Yo soy La Lay

adventures in family, faith, and Down syndrome

Dear Tessa

Dear Tessa,

I’ve been thinking a lot about what I want this to say.  Saved this one for last because it’s got a whole lot of emotions behind it.  Kept it short and sweet so that I don’t become a blubbering fool.

I didn’t know what it meant to be an advocate for someone until there was you.  I mean sure, I have rallied for family, for students, for classmates, coworkers, you name it.  But it all pales in comparison to my drive to be your champion.

There is no corner of my life that was not completely transformed by your very existence.

I want you to know that no matter how long the road is, I’m here for you.  My goal is to be your voice only as long as you need me to be.  All I want is for you to be happy, no matter what happy means for you.

I am not fearful of our future.  I am not worried about how far you will go, or where you might stumble, or how much work there is to do.  I know that there is much to think about and plan for.  I will be brave because you are worth it.

You don’t have to be more alike than different, but you can be if you want.  You don’t have to rock the 21st, but I think you already do.  You don’t have to be a Down syndrome superstar on YouTube or in the news for breaking down barriers.  But if you find a dream, let’s chase it. 

Girlfriend, I adore you.

Wuv yeeeewwww!

Mommy


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#DearDoctor

Dear Amanda,

In the instant you said Down syndrome, you shattered our world into a thousand bright and beautiful pieces.  I had labored, fast and furious, and in the chaos of her birth, with all of the noise, the oxygen, the vacuum, the frantic prayer to cry, baby girl, cry, there was then stillness.  And quiet.  And grasping for understanding.

I was not fully present when we first heard the words “Down syndrome.”  I was in the final stages of labor, so very far from my husband and my baby.  I overheard the words across that room – that giant, cavernous space.  I pushed away from my bed and propped on my elbows, trying desperately to hear.  My husband is not a good listener, you see.  And he was there and I was not.

It felt nonchalant, the pronouncement.  I often wonder if everyone in the room already knew and thought that we probably knew, too.  We did not have time to process.  In an odd turn of events, suddenly my mom was there and we were moving forward and there were tests to be done and then I was in my recovery room without a baby, listening to a genetic counselor tell us about how soon we would know for sure.  “Look, I’m telling you she has it.  There will be a blood test to confirm,” she told us, “and I’m going out of town, but my intern will call you.”

The first moments when a parent hears the words “Down syndrome” are jolting.  The delivery of a diagnosis sets the tone for how those first weeks will go, how information will be processed – and in many cases, will have a profound impact on the life of that little baby.  In that delivery room, in that moment, your relaxed and matter-of-fact proclamation made this diagnosis seem irrelevant – and it didn’t feel like it should be.  Now, it seems that you were right, that Down syndrome is a distant second to Tessa and her personality and big, toothy grin.  So I thank you for that.  It is part of her, but is not her.

Every mother in the Down syndrome community, whether her child is two or sixty two, can tell her diagnosis story like it happened yesterday.   Please help us make those stories powerful, not because they are devastating, but because they are positive.  While our own diagnosis story is by no means grim, note that the guidelines published by the National Society of Genetic Counselors recommend telling both parents, together, at a time where information can be shared and processed appropriately.  A balanced, open dialogue that includes current and relevant information about the potential of individuals with Down syndrome, as well as their influence on the family structure, can go a long way in changing perceptions about Down syndrome for families, as well as in our society as a whole.

You see, while our world seemed shattered on that day, with information and support from the Down Syndrome Diagnosis Network and our local groups, we have built those shattered, beautiful pieces into a life far more vibrant than we could ever have imagined.  Your part in that story is etched into our hearts forever, and I invite you to join us in helping others start their journey surrounded by all the love and support that is available.

Thank you,

Maggie

To provide anonymous feedback to your physician regarding a Down syndrome diagnosis, please use the Down Syndrome Diagnosis Network’s Physician Feedback form, found at  http://www.dsdiagnosisnetwork.org/feedback.

Connect with the Down Syndrome Diagnosis Network if you have a young child or are expecting a new little one with Down syndrome for information, connections and support. www.dsdiagnosisnetwork.org

 


 

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Dear Ellie

Dear Munchie,

This is a picture of you at your Big Sister class, before Tessa was born:


We couldn’t tell that day if you were ticked off that you were getting a sibling, or if you were insulted that we thought you needed to learn anything about taking care of babies.  From the get-go, you told everyone who would listen that it was a girl baby in Mommy’s belly and that a boy simply was not a possibility.  Thank goodness you were right.  You are not so easily convinced of the things that you do not believe to be true.

For example, when we ask you about Down syndrome and what might be different about Tessa, your only answer is that she has more strings than you do.  You seem to not notice the little differences that set her apart – and when other kids point out her braces or her walker, I love how you so matter-of-factly say “well she just has them.”  Like duh, of course she does.  Why wouldn’t she?

The child who asked us about medical marijuana because she heard it on the radio, and who is surrounded by talk of therapists and doctors and IEP goals, has no reason to believe that Tessa is any different than anyone else.

I am so proud of the model you are for others by just playing with Tessa as you do any other child.  Sometimes you get mad at me when we treat her differently.  Like this morning when I told you to stop putting so many puzzle pieces in front of her because it was too overwhelming.  You just looked at me, then continued to stack them in front her. “It’s part of her lesson, Mom.”  Ok, little teacher.  Do your thing.

I don’t think we have to worry about you being your own person; you have already made it perfectly clear that you will be just who you want to be.  There was some very tiny fear in me when we first had Tessa that you might get swallowed up into a life that revolved around her needs.  However, that fear quickly vanished as Down syndrome has faded into the background and your (very large) personality has really taken center stage.  I think that in the ebb and flow of family life, you and she will alternate in the spotlight… and sometimes you’ll share it (in which case, we will be tired).   In any case, I’m so glad that you are you and she is she – you are the most darling little set of sisters… even when you fight.  I won’t ask you to do anything more for her than be yourself, but I have this feeling that your own heart will lead you to being a champion for her… and her for you, too.

I’m so proud of you.

Love,

Mom

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Dear Blog Readers, Take 4

Dear Blog Readers,

Go Cubs Go!!

Happy Friday,

Maggie

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Dear Mom and Dad 

Hello Blog Readers.  My wife is very tired. Don’t get me wrong, she loves the 31 for 21 challenge, but this woman is amazing and pours every ounce of energy she has into her children, her job, her advocacy and our marriage (leaving very little time for herself I might add) and that’s just a lot of people to help and she deserves a small break to take the night off and go to sleep. In any case you will have to settle for my ramblings tonight, but don’t worry, she’ll be back soon cause God knows I can keep this up 🙂  I have decided to write an open letter to my parents, to whom I owe so much.  
Dear Mom and Dad,

I think I’m going to keep this to the point.  I want you to know I’ve spent the last hour trying to think of how to thank you for all you have done for me and my family.  The entire time I have been trying to determine my words, my mind wanders back to my own childhood and how much I cherish it.  I remember your smirk when I decided to draw on the walls at age 5.  I remember playing catch at 6:30 am before you went to work and I went to school.  I remember laughter during board games, fun watching Cubs games, dinner at the table every night and family vacations ranging from shacks in Wisconsin to Disney.  

You always took time to teach me how to enjoy life.  How to always look at the glass half full.  How to stop and thank God for all that we have.  What you taught me is being passed down to our kids and I’m thankful for the fact that you have passed on the gifts of love, compassion, and joy!

You have always loved me, you have always loved Maggie, and you have always loved our kids. Simply put: We all love you and we are forever thankful for all you do! Love you guys!

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Dear Internet

Dear Internet,

I hate you and I love you.  You are not my favorite at this time because you aren’t working, which means I can’t post the post the really long post that I already wrote for tonight… and because it has taken me about 10 minutes just to type this little blurb on my phone.

However.

Because of the Internet, connections.  Prayer warriors.  Cheerleaders.  People with knowledge.  People with ideas.  People who want to learn.  

On the dark side of the Internet, in the comment sections, where I get to be rattled by the ignorance of people who believe that my child will be a vegetable (and therefore, not worthy of life)… where I have to be jolted by the words of strangers who have no qualms about the word “retard” (or even better, words like lib-tard or f**ktard), I’m reminded of how much work there is to do.

And so we keep writing, and sharing, and connecting, and pushing.  We will be a force to be reckoned with.  We will be fierce.

We will teach the world to shout their worth because we have a place to connect and rally our troops.  We will educate ourselves and others.  We will continue to push.

And to have a medium in which to do all that, I am grateful.

Best,

The Facebook-loving, Instagram-clogging, Mom-Blogging Internet Fanatic

PS- I’m working on staying out of the comments.  It’s not worth the gray hairs.

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Dear Cold and Flu Season

Dear Cold and Flu Season,

You suck.

If October is any indication of how this season will go for us, then I suggest my readers buy stock in Kleenex and Tylenol right now, because we’re about to blow up the market.

If there has been one big challenge for us during this time After, it’s dealing with Sick.  Because when Ellie gets a cold, Tessa gets the same cold plus a sinus infection, pneumonia, an ear infection, and some strange full-body rash.  And it lasts for weeks.  So we’ve gotten pretty good at watching symptoms and knowing when we need to go in.  We have a good idea of how to get her to take her medicine, and we keep the bed propped at all times for drainage.  We haven’t figured out how to silence the whining, but we are getting lots of opportunities to try new approaches!

Thankfully, we have just had one Sick hospital stay so far.  I know it could be worse…. so much worse.  So I am truly grateful that we don’t have the heavy burdens of some of our friends.  But today, on the 34th day straight of some kind of drippy nose in our household, I’m just begging for little reprieve.  For goodness sake, please have some mercy on our raw and achy noses.

Most respectfully,

The Tired Mom

Who remembers this little chickadee??  5 months new… how much she has grown. ❤️

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Dear EI Team

Dear Karen, Karli, Lori, Suzanne, and Beth,

And also Kim, Rachel, Joan, Shannon, and Kate,

And Sue,

Look at you all!!  We have been so blessed with not just one, but two amazing Early Intervetion teams.  I had been so terrified to leave our old home because it would mean a new CFC and a new team of therapists.  We had an amazing team, who Tessa mostly liked, or at least tolerated, and some of the moms can be so negative about their experiences with therapists (and rightfully so).  So we when we moved, I was nervous that we couldn’t possibly hit the jackpot twice.

We did!

You all have been such a positive influence on Tessa and our family. You give great suggestions for modifications that make her path more accessible.  You help us help her and made it so easy to get the equipment that she needs.  But what has been the most influential is that way that each of you has talked to us about her and her unique strengths and challenges.  It’s never about kids with Down syndrome, it’s just about Tessa.

Too often, I hear moms distraught by the delays that their child is experiencing.  They lament the IFSP meetings where the therapists rattle off all of the things that the child isn’t doing.  None of you has ever done that to us.  We aren’t unrealistic; we know that she is delayed.  All of you have helped us navigate those feelings and accept that her timing is all that matters.

As we head off to school in a few short weeks, I’m again fearful of leaving the safety net of our EI team.  As you all keep telling me, she is ready for school, and she is going to love it.  But without your home visits and your detailed reports, and your suggestions for what we can do at home, I’m so nervous!  Her preschool teachers sure have big shoes to fill.

Thank you so much for what you do. You are overworked and underpaid, but so so loved.

All the best,

Tessa’s Mom

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Dear Paul

A note from John tonight, written to Paul Daugherty.  Paul’s writing can be found at http://www.pdaugherty.com/.  His daughter, Jillian, and her husband just celebrated their first anniversary.

Dear Paul,

There’s a small moment I remember from my daughter’s birth.  My wife’s doctor was meeting with us a few hours after Tessa was born.  He was actually very reassuring in telling us that we could be optimistic about Tessa’s life and as he put it, “things are different for kids like this than they were years ago.”  I remember nodding in agreement without really agreeing; the feeling of uncertainty in my heart still unmoving.  At the end of our meeting he looked at me and and joked to ease the tension:

“Two daughters, huh?”

“Yeah”

He smiled.  “Two weddings then.”

“Yeah…I suppose”

My voice said one thing, but my heart said another.  Wedding? Tessa? Are you kidding? I was a bit put off by what I felt to be his ignorance and nonchalance in the matter.  Tessa wasn’t getting married.  

Well…as it turns out he wasn’t the one who was ignorant, it was me.  

I recently was given your book, An Uncomplicated Life, as a gift from my wife.  As I read it, I was struck by the parallels of our experiences. You were able to articulate much of what I felt when Tessa was born.  It was reassuring to know the thoughts I had, the fears I experienced, were not uncommon.  But, the longer I read, the more the tone of my thoughts changed from empathy to joy.  I was able to journey along with your family through school, relationships, college, even living independently.  Everything I read revised my expectations.  Your life with your daughter was filled with challenges and joy…which really is the same as any child isn’t it?  It was enlightening to realize what I had in store in the future.  As I read I became excited to watch Tessa grow, to cherish what the 47th chromosome adds to our lives, and to eventually let her go and join the world, just as you did with Jillian.  

As I come full circle here, I realize my vision for Tessa’s future in the beginning was short sighted.  I just didn’t know and at that point, I couldn’t see beyond my fear.  As my daughter is three now, she has changed that vision.  At such a young age she has taught me that the only limits that exist are the ones we set for ourselves.  Your story has validated this attitude and for that I appreciate you taking time to share your story with all of us.  I guess there’s only one takeaway:  I better be prepared emotionally for two weddings. 🙂

Sincerely,

John

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Dear Sarita

Dear Sarah,

Earlier this week, I texted you about your Myers Briggs personality type and, as I suspected, you and I are pretty close to polar opposites.  This is what I love so much about our friendship – we are so different and yet so very much the same.

As I said to John earlier this week, can you imagine if, on that first night at college so many years ago, we could have seen the twists and turns our lives have taken?

I want to thank you for being someone who has always stuck around.  I want you to know that not all of the friends that I have made in life have done that, so it means a lot to me.  One of the happiest days of my life was watching you marry Andy.  It was such a joy to see your heart so full, in love with a guy who is so perfect for you.  And I get as much joy from watching you be a mother to that sweet girl. 

I will always wish that we could live closer to each other, but am content to know that anytime we get together, we can pick up on wherever we left off.  Since you are the one who knows the most about my crazy life (and my real feelings about it) and you still like to hang out with me, I feel pretty lucky. 😊

BFFs 4 Lyfe!

Maggie

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