The things people say

To the lady at Disneyland who put me in tears: My daughter is not a freak.

To the window washer guy who came to our door: She doesn't just "seem" to have pretty eyes.  Maaike has beautiful eyes and that isn't the only thing she's got going for her.

To the mother at Coy's swim lessons: Don't punish your child for being brave enough to ask me about Maaike instead of just staring.  When you punish him you teach him not to reach out, not to connect, and that there is something shameful and wrong with being different.  Being different is beautiful.

To the other kindergarten mother:  Having a healthy baby isn't the only thing that matters.  What matters is that no matter how they come they are ours to love, care for, and cherish.

To say that we were not prepared for people's reactions to Maaike is a gross understatement.  I could not have fathomed the things that a few people have said.   On the drive home from our Disneyland trip we were at our tipping point.  The pointing, the staring, the waving their friends over to gawk, had brought us to our edge so when we stopped into a restaurant to grab a bite to eat and  over heard a woman say to a man, "OMG. Did you see that baby," we were ready to snipe back, "Maaike do you see that crazy lady with red glasses and ugly hair."  Definitely not our best moment, but a needed release and catalyst for our new stratagem.

Years ago I was moved by the story of a neighbor of ours who had two special needs children.  Their oldest daughter was born with Trisomy 18 and miraculously lived til she was almost 16 years old.  Their 4th daughter was then born with down syndrome.  On one occasion she was out with both mentioned daughters as well as their other 3 daughters when someone pulled up behind her vehicle and yelled at her for parking in the handicap parking when she was obvious perfectly ambulatory.  I think she had every right to lose her cool, but instead she walked over and lead the passenger out of their car and over to her van's side door to introduce her daughters.  They apologized.

Learning a lesson in grace from our neighbor's reaction, our new approach is to step forward and introduce our dear Miss Maaike, because the moment you meet her you can't help but fall in love.  I am still in process of summoning the courage and holding back the tears, but it feels right and absolutely imperative for Maaike to know there is no need to shy away from outside world or fear what ignorant people might say.  Being different is beautiful.
  

Waiting and praying

Tomorrow was to be Maaike's first sclerotherapy treatment.  We had hoped to get things started sooner than later so that her subsequent treatments would not linger into RSV season, but a sight temperature and a sometimes howling cough will push us back another 3 weeks.  While I am disappointed I am also relieved.  The thought of her tongue and cheeks swelling exponentially has me on an anxious edge.  It will come eventually, but that day is not tomorrow. 

Tonight was a battle to keep her oxygen levels up.  Thankfully they have yet to drop below the 80's, but even at just one percentage of deviation the alarm goes off.  I sometimes get to feeling that her machines are yelling at me.  We tried all the usual stuff: up her oxygen, suction, wake her, but all in vain of a restful nights sleep for all of us.  Then came the kneeling and the pleading.  "Please help her. Please help us. Make it so the alarm stops."

I read the entire manual of her pulse-ox trying to figure out how to reset the alarms to go off below 88% instead of 90.  That would help a ton and at those levels there is really nothing I can do, but alas the machine is somehow locked.

Then some inspiration.  A deep suction, down below her trach, and then elevate the head of her bed.  And so far it is working.  We have dropped from 5 to 10 alarms a minute to 5 alarms an hour.  I'm still uncertain about our nights sleep, but I am at least feeling we will get something.

I do not think there will ever be words to express to Maaike in her later years of all we went through, all we felt, and all the sleep we didn't get in order to save her, but even so, even now, it is worth it.

The alarm is sounding.  I must go...

To Boston, to Boston to try a new doctor

Our trip to Boston was everything we hoped it would be.  The specialists at Children's Hospital knew all the right questions and had all the right answers, granted some of those answers were not easy to swallow, but we feel confident moving forward with their recommendations, after all, they have actually seen cystic hygroma before.  Amazing.  The next step will be 3 to 4 rounds of sclerotherapy and then a tongue reduction in the spring.  Thankfully one of the colleagues from the Boston Children's office just relocated in July to our hospital, Primary Children's hospital in July, so Maaike will receive her treatments here.  We will most likely fly back to Boston for the tongue reduction, but one step at a time.