Tuesday, March 20, 2012

Happy World Down Syndrome Day

At the risk of repeating myself, which, I know I am, but this always bears repeating...

"You are everything I never knew I always wanted."  ~ Fools Rush In

Today on World Down Syndrome Day, we get to truly celebrate our kids.  And you know what?  We really do!  It is not a blind, stubborn pride thing...It is a a proud, joyful, treasuring...

Do you ever wonder why so very many people who have kids with Downs turn around and adopt another?  It's not because we are noble people who are willing to shoulder more burden than the average person, it's because we really, truly love and enjoy our "special" kids. 

Don't get me wrong, they can be more work, they can have more health problems, they can make us sad...but they make our lives so very rich and amazing!

I do not think that it was a coincidence that World Down Syndrome Day is the first day of Spring.  Having a child with Downs births a new perspective, and new appreciation for life.

So let me just say how very honored we are that God gave us Elise.  She is a flash of sunshine in our lives.  She is a blessing.

Monday, March 19, 2012


Elise has a surprise milestone...a sleepover...

We've had friends over in batches, you know, a family with multiple kids all sleeping together in sleeping bags on the floor?

But she's never had a invitation to sleep at a friend's house...until tonight...now, I grant you it's still in the planning stages...but it's a possibility that'd I'd not even thought about for a while...because it's sad to dwell on.

Elise's best buddy at school is having jealousy pangs of her typical brother...and has been begging her mother to let her have a friend sleep over, too.  And so, awesome mama that she is, she messaged me and invited Elise over...and me, too...girls' night.  And so we get the best of both worlds, we provide our girls with the desires of their hearts...and we get to hang out and have support mama time, which is bonus.

And it all boils down to this...The milestones that you weren't expecting, they are the sweetest.

Friday, March 16, 2012

The Wisdom of Dollies

I love my girlies.  I did not want girls particularly.  I was scared of the emotions and girly-ness, but I am beyond thankful that God did not see fit to give me the 3 boys (AND THAT'S ALL!) that I wanted.

Elise has never been terribly girly.  She is a bit of a tomboy, like I was.  And she eased me into the idea of girls.  She was not a giant fan of pink or frills or fancy, they actually make her just shy of crazy. 

She likes dolls on a friend level.  They like to do things together, but she doesn't actually play with them.  They watch TV together, she uses them to gang up on me to change movies, they petition for snacks.  They are pals.

I was always a little sad that dolls were never going to look like my girl. 

Her first "friend" was Stella, by Manhattan Toy Company.

Recently, Kit has been her partner in crime.

Groovy Girls are her preferred fashion dolls.  But she has minimal interest in them as they don't have as much clout as bigger dolls to act as "Activity Support".

I rediscovered Waldorf dolls this month.  I loved them when I was little.  I had one that I lost in the great mold plague of our basement.  I still have her clothes and remember how beloved her firmly stitched body was to me.  And it was interesting to discover that her Type has an actual name.

Remembering her beloved-ness, I bought a small one for Charlotte for her birthday.  She has not made friends with her.  At all.  Which is a shame because she is so very sweet. 

But Elise likes her.  And Amelia is infatuated with her.  Elise fell deeply into enchantment with this lovey that I was going to purchase for Amelia's birthday.  And now I can't give it to her as Elise is her heart mama.

It's funny.  Elise has certain toys that become friends and they bond.  I wish she knew how to "play" but I am thankful that with all her sensory issues, she has not separated herself from developing relationships.  Even with good hearted dollies.  Whose features are indistinct and vague enough that they look like everyone, they make no separations or judgements...

I might even argue that we view them they way our hearts should see everyone.  The same and completely lovable.

Wednesday, March 14, 2012

Surgery Updates and New Surprises

I am sorry that it's taken so long to update you on Elise's surgery.  I did check in on Facebook...but I realize that I should have done so here.  The time change has been very hard on our house...Very hard, indeed.

Elise did very well with her surgery.  Thanks, I am confident, to your prayers. 

I will say that going in was rough.  She was hungry, and she doesn't like to be hungry.  But she was in fairly good spirits even so, until she realized what was about to go down.  We managed to be lightly irritable, but cooperative through triage, weigh in, and changing to the surgical gown.  She spat the bronchial and vaso-dialator (veins) all over everywhere, and got us all sticky.  But even that went okay until they took us back to the operating room.  We got about 50 feet from the room when she realized what was about to go down.  It took us all of 15 minutes to get her the rest of the way down the hallway and onto the table.  I am pretty sure a couple folks got kicked, even though I tried to warn them.  I strained my back, but got her there.  I did, in fact, have to hold her down to receive the anesthetic gas...and talked sweetly to her until she fell asleep.  I apologized to the nurse that I was pretty sure got kicked and she told ME that she appreciated ME!  She said that I handled her perfectly, and that they appreciated my understanding...I have never in 9.5 years gotten that.  Not once.  It was crazy.  I was quite touched.

Because she had rather poltergeist-y moments as reactions to the anesthesia in the past, I requested an exit dose of Zofran (anti-nausea medicine) to prevent those moments this time.  It worked beautifully.  As a matter of fact, she felt so well, she barely had her eyes open before she started about ripping out her IV.

I chose to keep her on the Zofran for about 36 hours.  She had a couple of gag-y coughs Saturday morning, but they passed with no production.  Thank God!!  The funny thing about the Zofran was that it worked so well they released her overly quickly because they didn't need to see if she could keep anything down, because it saw to that.  And so she danced drunkenly down the hall and giggled uproariously all the way home.  (It was a very nice contrast to the scrubbing up of vomit from last time!!)

The ear tubes went in smoothly.  We are stuck with the regular ones, we do not have the choice to get the T-tubes that can be sewn in, because her actual ear tubes are so minuscule they cannot get them in.  Period.  So we are praying over this batch to stay in a long as possible!!!  9 months seems to be her average, but they could stay in for a shorter or longer amount of time.

The laryngoscopy was to see if she had scar tissue from previous intubations.  The good news is that no, there is not any scar tissue.  Which is really great...and I am incredibly thankful, because that is the kind of thing there can really be nothing done to fix.  Which means that, not only does Elise have no scar tissue, but that her asthma is true asthma, and can be treated and we can expect a response from her body.  Scar tissue will not respond, and could possibly deteriorate and become worse.

The surprise news is that she has reflux.  Still?  Again?  We are not sure.  We will begin treating it for about a month and see if there is impact in her stomach aches or her sleep restlessness.  She also has inflamed and enlarged vocal chords.  And all of the blood vessels in her esophagus and vocal chords are enlarged and appear to be under pressure.

We are not completely sure what this means.  It could be because she is so gutturally vocal.  She grunts, growls, shrieks, screams...and while you certainly understand her emotions, her throat is paying the price.  They have a lot of abnormal pressure put on them.  Of course, it could be completely unrelated.  And so, we have something new to watch.  Hooray.

All in all, it went as boring and painlessly as we had a right to hope for.  Thank you for holding her up in prayer.  As I said, I am quite sure that it was entirely why it went so well!

Wednesday, March 7, 2012

The Night Before...Every Surgery...

It is past 1:00 in the morning.  I will have to get up in less than 4 hours to take Elise to the surgery center.  But I am not sleepy.  I am never sleepy before a surgery.  I am always insomniatic (is that a word?) because I had to sign the papers.  You know, the your child is having tubes put in, a tooth pulled or whatever and all these terrible things may result from the surgery, the anesthesia....and so on.  You have to sign them...no matter how terrified you are from the death and damage that surgery may do, because if you don't they won't do the surgery...and your child will not be healed, fixed, or whatever...

The first time I had to sign those forms was when Elise had her open heart surgery.  And the option not to do the surgery was that her heart would fail her and she would die...we were literally watching it fail...and so, sick, I signed it.  I have signed them over and over so many times I have lost count.  Sometimes they were for life saving procedures, some have been for minor things...like tomorrow. 

Tomorrow at 7 am, Elise will have her 6th set of ear tubes placed...6th in 5 years.  And she's had 2 ear infections ever.  Her brother, Gabriel had that many ear infections in the first 3 months of his life.  No lie.  But if she doesn't get tubes, she will deal with fluctuating pressure and ear pain, and will hear all the sounds in her life like she is underwater.  And with her current speech at a 2-3 year old level, she will only get further and further behind...BECAUSE SHE CAN'T HEAR.  That portion of the surgery will take less than 15 minutes.

She will also have a laryngoscopy to see if any of her breathing/asthma issues lie with scar tissue in her larynx and esophagus, from being intubated...during all her other surgeries.  I find that a little ironic.  That part of her surgery will take 30-45 minutes.

You may have signed those forms with the anesthesiologist or doctor or surgeon assuring you that likelihood of any of those terrible things happening will be 1 in 8,000...or some other minuscule number.  But when I hear those numbers, you have to understand that my child was born to me with disabilities with similar odds.  She was diagnosed with cancer in the face of tiny odds.  And yet, she was, because the possibility was there.  And the possibility of losing my child to minuscule odds seems a little more looming and possible to me...because they've struck before.

And so I wander my house in the wee hours of the morning burying my self in the mundane.  I scrub my dishes, I cook, I do my laundry and fold it, take a bath and wash my hair...because the more I do boring tasks them more I drown myself in the possibility of normal...and I find it soothing.

I will take my beloved baby to the surgery center and wrestle her 85 pounds of hungry anger to the pre-op room and hold her down for the nurses.  I will hold the anesthesia mask over her nose and mouth as she thrashes or pour the Versed down her throat because I cannot hand her over to the nurses and let her feel like I have abandoned her to strangers...she knows that I do things for a purpose.  She knows I love her.  And so I do what I don't want to do because I want her to know that I love her.

Please mention a prayer for a nice, boring surgery.  Please pray for a easy exit from anesthesia, she's had a rough time the last couple of times....Please pray they have a coffee machine available to me...as I feel the need to find my broom and take care of some cobwebs I saw last week in my attic...  :)

Today's the Day. Think about it.

Today's the official day of "Spread the Word to End the Word."  You can read more about the movement here.

I've posted how the word retardation actually comforted me in a odd way back at the beginning of our path with Elise, which you can read HERE.  And HERE are my thoughts last year.

I am afraid that I am yet more saddened by it's use this year....and more wistful in my plea.  I don't know if it will ever truly make me angry or cause me to get up in someone's face...although I have already been driven to calling out people in ways I never thought I would, due, in some manner, to Elise.

But this year, I am asking that you reconsider the ramifications of throwing the word "Retarded" around.

My daughter is not like yours.  My battles are not like yours.  My worries have taken on a life of their own. 

My nightmares are more simple now.  That my daughter will be taken advantage of.  That she will not be allowed to hold a job.  That all of the push toward euthanasia will include her.  That if we turn to more socialized healthcare, that her "quality of life" will be in question.  That she will never talk clearly enough to be understood.  That she will never be able to express her needs and wants.  That her physical limitations will prevent her from having fun experiences with the rest of the family.

When you allow the word retarded to roll off of your tongue, you trivialize all of Elise's struggles, all my fears, and you make me question our future.

Please remove the word "Retarded" from your vocabulary.  Please remove it from your children's.  Please protect my child from exclusion, please protect her future.  Please don't allow your immature vocabulary from your middle school years to wreak havoc on my child's and my present.

Thank you.

Sunday, March 4, 2012