Deep breaths

Mothering requires a special kind of person.  The kind of person who knows how to take deep breaths, step back from a situation and let the best solution grow.

I was not that person this morning.

Wordless Wednesday: Give yourself a hug

our youngest, Aaron

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Down's Syndrome: the education of me (part 4, the end of the beginning)

Start with part one :)

As we left our first Down's Syndrome Guild Meeting, I recalled another time I had joined a club I wanted no membership in.  We lost Ian in 2006, then had a miscarriage a few months later.  We joined M.E.N.D. and attended Camp Sol, affirming our membership in the Bereaved Parents Club.

When we are little, we imagine our lives.  We plan the weddings (with Prince Charming), we play Mommy, we think about what we will be when we grow up.  Then along the way, life happens.  Never do we plan to lose a child.  Never do we plan to have any kinds of troubles.  We never imagine special needs.  Never create a scenario where divorce is acceptable.  Never account time off for dreaded diseases.  Why should we?  We were children.  There is a scripture that reads:

When I was a child, I used to speak like a child, think like a child, reason like a child; when I became a man, I did away with childish things.  1 Corinthians 13:11

As children, we dream big dreams of perfect lives.  We reason that it should be that way, and so it shall be.  When we encounter the challenges of life, we begin to see that childish dream slip away.  Mine was not just slipping, it was shattered.  Losing a child is one of those things you fear, but don't really think will ever happen.  Once it does, it seems the floodgate has opened and all the other potential tragedies of life, that once seemed impossible, might just reach you too.

Fear that my daughter would be kidnapped, my husband would die and leave me a widow to raise the children on my own, fear that I would have a stillborn child, fear that we would face financial ruin and end up having tenets in our own home (We would all live in the master bedroom, the baby would have the walk-in closet as a nursery, twin beds would line the other walls.  My fears have fully-grown legs!)

Still, in all those dark moments of fear and doubt, "special needs" never crossed my mind.  Yet here I was.  Strolling out of the Down's Syndrome Guild, pushing a baby carriage with the sweetest little bundle I've ever met.  Still struggling to come to terms with what it means to be a mother to a special needs child.

And then I realized - I'm just a mom.  Every one of my children has special needs.  Calvin is intelligent and clever and loves for me to spend time with him.  I have to keep him busy or he causes mischief.  Jordan is an artist, singer and loves anything creative.  She is absent-minded and would lose her head if it were not firmly attached to her body.  I have to remind her every few minutes of what she is supposed to be doing.  Ian lives at his Father's house.  I have to love him from a distance and rekindle his memory.  Gavin is a bundle of energy and love.  His hugs come kamikaze-style and often leave visible proof of his affection.  I have to teach him to channel that passion in constructive ways.

So Aaron will be a little behind "typical" kids.  I can deal with that.  I'm his MOM, that's why I'm here.

I have learned so much from this precious child.  I've learned to just RELAX and enjoy him.  I have had very little expectation of what he will do and when.  And you know what?  I've been so pleasantly surprised!  I wonder how much joy I've missed out on in celebrating my other children's accomplishments - just because I was so focused on the next big goal?  And I'm not even one of those competitive moms!  I consider myself to be pretty relaxed already, but I've learned to just lean back and trust that all will be well.

what was I worried about?
less than a year and already in the driver's seat!

 So - my education will continue.  Thank you GOD!  I have learned that I have much to learn.  I've been reminded that I'm not in control of my own destiny, but I know Who is.  I've learned that Down's Syndrome "People" are really just like you and me - sons and daughters of someone who wants desperately for the world to see them for who they are, not for a label on their sleeve.  And if someone slips and says that "something's 'retarded'" then blanches and says "OMG - I'm so sorry, I didn't mean that!"  I'll smile and say "that's OK - I had to learn not to say that too."

Down's Syndrome: the education of me (part 3)

Start with part one :)

As we bundled our sweet baby and prepared to take him home, I had no idea what the future held for us.

We still hadn't told the kids, and they were going to Nana's house for a week or two anyway.  My mom stayed to help me with the baby since I had my first-ever C-Section and William was recuperating from back surgery.

Shortly after we settled in at home, I began doing lots of internet research.  My husband had already beaten me to most of it.  He had registered us with the Down Syndrome Guild of Dallas, who sent an information packet about 4 inches thick.  I still haven't read any of it.  There was a calendar with pictures of Down's Syndrome babies and kids.  I couldn't even hang it up.  The truth is, I didn't want my son to be like those kids.  I wanted him to be normal.

It was about this time that I started writing this blog post, but didn't publish it until Aaron was almost a month old.  It was also about this time that I realized that it was politically incorrect and insensitive to say that my other kids were "normal".  I've learned that the correct term is "typical". (Don't worry - I still struggle with it too).

The things that really flashed in my mind through all this time are all the times that I've laughed when someone was called a " 'tard" (short for retard).  All the times that a friend loosely hit their chest with a limp hand and said "dir-de-der".  The "tooty ta" dance that makes everyone look like they have "special needs"

and laughing as I said with my tongue planted to one side of my mouth "efferyone's specthial in thair own way."  I'm ashamed.  I'm not nice.  I'm a judgmental person, and now I am a mother to one who will be so judged.

This is what hurt the most; I knew that he would face people like me.  Nice on the outside.  Sweet to your face; laughing behind closed doors.  Not at you in particular, but at people like you.  Ouch.  Self-evaluations are painful under "normal" circumstances.  When it's so close to home the examination occurs with razor-sharp precision and the pain that accompanies that knife.

I determined to be a better person (for the bajillionth time in my life) and to eliminate the aforementioned activities.  What is harder than that though, is changing the way you view the people.

Our first Down Syndrome Guild meeting (quarterly meeting for new parents) was accompanied by a presentation of the "Team Do Something Great" that was a part of the SLANT 45 Film Project.  I was OK meeting the parents of the babies.  I was OK meeting the parents of the teens.  I was slightly creeped out by the teens fawning over Aaron (especially when one severely affected boy's dad kept saying "you were just like that when you were a baby.  You looked just like that."), but I completely lost it when the teens performed.  Here they sang, performed gymnastics, told jokes and other "talents".

I was sitting there, judging through outsider's "typical" eyes.  I saw mediocre at best.  I saw the "crowd" applauding non-accomplishment.  I was overwhelmed with a feeling that I couldn't do "this".  I couldn't applaud mediocrity.  I couldn't bear to think of this being all my son might ever accomplish.  I heard echoes of my mother's voice "he will probably never leave your home."  My elderly neighbor's words on hearing the diagnosis: "that's too bad - at least you'll always have him with you."

I retreated.  To the bathroom.  I sat in the pale green stall, hyperventilating and sobbing and thinking "if there were a window in here..."  After 15 minutes, I gathered myself together and dabbed in vain at my eyes - they refused to stop leaking.  I went back to the group where my husband was enthusiastically networking, meeting other parents, cooing over their Down's Syndrome Babies (that's what I saw, Down's Babies).  I sat down at the table, with my back to the room, hoping that no one would speak to me.  I didn't want to be there.  I didn't want to learn anything new.  I didn't want to join a new club.  William called to me to meet some people.  I tried to ignore him, but he persisted.  I played nice until we could leave, planning to never return.

To be continued...

Part 4

Down's Syndrome: the education of me (part 2)

Start with part one :)

It was New Year's Eve, 2010.  I sat in the dimming hospital room and had just urged the visitor who knocked on the door to "come in".

"Hold on a second honey, the doctor is here." I said to my 9 year old daughter, who had called to check in from Grandma's house.  I was expecting the usual "he looks great" but what I heard rocked my world.

I was alone, William had back surgery just a week prior - so he wasn't staying with me as he usually would (he also could not drive yet)  My mom's health is not good and I didn't want her to stay at the hospital, and my dad was really the only one who could help William if he needed anything.  The other kids were at my in-law's house.  I had confidently sent everyone away, secretly thinking that I would enjoy the peace and quiet!

The doc started by introducing himself and handing me a business card.  I listened as he said that he had been talking with the nurses and other doctors (thinking "uh huh - can we move on, I'm on the phone...") and that he thought that Aaron should be tested for Down's Syndrome.  My heart started beating faster, I felt the room close in.  I told my daughter "I'll call you back honey."

He started recounting signs of Down's Syndrome and whether or not my perfect baby boy had them.  Something about curved pinky fingers (he didn't) and a single crease on the palm of the hand (he did on one hand).  Extra space between the toes (he didn't) and low and rear-set ears (he did mildly).  Slanted eyes (a little) but no extra fold of skin.  Thick, protruding tongue, he had that.  There were more, thirteen I think...

The physical signs were enough to warrant the chromosome tests - did we want to do that now or wait until later?  Oh, and sometimes babies with Down's Syndrome have heart defects and lung problems, did we want to test for that now or wait until later?

My head was reeling, my mind racing to catch up to what I was hearing!  How could this be happening?  He looked so normal - there must be some mistake.  I felt sick to my stomach, like I was going to vomit.  My throat was tense and I knew that I would cry, but not now.  Now, I had to focus.  I had to pay attention and be rational and make a good decision for my baby.  I asked questions about the tests and how invasive they were, how necessary they would be, what they would tell us and how long they would take.  I told him to go ahead and do both of them.  I was relieved that the heart test would be back soon, disappointed that the karyotyping would take several weeks.

I called my husband.  Now I cried.

I called for my sweet Aaron to come nurse.  And cried some more.

My parents came to visit.  I told them.  We all cried.

I texted a few close friends.  They all cried with us.  My best friend even sent me a picture of the product of her days of crying; puffy eyes have never conveyed such love before!

Aaron's heart scan came back perfect.  I harbored hope that would mean he was normal.  I Googled "Down's Syndrome Babies" and compared the photos and descriptions, thinking "it's not true" - while secretly beginning to recognize slight traces.  We decided not to tell the kids or "everyone" (aka Facebook posts) until we knew for sure.

The next few weeks were a crash course in my own ignorance and judgmental nature.  All I thought I believed about special needs children and families would be tested and hung out to dry.  What was left was the realization that I was not as nice as I thought I was.

To be continued...

Part 3
Part 4

Death, Birth Control, Duggars and Mega Families (I have one)

Duggars announce #20 on the Today show

"Ah, the Duggars! Just the name stirs so many emotions! You won't encounter many people who don't have a strong opinion on this topic!"

So started my response to a post in an online grief forum this morning.  One of the recently bereaved moms had vented her anger that the Duggars will soon have 20 children and she can't even have one.  Her "Friends" on Facebook had chimed in their two cents (and many cheap shots).

When I was in fresh grief, the only people that I felt deserved babies were people who had lost babies. No one else had a right to procreate!

• Unwed teens? NOPE! 
• College party girls? NOPE! 
• Childless couples? NOPE! 
• Someone with a living kid or two? NOPE! 
• Happily married high-school sweethearts? NOPE! 
• Remarried blended families? NOPE! 
• The Duggars? NOPE! 

Why should anyone else be blessed with a child when mine was taken away?

Home Alone #Owling

I can't believe that Momma forgot about me on Sunday!  I know she was way busy, working in the Nursery at The Crossing Church, attending a meeting for parents of Down's Syndrome babies with the Dallas Down's Syndrome Guild and attending Brandy's Premier Designs Mystery Hostess party - but hey!  I was a little lonely!

I finished my masterpiece - what do you think?

I had a Coke (and a smile)

I shivered me timbers

I took a nap

I caught up on some genealogy

I hunted some big game

And I played dress up too!

How was your weekend?

check out Goldie's first day...
And some more here...
and on FB here...

Down's Syndrome: the education of me

Six months ago, Down's Syndrome was something that happened to other families.  It was sad, but "how brave of them to carry on."  Down's Syndrome was the dreaded thing that happened to women who dared to procreate after 35, which is why I had told my husband I didn't want to have any more babies after that milestone.

Down's Syndrome was the subject of a great sitcom from my childhood, which I watched and sang "la la la la life goes on!" with much enthusiasm.  It was at a safe distance, where I no longer had to be concerned after the "quad-screen" came back negative (which is positive).  It visited briefly when sonograms showed "shortened femur length which can be a soft indicator for Down's Syndrome" but flitted away with the assurance that it "could be constitutional, no other indicators are present".

Down's "people" were strange, not in the way that people who dress up at Star Trek conventions are strange, but in the way foreigners are strange.  Their customs, mannerisms, different language and interests... all so alien to me.  And then there were their parents.  The moms with the pinched faces, short hair and practical shoes; always weary and defensive.  And dads - if you ever saw them - aloof and disconnected.

I'm sure that there is a really long and comprehensive list of all the fears that new parents have.  Mine distilled to:

1. Losing a child
2. Having a "special needs" child
3. Having a child kidnapped

In 2006, my worst nightmare came true.  My precious 3rd child died in my arms.  Less than 24 hours prior, my husband and I had been forced to sign over custody of our older children to a family friend - we were under investigation by Child Protective Services.  This lasted nearly 2 weeks, then we weren't "cleared" until the official death certificate came back - 4 months later.

It has taken me nearly 4 years to "recover" from the pain of being under CPS suspicion, being separated from my children during such a difficult time and the whole process that assumes you are guilty until proven otherwise.  I will NEVER recover from losing Ian.  

Having a "special needs" child was not even on my radar when I was pregnant with Gavin.  I was more worried about miscarriage and genetic disorders that would cause a painful, short life - and stillbirth scared me.  I had attended several support group meetings for families that had lost a child before or shortly after birth.  It was great support, but now I not only knew 143 ways that a baby could die, I knew families who were living through it.  These were no longer statistics, they were real.

Once he arrived safe and sound, all worries were gone.  I wasn't "planning" to have another child.  When we found Aaron was on the way, we were shocked!  Happy, but nervous.  The first appointment was disappointing, the sono showed a gestational sac but no baby.  We were thinking blighted ovum.  I went to the cemetery and sat at Ian's grave and cried and cried (I figured no one would bother me there!)  After an hour or so, I pulled out my smartphone and googled "blighted ovum"  I came to this page.  I felt like it was God telling me that it was going to be OK, to just believe.  I dried my tears.  I took a picture of my sonogram (the one with "no baby") and posted it to Facebook.

Three weeks later I went back for another sonogram - there was little Aaron!  Measuring perfectly at 9 weeks, just as he should.  Then at 12 weeks- perfect and 19 weeks - the shortened femur thing, but perfect (and a boy!)  Then sonos every 4 weeks to chart the progress.  He was much less active than my other babies in uetro.  This was attributed to the fact that my placenta was anterior (in front) and I probably couldn't feel the kicks.  Now, I wonder if it was the lessened muscle tone?

Anyway - he arrived December 30th by  emergent cesarean section, since he was breech and the cord was wrapped around his neck twice.  He was beautiful and perfect!  My husband says that he "knew" about the Down's on the first day, that one of the staff had mentioned it.  I honestly don't know if someone told me, but I don't remember if they did!

My entire education about Down's Syndrome was only moments away.  On the second day in the hospital, the pediatrician came in.  Having danced this dance 4 times before, I knew he would say "He's healthy, got 10 fingers, 10 toes.  Do you have any questions?  No?  OK, here's my card."  In fact, I was on the phone with my daughter when he arrived, and I just said "hold on a second honey" and set the phone down on my tray.

What he said came as a total shock.  It rocked my world.

(I will post part 2 later)
Part 2
Part 3
Part 4

Ups and Down's (Syndrome that is!)

I can't believe that Aaron is nearly 5 months old already!  My how time flies when you can't tell night from day and are running on too little sleep are having fun!

I just thought I'd update you on Aaron's progress.  It's fantastic!  Our pediatrician even said if she had not seen the test results herself, she would not believe he has Down's Syndrome.  He is hitting every major "typical infant" milestone.  He's sleeping through the night, rolling over, reaching for toys, vocalizing...  So much more than I ever expected!  Thank you for your prayers, and thanks be to God!

Here are some of my favorite pics:

"My 2 year old brother wakes me up.  A Lot!"

"Is it time to eat yet?  Pretty Please!?!"

"Mommy's so silly!"

peace...

"Yo!  What up?  I got bathed!"

"My favorite spot, right next to mommy's heart!"

If you have an infant 0-12 months, link up over at the Baby Blessings Blog Hop!

Today was an unschooling day for sure...

My day started at a little after 3:00. AM.  While I snuggled happy baby Aaron in my arms, our toddler (the Gavin-monster) burst through the bedroom door.  Wide. Awake.

William took him back to bed and returned to our room.  By then Aaron was awake and hungry!  I started feeding him and almost drifted off to sleep when... the Gavin-monster was back!  I got up and took him back to bed again.  I explained that the sunshine was still asleep, so he should stay in bed.  then I rubbed his back until he was almost asleep (and so was I, although I was hunched over and my head was on the wall!)

I tip-toed back to bed, slipped under the covers, snuggled up with Aaron and then 20 minutes later, he was back!  I gave up and let him get in bed with us, where he proceeded to talk loudly, poke William ("daddy - you asleep?") and kick me in the back.  After about 10 minutes of hoping against the obvious that he would magically fall asleep, I got up with both Gavin and Aaron so William could sleep.

It was 4:20 AM!  I fixed 2 waffles and a glass of Vanilla Soy Milk and settled into the living room for North and South, a BBC drama on Netflix.  At 6:00 I made macaroni and cheese, by special request.  At 7:45 he excitedly proclaimed "the sunshine's up!" right before he pitched a terrific fit that daddy was leaving for work.  At 8:00 I dosed him with benedryl and put him down for "nap".

He slept until nearly 10, when I tasked Jordan (big sister) to watch him so I could catch a few more zzzz's.  So my day officially began at 12:15 PM, when I walked into the living room to find him naked, save for a wet diaper, standing in a pile of Apple Cinnamon Cheerios (which he later salvaged from the floor and ate one at a time, dipping them into a mug of water saying "I having my coffee" while I pumped milk for Aaron.)

Fortunately we had received 2 educational DVDs from Netflix, so I decided that would suffice for school today.  We watched a science video on cloning, then I caved to the craving for Sonic Happy Hour.  When we returned home, the mail had arrived, bringing a Chasing Fireflies catalog.  Now, Jordan and I love this company - they have so many fantastic things!  If I ever loose my sanity and gain a fortune, I'll order one of them.  There are a few styles in particular that she really likes, so I had her cut them out and make a collage. We are going to use it as inspiration for her next dress.  Notice I didn't say "Easter Dress" - I'm not making any promises!


Calvin had been busy with Legos in his room, he came in and announced that he had completed his Architecture lesson!  He made a house, table and bench.  He wanted to make a soda fountain for his Star Wars Lego men, but ran out of pieces.
When he saw that Jordan had an art project, he wanted one too.  I asked him what kind he wanted to do, and he went and got the Paper Making kit.  With a little help from this Papermaking Recipe, we made several, umm... sheets?  Calvin decided to go free-form!

Now Jordan is making paper, chicken nuggets are in the oven, and I've got to be at the church in 45 minutes to meet someone to pick up the garage sale leftovers.  Then a rush back home to make a Finance Committee Meeting with my very own "free-spirit" financier.  We're going through Dave Ramsey's "Financial Peace University" with our church.

So, to all of you who wonder "how does she do it all?"  The answer is, I don't.  I haven't cleaned, washed dishes or laundry, there is no food in the house, the living room floor is crunchy (and not in a green-organic way).  The ECI therapist will be here tomorrow to work with Aaron (for his Down's Syndrome), my mother-in-law will be here later this week and my house is a wreck.  I trying desperately to work out a positive note to end on - I don't like leaving you all hanging and depressed. (Perhaps that's a little dramatic!)

OK, here's the positive note:

....

....

I got nothing.  sorry!

Raw, honest and unfiltered...

What a roller coaster the last few weeks have been! My husband had back surgery on December 23rd.  He was supposed to stay a day and a half and then be home on Christmas.  That didn't happen!  He didn't come home until the 27th.  While staying up at the hospital with him each night, I had LOTS of contractions.  I thought for sure that I was going to go into labor (good thing he was recovering on the same floor as labor and delivery!)

Alas, I did not go into labor, so we kept our scheduled appointment for an induction on the 30th.  When I arrived, they had some trouble finding the heartbeat, because he had turned around again!  He had been transverse breech, but had turned head-down, as recently as the 28th.   After a quick sonogram, I was told that I would need a C-section.  We scheduled that for 2 hours later and I waited.

I was relieved that the birth process would be easier for Aaron, but scared of the additional recovery time that a C-section would mean for me.  I was quite dramatic with myself as I sat on the operating table getting my spinal block!  I imagined sprinting from the room; I argued with myself about what I was and was not going to do, but in the end, I had a C-section with no medical complications.  Aaron had the cord wrapped around his neck twice, so the C-section DID turn out to be the best route!

Recovering from a C-section isn't quite as bad as I thought it would be, but I certainly don't recommend that you go getting one on an elective basis just for fun!  LOL  I was able to come home on January 1st and have really enjoyed the painkillers that were prescribed!

On December 31st, while I was still in the hospital, I had a visit from the staff pediatrician.  I expected him to say "everything is normal - he looks great!"  I was shocked to hear "We think that your son may have Down's Syndrome."  Over the last week I have learned quite a lot about Down's Syndrome, and today the genetic karyotyping test results came back positive - we are officially the parents of a Down's Syndrome child.

I have such mixed feelings.  I am certain that I love this child irrevocably!  I am certain that I am proud to be his mother.  I am certain that I will do my best to provide for his needs to the best of my ability, as I do for all my children.

I am uncertain as to why I cannot stop crying!  I will let you in on a secret: I'm not as strong as everyone thinks I am.  I just tend to process things first so that I can put on a brave facade.  I'm not even strong enough to do this now though.  I have decided to process publicly ;)  I haven't cried like this since we lost Ian.  These are sobs of grief.  Hot, bitter tears and convulsions that cause nausea and shortened breath.  My eyes are so puffy and swollen that my husband made me take a Benadryl, just in case it was an allergic reaction to the mysterious bug that bit me while I was in the shower, crying.

The only discernable difference (right now) is that this is not grief over death.  This is grief over life.  A changed life, a life different than I imagined or planned.  A life of potential hardship and judgement for my beloved child.  A life of learning and challenges for me; for my children; for my extended family.

I have a strange duplicitous conversation that goes around in my head.  I am not sure that I can even give it adequate description.  One part of me says that it would have been better to not have gotten pregnant, that his life would have been better not even existing (I know that sounds terrible, but I'm being honest here).  Another part responds that I wish I had just known sooner, so that I could have better prepared.  Another part scolds that part for being so foolish as to think that finding out while still pregnant would have been better!  And that's the conversation that I'm willing to share.

I'm trying really hard not to feel sorry for myself.  I don't suffer from any illusions that life is (or is supposed to be) fair. I don't believe that good people only "deserve" good things.  I like what my friend Laura used to say "You want fair?  Fair is we all have sinned and deserve to go to hell.  You want fair - or you want grace?"  I want grace, I  don't want fair!  Still, I am only dirt, only human.  My flesh cries out "WHY?"  I buried a child, you'd think that'd be enough to ask of one woman, of one family!  The second self creeps in and says "that's why you're strong enough to handle this."  I'm so torn, I'd really like to lay down in the floor and have a good temper tantrum that would put my 2 year old to shame!  Or get in the car and drive and never come back.  Or jump on a plane with a one-way ticket to Fiji (if I only had that passport!) 

I know what I should do, and truthfully I know it is what I will do in the end: Trust God, accept His plan and will for my life, "stay strong and carry on".  But right now, I don't wanna!  I want to eat (more) chocolate.  I want to go back to bed and put the covers over my head.  I want to become a social recluse (ok, that one is a stretch - that would probably never happen!)

I'm trying to look for the BS (that's "bright side" - what did you think?  LOL)  So far the only things that I've come up with are that Down's Syndrome children are very happy and loving, and that I'll get to meet a lot of interesting people in the new support groups I'll find.  I'll try really hard to add to this list.  My friend Hollie reminded me that I already have a great support system of people to help me (she ditched her plans for the day, got re-dressed and came to tell me I'd be OK - thank God for friends like that!)

Day 2
Last night we told our parents and our daughter.  Of course everyone said that he was just extra special and it doesn't change how they feel about him.  Our daughter is only 9, so she doesn't really understand all that it means.  I am looking forward with mixed feelings to the return of our other boys.  They've been at my mother-in-law's home for several weeks while William and I recouperated.  The oldest is 12, and I won't publish this or make Aaron's diagnosis public until I've told him, but I want to do it in person.  He does know a bit more about DS, and even more about how cruel people can be, especially kids, to those who are different.

In addition to the constant headache I've had ever since delivery, I've been sick today with intestinal pain and all that goes along with it (I'll spare you the details!)  I'm pretty sure that I made myself sick with worry yesterday.  I did hear back from a friend that I've reconnected with on Facebook.  She has a 12 year old son with Down's Syndrome.  I reached out to her for direction and she replied immediately with her phone numbers and an assurance that she was willing to share anything with me.  She didn't say "I'm sorry", I think she's the first one.  I'm not quite sure how to resond to that, even though I've been dealing with it for 4 years.  That's the standard response to losing a child too.  It doesn't quite fit, but it does seem a little more apporpriate when you're talking about death.  When you are talking about a living, and otherwise healthy, child - it just is a disconnect.  Perhaps I'm wrapped up in semantics, but there has to be a better response.  If you can think of one, let me know!  I sure can't.

Aaron has started being much more vocal today, much more insistant about feeding time.  It's good to hear him being more alert, but I had gotten used to his quiet demeanor.  He's staying awake longer in the daytime too, and I was actually able to get some sleep last night.  I feel like I should chart his times so that I can get a visual picture of where we are and see the progress, but I'm just too tired.  Maybe tomorrow.

Day - um, what day is it?  OK, we'll just go with the date: January 26th
I've been doing really well the last few days.  I've learned a lot about DS, the pediatrician told us that his muscle tone is really good for a DS baby, and we are very hopeful that all of his DS symptoms will be mild.

I'm really tired of being strong, and even more tired of practicing what I preach (can I get a witness?  LOL)  Going through tough times and facing unexpected challenges really shapes each of us.  I know this, but there are still days that I want to just run away or at least go back to bed.  Anyway - I'll keep on putting one foot in front of the other and taking it one day at a time, and all that jazz.  Aaron is a huge blessing, he is so sweet and cuddly.  This is not a burden to bear, it is simply another path for my life.