotions. Not long into our
first pregnancy we discovered I had miscarried.
There really is no way to describe that time. I was devastated. Throughout my life, being a
mom is something I always saw for myself.
And after a year of trying for another child, I started to feel hopeless
and found myself praying more often about what to do. But all that changed when
we found out another child was on the way.
It was a cautiously optimistic, but incredibly hopeful time. Until it wasn’t.
At 26 weeks, I went into premature labor. For those not in “the know” a pregnancy lasts
about 40 weeks. After weeks in and out of the hospital and great attempts to
keep our little one cooking, Katelyn Elizabeth was born at 32 weeks. I was so grateful for my naïve attitude
towards having a baby. If I knew then
what I know now, I would have been a complete wreck. But, instead, I kept the faith. Prayed at her
NICU isolette and had faith in God and our medical team.
Shortly after having our daughter,
we decided this parenting thing was right up our alley and we knew more kids is
what we wanted. After suffering another
early miscarriage, I became pregnant again and prepared to have children that
were 16 months apart. Another test of faith and hope as we prayed and planned
with the doctors to ensure a better pregnancy this time around. Around 18 weeks, my body showed signs of
premature labor again so we put a plan into effect to keep him (yes a BOY!)
cooking. Thankfully, with partial
bedrest and some medication, I delivered a full-term Andy at 37 weeks. Shortly after he was born he needed some
breathing support, but hours later he was nestled in my arms in our very own
hospital room. I had never been so happy;
two happy, healthy kids.
But, you know how kids like to keep
you guessing? After his first birthday the little guy began to vomit. A lot. Every day. After many months of
doctor’s visits, researching and praying for guidance down the right path and
strength to advocate for his care, we found answers and treatment hundreds of
miles away. Within a few years’ time, he
was healed and growing and healthy. More
parenting experience under our belts.
And more purposeful steps on my path, indeed.
Having two children close in age
and spending lots of time dealing with medical issues has a way of wearing a
mom down. Maybe you can relate? But then
we fell into our rhythm of life. The kids were growing older, getting more
independent and starting school. I was
completing my master in Educational Administration and working full-time as
instructional coach-a job I felt destined for.
And then we discovered baby number three was on the way.
Yes, a surprise, but one that was
definitely placed in my journey for a reason.
After getting over the initial surprise and worry of another
miscarriage, I found a deeper struggle than I ever imagined I would face. I was
in the season of busy- with family, job, coursework. I had been feeling “not enough” for anything;
doing so many things, but not feeling as though I was doing anything well. Ever
been there? I loved my work. The older kids were starting school. I was just about to finish my administrative
degree. I remember vividly sitting in this space worshipping and praying for an
answer about my future. What it would look like. What I should do. After months of thinking
and praying on it, I made the decision to quit a job I loved and stay home with
my kids. A really tough choice for me, but I knew in my heart it was the next
step I was supposed to take. A
purposeful step on my path.
This time, I rocked pregnancy. I
took precautions, listened to my body and Colton Thomas came into the world
fast and furious at 39 weeks. He roomed
in with me and we were home as a family of five in just a few days. I felt like
this was the way my life was meant to be. It was hard to not go back to work,
but it was also wonderful to be able to spend more time with my family and be a
full-time mom. This experience taught me
so much about my power and confidence as a mom. Another purposeful step on my
path.
So two kids was our unspoken plan.
Colton changed things up a bit and I really loved having kate and andy close
together and wanted that for Colton too, especially with age differences. Not everyone in our house agreed, though….but
once Colton turned six months old, we made the decision to give him a
sibling. Less than a month later, we
discovered we would be welcoming baby number 4 by the end of the year and we
had no idea how much our life would (and wouldn’t) change in the months to
come.
Fourth child. Sixth pregnancy. I
felt very confident after getting past week 12. We had a game plan, although this time I was
in a new high-risk category with three letters- AMA. It was the nice way of medical community
noting that you were “old” on your chart.
I would be 35 when our child arrived, so a new flag was added to my
file. It really changed very little- we still opted out of prenatal screens and
blood tests. Until things changed.
I went into our 20 week anatomy
scan mostly concerned about two things: my cervix and the baby’s gender. I wanted to be sure I was not showing signs
or early labor again and I am a planner and really wanted to know what to buy.
The scan went normally- I saw HIS heart beating (yes, another boy, much to our
daughter’s dismay). I saw fingers and toes. Measurements were on track and my
cervix was behaving. I chalked it up as
a fabulous appointment and stared at the ultrasound pics until the doctor came
in.
Have you ever had that moment when
you meet someone’s eyes and you just know
something is happening? When I saw his
face, I said a quick prayer, assuming the worst, and then felt as if the rest
of the appointment was an out-of-body experience. He began, “These are difficult ultrasounds to
go over…” He mentioned how perfect everything was, except that they baby did
not appear to have a nasal bone. This
meant very little to me, until his next sentence, “which can be a marker for
Down syndrome.” Those words filled my mind. I listened to his
recommendations. I heard about next
possible steps.
As he finished, his other comment
still remains in my heart, "You will need to talk with your husband and
decide what to do." I listened as he talked about a referral to a
perinatalogist for a level 2 ultrasound and possible amniocentesis for a
diagnosis. I left the office and cried on the way out to the car. I was
so worried about all the medical and social ramifications of what I had just
heard. I had planned to go to the store and pick up a cute gender-specific
outfit to share the news with daddy. Now I just wanted him to hold me. I
drove the 40 minutes to his office, praying he wasn't on a job site and called
him to come out to my car.
I felt such a heavy heart as I shared with Brian that our baby may or may not be "perfect." My emotions overwhelmed me and my husband comforted me through. We talked and he reminded me of several things:
I felt such a heavy heart as I shared with Brian that our baby may or may not be "perfect." My emotions overwhelmed me and my husband comforted me through. We talked and he reminded me of several things:
We always opted out of testing
because we would never terminate a pregnancy
I do not need to worry about
"what ifs"
Our baby was healthy
We will get through this
I decided at that moment leaving
his office, that we indeed would be just fine. This baby was meant for
our family in whatever form it took and we would welcome it just as we had the
other babies. A little retail therapy was called for and after buying a
few cute outfits, I was ready to face what was headed our way. Don't get
me wrong, I had a billion questions and doubts, but I also felt a sense of calm
that we would all be ok. We decided to do one of the new prenatal screens-
results would take a week. I did lots of
thinking and praying in that week. It
was strange how many signs I felt I was given and really felt as though I knew
the answer long before the call came in. So much that had just blended into my
days was coming front and center. One
sign even came in this place as I noticed and met the Niday family. Watching
Lesa, Casey and their family on Sunday mornings was an important glimpse into
my future. I knew that God was sending
me a sign that we would be ok. My
prayers changed from hoping he didn’t have Down syndrome, to praying that he
would be healthy. I was now more worried about heart issues and other medical
concerns than anything else. My prayers also changed as I read accounts from
mothers who chose to terminate a pregnancy after learning the child would have
Ds. My eyes were wide open in a new world. Just when you think you are a
seasoned parent, everything changes…
I began connecting with moms before
he was born and learned so much from them about what the future might hold. I was growing more at ease and the little guy
was doing great. We were monitoring a potential heart issue and we made it
through a few good snowstorms and 3 days after Christmas we welcomed Owen into
the world – he was our biggest baby yet!
After a week in the NICU, our family was all home together. No major
medical issues came up and we were a family of 6.
After Owen was born, I felt a
deeper need to connect with other moms who had just had kids “rockin the extra
chromosome” and I invited other new moms to join a “2012-2013 Rockin’ Mom” Facebook
group. Within weeks, I had 150 new friends from around the globe. We were
living this new life together and I will forever be grateful for their
friendship, support, love and acceptance. A very purposeful step in my path.
In sharing our lives, it became
clear how much there is to learn from knowing you are not alone in a journey. I
had always wanted to write and with my new best friend in Australia, we began
collecting diagnosis stories from families.
Within a year, I compiled Unexpected and had over 80 stories from
families available for new parents to read online or in print. Reading the
experiences of so many and seeing the similarities, especially in how the
diagnosis played out with the medical community propelled a mom to think
bigger. She wanted to start a nonprofit that would support families and help
physicians deliver the diagnosis to families in a better way. She asked me to join her and together we
formed the Down Syndrome Diagnosis Network.
The rest, as they say, is history.
Today, we are two years in and have
nearly 2000 moms in our online groups with children under the age of 3 with Ds.
The book has been well received and helped many families through the diagnosis
phase. DSDN has exhibited and presented
at the national conventions. We have partnered with the leading Ds organizations
to support families. Because of this work, I was approached by a large
publisher about writing a guide for new parents of children with Down syndrome. This was an opportunity that I couldn’t pass
up and being able to include the words and stories of so many families was such
an incredible gift. The book will be available online and on shelves in stores
like Barnes and Noble this winter. Next
month, we will hold our first annual retreat in Minneapolis to connect, inspire
and recharge Rockin’ Moms. I will get a
chance to meet moms from our groups and watch how our work has laid the
foundation for these connections and friendships.
I would never have guessed this is
where I would be today, am I constantly in awe of what we have built, but the
progression has been natural and surely guided by Him. It is so very clear to
me of the importance of each step on my path.
All of life’s experiences placed so carefully by Him so that I could be
right here today doing what I am doing. My background in education, my parenting
experiences- Kate’s NICU time, advocating for Andy, rolling with changes after
our surprise Colton blessing. All of it, I believe, to prepare me for my life
and future.
When preparing this, I thought back
to two songs that really defined this journey for me. The first: Glory to God.
I remember sitting here in worship and feeling those words “take my life and
let it be all for you and for your glory. Take my life and let it be yours.” I
feel like that is exactly what I have worked to do. Letting God work through me. Giving up that
control and seeing the bigger picture as it unfolds. Awesome.
The second is one that I first
heard on the way to the NICU one early morning to be with Owen, Blessings. Many
a tear fell hearing the words: “What if trials in this life are your mercies in
disguise?” It really made me pause about what blessings really were and led me
back to that old Garth Brooks song Unanswered Prayers “Some of God’s Greatest
Gifts are all too often unanswered prayers”
All of the pieces were put into
place so that I could use my experiences to serve others. I am so glad that
through my kids and family, I was able develop my relationship with God and
strengthen my faith. Many times throughout this parenting journey I might have
been praying for the wrong things, but today I know I am right where He led me
and where I am supposed to be.
Friday, May 8, 2015
YOU can make a difference today
To paraphrase a a friend... I don't participate in runs. I don't do a walk. But I am asking-asking you, my friends and family, to support this mission that is so near and dear to my heart.
Described so well here by my friend and DSDN colleague, Jisun, the Rockin' Family Fund is launching and I need YOUR support to help makes this incredible difference for new families with a diagnosis. We built this network mom by mom and are 1500+ strong in just 2 years. I would love to build this fund dollar by dollar and raise enough funds to sustain this program for years to come. Every little bit helps and together, it will make a tremendous impact on families that already may face obstacles each day.
Welcome
"Congratulations and welcome to the DSDN family!" These are some of my favorite words that I get to send out each week as we welcome new moms and babies into our DSDN Rockin' Mom groups. Getting to know moms as they are just joining "the club" is one of the greatest parts of my work. Finding connections, easing their pain and worry, celebrating the baby they thought they would maybe never have - all thanks to technology and the support of lots of families around the world. We become a lifeline of support, especially for those that do not have a local organization or family close by, and we are thrilled to watch the journey that each family takes. With 500-600 new moms expected this year, this will be a worthwhile undertaking!
Support
While we hope and wish for the healthiest of childhoods for our kids, each day we are faced with the realities of heart surgeries, hospital stays, medical concerns in our groups. Each day, moms are advocating for their children and working to be Dr. Mom in managing all that sometimes accompanies a diagnosis. It is a fantastic feeling to lighten a load or brighten a family's day, even in the smallest of ways, with a note or thinking of you gift while they may face medical uncertainty. Parents share with us how much this all means during some of the most challenging times.
Comfort
Since last fall, we have lost a handful of babies and children in our DSDN Rockin' Family. I will never get use to seeing the memorials and announcements. Our hearts ache with the mom every time. We rally around the mom every time. We snuggle our loved ones closer each time. Whether the child was having medical complications or passed suddenly makes no difference; they were part of our family and are missed greatly. We started sending memorial wind chimes to families with a loss late last year. And although it breaks my heart to have each one sent, the appreciation and gratitude from families is incredibly worth it. As we are all scattered across the country (and world!) we come together to mourn and support those with the deepest sadness among us.
Empower
We see a need. Moms and dads that yearn for information and understanding, but cannot participate due to financial limitations. Opportunities for learning at the local and national level exist in several levels and families should have access to these events.
Described so well here by my friend and DSDN colleague, Jisun, the Rockin' Family Fund is launching and I need YOUR support to help makes this incredible difference for new families with a diagnosis. We built this network mom by mom and are 1500+ strong in just 2 years. I would love to build this fund dollar by dollar and raise enough funds to sustain this program for years to come. Every little bit helps and together, it will make a tremendous impact on families that already may face obstacles each day.
What we do...
Welcome
"Congratulations and welcome to the DSDN family!" These are some of my favorite words that I get to send out each week as we welcome new moms and babies into our DSDN Rockin' Mom groups. Getting to know moms as they are just joining "the club" is one of the greatest parts of my work. Finding connections, easing their pain and worry, celebrating the baby they thought they would maybe never have - all thanks to technology and the support of lots of families around the world. We become a lifeline of support, especially for those that do not have a local organization or family close by, and we are thrilled to watch the journey that each family takes. With 500-600 new moms expected this year, this will be a worthwhile undertaking!
The Rockin' Family Fund will enable us to send a small gift to each new mom and child that join our network, ensuring that every family is able to see the celebration in this new life.
Support
While we hope and wish for the healthiest of childhoods for our kids, each day we are faced with the realities of heart surgeries, hospital stays, medical concerns in our groups. Each day, moms are advocating for their children and working to be Dr. Mom in managing all that sometimes accompanies a diagnosis. It is a fantastic feeling to lighten a load or brighten a family's day, even in the smallest of ways, with a note or thinking of you gift while they may face medical uncertainty. Parents share with us how much this all means during some of the most challenging times.
The Rockin' Family Fund will help us send care packages to families facing medical issues and extended hospital stays.
Comfort
Since last fall, we have lost a handful of babies and children in our DSDN Rockin' Family. I will never get use to seeing the memorials and announcements. Our hearts ache with the mom every time. We rally around the mom every time. We snuggle our loved ones closer each time. Whether the child was having medical complications or passed suddenly makes no difference; they were part of our family and are missed greatly. We started sending memorial wind chimes to families with a loss late last year. And although it breaks my heart to have each one sent, the appreciation and gratitude from families is incredibly worth it. As we are all scattered across the country (and world!) we come together to mourn and support those with the deepest sadness among us.
The Rockin' Family Fund will help us continue to send a personalized memorial wind chime to families that experience a loss.
Empower
We see a need. Moms and dads that yearn for information and understanding, but cannot participate due to financial limitations. Opportunities for learning at the local and national level exist in several levels and families should have access to these events.
The Rockin' Family Fund will enable us to empower families to seek out information and resources to best support their family.
What can YOU do?
- #sharethelove - Share the blogs, share the posts, share the fundrazr site. Let others know we are out there and ready to help if we are ever needed.
- Donate - Go to our Fundrazr site and give. Imagine what we could raise to support families with thousands of Facebook friends and followers. If everyone donated even $5, we would meet our goal swiftly. Remember we are registered 501(c)(3)- that means your donation is 100% tax-deductible.
- Reach out- Help us create partnerships. If you know of an individual or company who may benefit from sponsoring the DSDN Rockin’ Family Fund, get in touch.
My personal goal- To have 100 friends and family donate $21 each- will you join me?
Thank you for considering supporting this part of our mission- supporting each other is really what it is all about.
Thursday, February 19, 2015
Rockin'versary
I know, totally not a word, but it is now :)
Today I am watching moms celebrate on the original rockin' mom group page about how much the love, support and friendship has meant to them over the past two years. It is truly humbling and tear-inducing.
To hear from so many women about the power of our little groups is unbelievable at times. Mostly because I started the group because I so desperately wanted to find a place to "fit." Owen was a few weeks old. I wasn't a new mom, by any definition, but so many slight nuances just weren't in my parenting experiences yet. I had quit my job the year before to stay home when Colton was born and was still finding my place in new friendship circles that weren't centered around my career. I found so much support online through BabyCenter and reached out to start a group with other new moms. And that, as they say, is how it all began. Within a few weeks, we had over 100 moms with babies born with Down syndrome in 2012/2013. We kept it small and began sharing our lives, tears, smiles, fears, celebrations. Instant connections made around the world and friendships forged across miles. Incredible.
The whole concept is simple, really. A place for moms to come and share life. The only catch, you have to have a baby with Down syndrome. The problem....When we stopped adding moms, I started getting more requests and some were not too happy that we wouldn't include them. You know how those negative things stick with you, even through all the wonderful ones? When I told a mom that I would help her start a new board for the next set of moms, she replied, "That sounds really inclusive. How ironic." UGH. After some time, I decided there really wasn't anything (besides sleep, of course) stopping me from creating a new group. I enlisted some moms to help run it, got it set up and started adding new moms there. Within a few months, that group filled up too, so you can imagine where that led...Now, two years later, we have 15 rockin' mom related groups including almost 1400 moms from around the world.
While this all may sound wonderful, it also comes at a cost. The cost of caring for and investing in hundreds of people and their families. I feel like an auntie to hundreds of children and a sister to their mothers. We have celebrated weddings and new siblings, we have mourned the loss of rockin' babies and their loved ones. We have cheered at each milestone reached, no matter how seemingly insignificant; we have comforted the anxieties, worries and stresses that we also feel.
The real gift: Each other. Knowing we are not alone in any of this.
I didn't have a strong local experience. But I did have a wealth of support available 24/7 from moms in my shoes. Having moms from a variety of backgrounds with wonderfully diverse life experiences has benefited us all and I can never say thank you enough to them for sharing their lives with us.
Two years has quickly passed and I cannot wait to see our anniversary celebration in the years to come <3
Today I am watching moms celebrate on the original rockin' mom group page about how much the love, support and friendship has meant to them over the past two years. It is truly humbling and tear-inducing.
To hear from so many women about the power of our little groups is unbelievable at times. Mostly because I started the group because I so desperately wanted to find a place to "fit." Owen was a few weeks old. I wasn't a new mom, by any definition, but so many slight nuances just weren't in my parenting experiences yet. I had quit my job the year before to stay home when Colton was born and was still finding my place in new friendship circles that weren't centered around my career. I found so much support online through BabyCenter and reached out to start a group with other new moms. And that, as they say, is how it all began. Within a few weeks, we had over 100 moms with babies born with Down syndrome in 2012/2013. We kept it small and began sharing our lives, tears, smiles, fears, celebrations. Instant connections made around the world and friendships forged across miles. Incredible.
The whole concept is simple, really. A place for moms to come and share life. The only catch, you have to have a baby with Down syndrome. The problem....When we stopped adding moms, I started getting more requests and some were not too happy that we wouldn't include them. You know how those negative things stick with you, even through all the wonderful ones? When I told a mom that I would help her start a new board for the next set of moms, she replied, "That sounds really inclusive. How ironic." UGH. After some time, I decided there really wasn't anything (besides sleep, of course) stopping me from creating a new group. I enlisted some moms to help run it, got it set up and started adding new moms there. Within a few months, that group filled up too, so you can imagine where that led...Now, two years later, we have 15 rockin' mom related groups including almost 1400 moms from around the world.
While this all may sound wonderful, it also comes at a cost. The cost of caring for and investing in hundreds of people and their families. I feel like an auntie to hundreds of children and a sister to their mothers. We have celebrated weddings and new siblings, we have mourned the loss of rockin' babies and their loved ones. We have cheered at each milestone reached, no matter how seemingly insignificant; we have comforted the anxieties, worries and stresses that we also feel.
The real gift: Each other. Knowing we are not alone in any of this.
I didn't have a strong local experience. But I did have a wealth of support available 24/7 from moms in my shoes. Having moms from a variety of backgrounds with wonderfully diverse life experiences has benefited us all and I can never say thank you enough to them for sharing their lives with us.
Two years has quickly passed and I cannot wait to see our anniversary celebration in the years to come <3
Saturday, February 7, 2015
When Down syndrome trends...
Down syndrome was trending in social media this week. It made me a bit nervous to open the first
article; I wasn’t sure what to expect. Typically when
I see DS in the media, it is a feel good story that is intended to show us all
how “not different” people with DS are (Driving a car, going to college, prom
king/queen, playing with a dog) but often miss the mark, in my opinion. But this story was different, and I could
tell right away that it wouldn’t be leaving the headlines soon.
In case you missed it, the
story centered around baby Leo and his recent birth diagnosis. In the mother’s native, Armenia, common
practice was to give parents the choice to leave their child behind at the
hospital, where it might go on to an orphanage. The father explained in his story that his
wife decided not to keep the baby and he, instead, was going to take baby Leo
home with him to his native New Zealand.
He reported that his wife asked for a divorce later that week and the
two were no separated. As I read the story, it seemed sad and wonderful all at the
same time. But something also didn’t sit
right with me. I am not sure why, but
having the gofundme fundraiser immediately linked to the dad’s story just
seemed…off. I understand that he would
have expenses and I surely know how much having a child (or four!) costs, but
it just seemed off…
Today the mom’s
side of the story was released to the public. And in reading it, sadness is all that I
felt. It seemed genuine and honest and real. In knowing what I know about how parents with
a new diagnosis are treated, I really wasn’t that surprised at all. But her story doesn't fully ring true, either.
Truthfully, I am terribly sorry for this family. And I hope
that medical professionals across the world see how THEY play a great role in
this story. Do I believe there may have been underlying issues with that couple
to begin with? No doubt in my mind. Do I believe that if they had had a much
better diagnosis conversation, we would never have heard their story?
Absolutely.
This story should be something that every medical
professional reads carefully. In our
world, in 2015, it is appalling to think that this is a common practice or
standard of care anywhere. I realize that in other countries, there are various beliefs held about disability, but it doesn't make it any less heart-wrenching. And it wasn't that long ago that here in the US, there was a common practice not unlike that in Armenia. We do, however, know from
our own history that allowing parents to parent children born with Down
syndrome has made an incredible impact.
People with DS are making great gains and the life expectancy for
someone with DS has increased dramatically in the past 20 years.
And while this is something that many medical professionals
will brush off and claim disconnected to the way things happen in their
practice, their town or their state. It
is just UNTRUE. And is exactly a key
reason why we began DSDN. Read some of the diagnosis stories in our
book Unexpected and you will see what
it was like for these families, in the US and around the world, to receive a
new DS diagnosis in the past few years.
I think you will notice some haunting similarities to the headlining
story. Sad, but true.
In meeting over 1000 moms with children with DS under 3, I
have heard time and time again how common this diagnosis experience is. In fact, we recently surveyed mom and found
that of the 133 that replied, 58 had a prenatal diagnosis. Moms were
presented a variety of options concerning the pregnancy. 70% of medical
providers discussed continuing the pregnancy with the patient. Termination was
as option in 59% of the conversations, while adoption was presented only 22% of
the time. Nearly a quarter of moms (26%) reported that there were no options
presented to them. And THAT is reality.
Personal beliefs aside, this is a much bigger issue. Parents need information and support. They need resources and connections. They need to know that someone wants them to
understand what is going on and that someone is going to provide them
information and tools to move forward.
For as many awful diagnosis stories as I’ve read, I’ve also heard
stories about wonderful medical professionals that followed the guidelines for
presenting a diagnosis. Responding to their patient’s needs and desires. Responding with resources, information and
connections. Those are the stories that I hope become the standard practice.
Those are the medical professionals that practice with compassion and understanding.
What will it take for medical professionals to see just how much
their approach in these situations impacts a family?
If you have had a diagnosis (birth or prenatal) consider taking part in our Physician Feedback Program or talking with your doctor about how that conversation impacted you and your family.
If you have had a diagnosis (birth or prenatal) consider taking part in our Physician Feedback Program or talking with your doctor about how that conversation impacted you and your family.
Friday, January 30, 2015
They Get It
Two years ago I needed support. I was in the darkness and on a new path. I just needed a bit of light to see the way
and give me a boost of confidence to know that even on this new journey, I
would find my way.
I needed to hear the words, “me too,” “YES!” and “Finally,
someone really understands.”
I slung a net of hope out into the world and brought back in
it some of the most amazing people I have ever (and never) met.
Through the wonderful world of technology I have been able
to connect, literally, with hundreds of moms from the other side of the city to
the other side of the world. They have a great sense of what that new path
holds, where it has been and what might be over the next hill or mountain. They
get it.
Nearly 24 hours a day, 7 days a week, I can log on and know
I am not alone in this journey of motherhood.
I can celebrate or whine. I can talk
about nothing just as easily as I can talk about everything important in my
life. Nothing is too large or small. Someone will listen.
I am granted grace on the days my deeper thoughts are less
than desirable. I am gifted with daily laughs and encouragement. I am allowed to be me, warts and all. And
this has made a difference.
Too often women are given a bad rap that drama will ensue
when numbers in a crowd escalate. This
community, for me, is proof positive that when everyone checks themselves at
the door and fully engages in community, wonderful, meaningful connections will
bloom.
Women need to stick together and for moms, that is even more
true. There is too much to be learned from one another for the betterment of
ourselves and our families to not do life together.
My life, today, is not really that different than I imagined it would be 10 years ago- a house full of crazy kids keeping me busy and a husband that loves me and supports my ambitions….But it is drastically different than the new life that I imagined just 2 short years ago. And I believe my online family and the new moms I have the pleasure of meeting each day have made that difference for me. There is much to be said for friendships that transcend thousands of miles of space and even more for those friendships that are grounded in a life-altering experience of the most personal magnitude. Thank you, doesn't even seem enough.
I am more grateful than I can ever express how appreciative
I can be for the women who open themselves up to be real and kind and caring. It started with a bond of our children having
Down syndrome, but has become so much more.
Subscribe to:
Posts (Atom)