A Weekend With Some Rockin' Moms

This past weekend I ventured WAY outside of my comfort zone and got on a plane to Phoenix, Arizona by myself to spend the weekend with 400 other Rockin' Moms.  "What is a Rockin' Mom?", you may ask.  A Rockin' Mom is a mother of a child who is Rockin' an extra chromosome, just like Matthew.  It was a retreat put on by the Down syndrome Diagnosis Network, an amazing organization that provides support to new parents of kiddos with Down syndrome as well as providing information to medical providers to help make the diagnosis experience better.  The work they do is life-changing for so many families, and I am so grateful to have this organization in my life.

The goal of the retreat is for moms to connect, inspire and recharge.  I can safely say that all three of those goals were met with flying colors.

(Mommas who had their babies in 2017)

When I got home, my husband asked me what my favorite thing about the retreat was.  I had to think, and had a hard time narrowing it down, but I finally came up with my answer:  connecting with other moms.  Meeting moms that I have followed on Instagram or Facebook.  Moms who I feel like I know, even though we have never met.  Moms who have inspired me, whether through their writing, their advice or just by showing off how amazing Down syndrome can be through pictures of their cute kiddo.  Meeting these people in real life, and hearing their stories, that was my favorite part.

I can't even describe the feeling of being in a ballroom full of 400 other moms who all had their lives change over night by hearing the words "Your child has Down syndrome."  It gives me goose bumps just to write that.  There is no doubt that we all live different lives.  We came from all over the United States, and even a few from Canada and the UK.  We might not have much else in common, but that bond of having a child who has Down syndrome is a strong one.

(Oklahoma Mommas representing)

The lineup of speakers definitely left me feeling inspired.  On our first night, we were welcomed with dinner and a keynote address by Bethany Van Delft.  She spoke about her experience receiving a birth diagnosis and the range of emotions she felt afterwards and the importance of telling our story.  She shared her story on The Moth, which you can listen to here.  I had not heard it before, and it is SO different than our story, but I believe her candidness about her real feelings is admirable.  She is a comedian by trade, so there were many laughs that night, as well as a few tears.  Her story is definitely worth a listen to gain some perspective into what many special needs parents feel.  She definitely left me feeling inspired to continue sharing my story, and Matthew's story, because you never know when your story may change somebody's life.

The conference is generally geared toward moms of kids 0-3, but there were moms who have older kids too.  We were able to listen to a panel of "veteran moms" whose kiddos are older- teenagers or adults.  I LOVE hearing stories from those parents and kiddos who are paving the way for Matthew's future.  The parents who have pushed for inclusive education to become the norm as opposed to the exception.  The kids who have proved that people who have Down syndrome are capable of succeeding in school, going to college, getting jobs, being independent, even getting married.  Matthew will have so many opportunities because of those who have gone before us, and I love to soak up all of their wisdom.

The moms on the panel answered questions by sharing stories of their experiences along the way.  My favorite story was told by a mom whose son told her that he wanted to get a job.  She thought she would have to reach out to a special needs agency and see how to go about it all.  She noticed a little while later that he wasn't at home and his bike was missing and she panicked a little- she had no idea where he had gone.  Long story short, he had gone to Publix to get himself a job and had succeeded.  He didn't need her to act as his agent or help him figure it all out.  He decided he wanted a job and he went out and got it.  There were many other wonderful stories that warmed my heart and left me feeling full of hope for the future.

The final speaker was Brian Donovan.  Some of you may remember him as Rusty on 90210, but that was a little bit before my time (just barely).  His little sister, Kelly, had Down syndrome.  He spent seven years making a documentary about their story and how he helped to make her dream of performing before a sell-out crowd in Hollywood come true.  You can view Kelly's Hollywood on Showtime, and I hope to watch it soon.  He believes that everyone should be given the chance to pursue their dreams, whatever they may be.  I pulled out my notebook and pen to write down his words when he said "You are more than the labels and limitations placed on you by society."  I am pretty sure that every mom in that room is fighting to prove that their child is more than what society thinks of when they hear "Down syndrome."  We are all fighting to change the narrative.  He didn't leave a dry eye in the room when he shared the following (it was written in the 70s, so some of the language used is definitely a bit outdated):

The Special Mother by Erma Bombeck
This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles, "No matter, I can fix that. This one is perfect -she has just enough selfishness."
The angel gasps - "Selfishness? Is that a virtue?"
God nods, "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't realize it yet, but she is to be envied. She will never take for granted a "spoken word".
She will never consider a "step" ordinary.
When her child says "Mummy" for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My Work as surely as if she is here by my side".
"And what about her Patron saint?" asks the angel, his pen poised in mid-air. God smiles, "A mirror will suffice."

When I told you before that I had to think about what my favorite part of the retreat was, I'm not going to lie, coming in a close second place was the lazy river.  The entire retreat was held at the JW Marriott Desert Ridge Resort & Spa.  The resort was beautiful, and the facilities for the conference were amazing, but their water features were definitely the highlight for me.  I spent almost all of my free time by the pool or in the lazy river.  There are few things more relaxing than floating around in an inner tube with the hot desert sun above and cool water below.  Throw in uninterrupted adult conversation in there and it is pretty hard to beat!  This definitely fulfilled the "recharge" portion of the retreat for me!

I learned so much.  I feel refreshed.  I met so many wonderful women. I feel like I am not alone in this journey.  It was a truly wonderful experience, one I don't think I will ever forget.  All that being said, I could not wait to get home and hug my babies (and my husband too).  Now it is back to reality: toddler tantrums, non-sleeping babies, therapies, chauffeuring kids all over town.  But when I get stressed out or overwhelmed, I will try to remember the bonds I made and the support I felt.  I will remember the phrase that was repeated over and over again, "You've got this, and we've got you."

This trip was made possible because of all of my wonderful friends and family who donated to my fundraiser for DSDN.  Last spring, I raised over $5,000 from 57 different donors for DSDN!  All of those donations allowed me to go to the retreat with all expenses paid.  I thought about all of those who helped me get there every single day.  I am so thankful for the outpouring of love and support that has been showered upon us.  I really wish that I could put my feelings of gratitude into better words, but there truly are no words that do it justice.

I got to meet two of the ladies from The Lucky Few Podcast!  Heather Avis wrote the book The Lucky Few and Mercedes Lara who I follow on Instagram (hooray4sunny).  It was a total fan girl moment!

Some other 2017 Mommas (3 others from Tulsa)

Matthew's 1st Birthday Recap

Matthew is ONE!  We celebrated him ALL week long and smothered him with love (and took 1,000 pictures).


We kicked off the fun with a little pre-birthday photo shoot.  He looked so cute in his birthday crown, and we had so much fun with our last monthly photo shoot.

Matthew's birthday stirred up emotions I hadn't felt in a long time.  I was overwhelmed with both love sadness at the same time.  I am so grateful for how far Matthew has come, but I don't think I have fully recovered from the trauma of his rough start.  When I went to get him out of his crib on his birthday, I could not stop crying.  I was thinking about how when he was born I didn't get to hold him.  I barely got to see him for hours, and I could only hold his little finger for days.  All of those feelings came flooding back.  Thankfully, I got it out of my system in the morning and was able to just enjoy Matthew and his special day from there on out.  I barely put him down all day!

After Matthew's nap, we filled his crib with balloons and he had SO much fun playing in there.  All of his brothers had fun playing with him too.

We ended the day with a cupcake for Matthew.  He has texture aversions, so we weren't really sure what he would do with it.  I am pretty sure the only cake that made it into his mouth was via his foot. In Matthew's mind feet are always better than everything else!

Matthew's party was such a fun way to celebrate him and all of those who helped us get through this first year.  Matthew was SO excited for his party that he skipped his nap, so he was a little tired and not his happy self during his party.  I put him in his highchair for some pictures and he just chilled there for quite a while.  When it came time for cake, Matthew did not have much interest.  We ended up saving his smash cake and having a take 2 the next day.  We are so grateful for every person who sent Matthew birthday wishes or came out to celebrate him.  This sweet boy is SO loved!

And here are pics from cake smash take 2:

Matthew received no shortage of gifts for his birthday, but perhaps the most special one is the video that his Uncle Will made for him.  I sent Will a selection of pictures and videos from Matthew's first year and he compiled them into this amazing video that will probably bring a tear or two to your eye.

It is such a special way to remember the journey he has been on in his first year.   

We are so thankful for Matthew and all the love he has brought to our lives over the past year!  We are also eternally grateful for every person who helped us along the way.  Every meal.  Every prayer.  Every text, email or message.  Every carpool and favor.  We could not have made it through his first year without our tribe.  

Happy 1st Birthday Matthew

Matthew is ONE!!!

Happy, Happy Birthday to our sweet baby boy!!  

More birthday fun coming soon.  

Potential

"If human beings are perceived as potentials rather than problems, as possessing strengths instead of weaknesses, as unlimited rather than dull and unresponsive, then they thrive and grow to their capabilities" -Barbara Bush

The quote above popped up on my Instagram feed the day that Barbara Bush passed away, and it felt like she was speaking directly to me.  I have been thinking about writing this blog post for weeks, and I keep coming back to this quote in my mind.   This quote can, no doubt, be applied to all humans, but I believe it is especially meaningful when you think about people with special needs, like my sweet baby Matthew.

Fifty years ago, babies born with Down syndrome were almost all institutionalized.  It was very rare for a family to go against the doctors advice and to take their baby home with them.  People born with Down syndrome were thought of as problematic and a burden on their families.  Because they were institutionalized and not given opportunities to grow and learn and experience the world, their potential was stifled.

Because of early intervention, inclusive education, an increase in higher education programs for people with intellectual disabilities and more opportunities in the workplace, we are just now seeing a generation of people born with Down syndrome who are able to reach their potential and it is encouraging.  Today, a baby born with Down syndrome has limitless potential, just as any typical baby.  The battle lies in getting others to see their potential and allowing their strengths to guide the way.

Matthew will be ONE in three days (can you believe it!?), and I figured this would be a good time to talk about his future.  J.P. and I have very high hopes for Matthew's future, and we believe his potential to be unlimited.  One of the biggest lessons we have learned over the past year is that people who have Ds can do almost anything, just on their own timeline.  Matthew gave us our first lesson on this before he was even born!  I got induced on May 8th and was sure he would be born that day.  I was even so bold as to post a picture saying "It's baby day!"  Matthew had other plans, and decided to hang out on the inside for one more day, making his debut at 3:12am on May 9.  This was just his introduction to the lesson he has been repeating many times over the past year.

As Matthew turns one and isn't considered a "baby" anymore, I know the developmental questions will get more common.  A typical one year old has at least a couple teeth, can walk or cruise around on furniture, maybe says a couple words and is transitioning to eating table foods.  Matthew has zero teeth, isn't even crawling yet, has good pre-verbal skills, but no words and will only eat baby food.  And you know what, we are incredibly proud of him!

I don't focus on the things he can't do, I focus on how far he has come and all the amazing things he CAN do!  He can sit up by himself, which is a huge victory for babies with low muscle tone.  He just started waving, and I dare you not to smile when he waves at you with one hand facing out and the other facing himself.  He has made it almost 8 months without having to go back on oxygen.  He has slowly, but surely, grown to a whopping 14 pounds.  He sleeps through the night (knock on wood).  He takes naps in his crib, which I thought may never happen.  He eats puréed baby food like it is going out of style.  He drinks from a straw cup, which none of my other kids could do when they were one.  He signs "all done" when he in finished eating and can tell you how big he is, if you are lucky to catch him in the mood to perform.  Every single milestone he reaches is that much sweeter because we know he has to work extra hard to get there.
 

I've said it before, and I will say it again, Matthew's future is bright!  We will fight for him and make sure his potential isn't stifled by low expectations or people focusing on his weaknesses.  We don't know Matthew's strengths yet, but we can't wait to see the person he grows to be and we have no doubt that he will change the world.

And now for a quick medical update.  It's been four months since my last post, and you can definitely take that as no news is good news!  Matthew has been doing amazingly well.  He hasn't had any major complications or illnesses, and we are so thankful!  After the year we had, we have enjoyed just coasting along (with 5 kids) for the past few months.

We made our way up to Kansas City for Matthew's one year checkup last week, a little early because of scheduling conflicts.  We saw 4 different doctors who were all impressed with how he looks and sounds.  We saw a pulmonologist for the first time, and she asked us 100 questions and he seemed to pass her test.  She said his lungs sound great and she was pleased with all his progress.  The only concern is that he has a slight elevation in his diaphragm on the right side where it was repaired.  Apparently it was also present when we were there six months ago, but the doctor we saw then didn't mention it to us at the time.  Because Matthew is doing so well and not showing any signs of a struggle to breathe or any other symptoms, they are just going to check on it in a few more months. If it is worse, or if he shows any symptoms in the meantime, we will have to talk about doing another surgery.  I left the appointment feeling a little bit discouraged, but was reminded by the doctors that he really is doing very well given his start to life.  We didn't get the all-clear we were hoping for, but it was overall a good appointment.  We will go back in September to visit the Down syndrome clinic and then to get a chest x-ray and checkup with the neon clinic.  Fingers crossed that his diaphragm strengthens and that we do not have to have any more surgeries.

Now the countdown is on to Matthew's first birthday!  We will be celebrating him all week, and I can't wait to share all the joy and excitement with you in a new post very soon.  We are so grateful for all the love, support and prayers that we have received.  We could not have made it through this year without our village.

A New Year!

Happy New Year!  Matthew has been so busy over the last couple months that I missed a monthly update.  You are in for a treat, because I have SO many pictures to share with you.

Before I get into the normal update content, I would like to take a moment and reflect on how far we have come in a year.  On January 6, 2017 we learned, with 99.999% certainty, that our little boy would be born with Down syndrome.  I will never forget, as we drove home from the doctor, J.P. said to me "God has been preparing us for this for a long time, we just didn't realize it." His words were so true.  Three days later, we learned that he had a heart defect and a diaphragmatic hernia that would require surgery immediately after birth.  It felt like the odds were stacked against our baby.  We were so filled with fear of what lied ahead.  But we knew one thing for sure:  we would love this baby and do everything in our power to give him the best shot at life.

I wish I could go back in time and tell myself that everything would turn out fine.  That we would get to bring our sweet baby home.  That he would be healthy.  That he would bring so much love to our family.  That he would make us appreciate the little moments more than we ever could have without him.  That normal would never again be taken for granted.  I wish I could save myself from all the worry, fear and tears.  But without all that, we wouldn't be where we are today.  I am so grateful for this new year and all the possibilities that lie ahead for Matthew and our entire family.

 The past year has been a rollercoaster, and we are happy to be off that ride!  Every night that we have all seven Szafranskis under the same roof feels like a gift, one that I won't stop appreciating any time soon.  The goal for this year in normalcy!  We are hoping for no major life changing events around here (except for maybe winning the lottery or something fabulous like that).  We have settled into as much of a routine as you can have with five kids.  We get to go to our kids sporting events, and school pickup and work on little projects around the house. We are planning a summer vacation.  We are so grateful for all of these little normal moments.  

Matthew is now 8 months old!  His little personality is really starting to shine, and we just can't get enough of him.  Over the last couple weeks he has started to laugh at people (not just when tickled).  When he is in a good mood he will just laugh at everything!  He is such a happy little baby.  He has turned into a bit of a Momma's boy, which is just fine with me!  He gives J.P. the biggest whole-body smiles when he gets home from work, they just melt me!

On the developmental front, Matthew is working on sitting unassisted.  He can sit for several minutes propped up with his weight on his hands.  We work on balance and core strength every day, and I am just waiting for the day he lifts those hands up and doesn't do a faceplant.  It could happen tomorrow or not for another month or two.  He LOVES sitting up to play, so I am hoping he will get it figured out sooner rather than later.

Matthew started eating baby food shortly after he turned 6 months old.  It took some time, but he has gotten really good at eating baby food off a spoon.  This seems like something simple, but for may babies with Down syndrome eating is a big challenge.  We will soon move on to different textures, but we feel encouraged that he hasn't had any major aversions so far.  Our tiny little guy needs every calorie he can get.

At Matthew's six month checkup he had bloodwork done to check his iron levels and thyroid.  These are tests that are recommended for all kiddos with Down syndrome at that age.  One of his thyroid levels came back slightly elevated, so he was referred to a endocrinologist.  Our doctor, who also happens to be our neighbor, went over what we are looking for and how it can be a bit challenging in people with Down syndrome.  Many of the common symptoms of hyper or hypothyroidism are also common characteristics in Down syndrome: dry skin, constipation, slow weight gain, etc.  He ran a more thorough test and all of Matthew's numbers came back normal.  We will continue to see the endocrinologist every three months to keep an eye on his thyroid.

I wish I could say that Matthew had a wonderful and merry first Christmas, but that wasn't really the case.  Matthew started feeling bad a couple days before Christmas.  He developed a nasty sounding cough and just felt crummy.  Our amazing pediatrician met us at his office on Christmas Eve to check on Matthew.  I was terrified that we were going to be sent to the hospital with RSV.  Thankfully, Dr. Daley put him on some a steroid and sent us home!  We ended up back at the doctor for a chest X-ray a few days later, but that came back clear as well.  It just took our little guy a long time to fight off his first respiratory infection.  We are thankful that he didn't end up back on oxygen or in the hospital.  Between his under-developed lung and Down syndrome, he is at an increased risk of complications from respiratory problems.  It was so sad to see our usually smiley little guy not even crack a grin for a couple days, but made us so happy when he got his smile back!

Before I sign off with you for this update, I wanted to talk about one more thing that is near and dear to my heart.  During one of my October posts I discussed how we received our diagnosis and that is was a relatively positive experience.  Unfortunately, only 11% of parents who receive a prenatal diagnosis report having a positive experience with their doctor.  That is a day that will never be forgotten, and is the first impression of Down syndrome for many parents. If a Down syndrome diagnosis was immediately followed with information and support it could change lives.  It could save lives.

The Down syndrome Diagnosis Network is a non-profit online-based network whose mission is to support new and expecting parents of children with Down syndrome by providing information, connections and support.  I am a member of one of their parent groups whose members are all parents of kiddos the same age as Matthew.  It has been an invaluable network for me to connect with other people who are on a similar journey.  Every year the DSDN hosts a retreat just for moms who have small children with Down syndrome.  It is a chance for moms to connect, inspire and recharge.  This year the retreat is in Phoenix, Arizona in September and I am hoping to go! 

I will be fundraising over the next couple months for DSDN.  I believe they can make a huge difference in the lives of all families touched by Down syndrome.  They also offer incentives for fund raising, so if I meet my goal of raising $5,000 for them then I will be able to go to the retreat free of charge.  I would greatly appreciate your support in this amazing cause!  Click here to donate to my fundraiser.  

Thanks for sticking with me through this long post! Now here is cuteness overload in the form of tons of Matthew pictures from the last couple months.  Mighty Matthew now has his own Instagram account, so if you would like more Matthew pics in your daily life follow along!  You can find him @mighty.matthew.  

Cheers to health and happiness in 2018!!