Call the Midwife-my love for “Reggie”

When I was pregnant with Charlotte Grace I happened to discover an amazing show, Call the Midwife. I would binge watch, feet propped, munching Sour Punch Straws all the live-long day. I think what drew me in was the beautiful way the writers seem to find those outliers in society-the ones who are marginalized, judged and often outcasted and give us glimpses into their lives to create such wonderful compassion for them. I also may have had a fascination of the birth stories since I had not experienced natiral birth with Aubrie and was so hopeful for a natural delivery with C.G. (which I was miraculously blessed to have…I swear everyone in the hospital looked at me like a unicorn for being allowed to have a VBAC).

I digress.

In season 6 episode 5 a new character is introducted; Reggie. Reggie has Down syndrome and I immediately was drawn to his character. He is loving and considerate and gentle. And he loves his mama. Who wouldn’t love him? His vibrant red hair and quaint framed glasses may have had my heart immediately anyway. In the 1950’s based story, Reggie’s mom passes and Reggie, likely in his 20s, is sent to live with his closest of kin, an uncle who is one of the supporting characters. Reggie goes to him for daily caretaking- food, clothing, housing. It was simply understood because in those days, many people with Down syndrome were unable to work . Not because they weren’t capable but because people often misunderstood them. They didn’t know how early intervention of speech and physical therapies can alter the projection of their lives. They didn’t see that their gentle-calmness didn’t mean “unable”. They didn’t yet know exclusion wasn’t the best option. Or, maybe, it was simply because of the worry of the stress work would have put on their, then, fragile bodies. I recall watching “Reggie” and his gentle way of speaking to others. I remember thinking how glad I was to live in an age where people with ability differences are given more than a diagnosis and a timeline for life. Though, unfortunately, that old way of thinking still does sometimes occur.

Of course, at the time I was so immersed in the show, I had no idea exactly just how glad I was for this generation’s understanding because we weren’t yet aware of Charlotte’s Down syndrome. We had no clue what life was about to bring us-the joy of this charished baby girl.

 

Today, people with Down syndrome have a lifespan of about 60 years (in 1950 it was just 12-15 years). In Charlotte’s life I look forward to that number increasing to match the rest of society.

Today, people with Down syndrome often live on their own, fully supporting themselves with paying jobs they are qualified for because they have training or certificates or college degrees thanks to people like Melissa Rodriquez Pantoja and Holly Rogers Hoffman at University of Houston who teach adults with disabilities. Also, an unimaginable number of community nonprofits spend their lives trying to work toward this goal with people who have all kinds of ability differences. Easter Seals, Home Place Of Texas, Reach Unlimited, Special Angels (to name a few)

Today, people with Down syndrome enjoy healthy relationships and even get married. They are grocers, baristas, actresses, crafters, chefs, business-owners. They are friends, sisters and husbands and wives.

Tomorrow, what else could be possible?

Please support Down Syndrome Awareness by supporting the non-profits that provide the resources and care to make these dreams possible.

Please make a donation today to support our girl. Donate to our team here!

Fearfully and Wonderfully Made

It’s Down Syndrome Awareness Month. For weeks I have spent hours trying to come up with the very best ways I can help others understand Down syndrome. I have considered what would be most impactful, what information and statistics would best fit our family and what Down syndrome means to us.

Charlotte Grace is almost nine months old. The day she was born was the most beautifully orchestrated event-one I never could have planned. Very rapidly, though, our girl’s health declined in the hospital and we had no understanding of how or why. Soon, what felt like a two-week eternity, we were informed Charlotte had Down syndrome. Testing and poking and bloodwork were the norm inside NICU- and I prepared myself for a lifetime of doctor’s visits. I knew this because I had a community of families and colleagues from nearly a decade of relationships who had shared with me their stories of those like our family. However, the many hours of medical care is one area of DS life I’m pretty sure most outside this community aren’t aware of.

Our girl has been lucky. Healthy heart. Healthy blood. Many babies born with Down syndrome have weakened immunity, hearts and are more prone to blood cancers. Many babies with Down syndrome and their families struggle with far more appointments and worry than we have thus far but one thing I’d bet we all have in common is that we all spend countless hours in waiting rooms, innumerable minutes coordinating visits to this doctor and that radiologist, this check for cardiology, urology, ENT, audiology, physical therapy, speech therapy, and, coming soon to the Lewises; water therapy. It can be overwhelming at times and very often lonely, simply because we’re too exhausted to give self-care or spend time with loved ones. But here’s why I share. Not for pity. Quite the opposite.

When I consider these things, it may seem like it’s all for a fix- to fix our girl, to repair a damaged body caused by some inexplainable segment of time that inevitably means a lifetime of searching for a “cure”. Why else would we push ourselves to the utmost limits of sanity putting our precious babies in these tough circumstances if not for the hopes of correcting a mistake?

My daughter is not a mistake. Neither is her body. Her body is not made the same as mine or yours but that doesn’t mean it’s wrong. It means her body needs understanding, not correction.

“…she is already made perfect in Him, I just don’t know exactly what that means yet.”

She is already fearfully and wonderfully made. She was created in His image. I am charged, as her mother, to help others understand her in whatever way that takes form. As I spend limitless time researching things like methylation and the intricacies of how synthetic vitamins impact her tiny body, I remind myself she is already made perfect in Him, I just don’t know exactly what that means yet. The world doesn’t know exactly what that means yet.

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Down syndrome awareness is not about a cure. It’s about raising funds to provid resources to people who can help the world understand those who have Down syndrome.

“…she is a good and perfect gift and so very fearfully and wonderfully made.”

So today, as I sit in the lobby at Texas Children’s Hospital once again-waiting for Charlotte’s urinalysis and kidney reflux results, I remember that she is a good and perfect gift and so very fearfully and wonderfully made.

Please consider making a donation to our local Down Syndrome Association so the future of our world can know more about our precious Charlotte: The Lewis Pride Team

A Brave, Beautiful Sibling to a Girl with Down Syndrome, School Days

It’s a bitter-sweet day. Today is our Gal’s first day of first grade. Today she boldly started at a brand-new school, with brand-new teachers and brand-new friends. Today she is growing up just a little bit more.

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I was fortunate to spend the past couple of years teaching at the private school where Aubrie attended.  We love that school.  It was filled with a love that is unmatched in our books. The teachers were intentional with their time, likely because they only taught two days a week and cherished each moment with their students…I know, because I was one of them. This schedule allowed me to spend the other three days teaching my own daughter at home and have precious time with her while she got an amazing education that fit her and our family. There are many choices for education out there: five-day-a-week programs, homeschool, university model…they all have their pros but, for us and our energized 6-year-old, having the structure of a class some days and the flexibility of home days the others was like finding a diamond amongst the stones. The leaders took a genuine interest in, not just the students, but the families that attended as well. When Charlotte was born, and Josh and I spent the two weeks in NICU, not a meal went by that we had to concern ourselves about.  Every meal was brought to either the hospital or our home by our sweet church or school family.

As we journeyed through the beginning stages of being a “special-needs” family, I slowly but surely started to realized what I knew from the beginning. What I knew was true, but didn’t want to believe, from the moment I was holding my fresh little Charlie in the rocker in NICU with the NG tube up her nose and settling into the idea that she indeed did have Down syndrome;  I would need to leave teaching to give Charlotte the very best of me for her.  Now, let me say, for all you new DS momma’s out there, this was a personal decision for our family. It took me months to make this decision…and unfortunately, kind of last minute because I simply didn’t want it to be true for us.  I loved teaching and I loved the way I still got to be with my Gal so much. To give that up meant giving her into the hands of (perfectly capable) strangers who were not our school family we had grown to love so much. For us, knowing I could be home to do therapy with our Lovie, bring her to any and every appointment that was helpful and ensure I am doing everything within my realm of ability to encourage maturity and health for her, meant letting my Gal grow up a little bit faster than I was prepared for.

 

The day I shared with Aubrie she wouldn’t be going back to her old school, she cried. A lot. She cried about the stuff you’d think she’d cry about. Missing friends, her teachers, even her adoring Principal. But what hurt the most was hearing her sob over the fact that Mommy wouldn’t be with her as much. Gut punch. Frog in throat. That was the moment I could see into the future a little. Looking into that crystal ball I knew so many decisions now had the potential to carry this weight for our sweet big girl. The weight that certain choices inevitably will be made for Charlotte.  And, if I’m honest, it kinda sucks having to make the good, hard choices in life that are going to be better overall but hurt someone else, even for a while.

It made me realize how intentional I have to be with my family now, more than ever.

It made me realize how intentional I have to be with my family now, more than ever.  It made me understand how quickly a spouse or a sibling of a child with ability differences can feel pushed aside through all the day to day tasks that happen simply because the needs of that person with special needs have just that…special needs. I made it my goal for the rest of the summer to ensure that Aubrie got her special time too.  To be mindful of her feelings, to generously share my time with her, to give her my undivided attention as best as I could, but forgive myself when I couldn’t.

Then, about a week ago, Aubrie found her joy again. She was excited to meet new friends. She was nervous to meet her new teacher but quickly learned how amazing she is. She was excited about not having to wear school uniforms anymore! She made a best friend almost instantly. Then, one evening before school started, in her young and precious, child-like wisdom she said to me, “Mommy, I’m glad you’ll get to be with Charlotte for her appointments. And I can’t wait to come home to spend time with you guys every day.”

Today was her first day of first grade. Today was a day full of promise and hope. Through these times and trials I get to be able to witness her stepping into the person I know she is maturing into; a wise leader.

And so I know it will be ok. I know that when I have to make those good hard choices Aubrie will grow up understanding and believing she is loved just as much as Charlotte. I know both my girls are loved by others, no matter where they are.  I know at the end of the day, I love them (both) more than I did the day before.

 

 

 

 

We Started a Blog About Our Daughter’s Down Syndrome- Why We Hesitated…

Almost seven months ago we began a journey. A lovely, hard journey. One that included a perfectly knitted-together baby girl who was gifted to us after a very long wait. A journey also filled with lows and fear and self-doubt. I can remember sitting in NICU. That’s practically all I did for fourteen days; sit, and worry, pray, and cry and pray some more. Time had escaped me. The world had escaped me. I was in this vortex of confusion and worry for our baby, yet I had joy.  I remember feeling a twinge of emotional force. I felt propelled in a direction I had not expected and, if I’m honest, I resisted it. I didn’t want to recognize it for what it was.  There were times I simply would have rather crawled into a hole far, far away from many people who loved me well because saying it aloud would give it purpose and giving it a name meant giving it life. Quite frankly, I was afraid of stepping into that life I knew was waiting for me, for us, on the other side of our joy-filled grief.  But, as a propelling force can often do, it thrust me forward and I gave in. I am so thankful I had the courage to do so. We started this blog.

I hesitated, for quite some time actually.  I kept telling myself “No. You don’t want to expose yourself or your family like that.” “What if people don’t (care to) understand?” “What if people think I’m making myself/our family out to be a martyr?” “What if they think our life is simply all one gigantic sad scene from a daytime drama?”

No. No. No, no, no. I simply needed to know I was doing it for the right reasons. These are not them:

To cast a spotlight on my child.

She is beautiful. She is uniquely made. She is a “masterpiece”. But so is our other daughter, Aubrie. Charlotte is our Lovie Dove. She is so precious to us but that doesn’t make her more or less important to us or more or less loved by us than anyone else in our family or even in our community. It just simply happens that her story is one that we want to share to give others hope.

To generate income.

Money has never been a driving force in this family.  We know and trust we will always be provided for.  As someone who has spent the past decade in education or ministry my goals are clear; to help others in whatever ways I am capable and called. And I am called. As much as I have fought it, as much as I have said, “Nope. Not happening.” here I am, my path being laid out before me. I follow those nudgings, even if I do it cautiously, I will always follow. Here I am. Send Me.

To draw attention to ourselves.

I hope this life never points back to myself (or our family) and instead always up. Yes, there are times of brokenness and selfishness in anyone’s life. We’re human. This is not one of those times. This is the antithesis of that. This is our family, The Lewis Pride, being selfless and vulnerable in ways that may make us feel uncomfortable and awkward sometimes. We may even make other people feel uncomfortable and awkward. We’re ok with that because sometimes we grow most when we’re uncomfortable. Our vulnerability takes strength, strength others may not have yet, so we will lend it to them. (Thank you, mentors and friends, Janet and Doug Newberry for sharing that truth with us.)

 

Vulnerability-Courage

No. Instead, we want others to know there is a protected place. There is a place they can share those feelings so many feel without this unspoken desire to put on a happy face. We get it. We know that feeling of putting on a mask of happiness so others don’t feel uncomfortable with our confused joyful pain (maybe that was just me). In any event, these are the reasons we started this blog:

To know the struggles from a true perspective.

The beauty and struggles are simultaneously real. We have been gifted a precious baby girl, who is so full of joy, loves her people so well already, and happens to have Down syndrome.  We want the world to know her beauty.  We want the world to see her for who she is, not what she has. The emotions feel real, but for us, when we hault our preconceived ideas of what we think she deserves in this life and open our eyes to what is better than those ideas, we understand this way is actually better. (Yes, that is present tense. We need reminders every now and again. We give ourselves permission to fail once in a while.)

To know they are not alone.

Families journeying through something like a diagnosis for their unborn, newborn or child can feel isolated. There are several groups that offer support and resources. We want to be one more way others can know they are not alone in this. We’ve said from the start: our voice only matters if it helps even one person. Our voice matters because of our obedience to use it in the first place…even if it was hesitant.

So religious communities can mature.

We want every community to have access to the resources and tools they need to ensure they never have to make the choice to tell someone with an ability difference (aka “negative behavior”) or their family they are not welcome. Ever. Period. In a time when the worldview is embracing the disability community faster than the church is, maturity in this way is necessary more than ever. Our Lovie Dove is a treasure. She’s our treasure, but she’s a treasure to this world too. If your church community isn’t yet embracing and nourishing this part of the ministry of the very Man we follow, something is amiss. If you read that and you felt that twinge…that’s the feeling I had in NICU. We urge you to not dismiss it. You might hesitate but please ask for help. We’re here.

lioness beside on brown wood

At the end of the day, when I look at myself in the mirror, I can honestly say I am doing what I am made to do. It’s hard. It’s messy. And it is absolutely vulnerable.

Have courage dear friends.

 

PTSD …Our Current Four Letter Word.

You are so beautiful…to me. You are so beautiful….to me. Can’t you see? You’re everything I hoped for. Everything I need. You are so beautiful to me.

What you are hearing in your mind are the lyrics to a wonder-filled song written by Houstonian Billy Preston along with Dennis Wilson, of the Beach Boys, one night at a party (seriously, check it out for yourself). The version we all know, Joe Cocker’s version, seems bittersweet, mourning even. The original, though, was created with the most upbeat, inspirational and jaunty of sounds.

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This song is Charlotte’s song.  I have sung this song to her every single day of her life. She has heard those words proclaiming her adoration since before we knew of her diagnosis.  I sang those syllables when I could barely open my eyes through the tears during the mourning of the life we imagined for her. I rock her to sleep singing it every night and she watches me, anticipating my next sounds……..And I sobbed every moment of it the night I took her back to the hosiptal for a seemingly simple “neurotypical” infant illness.

Several days ago, Charlotte spiked a fever.  She has such a calm demeanor typically that we had no reason to suspect anything was wrong.  So when the caregivers at our church shared she had cried the whole hour and wanted to come find me, I knew in my heart something was very wrong.  Afterward, at home, her fever was 102.1 and climbing. Being a Sunday, calling the pedicatrician was not an option. Tylenol, rest, fluids…  By 11pm, it reached 103 and she was breathing rapidly. And then I was scared, as any mom would be.  Nothing out of the ordinary. I felt as I should, genuine concern for my baby girl and completely unaware of the post-traumatic stress I would soon endure.

Charlotte and Ashley Markgraf

As I pulled into the parking lot of the Texas Children’s Hospital Emergency Room, things began to change in me. There was a tightness in my chest. “I’m just tired and want to get my girl home. We’ll get out of here and I’ll be fine.” Making mental checklists of what needs to happen tends to be my go-to in tough circumstances (at least until I get my head straight and remember to pray) SO…”Turn off the car ( feels like I can’t breathe), grab my purse, open door back hatch (deep breaths), take out stroller (still breathing), get diaper bag, don’t forget the formula that slid out (deeper breathes), Oh, don’t forget the baby (It’ll be ok)……” As I strolled up the under-construction entrance ramp that smelled of musty pine wood I began shaking. The conversation that transpired is hard to recall. Lots of “Please fill this out.”, “Are you giving her enough fluids?”, “How many wet diapers has she had today?”, “I don’t know.”, “I don’t know why I’m crying so much.”, “Can you hold her down?”, “I’m sorry I’m such a mess.” “………catheter…. She’ll probably cry a lot for this.”

But what I felt was major fear. Fear of what they may tell me. Fear of what they may not tell me. Fear of the emotionally disconnected staff and the stupid monitors and unwelcoming gloves. Weirdly, fear of the underlying presumptions they had of the kind of mom I am to my precious girl (probably an admittedly incorrect perception). And in between all the moments of fear I’d just hold her, singing through my tears, Joe Cocker’s version. I mourned this for her; this whole entire event and every single one that could follow simply because she is a beautiful baby who happens to have Down syndrome.  Who could possibly, but may not, have renal function issues.  Who might eventually, but probably won’t, develop Leukemia. She may have a heart defect, but we’re really just not sure yet… so off to the hospital we go with every “neurotypical” baby health issue just to be safe and expose ourselves to the very same environment that so stressed our family just a short six months ago. And we will, absolutely, willingly do so.

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We left several hours later, with a simple UTI diagnosis, antibiotic perscription, and a referral to follow up in two days. Totally “typical”…and the doctor never even questioned her renal function. My my mind was a swirled up mess. I had worked myself into an absolute panic and allowed our NICU experience to over take me in those moments.

PTSD was really real for me that night.  It reminded me of all the lies I’ve so intentionally protected myself, my family and, most importantly, Charlotte from for the past six months.  The lie that she’s different in a bad way.  The lie that says her body is broken.  The lie that breaks this mama’s heart to pieces to consider ever returning to place whose purpose is to give health, but unintentionally provides doubt, and anger and fear….all self-perceived.

But today, I’m choosing to believe my girl is completely healthy and perfectly made. Today I know, without a doubt in my heart, she has great purpose in this world. Today, I’m choosing to sing my girl’s song the Billy Preston way.

A Down Syndrome Diagnosis Should Change Everything, Without Changing Anything- A Dad’s Perspective

Having a new baby is an all-around emotional process. Throw in a two-week stay in the NICU no one expected with a life-changing diagnosis, and you include a whole array of emotions that aren’t usually included in the package.

 

Anger & Frustration

Charlotte came in kicking and screaming at 4lbs 13oz on a Saturday afternoon. I couldn’t have been happier. After delivery, I felt the same as I did after our older daughter was born; relief that everyone is safe, pride in my new child, joy for my growing family, and the love for this child that just came into my life.

This is when things started to be different. Soon came the constant stream of doctors telling us what was wrong with our baby, most notably her size. We knew, due to a recent ultrasound, she would be around 5lbs. That didn’t bother us or our OB at her office, but it sure seemed to bother a lot of people that worked at the hospital. Nurses told us the NICU would be notified, their on-duty neonatologist would come, and they “didn’t like small babies”. 

Of course, she’s small.”, I thought, “My wife and I both have a thin build, our other child was born just over 6lbs, and she’s ok. These people don’t know what they’re talking about.” But for the next several hours, it didn’t stop. They kept undressing Charlotte to take her vitals and constantly mention her dropping body temperature. The logic side of my brain kept saying, “Well, no kidding that’s because you keep stripping my child down to nothing in this cold hospital. OF COURSE, SHE’S COLD.”  

They kept telling us she was lethargic and weak. “Well, yeah, she’s a baby. Stop judging my kid!” Hearing all of the same things over and over but not really providing any real solutions or helping us understand the longevity and seriousness of what seemed simple problems, was actually provoking. Doctors and nurses flooded into the room to tell us that Charlotte needed to go into the NICU to “rest, stay warm and play catch up a little bit on her weight.” It all seemed so extreme for those simple symptoms. 

Then the big ones came. A neonatologist came in and said, ” I think she has Down Syndrome. You need to get her tested.” It was as casual as I just wrote it. It may as well have been my mechanic suggesting that I get my brake pads changed on my next visit. It was infuriating. To me, Charlotte was perfect. Looking back, I was being protective of my daughter. Which is healthy… to a point. But this was only the end of day two.

Fear & Uncertainty

I managed to calm down some the day after Charlotte got to the NICU. I saw the care that the nurses gave to her, and it was obviously their calling in life. However, there was still underlying uncertainty. I knew she was safe, and it was where she needed to be, but I was so uneasy. I was scared that there was something really wrong with her. “Will her body temperature ever regulate on its own?” “Maybe she has Leukemia.” “What’s going to happen between now and the time she leaves?”  “Will she ever get to come home?” 

A week after she’d been brought to the NICU our new neonatologist, who we LOVED,  showed us the symptoms and physical traits she saw and suggested the bloodwork to check for Down Syndrome again. We agreed, reluctantly.  While we waited the days for results one of us was at the hospital around the clock, even overnight. Whoever wasn’t there was with our older daughter, Aubrie. We were exhausted. One day, Arielle and I decided to get some lunch after we met with the doctor, and in all of this exhaustion, Arielle got overwhelmed. I stopped the car right there in the parking lot and we prayed together, asking for the results that we needed to have, and the strength to accept them.

Depression & Disappointment

The “pre-diagnosis” felt like being in a hazy grey cloud. I was depressed. We were tired (an understatement) and ready for our kid to be home. I didn’t want this for Charlotte. I didn’t want this for my kid’s life. I wanted the healthy baby, have a quick hospital stay and go home with pink balloons and flowers and a stuffed animal or two. I wanted her to do regular kid stuff. I was being selfish. Selfish for the life I wanted for her.

Then one day there was clarity. It was almost diagnosis day and we decided to go to the mall with Aubrie to spend some time with her. We grabbed some lunch at the food court. I took a quick look around and caught some people walking by. It was a dad with his two girls. The girls looked to be teenagers, one had Down Syndrome. Her hair was done, she had a Star Wars T-Shirt on, a cool pair of Vans and some crazy socks (I wouldn’t understand the significance of the socks until later.) All three of them had a smile on their face. They were happy. And it seemed that we could all be happy like that one day too. That family of strangers have no idea how much they helped me that day.

Relief, Hope, Pride & Joy

Proud Daddy
Josh with his girls in NICU

Charlotte was released from the hospital on a crisp Saturday in January. By then, my head had cleared up and I was hopeful for Charlotte’s future. I had come to accept that she probably had Down Syndrome. I understood this was going to be our normal now, and that was ok. The doctor gave us the news Charlotte did indeed have Down Syndrome just a couple of hours before we left the hospital, exactly two weeks from her birth. The diagnosis was almost a relief. We now knew the root cause of what had kept her there for so long. Now we knew how to help her.

Charlotte came home and had a string of follow-up appointments with her pediatrician, cardiologist, ophthalmologist, Ear, Nose and Throat, Physical and Speech therapy. Each one amazed at her overall health. She is true to the meaning of her name, “Mighty Warrior”. I couldn’t be more proud of this little fighter. She brings joy to everyone she meets and is getting quite the little personality. Her smile makes my heart skip a beat, I can’t wait to see her awesomeness.

If I can offer some hope; It’s alright for negative emotions to creep in. It’s life-changing. Just don’t stay in them. Make sure you, your spouse and family are a team. Be there to support one another, and make sure you are communicating.

Something like a Down Syndrome diagnosis should change everything, without changing anything.

 

6 Lies I Told Myself About My Newborn’s Diagnosis

As mothers, we often carry so much guilt and lies about ourselves. There is absolutely nothing new there. It is as real as the air we breathe and yet just as easily dismissable.

We tried for so long to conceive our precious baby girl. I knew the truth about disabilities because of all my background in special education. I knew real statistics and what “typical and atypical” looked like. I knew accommodations and modifications and early intervention. But more than that I knew the love I could expect.  I knew what a miracle looked like. I had personally comforted many mothers whom previously had experienced the very same thoughts and feelings. All of this came before Charlotte’s birth and yet I still found myself vulnerable to the trappings of these lies:

1. She’s was a mistake.

The Mayo Clinic defines Down Syndrome being “caused by a mistake in cell division.” (https://www.mayoclinic.org/diseases-conditions/down-syndrome/symptoms-causes/syc-20355977). Please know that the information on the Mayo Clinic’s site is 100% clinically true and in no way intended, I’m sure, to cause pain to anyone.  However, in my hurting heart, as I sent information about the diagnosis to loved ones, all I read was the word “mistake”.

The truth: Your baby is not a mistake. Your baby is a beautiful creation. If I had to compare my odds (1 out of 700) I consider myself fortunate to have drawn my baby’s lucky numbers!

2. I did something wrong.

“Was I out in the heat too long?” “I knew I shouldn’t have eaten that lunch meat.” “I was too negative.” “I was so stressed out.” “Maybe if I had exercised more…” “Maybe if I hadn’t exercised as much…” I seriously beat myself up internally in the beginning over every single detail of my pregnancy.  And I NEVER led anyone on to that, which probably caused some pretty serious high blood pressure issues (but that’s another blog for another day). If I had a dime for all the time, energy, and amount of stress I spent over blaming myself for my daughter’s diagnosis…well, as Josh says, “I’d be making money in a weird way.”

The truth: There is only one thing to do. Love that beautiful baby you have been blessed with! They are perfectly created. Seriously. Think about how deep that is.  Per*fect*ly. created. Not moderately. Not, “Eh, he’s ok.” Perfect.

3. People pity her, or (almost) worse, me.

When we recieved the official confirmation that Charlotte Grace did, indeed, have Down Syndrome, the first thought that popped into my mind was, “How will they treat her?” “They” meaning everyone we knew and loved.  Would they love her the same? Would they be there for her the way they are for the others? How will they react when she does ____? How will they react when she doesn’t ____? Will they see me differently now too? It was the most gut-wrenching of it all.  I knew I would love her.  I knew Josh and Aubrie would love her. But some foreign and strange part of me wasn’t convinced they would love her.

The truth: Yes. They dodefinitely, love her.  They don’t always have the right words.  They don’t always know just how to react, or questions to ask, or even if today is a good day for them to ask them. But they definitely, definitely do love her (and us). And that is all that matters.

4. People are avoiding us.

After the emotional roller-coaster of the birth of baby “Charlie” there was a lull, a period after the announcement of her diagnosis that felt like a lack of communication by many family members and friends.  We had chosen to send out an email (which we will share in a future post).  In the email we said we understood if people didn’t quite know what to say and that it was ok. Though, I had an expectation (albeit, a silent one) that people would come out of the woodwork to show us support (and many, MANY did). However, I expected every man, woman, and child to be at our doorstep and crawling through our windows to take over midnight feedings and diaper changes, and bring in a massage therapist and a maid. But that did not happen. Crazy, right!?

The truth: It took me some time to understand, but I had not thought that others may have to go through the same grieving process that I did. We are so good at manufacturing an idea of the journey our lives should take that we often don’t realize we do it for other’s lives too. When the lives of those closest to us don’t turn out how we envision, we grieve for them and sometimes that looks like silence.

5. I need to stop working.

This one was particularly difficult for me. Upon the delivery of Charlie’s diagnosis, I knew in my heart 100% I needed to quit my job. As an elementary school teacher smack-dab in the middle of a school year, I also knew in my heart 100% I needed to to return to work ASAP.  Luckily, I was very fortunate to work for a school with wonderful (read: amazing), caring (read: loving), and flexible (read: generous) administration. They worked with me so I could teach two days a week and could be home with my girly to do therapy the other days.  This was an ENORMOUS help and a true blessing for our family. However, I never could quite shake the burden on my heart that I needed to be with my girl ALL.THE. TIME. I wanted to be with her more than I ever felt the need to be with my older daughter (How’s that for some mom guilt?). I always thought Aubrie came out of the gates running, if you know what I’m say’n. Charlotte just “needed me more”, right?

The truth: Kids (ALL KIDS) are resilient. If you chose to go to work, find a caregiver you can trust to implement the therapy techniques with your little one. If you chose to stay home, love that baby and the workplace will be totally fine without you. Let go of the guilt either way.

6. I can’t be joyful and grieve at the same time.

Ohhhhhhh…..This lie.  This lie was the biggest of all. It was by far the hardest to overcome. I still struggle with it and probably will for a very long time. It’s such a complex range of emotion. In the first group outings with friends and their kids, we would talk about Charlotte and I would immediately start crying. The only way I could articulate my emotions was to say, “Please don’t misinterprete my tears. I am joyful and I love my baby girl.” But I would always be afraid people would think we felt burdened by her. I was scared that others would never understand that we had joy, we were just grieving the life we dreamed for Charlotte. The joy we have for her is insurmountable.  She was a gift to us after years of praying and we treasure her deeply.  There is absolutely nothing we would change about her and that includes her having Down Syndrome. BUT. We had plans for her life. We planned for her to go to this school, and take these classes. We wanted her to complete Driver’s Ed this way and in this timing. We expected her to have typical dating experiences with the great big teenage years full of girl drama and utter disdain for her parental units. We thought she would grow up and move on to college…and a career…and the All-American Dream….That was our plan.

The truth: Charlotte is our girl. And that means that she gets to have her own life story. She gets to make choices and discover her identity. She gets to find her strength and talents and gifts. She gets to determine when to put her full trust into the One who says who she is (and she will). She gets to say when, and what, and if this school or that one. She will decide her path, her purpose, and her plan. 

And that’s when I remember that this plan…His plan…is so much better than the one we could have ever dreamed for her.

 

Angel baby