Club Twenty One

I'm not one for big social gatherings, particularly not one my own in a group of people I've never met before. It's one of the many (and MAJOR) ways that being Mildred's Mommy empowers me to be more bold and more brave than I would be on my own. So when Britany, a mama I had met exactly ONE other time, invited me to join her for a mom's meetup event for Club Twenty One, I still am surprised I said yes, and went with her.

We drove together (because God knows I would not have walked up to a group meeting I have never been to completely on my own!), and hauled our ass..ets all over the park trying to locate the one place we hadn't walked past (surprisingly) where the group was meeting. I anxiously said hi and gratefully followed someone's directions about filling out name tags and then spread out a blanket among the rest of them and sat to picnic with my girl. I remember that I left that event feeling loved, and understood.

Overwhelmed by the schedule of therapies, work, and school, it was months (I think 3 months?) before I was able to make it to an actual weekly meeting. I went all by myself this time, inspired by a desire to attend the sign language class they were offering that Friday morning, and an unprocessed need for community. I pulled myself up from my bootstraps, and talked myself down from a panic attack as I walked alone up to a random Church building looking for the group. I walked to the wrong side and a Church volunteer pointed me in the right direction and I finally spotted a little sign: "First Steps - Club 21." I was so anxious about figuring out what I was supposed to do and how it all worked and when I walked through the door - I'll never forget it - Rachel (one of the volunteers) greeted me by name.

It makes me cry when I think about it. I was a stranger, and yet they welcomed me as family. I felt known, understood, relieved to be around other children who are like my baby, and other mothers who have walked the same path. My heart rested. This was home.

I left that meeting completely filled to the brim with love, and excitement, and courage. I tried to explain it to my husband, through tears, on the long drive home. My husband, my parents... they were excited for me, they were glad I had found this group to participate in... but the didn't quite "get" it. I invited all three of them to come with me to a meeting (individually), on their own terms, and waited patiently until each one of them found the right time for them to join me. One by one, I watched each one of them fall in love with this new family I had found in the same way I did. Somewhere along the way, I realized what had happened:

We had found our tribe.

These families know first hand what it is like to hear the doctors tell you that your newborn baby, "is showing markers for down syndrome," and to spend the first few days of your baby's life flooded by confusion, fear, questions. They, too, have fought for their child to have access for services and therapies to help them to overcome difficulties that often are associated with Down syndrome. They know the highs and the lows, the ins and the outs, and they want to stand there with us, and we want to do the same for them.

I feel so grateful to be a part of club twenty one - both in the general sense, and in the specific-to-this-organization sense. ;) I can't speak for ALL of the things they do/offer, but I would like to share the things I know about:

Weekly meetups at each age group from Birth (expecting mothers) into adulthood
First Steps (0-3 meet up group that we attend) provides OT, PT, SLP, and Sign Language Classes monthly
Twice a month parent education classes
Mom support/ Dad support groups
Siblings group for the typical (non-Down syndrome) siblings
Social outings for teenagers/families
Community outreach
IFSP (Individual Family Service Plan) coaching/training
IEP (Individualized Education Plan) coaching/training/advocacy support
Family Support

And one last thing that I have to highlight because I think it is AMAZING:

Club 21 has developed, implemented, and administers a 3-day Teachers' training conference in which they present current, up-to-date research about Down syndrome, intelligence, learning, and education methods. They teach teachers how to better serve and educate students with Down syndrome! AND - they PAY the school district the sub stipend so their classroom can be covered for them to attend the conference! They have trained over 100 educators in over 50 different school districts. Think about the impact of a program like that!

Club Twenty One is founded on a principle of inclusion. Their mission statement is as follows:

Our mission is to provide the tools and resources that enable individuals with Down syndrome to be fully included in society. Our goal is for every individual with Down syndrome to have independence, access, and belonging.

I don't know about you, but THAT is a mission I can get behind. So, to support this mission, and give back to our tribe, we will be participating in their annual "Together Is Better Walkathon" to raise funds, and awareness. We're SO excited for this day of celebration and community.

If you would like to join us, you can find our Team page here.
You are welcome to join us for the walk which is Sat 10/22, and if you would like to donate to our team and help us meet (or exceed!) our goal. If you can't donate, you're still welcome to walk!

Photo credit: ADVTR Photography

Meeting the milestones

Mildred was 6 months old when we traveled to Stanford, CA for Thanksgiving with the O's and the usual obligatory family holiday tailgater for the Stanford/Notre Dame game (Go Irish!). It was the first time my brother-in-law was able to meet Mildred, and I'll never forget what he told me:

"Raising a baby with Down syndrome is the same as raising a baby without Down syndrome. You'll get to all the milestones that a "typical" (non-Down syndrome) baby will get to, its just on a different timeline."

Having four children of his own, one of whom having Down syndrome, his perspective was gold to me, and I have come back to his words time and time again, and know I will continue to revisit them in the future. Remember what I said a few blogs ago? "You don't know what you don't know." Yeah. That.

 

As much as the unknown of what to expect from Down syndrome was challenging, Mildred is also our first child and so there was a constant questioning of what normal is. And not only what is normal for Down syndrome development, but also what is normal for babies in general. It was a constant tangle of questioning what was typical, what was Down syndrome, and where the distinction was between the two. I know I must have driven my sister-in-law crazy asking questions about Timothy (my nephew who has Down syndrome) because I was constantly wanting clarification about what was "a DS thing" and what wasn't. She was so patient and gentle, even though she may have been frustrated or offended, she never showed it. I hope I have offered the same graciousness to the people in my life (myself included) wrestling with those questions.

It is this desire to put everything in a box, to label it and know how it is going to proceed - what it is going to look like. It's so confusing! And I think, perhaps because I was a first time parent, there was extra confusion because I didn't have the ability to anticipate what was next (although I will say that I am grateful, and God knew what He was doing). I found that I was (mostly) able to feel very optimistic and excited about the growth that Millie was making, and the ways she was advancing. Every day I was floored by her, and even though our expectations were high, it was amazing to see what she was capable of time and time again! 

...until I was around other people, especially other babies.

Four of my very best friends and I all had babies within (nearly) the same year of each other, and 4 of the 5 of us gave birth within a 6 week window of each other. (It's super cool, I totally recommend being pregnant at the same time as your besties!) What that meant for me, however, was a built in measuring stick every time we were together. My friends are really the best kind of women, and friends, and I don't know that they ever realized this was happening, I know I wasn't able to articulate it at the time. Being around other children that were the same age as Mildred, who didn't have Down syndrome, felt like shining a massive spotlight on all of the ways Millie was different, or behind. 

I want to be very clear here: not one time did ANYONE in my life express anything other than support, love, and pride at all of the progress Mildred was making (and has made). Not one time did anyone compare milestones as a means of measurement of superiority, I am blessed beyond measure by the support in my life, but that doesn't mean the comparison monster didn't rear his ugly head in my own mind and heart. The strange thing about the whole experience was that I would feel almost as if everything was "normal" and nothing was wrong at all, until we were out in public and there were other babies to compare Mildred's development to. In public, next to other kids her age, it was if all the secrets were exposed and I felt vulnerable.

All of this goes to show how much value and worth we (I) still attribute to accomplishment, ability, achievement. Having a child with Down syndrome has challenged my concern with the opinions of others, and my anxiety about what other people are thinking of me. I have had to really look at an evaluate my own ability to love unconditionally, and try to refine the conditions that actually are at work on the measure to which I am willing to love.

Mildred challenges me.

She challenges the deepest parts of me.

This challenge comes not from the conscious choice to learn how to love this "imperfect" person; but rather, from the perfection that she is and the way that it challenges, stretches, perfects, the imperfections in me. 

My prayer is that, through being Mildred's Mama, I can learn to love unconditionally, that I can see with eyes that are so consumed by love, that they don't seek to measure.

Tomorrow: Range of Development for people with Down Syndrome, and sharing Millie's progress in meeting those milestones. 

Go Irish!

In which I tell you all the things - DS facts

"...but Maegan, apart from cute babies, what is Down Syndrome? What does it do? What does it mean for the people that have it?"

GREAT question, readers! I'm SO glad you asked! ;)

Let me share with you what I knew about Down syndrome before I had a child with Ds:

Down syndrome is the common name for a medical condition called Trisomy 21.

Most people have 46 chromosomes, (23 from Mom, and 23 from Dad), that come together to make up the unique traits of each individual person. People with Down syndrome contain a whole (or partial) EXTRA chromosome of the 21st order. (ha! ;) so... that 21st chromosome is TRIPLED, hence: TRIsomy 21.

People with Down syndrome are just a little different from people without it. 


Annd there you have it! The extent of my expertise on Down syndrome!
Most of what I have learned, I have learned by necessity. I think that's important for new and prospective parents to hear. You learn what you need when you need it. You might learn some stats, and digest some information, but the real meat of what you need to know comes with necessity. You will learn, just like I am! You don't have to be an expert.

So, let's learn some things:

source: http://brandongaille.com/16-stunning-down-syndrome-demographics/ (2015)

I'll share more in upcoming posts about our own experiences, etc., but for now I'd like to know what you have learned? Did any of this information surprise you? What would you like to know more about?

Our Scarlet Letter(s)

It struck me last week as I walked down the aisle of the grocery store, Mildred sitting in the cart in front of me watching all the people and all the things (per usual) that so much has changed. I have changed so much. We've come so far in just 16 months, this Millie girl and I.

I vividly remembered walking the aisles of my favorite store (which shall remain nameless, but its logo is a big red target), overcome with a paralyzing uncertainty, wondering what everyone saw when they looked at my baby. I, of course, was infatuated with my newborn love (because what Mama isn't? But also:

yeah. that's what I thought. ;)

I felt like there was this enormous question mark hovering above our heads in true Hester Prynne fashion. I felt the eyes of every new adorer as they seemed to search her closely for answers: "Does she?...Doesn't she...?" I was defensive against an attack that I never actually encountered, but felt that somehow would come. I felt that the whole world could see a diagnosis that I had missed, and I still couldn't see it. I also could feel the weight of people's questions as they fought to keep them inside, unsure of how to ask them. 

I remember feeling desperate for people to just tell me what they were thinking, or wondering, but also being terrified of the answers, or lack thereof - feeling like I owed the world an explanation, but resisting feeling like I was putting a disclaimer on my own daughter.

It is interesting to look back now at that time of confusion, and pain, and postpartum hormones (so many hormones!) and see it with different eyes. What was I so afraid of? So much. I was afraid of so much.

 What will her life look like? Will she be a vegetable? Will she have a fulfilling life? Will she ever go to college, get married, have kids? Will she be able to be independent? Will we always be outsiders now? Is everything going to always be hard and different? Will she still be beautiful? Will people make fun of her? What will her ability level be? What is it going to be like to have a special needs child? 

Here is what I realize now: those questions aren't all that dissimilar from first time (or new again) parents. The difference is how much we take for granted as being a given. The hard truth is that nothing in this life is a given (save for death and taxes, as my Papa Joe would say). Eating, breathing, crawling, walking, reading, speaking, interacting, etc., they are not guarantees. Each of those things is an accomplishment in and of itself, just ask any special needs parents and they'll tell you how amazing each of those steps are. And we so easily forget that health is not a given for any one of us, Down syndrome or not.

Down syndrome has given me the gift of perspective.
Because of Down syndrome, we get to work really hard, and truly celebrate each milestone with gratitude.

So...
when you're in the store and you run into the newly postpartum mom or dad, what do you tell them?

"Congratulations. He/She is beautiful! What a gift!"

because no matter what, they really truly are.

Accepting the Diagnosis, and Going to Holland

Many people ask if we knew that Mildred would have Down syndrome before we had her. I guess the answer to that is: Yes and No and No. You can read about our first ultrasound indicator here, and about our genetic counseling and high-risk ultrasound experience here and here. Yes, we knew it was a possibility. No, we did not do the amniocentesis to confirm/deny a diagnosis. No, there were no concrete indicators on the high risk ultrasound, and the OB told us we had a healthy baby (more on that in another post). 

Here's the raw, vulnerable, (ugly) truth:
I didn't think my baby had Down syndrome. There was no part of me that expected a diagnosis.

I was being honest in my post when I said that we would be blessed beyond measure to have a baby with Down syndrome like my nephew, Timothy. I genuinely believed that! However I also genuinely believed (though I'm not sure I admitted it out loud to anyone), that it was statistically improbable to have two children with Down Syndrome within the same extended family. And I think part of our humanity (or maybe just my own sinfulness), began to operate on this "it's great for you, but it isn't going to happen to me" mentality. On the one hand, I loved every aspect of my nephew, and believed in his capability and was not disappointed in his diagnosis in the least, but on the other hand, I wanted MY baby to be perfect. That's the ugly. That is the part that I could just pretend that I never felt, and act like I'm the perfect Mama who never faltered in acceptance, but that isn't reality and I don't think it does anyone any good to pretend like everything is roses. It just wasn't what I had planned for my life, or for my child's life. 

That isn't the end of the story though, and I want to make sure any moms or dads who are facing a diagnosis and feeling this way know that. It doesn't stop here, with disappointment, confusion, fear, whatever it is you are feeling. It's not worse, just different. This poem, which is a popular one that circulates in the DS community, articulates the experience beautifully.

Welcome to Holland

BY EMILY PERL KINGSLEY

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you never would have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss.

But...if you spend your life mourning the fact that you didn't get to go to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

***

©1987 BY EMILY PERL KINGSLEY.
ALL RIGHTS RESERVED.

So you see,

It turns out... Holland is pretty great, and I wouldn't trade my Tour Guide for anything. :)

Feel free to send/comment any questions you may have, or things you are curious about and I'll try to address them this month!

An Open Letter to my Daughter on Her 6th Day of Life

My little Pearl,

It has been just 6 days since you challenged me to be the bravest I have ever been. At 39 weeks along in my pregnancy, your amniotic fluid was low and they sent me for an induction. After 24 hours, 2 doses of Cytotec, 2 failed epidural attempts, 1 successful epidural attempt, a dose of Pitocin, and an emergency c-section, you came into the world crying. 

It's true what those poetic mamas always say. The sound of your voice (though it was a strange sound because you had fluid in your lungs) was the most beautiful thing I had ever heard, and it awakened something deep inside of me: a love for you, my first child, my newborn daughter, my Mildred Pearl. 

Your doctor began your newborn screenings after they invited your daddy to cut your umbilical cord, but all I could do was wonder what you looked like, how big you were, if you had that full head of hair that I had ordered... Your daddy returned to my side while they cleaned you up and I could hear the nurse telling him that you were struggling to keep your oxygen levels where they should be (you were hovering around 80%) and that they were concerned that you might have an infection. They admitted you to the NICU for observation and care, and your doctor added that you were showing soft markers for Down Syndrome--the shape of your eyes and the thrusting of your tongue--and she ordered a blood test to confirm. 

I caught a glimpse of you as the doctor and nurses rolled you away to the NICU. Your daddy asked them to hold you up so I could see you, six feet from where I was laying while they finished surgery. I cried at the sight of you. You looked just like newborn me. You were my daughter and I loved you instantly.

I didn't see you again until almost two hours later when they wheeled my bed next to yours on my way to a post-partum room. When I saw you, they had your arms and legs strapped down because you were so squirmy and strong, and you had tubes attached all over you. Even in that condition you were beautiful, my new baby. We had to spend the night apart from you, though. Not getting to hold you, was awful. I don't think I will ever forget when they placed you on my chest for our first skin-to-skin time almost 24 hours after you were born. It was heaven. It still is. You, my Millie Pearl, will always be my little glimpse of heaven. 

Over the next several days as you were released from the NICU into our care, your daddy and I soaked up every moment with you and enjoyed getting to know you, discovering all of your little quirks and peculiarities. I spent many of those hours staring at you, trying to see the Down Syndrome that your doctor saw, but I couldn't. Yes, your eyes are almond shaped, but so are your daddy's. Yes, your nose is tiny, but my nose is small too--and you're a tiny baby! Yes, you thrust your tongue, but so did I, and your grandma, and your great grandma too. They're wrong, I thought. Those were all just family traits.

Yesterday, when we took you to your first check up, the doctor told us that your genetic test had come back positive for Down Syndrome. I fought back tears, (mostly from "baby blues", but also, partially, from shock). He gave us an overview of the upcoming appointments that would make sure you were healthy (you are), and left us alone to pack up your things. I cried. I held you close to me. I hugged you. I kissed you. And I cried. 

I want you to know why I cried, sweet girl. I want you to know that I am not disappointed in you. I cried for you. I grieved the loss of things that you might not have in life, and all the hurt or frustration you might experience along the way. I mourned the way some people might react to you, or treat you when you're older. I ached for all the struggles you might have to endure because of your condition. My mama heart wants so badly to protect you, to save you from all of that, and I can't. 

But in my sadness, the Lord whispered a beautiful truth: you are created exactly how you were meant to be. You were knit in my womb before I even knew you were there, and you have had that extra little chromosome from the time your DNA was formed. This is not something that just happened to you on your fifth day of life when we found out--this is an integral part of your creation that we are just getting to know (along with that cute little pouty face you make in your dreamy sleep). 

Your dad and I want you to know some very important things, Little One. We want you to know that you are capable of anything you commit yourself to--just like everyone else. We will help you in every way that we can, to develop your strengths (and strengthen your weaknesses) so that you can accomplish every single one of your aspirations. We want you to know that, because we love you, we will challenge you even when it feels impossible, because it isn't impossible, and you ARE capable. 

We also want you to know how beautiful you are. I have realized that part of the reason I don't see Down Syndrome features when I look at you, is because I just see my daughter, with a tiny little button nose, small, intricate ears, a tongue thrust just like her mama, and eyes, a round face, hands and feet just like her papa. You are more like us than you may (someday) like to admit. I want you to know, that people have told us over and over and over again what a pretty little baby you are. And they're absolutely right! Like a beautiful little doll. Our little love.

The other reason that I don't see Down Syndrome when I look at you, my Millie Pearl, is that Down Syndrome is something that you have, but it is not who you are. You are our daughter, Mildred Pearl, and we love you with a love that is unlike anything we have known before. Many people have told us how lucky you are to have parents like us, and how, "God could not have picked more perfect parents" for you, but I think they're wrong. We know we're the lucky ones. And we are so grateful for all of the things you are already teaching us about love, faith, and joy. Keep teaching us, our pure little soul, and help us to be more like you. 

All our love,

Your Mommy & Daddy

    

Our Very Scary Week

We went to our 20-week anatomy scan with bright-eyed naïveté. (For those of you who either were pregnant before they did these anatomy scans, or are not in the phase of life where you/your besties/everyone you know is getting married and having babies... Let me explain. At 20(ish) weeks it is now customary to have an in-depth ultrasound in which the tech measures and takes images of all the main organs, etc. screening for any potential defects.)

We were so excited to get to watch our little one swim and squirm for 45 whole minutes while the tech snapped away! Ha. In reality, they made Alex wait in the lobby, and I stared at the dimmed fluorescent lighting in the ceiling while the tech pushed, and prodded on my uterus and (full!) bladder for 45 minutes, politely responding with no emotion to my every attempt to break the awkward silence with a witty quip or comment. (In her defense, they aren't allowed to reveal any info or lead you to believe things are good/bad due to liability.) 

At one point, I started to have a mini panic-attack because it seemed to me that she was going over and over the head/heart area of my baby. I thought this because it's the biggest part of the baby- and it hurt when she pushed! She finally told me she was having difficulty getting the baby in a position to capture heart images, and she sent me to retrieve Alex from the waiting room and go to the bathroom (thank God! I had to throw up! #noimnotjoking #mypregnantlife) 

Alex came and stood in the room and tried to decipher what exactly it was he was lookin at on the screen, while the tech chased the baby around a few more times, and then finally gave up. She explained that baby was laying horizontally across my uterus, with it's back facing out (face toward my spine). She explained that she couldn't get the images of the heart she needed, and they would be calling us to come in for another ultrasound, not to panic when we got the call. 

We did leave with this adorable little image of the glow worm that I am apparently carrying in my womb:

And that's as good as the images get! 😁

A week later I received a call from Kaiser wanting to schedule an appt for us with a Genetic Counselor, and a High Risk OB for an ultra sound. Woah. The tech had not said anything about genetic counseling, or a high risk ultrasound. I knew this was something different than just a re-scan for better imaging. But then again, Kaiser is all about protocol and procedure- was this just routine?

I contacted my OB's office and a nurse told me they had found markers on the ultrasound that triggered the genetic counseling and high risk OB appt, and that she would try to have my OB contact me with more info. 

Parenthood is a crazy thing. This baby is not even on the outside yet, and already we, as Mom and Dad, our hearts are

pre-occupied with wanting to protect and care for this little one even now. The "what-if" possibilities were swirling around us. Fear of what health problems our little one may have, whether or not we would have the means to care for it's every need, could we be "enough" for it, as parents? Would this baby get to stay with us? 

I was explaining to a friend yesterday, that this moment for me was my "rubber meets the road" moment. This moment in which I truly had to own and apply my faith in God and belief that ALL life has purpose and value and is a gift, no matter what that life may look like. It was a beautiful chance for me to realize how much my niece Lucy, and nephew Timothy, had grown my heart to be able to take that leap of faith and know it would be worth the risk and the pain. This baby, no matter what, was chosen for our family, and Alex and I could only pray that we could be what God was

calling us to be for it. 

After finally hearing back from the OB with more info about 4 days later (it turns out, she had left me a detailed voicemail before the initial appt call had come through, but I never saw it sitting on my phone), the OB confirmed that the ultrasound had shown potential soft markers for Down Syndrome in the heart and kidneys and THAT is what triggered the counseling appt and ultrasound with the High Risk OB. 

I cried sweet tears of relief. If Down Syndrome is all we have to worry about, then we really have no worries at all! My sweet Godson Timothy has taught me so much in just one year of his life about authentic JOY and love, I cannot imagine my life, or the lives of my future children, without his pure heart and faith to help us be better. With that news, my heart relaxed. I mean, come on, folks! Look at this face:

And his chubby feet and hands... I seriously can't stand it:

So if our little baby is anything like it's cousin... We will be blessed beyond measure. 

(Tune in next time, for the low down on our high risk appts)