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)

Wednesday, February 16, 2011

Becoming more independent...

Last week, I had our respite gal watch Luke so I could take John Michael to the park.

Just the two of us.

We had such a great time, soaking in the sunshine after weeks of rain and cold weather.

I was reminded at how important we are for each other.  He still needs me to help him navigate the playground when he's unsure about some of the play equipment.

But he also showed me how independent he's become at preschool and that it's OK for me to let go of his hands and let him do it all by himself sometimes.

That look of pride in accomplishing something like walking across the wobbly bridge without holding on...


Of course, he still needs me...  even if only to push him in the swing.

But other times, I'm learning to let go a bit and let him climb by himself until he reaches out his hands and says, "Hullp!"

This newfound independence is a joy to watch. 
Another notch in the milestone belt.

Can't wait to see what lies ahead...

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Monday, February 14, 2011

John Michael and Greta performing a Valentine's song for you

Happy Valentine's Day from John Michael and Greta to you!

Friday, February 11, 2011

The Many Faces of John Michael

Does this look like a sick boy? 
He spent half the night throwing up, but apparently it was the huge pack of raisins he ate and not anything more.  I kept him home from school just to be safe, but he's been perky and we had fun playing outside while Luke was taking a nap.  He seems perfectly happy and healthy.  Yay!

My iPhone doesn't do the best job with indoor, lowlight shots, but I had to capture my funny guy and his many expressions, all taken within a minute or two of each other.

This is just your typical John Michael, cutie patootie, with his new do.

"Mom!  Theth!"  He actually hit me in the nose with Luke's bottle cap.  Nice aim, Buddy!

"John Michael, can you make a sad face?"
Love the lower lip! I also love that he understands different emotions.
We were having fun with this one.  Can you pucker and say, "Ooooooooooooohhhh?"

And finally, my sweet John Michael with his special doggie... the one with the scraggly orange and yellow yarn bows that his Oma tied on for him. He is so addicted to this doggie and loves to carress his cheeks and hands with the yarn when he's trying to fall asleep. He also loves to tickle my face with it. I'm so glad Greta didn't mind letting John Michael latch onto her doggie and claim it as his own!

Love this boy!  Happy Valentine's Weekend! 

Wednesday, February 2, 2011

Explosion! (of milestones)

I can't keep up anymore!

John Michael is EXPLODING with milestones lately, and I can't keep up with them!  And while January is usually my slowest blogging month after the December busy-ness, I promise to post more regularly again... 

One milestone is that John Michael is starting to tell me when he has to poop and has successfully gone two times now, and usually sits for 5 minutes at a time, even if nothing happens.  He often tells me he has to go "pobby", walks to the bathroom, turns on the light and says, "Light!" and opens the toilet lid.  He tries to pull down his pants, although it's still something he's working on.  But if I don't help him quick enough, he easily finds other things to occupy his time (eg, unrolling the toilet paper...)

Some other things that used to be torture, have become more routine and easy to manage. 
Like, brushing teeth.

A year ago, I lamented that he screamed his head off every time we tried to brush his teeth.  He now loves to brush his teeth, even if it's for a short 30 seconds or so.  He smiles while brushing, then lets Doug or I finish with a thorough top and bottom brushing.  When he's finished, he makes sure to show off his fresh, clean breath.  So cute!  (This is also reinforced daily at preschool when the kids all brush their teeth after breakfast.  He's in a full inclusion Head Start program that offers breakfast and lunch and the kids learn about and practice good hygiene.)

Ta Da!
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