Wednesday, January 25, 2012

Excellent Link

I am sorry this is such a melacholy link...but it was said so beautifully...and it's not isolated to needed to be shared.

Today's Miracle

By a fluke that can ONLY be considered executed by the Grace of God and a pure, unadulterated miracle, Elise just passed her hearing test. Holy cow, you coulda knocked me down with a feather.

The entirety of last week, she's been echo-ing everything I say to make sure she heard it right...sounding very much like the old preschool game: "This is a stick" "A what?" "A stick" "Oh, a stick!" and so on...or resorting to the old standby "HUH???" Constantly.

(That is why she got tubes in the first place.  A LOT of kids with Downs get a lot of ear infections.  Elise has, shockingly, not had that many.  But between the Everest-sized ear wax globs that we CANNOT get out without surgical expertise, and the constant ebb and flow of fluid in her ears, her speech and enunciation pay a very heavy price.  When she got her first set of tubes placed, she went around for 2 weeks with her hands over her ears, going:  "loud, loud, loud..."  And then her speech picked up like a wild fire!)

Sorry, digressing as usual...When the hearing and auditory specialist called yesterday, she said that we really needed to just do a trial hearing box run...I was not hopeful.  She was still echoing and was gross congested. 

This morning she woke up surprisingly clear and quit echoing...

When she passed the hearing test, the audiologist kept saying that whatever she was on for her congestion, had apparently opened up her ears...and I kept saying she's not on anything that would do that....  (Trust me, I know!) 

She certainly didn't not get the magnitude of the miracle...and I am just expanding on the story so you get it.

The true importance of this story, and what it means practically, is they can go ahead with her testing and re-qualification for special needs services, we are not bound and gagged by the surgery...She will still need it, but we can take our time and get it whenever she actually gets well...whether it be next week, or more likely, March.

Ironically, this afternoon she sounds pretty congested again, and is echoing again...


God's just plain mind-blowing sometimes...

Tuesday, January 24, 2012

And so it happened...

I knew this day was coming...and my heart is torn...

Amelia and Charlotte are upstairs playing Barbies...

And Elise is downstairs watching Scared Shrekless for the 50,000th time...

Charlotte has always been the Tweedle Dum to Elise's Tweedle Dee.  They were always in each other's business.  And today she is big enough to play with Amelia...and so she does.  I am glad for her, it is as it should be...and I know that Elise and Charlotte will always be close, just because their personalities are so similar...but I regret Elise having to share that companionship. 

You know?

Monday, January 23, 2012


10% of the nation have disabilities.  90% are unchurched.  If that is not a mission field, I do not know what is.

Yesterday at church, the sermon was pushing praying specifically for missions.  And Saturday, I got to go to a small conference where a minister and father set forth his ideas and framework for a successful special needs ministry.  And as this is obviously where my heart is, the two entwined themselves in my mind.

My church is taking baby-steps to setting up a special needs ministry.  Right now, the framework is in my court for more tweaking...which makes the fact that EVERYONE IN MY FAMILY KEEPS GETTING SICK all the more frustrating!!!  I am not fussing, not really, but for now, the fact that the implementation is slower than Christmas is my fault...which stinks.

But The Guy (every church has one, you know, "The Guy" who knows everybody and everything?) at our church has a friend who is a minister and also has a son with profound Autism.  Anyway, he was invited to give a presentation to our church's children's ministry staff and a few lucky extras like me and other Idea Men and the folks who started The Pier (a local thrift store specifically and almost exclusively hires those with disabilities)...And it was AWESOME!

Paul Thompson is the senior minister at First Baptist Church in Jensen Beach, FL.  He has started the ministry called Enable.  He knows his stuff and gives practical working information on how to set up a special needs ministry.  He also gives concrete Biblical support of why this ministry is so important.  He referenced the Biblical passages of Luke 14:15-24, where Christ specifically asked those with disabilities to his banquet table.  1 Corinthians 12:14-26, where Paul talks about the Body of Christ as being incomplete without even the seemingly inconsequential parts, because they are indispensable.  And finally,  Matthew 25:31-46, speaking about the "Least of These" as being a judgement of attitudes and not a measure of value, and that the needs become a tool to use in reaching out.  He also gave me the numbers I opened with.  He is doing his doctoral thesis on this, and so he is not throwing around numbers, these are confirmed.

Of course, Paul Thompson's presentation set heavy on me, and only underscored what I feel like I need to be doing.

But then yesterday, with the sermon calling us to pray for missions, I was struck again at how my "missions" mindset has changed.  And I am asking you to reach out.  I know that as families touched by special needs, you often feel isolated, tapped out, and exhausted.  I know that you are laying heavily on God's grace just to get through some days.  But I PROMISE that God will give you a little extra strength to reach out to others and offer God's grace and strength to those struggling.  I promise that even if you are not touched by special needs, that if you reach out to someone struggling with special needs, you do not need the "RIGHT WORDS".  All you have to do is love someone.  Paul tells those who volunteer in his Enable Ministry, "I am not asking you to sign up for a ministry, I am asking you to love and care for someone."  If your tongue is glued to the roof of your mouth because you don't know how to start, then start praying for them.  Eventually, God will get you beyond yourself and you can start.

I am talking about families who have someone with special needs in it and I am speaking about those who have the special needs themselves.  There is no disability too big that cannot feel Christ's (and yours!) love, whether they can verbalize it or not.

Welcome to a new mission field.  They are waiting and ready to be loved.  GO!

Sunday, January 22, 2012

Good News About the Next Generation!!

I wanted to share a story tonight.  When most of the news I get about Down Syndrome is scary and about exclusion and genetics testing, I can sometimes get discouraged.  But I had this interchange on Facebook with a friend of mine.  Her daughter "S" works with my daughter, Elise at church.  She signed on to shadow Elise at a VBS a few years ago, and has stayed her faithful friend for the last 3 years.  And you can see by this conversation with her mother "H", just how faithful a friend.

"H:  Guess what just happened to 'S'

Me:  Not sure if I want she okay???

H:  She got fired from AMC at the avenue. One of her fellow employees was making fun of a down syndrome girl and 'S' got loud and in her face and the manager escorted her out and fired her. I am boycotting the theatre.

Me:  :o
Can they do that????
Shouldn't that go the other way????????

H:  They said since she did it in front of guests they fired her.

Me:  I want the manager's name

H:  I told her how proud I am of her.  The other girl got fired too but I don't care.

Me:  I am proud of her too...she's who makes it better for my girl and others like her.

H:  That is what she said. So proud she said if I have to forgo my job to stop someone from being made fun of that is fine."

Her mother, "H", bragged on her on Facebook, saying:  "So proud of 'S' for getting fired tonight. Love it when my girl stands up for people who can't stand up for themselves. I am going to frame her separation notice. Way to go 'S'."

And, for the record, her firing slip listed the reason she was let go as "Substandard Performance".

This happened here locally, at The AMC movie theater at The Avenue Forsyth.  I don't know what their policies are.  I do not know how public "S" was.  I am not asking you to boycott the theater, but whatever calls or emails you feel led to make, I certainly won't discourage you.

When I messaged her to tell her how proud I was of her, I got this message from "S":

"Thank you Elise is very special to me and no one deserves to be made fun of whether they r a little different or not and I won't let anyone talk that way around me.. I love you guys too:)"

I am just so proud of "S", I had to brag on her.  She is a true friend to Elise, because she does not compartmentalize.  She does not allow things to happen to other people and throw up her hands with "I can't change someone's mind."  She stood up to protect and give dignity to someone who needed it.

Proud doesn't begin to give words to the emotion I have for "S"!   I am honored to know her, honored that she is my daughter's friend.  Thankful that she is our "next generation".  I am thankful to my friend "H" and her husband "N" for raising such a magnificent young woman.  I am thankful that God has kept her heart gentle, her sense of morals strong, and her voice confident.

Way to go, "S"!!!!!!!!!  LOVE YOU!!!!!!!

Monday, January 9, 2012

A Bumpy Start to 2012

Elise is still readjusting to her medication.  She's still a bit "off".  I will find her sucking her thumb, like she's going to ingest it.  I will tell her "no" over anything and it will send her over the emotional edge.  When we went to the neurologist, she suggested that it was that her thyroid finally gave up the ghost and she needed (more?!) meds.  I finally got the call back from her endocrinologist, and she said, "no" that really was unlikely that it was making an impact on her emotions without taking a toll on her weight or appetite.  And so we still don't have a clue what is causing the emotional melting.  It makes me exhausted.  I wish I had SOME kind of answer.  Any of you veteran mamas who have any ideas, PLEASE share. 

At the neuro's office, I did discover that she had gained 8 pounds and TWO WHOLE INCHES in height since June!!!!  If you don't know what a giant deal this is, let me just share that it typically takes her YEARS to get multiple inches, not 6 months.  With the increase in height, the weight is a freebie...but I am still a little concerned.  We are seriously considering joining the Y or our local pool to get her some exercise in, as she keens and howls if I make her go on a walk with me.  We single-handedly give ALL the neighborhood dogs a nervous breakdown.  I am sure our neighbors LOVE us.  Right now, we are just trying to get her well and we jump on the mini trampoline in the basement  or play on our playset for some exercise. 

Elise was scheduled to have her 6th (in 4 years) set of ear tubes put in today.  We cancelled yesterday thanks to our monthly bout with croup.  Anesthesia wouldn't touch her with a 10 foot pole.  The scheduling nurse said that she couldn't use her inhaler within 5 days of the surgery because it is a steroid.  My pediatrician said to ignore her for the next scheduling of the surgery.  So, I probably will.  Mostly because with a diagnosis of croup we cannot reschedule the surgery for 2 more weeks.  Which is great because it will probably coincide with her next round of croup.  *sigh*  That said, she tends to be crazy with fluid in her ears, PLUS she cannot get her ABR (a sedated hearing test) which therefore also delays her re-qualification for special education services...hopefully the fact that she is sick will figure in...and not just dates.  (Because otherwise we will be in a world of hurt.)

Christmas was nice.  I did manage to find a "Wolf Game" which is all Elise asked for for Christmas.  I got a nice Webkinz wolf, which qualified for a wolf game.  Yay!!  We kept the gifts pretty low key and got things that they needed because we opted for a family trip instead of more things nobody needs.  So "Christmas" will be making another appearance in February.  I am really excited over this!!  It's much more Elise's cup of tea anyway.  And memories are ALWAYS better than stuff!!  Right?