It took over a month to commit to doing Maddox’s first photo shoot.  Everyone around me kept coaxing me and told me if I didn’t do it soon I would regret not having any newborn photos.  Guess what?  I regret not having any newborn photos.  The good news is that we redeemed ourself by having an incredible first photo shoot on February 23.  

Why was I so scared?  I have to be brutally honest.  Some days when I look at Maddox I don’t see “our” child in her.  I don’t see Scott’s eyes, or my mouth, or Scott’s nose.  I see that she has the exact same eyes, mouth, and nose as every child with Down Syndrome.  Why do we need more pictures of this?   Reluctantly on this day, I agreed to do the photo shoot.  The key word is reluctantly, not regretfully.  

We arrived at the studio, stripped Maddox down and she was in Heaven playing on the paper.  We put her on her stomach and my flower child lifted her head like a pro.  We snapped the photo.    This is going to be good, really good, I can tell.  We were all working hard to get the fairy dust shot.  With a couple of close calls and fairy dust blown in every possible crevice of Maddox’s body we decided to call it a night.  Don’t worry, Maddox did get her revenge for the fairy dust incident and decided to let her insides loose on mommy’s pants.  

As it turns out, we had an amazing time photographing Maddox, we smiled and laughed continuously.  What is even more special are the incredibly priceless photos taken of OUR daughter.

Maddox gets to host her first party today!  My mom and I painted her toenails red (when Scott was not looking).  We invited a bunch of people over and made a huge crock pot of swiss steak.   We pigged out on the most yummy chocolate cherry cake ever.  The kids had gifts to open and decorated sugar cookies.  Maddox had two outfits to wear and changed mid-party, what a princess!  Everyone had a nice time.  These are the best evenings, when all my friends and family are present.  I momentarily forget the newfound burden Scott and I will forever carry.  That’s the bad news.  The good news is that Maddox purposefully smiled for the first time today while she was awake!!  



SITO
I love You
TUESDAY, APRIL 13, 2010 - 11:09 AM


ANONYMOUS
I don't understand how you can say you momentarily forget the burden you will carry for the rest of your life, it's your daughter. She's beautiful and alive.. Just love her.
WEDNESDAY, JANUARY 11, 2012 - 09:44 PM


VANESSA
I understand...that was your frame of mind at that moment of time...and you were being honest.  No one should judge you for your honesty.
THURSDAY, JANUARY 12, 2012 - 01:23 PM

We had it all planned out.  

Maddox was going to be born during the winter and we decided not to take her on any major trips until spring when the germies are gone.  By spring time, she would be a few months old and we thought a nice trial trip to Mackinaw City for some shopping would be a great place to start on a nice spring Saturday.

As you have gathered, nothing really goes according to plan anymore.

Our first trip was not in the spring, Maddox was not a few months old, there was no trial trip, and we definitely did not get to go shopping.   

Instead, our first trip was when Maddox was 5 weeks old, during a snowstorm, four and a half hours away to Ann Arbor.  

Below is a journal entry from our first of many appointments.  

I had packed extremely light and it wasn’t five minutes into our hotel room that I realized I must be a new mom.  I had taken Maddox’s diaper off to let her bottom air out and she peed all over her changing mat, on the bed, and through both layers of my clothing.    

I debated on included this next comment on my blog but the truth and life of a new mom must be shared.  Deep sigh.... Yes, I took those shirts off, hung them over the blower on the heater to dry and later, put them back on. 

Tonight is Maddox’s first night in a hotel.  She did perfect, slept through the entire night.  Little did we know she was resting up so she could show those doctors her strength, drive, and health.

The morning of the appointments, Scott woke me up and I fed Maddox.  She must be a little nervous for her debut because she threw up for the first time this morning.  After she was cleaned up and Scott and I were ready, Scott went down to start the car.  Maddox and I had a moment, I picked her up, held her tight, and cracked out the words, “I hope you check out today.” She was sleeping but she managed to give me a big grin.  That’s it, that’s the sign.  I am holding her to this silent promise she just made me.

We found our first appointment at the physical medicine and rehabilitation clinic.  Scott took Maddox out to get on the scale and everyone in the office turned to look at her while oooing and awwwing.  I don’t know what I felt at that moment, empty, excited, anxious, embarrassed?  It was a crazy stand of emotions.  We are not supposed to be here.  

Scott and I nervously waited for the doctor.  I am embarrassed to say that I had three pages of typed questions for the poor fellow and he would have answered every single one of them but I decided to prioritize so that the rest of the patients could have a turn today.  We learned that this doctor has a son with Down Syndrome and shared several personal stories.  I left the appointment feeling great about Maddox’s physical development but the doctor had just opened my eyes to a whole world of questions regarding siblings of a Down Syndrome child.

From this clinic, we drove to the hospital, parked on the upper deck and like two new parents, fumbled with how to open the stroller for the first time.  We were both so nervous.  We found our office and checked in, only to find out we were an hour early.  We attempted to find the cafeteria and ended up asking for help.  Along the way we found a cute coffee shop with a sofa so we set up camp for the next hour there. 

While we waited, I thought about how nice it was to blend in.  Up north we are quickly becoming the family that had the Down Syndrome child.  Word travels fast and stereotypes are made, one of the joys of living in a small town.  Down at U of M, blending it was nice.  In fact, the more I watched the luckier I felt.  There was a family of 5.  The parents had a girl, a boy with CP, and a younger boy.  I started wondering how they took their news, what modifications would they need at their house, does their insurance cover his wheelchair, do they have a van with a lift, how do the siblings treat the boy with CP, did the parent’s dreams of a perfect family change like mind did?  Mu list of questions went on and on, but I caught myself, took a deep breath and realized that Scott and I should be thankful.  I need to stop feeling sorry for myself, get back on the horse, and do what I do best, which is to help other families cope.  (I only wish it was as easy to do as it was to type that).  To distract myself I grabbed a magazine.  On the cover was a family skiing.  I had a panic attack.  Would we ever be able to go skiing as a family?  Will Maddox be able to follow directions well enough and look out for others on the slope?  Can she ride a ski lift?  I realized at this moment how forever our lives have been changed.  You guess it, I cried....Again.

Just before appointment time, I decided to take her to the bathroom and had my first changing table experience.  THe people coming and going all had to stop and peek at Maddox.  She is such a people magnet, she makes others smile.  While they oooed and awwed over her, for an instant I felt like a normal parent showing off their new healthy baby.  I scooped her up and walked back to the comfy couch in the coffee shop realizing again we were in a hospital and that instant was over.  

It was now appointment time, the dreaded but much anticipated pediatrics genetics appointment where Scott and I find out if we are carriers of the Translocation.  The geneticist comes in and Maddox decides she is starving.  I tried to feed her and listen to the doctor at the same time, this was the moment I have been waiting for since January 5th and now I can’t seem to process a thing.

I remember she tried to find a diagram of the Translocation and that Maddox still has three chromosome 21’s but two fused together at the short arm of the 13th and that she will have all the same symptoms as a child with Trisomy 21.  We also found out that Scott and I have normal karyotypes and we are not carriers of the Translocation.  I should have popped a bottle of champagne to celebrate but instead I started crying.  I had an intense amount of  hope that just maybe the doctor would say that Maddox was a rare case and maybe she is only going to have the features, not the cognitive delays associated with Down Syndrome.  Turns out she is a rare case of Translocation but we are to assume she has Trisomy 21.  Ummm, that went in one ear and out the other.  We are going to assume she is normal and treat her no different than any other child.  She will help clean the dinner table with us, take out the trash for her allowance, and learn to clean the cat’s litter box with the best of them!  

Next, the pediatrician came in.  He assessed her and said, “She can see, can hear, is nursing, tone is good, her heart is good, what more do you want?”  I take it he was pleased.  We rushed to the next appointment, cardiology, at Mott’s Children's Hospital in the basement.  You could tell it was the older part of the hospital.  I started to get a pit in my stomach, this is where bad news happens.  I just had that feeling.  It was erie.  She had done so well today.  Was our luck going to run out?

The first thing they did was strip Maddox down and did an EKG.  The wires weighed more than her, she looked so vulnerable on that table.  I think for the first time ever, I felt empathy for Maddox.  My heart ached.  They pulled the stickers off her chest and she had red marks all over her.  We are in the cold basement of this very old hospital and our daughter has red marks on her chest and is crying.  I took a deep breathe and tried to take this all in.  This is not what I envisioned on that beautiful day that I told Scott we were going to have a baby.  

The wonderful, tall, crossed eyed cardiologist came in and also crossed his long legs.  He listened to Maddox’s heart for several minutes.  Oh, my own heart was racing during those silent minutes.  He looked up and said, “There is no reason to redo the echo, there is no murmur.”  We packed so quickly and got the heck out of dodge!!  Within 10 minutes were were out of the hospital, loaded up, and leaving the parking garage.  

Today was everything we hoped for and more, Maddox kept her promise and had checked out!

Today marks an incredible day for many reasons.....

For those that don’t know, we did have genetic testing done when Maddox was approximately 22 weeks.  Unfortunately the blood was sent to the hospital instead of the MSU lab.  By the time we found out about the error, we were almost 6 months along. There was no turning back so we decided not to repeat the test. 

I talked to a friend this morning.  She said that everything happens for a reason and she believes that if we had found out Maddox had DS ahead of time, they would have taken her when her heart rate decelerated at 33.5 weeks and we both truly believe she would not have made it.  Maddox is a blessing, not a disappointment. Is she a blessing, or are we just trying to find reasons to think she is?  I hate the torn feelings?  I just need to pick one and go with it.  

Here is the good news.  I went up to see the OB nurses at the hospital today for the first time since I left my cozy four walls there.  I decided today would mark a lot of firsts.  I did my hair and make for the first time since our car accident on December 8th.  I must have been looking pretty bad because everyone instantly noticed!  

Tonight in OB I had graduated from the hospital room to the nurses break room!!  I am no longer a patient, these nurses are no longer my caregivers, these people are incredible friends.  They have seen me at the lowest point in my life and loved me for who I am.  


A side note, I couldn’t help but think now I am one of those family’s on TV going back to see all the wonderful doctors and nurses that took care of them.  I was looking for the TV cameras, shoot....Didn’t see em, so I pretended the small security cameras tucked away in every corner were capturing our famous reunion. 

It was beautiful, so many ooos and awwws.  I barely had a foot in the door and was surrounded by the flock of blue scrubs.  I didn’t even have the car seat on the ground and the buckles were getting undone.  I smiled, breathed in, and absorbed the moment.  This is pure love.  No matter what you look like, how smart you are, what history there is, I have just witness raw, pure love.  It was an amazing moment.

Some other things happened tonight night.  Have you ever been on emotional roller coaster?  If not, let me tell you how it rides.  I went from being on that high peak to hitting an all time low in 2 seconds, just like the coaster does.  There happened to be a birthing class taking a tour of the OB facility.  There was about 20 people walking down the hallway, women with their bellies and daddys to be.  Each couple turned their head to see my precious package, I covered her up, and ran around the corner.  It was that moment that the eyes filled.  What am I doing, why am I hiding her, I should not be embarrassed but I am.  I think I do this because I don’t want to face the inevitable questions.  Will they know, if they do know are they wondering if I know....And so on.  

Ok, enough OB, we packed up and decided to take our first trip to Walmart.  Maddox cried the entire time.  When I got home, Scott was in bed and it was too late to give Maddox a bath so we put her right to bed.  She was very fussy, in fact cried until Midnight.  There is always a pot of gold at the end of the rainbow....Our stubbornness that night, not picking her up, set the pace for future bedtimes.  We now have a perfect sleeper who does not need to be rocked to be put down and has learned to go with the flow depending on the night and best of all loves loves loves her crib!