Saturday, February 26, 2011

Receiving the diagnosis...

A mom just gave birth to her fourth baby.  She sits on the hospital bed clutching her husband's hands as she struggles to take a breath.  The air has literally been squeezed out of her.  The doctor delivered not only the baby, but the words that would change their lives from that moment on...

"It looks like your baby has Down syndrome."

The doctor leaves quietly.  The mom wails in agony over the words that cannot be taken back.  It's too late.  Never can she go back to the moment before when her baby "was perfect."  Her mind races to the future and tries to picture herself and her child as an adult.  Painful, preconceived notions permeate her thoughts...  Will she be 80 years old and still have an adult "child" living at home?  Will she and her husband never have those "golden years" together to travel and live life as they please, knowing they've raised wonderful, responsible children who are contributing to society and making a difference in the world?  Will she become are part of "that" family that everyone talks about behind her back?  Will her friends be embarrassed to be around her?  Will her child ever be invited to birthday parties?  The questions are screaming through her mind, through her soul, seeking solace from someone, anyone.

The future is too hard to predict.  Too painful to project onto her newborn.  She snaps back to this moment...

Her baby has been taken to the NICU.  All she wants to do is hold him, but the tubes and wires attached to him make it impossible for the first few days.  All she wants to do is to whisper through her soft tears that trickle down his precious cheeks that she is sorry.  She is so sorry.  What had she done that "made him that way?"  She asks herself, could the doctors be wrong?  What do they see that she doesn't see?  How can they tell?  He looks perfect to her, other than his purplish coloring and flaccid body.  He looks perfect.  He is perfect!  Did they see all that hair?  Did they hear him scream?  Did they count all his fingers and toes and see that round belly?  What's wrong with the doctors?  Clearly, there's a huge mistake and they will tell her that it's all a mistake.

That message never comes.  No one tells her it's a mistake.

Slowly, the fog lifts and it's morning.  She makes her way to the NICU to bring her own milk to her precious baby.  The pain is still there, but it's a new day.  The nurses are friendly.  The sun is bright outside.  The mom and dad realize that their baby is the most important thing in the entire world and he is just as he was intended to be.  He is perfect.  They didn't do anything to cause him to have Down syndrome.  In time, they will learn everything there is to know about Down syndrome; but for now, he is a perfect baby that needs their love, nourishment and to be cared for as any of their other babies.  They will take it all one day at a time... learning as they go. 

(John Michael turns 1 and tastes his first cake)

(Fab Four -- Sheridan, Gabby, JM & Joaquin,
May 2008)

This was me, just a little over 3 years ago. 

John Michael's birth rocked our world in more ways than one.  That extra chromosome caused many tears in the early days and weeks as we tried to understand the diagnosis.  Every doctor appointment had me worried that we would hear some terrible news or some health issue that would take us by surprise.  But as the weeks turned into months, we learned to navigate the new path we were on and we found that the Down syndrome part became less and less important.  John Michael was just a baby and would be raised just like our other kids with the exception of some early intervention therapies where needed.

Fast forward to today --

(John Michael and Joaquin rocking out at Sofia's 2nd Birthday Tea Party)

If you read our blog regularly, you know what a ROCKstar John Michael is in our family.  That boy has more friends at his age than my other kids combined.  And he just got *another* birthday invitation in the mail today... we can hardly keep up.  His teacher loves having him in the classroom and his classmates always shout, "Bye, John Michael" as he leaves.  Older kids at my other kids' school make way to give him high fives, while their moms ask to "steal him away" at church or school functions.  His social calendar can be hard to keep up with.  I feel like I'm his "road manager" sometimes, making sure he looks his best and gets to where he needs to go  :-)  Someone needs to tell that new mom that it's going to be OK.  Life will be great!  You will be "that" family, but it won't be bad and your child will amaze you every step of the way.  As a matter of fact, some of my closest and best friends are those moms who are blessed with a child with Ds.

(Having tea at Sofia's party last week)

Last week, an acquaintance of mine had her third baby and guess what?  He has Down syndrome.  I want so much to protect her from all the sad/negative feelings and emotions and help her get to "that happy place".  I want to tell her how great her child will be and how she will be amazed and deeply in love and her son will do things like "typical" kids and...   But, then I'm reminded that not everyone has the same preconceived ideas about Ds like I did.  One of my new mom friends thoroughly embraced her baby's diagnosis in utero while another blogging friend struggled for 2 years before coming to terms with Ds.  Whatever the healing process, I know that it's my calling to be there for new moms... to listen, to help them in whatever capacity they need, wherever they are... and to watch them get to the place where they know their baby is perfect, just the way they are.  I can't wait!

(Just a regular kid and World's Best Brother)


  1. awesome Monica...tears flowing. I LOVE LOVE LOVE this post and I love you so! I'm so happy to have you in my life and that our boys brought us together. Life is SO good, full, happy, wonderful!

  2. That was beautiful! I LOVE your new family picture! You totally need a big one of that in your house. How adorable and what beautiful children!

  3. This is exactly what I went nailed all the emotions! Thank you for walking ahead of me on this journey, and showing me how wonderful it is going to be. I am so looking forward to the day that I can meet that sweet little boy of yours! I am jealous when I see all these adorable kids together- wish we lived closer!

  4. Dear Moni, thank you for your wonderful words. They describe exactly how we felt that days, when Carlos was born. How helpless we were and how strong we got, after understanding all.... Our Kids are perfect and they are more than wonderful....

  5. Love it, love it, love it. Love your post, Monica. So blessed to know you! you,re amazing....

    You are a truly amazing mama,wife,woman and friend.
    Gracie's mama

  7. For our special kiddo acceptance truly is the most loving gift. Even though I traveled a bit different road than you did, (Ry's diagnosis was at 2.5) I sit here tearing up remembering the emotional roller coaster I traveled those first few months. Through your blog I am motivated to move past those times and to be strong for those whom have not yet traveled the road of living with an autistic child. Thank you so much for sharing your journey and inspiring me to be the best mom possible for Ry.

  8. This is such an awesome post, Monica. And it is so applicable to so many kids, not just Ds. I felt very similar things about Fiver and all of his delays/disorders. In the end, there is only love and he has been a HUGE blessing in our lives. There are so many things I never would have known about love and life had he not been given to us. It also makes me less afraid to face the future if one of my other children would be born with an "imperfection." Perfection is nothing, love is everything.

  9. Beautiful post. Thankful for so many ds mamas that keep sharing our wonderful kids with the world.

  10. This was just so beautiful! I couldnt read it without crying, it took me back to those first few days after Russell was born...The devastation, wondering what it was I had done wrong to cause it, thinking it was all just a horrible mistake because Russell was to perfect and beautiful for this to happen...
    I just wish instead of everyone telling me what may be wrong with Russell, what therapies he would need, what medical issues he might face...I wish that just one person would have layed aside all the medical talk and just told me how amazing my son was going to be, how much more "normal" he would be than I even realized, how our lives were not going to change for the worse, how Russell was going to bring us so much happiness, how he was just going to be a regular little boy.
    I have always loved your blog Monica, it has brought me so much peace over this past year :)

  11. Beautiful post, Monica. John Michael is truly a Rock Star!! I like that you brought up the reminder that not everyone is in that difficult place. But for those that are, I love that this community rises up to greet them, and help them on the road to acceptance and happiness. :-)

  12. Oh. JM in a vest and tie. I think my heart exploded with glee! He is so handsome!

    This post is beautiful.

  13. Right on, Mrs. Crumley! A gem, diamond, a pearl of great price you are to all mothers, those with children with D's and those who aren't!

  14. Monica, it is understandable that you would want to help the woman you know get to her happy place, but as you point out, getting the diagnosis and how one reacts to it, is such a personal thing.

    Depending on the obstacles facing the child, or family, it can be harder for some to get to that happy place. I think that just knowing that there are others who understand the highs and the lows makes all the difference. This new mom is very lucky to have you as someone to turn to.

    Your friend Aimee said it perfectly. "Perfection is Nothing. Love is Everything"

    The love is never in question.

    And without a doubt, John Michael is a rock star!!

  15. Beautiful Monica! So blessed to have you in my life!
    Laura Beth

  16. This was a fantastic post. I hadn't read about John Michaels beginning before. It made me wonder if doctors are trained to 'deliver the news' in the same way they're trained to deliver the baby.

    My doctor told me Beth was 'showing signs of Down Syndrome'. What an amazing, exciting, out-of-my-comfort zone journey it's been! Wouldn't trade it for the world!

  17. I've never heard your whole story before! It's so true, that we each have to find our own path to our "zen"...but it's so nice when we have wonderful sisters like you to walk the path with us!

    Big Hugs!!!!

  18. Beautiful, just like you. Loved reading your story. You are an amazing woman and I'm blessed to call you my friend!

  19. What a wonderful post! JM is such an inspiration and has been from the first time I read your blog. Thank you for your insight and for sharing JM with us...he is a ROCKstar!!! Hopefully one day we'll get to meet in person!

  20. LOVE LOVE this post...I'm in tears also...I was a momma to embrace the diagnosis during pregnancy...HOW I LOVE you so much too! I know we have only met in person ONCE, but I feel so close to you...Amazing how close we feel to all DS mommas! I can so relate to JM having so many friends and keeping up with social life of him...Brayden needs his own planner childrens friends just LOVE him so much too! High fives, pounds, love seeing how much joy he brings when we walk into a room full of people...the joy he brings to our faces every morning...just amazing! I too hope any new moms that are struggling with the diagnosis, that they will soon feel the peace and love overcome their fears. Thanks for writing this post...absolutely beautiful.

  21. I love this post Monica!! And there's no denying that JM is a ROCKstar!! He is so precious and growing up so fast. Thanks for sharing your rockstar with us. :-)

  22. I love this post, Monica and I absolutely adore you and your amazing family. xoxo