Maddox had an eye appointment today.  While we were waiting for the doctor, I fed her and we know what happens when she eats.  She poops.  Here we are in the tiny eye room and she poops.  Yikes.  I need to buy some spray for her diaper bag, that was embarrassing.  If I tell him she did it, would he believe me?  I quickly changed her and opened the door.  I think we pulled it off.


(The photo above is after her eyes were dilated)

The doctor came in and dilated her eyes.  He held up a black and white spinning drum, one of the oldest optometry tests in the book, and she passed!  I watcher her pass.  I was so proud of my little girl.  He checked for a lazy eye and there was not one, they were both working well.  He did a few other tests, talked about why here eyes appear to cross but are not really crossing.  This was a very informative appointment.  He shakes my hand and says, “You got a good one, these are the best Down Syndrome eyes I have seen.”

All the nurses came and oooed and awwed over her.  I smiled and stepped back and for the first time in our lives, did not crawl into a hole.  This was our daughter and she just passed her eye exam. 

It was nice outside so Scott decided to go rake the rocks out of the yard and I decided to take Maddox for her first walk outside!  We went up and down the driveway.  I learned that we need to pave it.  Maddox’s little head was jiggling away in the stroller.  It was cute and all fun and games...UNTIL.....she puked!  Oops!

That evening we took Maddox to the park for the first time with some friends.  It was windy and she had to wear a hat, she hates hats.  Needless to say, the park did not go over well.

I have been dreading this.  I am not sure why because if any group of people is going to accept Maddox it is my co-workers.  What do I say to them, what will they say to me.  Will it be exciting, will it be mournful?  There are so many mixed emotions but I need to face the music.  I am going back to work part time after spring break and will see all these people so I just need to rip the bandaid off and go do it.  

As I drove into town, I texted a very special friend.  It went something like this.

Where are you?

I am freaking out.

Come look at your phone.

I can’t do this.

I am going to keep texting until I hear from you.

I am here.

Nothing, nada, no response.  My great friend had her phone on silence!  Way to be there for me :)  I went into the first building, yes, on autopilot.  I went through the motions and everyone was incredible.  I went to my next building and the teachers loved her.  I left her for a moment to talk to my boss and when I came back, Maddox was playing in all the toys in the therapy room just like a therapy session.  My heart sank and floated at the same time.  I had always dreamed of my little girl coming in to play in the closet full of toys.  I did not dream that she would need that closet full of toys.  My heart floated because this little girl has so many people that love her.  

My great friend made this her facebook status for the day:  

Watched a fabulous friend of mine do a very brave and amazing thing today that will set the path for the rest of her days. In awe and totally feeling the respect for my friend,the first step is so hard, but the rest to follow are easier. WHY am I so blessed with such greatness? Sorry I was not there to answer the text! You did it by yourself though didn't you?  March 26 at 7:10pm

Thank you, it means a lot to me.  Also, thank you to my co-workers who embraced Maddox today.

Ever since Maddox was two days old, mom and I were talking about the day we would pierce Maddox’s ears.  My ears were pierced when I was a baby with a needle and ice.  This is something I wanted to do for her as well.  

We get to the mall and my heart is racing.  I feel really bad so I asked mom if she would hold her while I videotaped.  Mom said yes but tells me later she almost had a heart attack while doing it.  Maddox has had so many blood draws and pokes that this was nothing.  She cried for about 90 seconds afterward and you know what, I loved every second of it.  It sounds crazy I know but you have to know our history.  When Maddox was in the hospital and they would take vial after vial, she never cried.  I was so scared, she either didn’t feel pain or was too lethargic to notice.  After every draw, I would ask if she had cried yet and I kept getting no for an answer.  So today I got to play mommy, I got to hold her and comfort her because it hurt, this is a normal thing and while my heart broke, I was ecstatic.  The gals who did the piercing did a great job.  Who ever said that Maddox has low tone is also wrong.  We found out today that she hates to be restrained and is extremely strong.  This gave me some hope.  We will be crawling by 9 months and walking my 14 months.  You wait and see.  Maddox is one tough cookie!

Sito about had a heart attack while holding Maddox. As you can see above.  Really, the worst part of this event was holding Maddox down, she does not like to be restrained.

BEFORE

AFTER

We went to a wonderful St. Patricks Day party.  There were over 10 kids running around, decorating cookies, popping bubbles, making jewelry, and decorating easter eggs.  I clutched little Maddox for dear life and couldn’t help but wonder....Next year would she being doing these things?  Being around other children is hard.  I even had one mom approach me and say, “When my son was born they thought he has what your daughter has.”  She couldn’t even say the words Down Syndrome.  Almost as if this is the plague.  If you say it you get it.  

I thought to myself how lucky I am.  I have a baby that sleeps all night, doesn’t spit up, doesn’t have a diaper rash, likes her car seat, nurses like a champ, is rolling over, and smiling.  She is perfect in every way.  You know something else.  People always say about themselves that their ears are too big, or their chin sticks out, or their nose is too long.  Maddox has the most perfect almond  shaped eyes, a small button nose, and delicate chin.  She has the facial features that everyone desires.  

Don’t you get it, she is perfect....


                                      It is everyone else with the problem.

I have never checked into a hospital, had a procedure at the hospital, or spent the night at a hospital until our car accident this December.  Since then, I have spent two whole weeks there and had a surgery!  

This is how it went.  We checked in at 11:30 AM.  I have not eaten since 9 PM yesterday.  I am grumpy when I am hungry!  

I was called back and they put me in a heated robe.  A heated robe!  I gotta get me one of those!!  

I was in my little cubby pretty much freaking out.  I asked one more time if I did not have to be put out for this and the answer was no.  I had this overwhelming fear that I would wake up to find out that the doctor did a hysterectomy by accident and we would not be able to have kids.  The doctor came in and I told him to please save my uterus!  He smiled.  

They started my IV and the ‘knock me out so I don’t remember or feel anything’ drug and apparently I asked if I could count sheep.  

The next thing I knew I woke up and asked if they had taken me back yet, I totally didn’t remember a thing…..UNTIL….we were at McDonalds and it all came back to me.  I remember getting strapped to the table and commenting that the strap was really tight.  Turns out the tight strap was the blood pressure cuff.  

Anyhow, since the surgery I have been a new woman.  My energy is back and I am on the go go go again.  I didn’t realize how bad I was feeling until now.  Thank goodness for the great outcome.

This is not a day I am looking forward to.  Today we sign our daughter up for 26 years of special education.  I personally had 12 years of it and that was enough. On the other hand, I am a product of special education and speech therapy, I should be proud.  There was a time when we had to fight to mainstream me and now I have a Doctorate in Occupational Therapy.  Who says Maddie won’t have the same chance at life that I have.

On the other hand, my mind is not there yet, all I can think of is that I don’t know if I can fight the fights.  

I now not only have to fight it for myself, for the families I work with, but now I have to fight for an education for our own daughter.  

I am going to break down if I have to sign the paperwork.  I will make Scott do it.  What is it, what is the reason I am in this job and why is this all happening to me?  Yes I know there is a purpose but give me some insight.  Today we hold the meeting with my co-workers to arrange services for our daughter.  There is no magical pill that can just make me ok with this.  

March 24th

Mom cleaned the house so it would be perfect for Maddox’s teacher while and paced around pretending to help.  My mom was excited to see what the teacher would do.  I carefully chose the blanket that this teacher had given me for the baby shower and laid it out on the floor.  It was a magical graceful moment.  I prayed this blanket had magical powers to help Maddox perform developmentally appropriate.  

As it turns out, Maddox responded to her session very well.  She was tracking and batting at toys purposefully.  She snuggled and held it together very well for the teacher.  There is nothing special about this education.  It is simply very educated people trying to help Maddox achieve her full potential.  Oh and a side note, ‘normal’ kids miss out on this awesome opportunity.  (I am still trying to find the bright side in dealing with this-no offense was intended for the healthy children)

Maddox’s world seemed to change today and she was alert for several hours after the session.  Tonight she didn’t want to go to sleep.  Mom and I sat in her room and watched her talk to her butterflies for an hour and ‘giggled like highschoolers’.  It was so cute, another good moment for the record books.

We had a great work time with Maddox. We put rattles in her hands for the first time and she tried to put them in her mouth, very cute!  We also had her sitting in her bumbo chair for the first time ever and she did a great job.  She continues to roll over.  

We ordered pizza tonight and I decided to take Copper along with me.  I drove slow, had the windows down, soaked in the early spring air, and reminisced-just like old times.  It was a really nice break.

Later tonight we gave Maddox a bath and guess what?  She slept in her crib tonight for the first time.  It gets even better.  She slept the entire night!  Maddox loves to sleep just as much as her mommy does. 

Scott and I got up early to clean the house before his parents came to visit.   While we are cleaning he told me my hearing aid was whistling.  I went into the bedroom and decided to finally and carefully put on my new molds so the whistling would stop.  I had a bad feeling about this and was very careful as i replaced the parts.  I started with the right side.  The new hook screwed on so tight and so I loosened it and tightened it again just to see if maybe I had it on wrong.  I thought to myself, I wonder if the 13 year old plastic material will break before the internal mechanics of the aid.  

I then took the left hook off and was carefully replacing that one when snap, just as I flipping imagined it.  I took a deep breath and was pretty much in shock.  I walked out to Scott in a silent panic and said, “It broke, my hearing aid is broke.”  

I tried to find the key to the fireproof box to get my spare set out but panicked.  Scott kept telling me to calm down, he knew I was on the verge of a major meltdown.  I put the back up [air in but they did not work.  I would be as if you were putting on a pair of eyeglasses you wore 13 years ago, major funkness about it and makes you extremely dizzy like vertigo. Yep, I pretty much lost it.  We use our ears foe everything and to suddenly lose that sense  for you don’t know how long can drive a person to insanity and after the past two months experiences, I was there.  

I also had a doctors appointment where I learned I was going to have to have a procedure to remove fragments of the placenta that remained in my uterus.  Until this year I have not taken a single antibiotic since 2000.  I don’t take medicine if I can avoid it (thus how I managed to deliver naturally).  I have just found out I am going to be put to sleep for the procedure.  This just plain freaks me out.  A medicine that allows for me not to feel pain and not to remember anything about the procedure.  Creepy.  To make matters worse, Maddox is not drinking from a bottle and now I have to pump and dump because of the anesthetic.  I feel like I am a row of dominoes, one event triggers another and when I fall, each one lands flat on their face. 

A quote from my journal that day reads, “I have hit rock bottom.”

You learn really fast who your friends (and family) are in a situation like this.  Some whom I thought were my friends turned the other way while others whom I hardly knew stepped up to the plate swinging.

Yes, I got help, tons of help, and owe a great big thank you to everyone involved in that process.  

What I have learned today is the harder I hit the higher I bounce.  

This post is not all bad I promise.   I am on my way up now.  I decided to talk with Maddox.  For the record, she came alive today.  She was smiling, cooing, attempting to make facial movements, anticipating, and doing amazing baby things.  I really began to fall in love today.  

But.....I had to leave her for while this evening because I had another team waiting for me.  Yep, my volleyball team needed a player for the tournament.  Out of shape and not having done more than walk up a flight of stairs in 9 months I was going to hit the courts.  When I got there, I really thought I could shake the past two months off and be myself.  I learned it was not that easy, I tried so hard but was anxious, sad, and jittery.  Everybody at the tournament was very respectful but I learned something that night.  I looked around and saw a husband who had lost his wife and a gal fighting cancer.  I am sure there were many other personal victories among this crowd and I realized that this is life, it must go on, life is precious, and no matter how bad it gets, you have to keep on climbing.  You have to because there is no other way to get to the top.

We had an extremely busy day planned starting with Maddox’s first visit to see daddy at work, then our tax appointment and then to the vet.  I had to load one dog, one baby and a million bags to go with them to hold the water bottle, dog leash, breast pump, milk cooler, diaper bag, and of course my purse!  I was exhausted before I pulled out of the driveway.  My plan was to get Maddox to NEMROC to visit Scott at 3:30.  What did I tell myself about planning?  Who am, I kidding?  We got there at 3:55.  Maddox was dressed in a cutsie outfit and she never got out of her car seat because I didn’t get it together in time.  I was a little bummed on top of exhausted.  That is the recipe for a few tears but I held it together pretty well if I say so myself.  Scott cancelled our tax appointment so we could get Daisy to the vet.  We also had to make a few stops in town but postponed those plans too.  I am at this moment remembering the quote that many parents told me when I was pregnant.  “There’s always tomorrow.”