Saturday, October 26, 2013

October 26, 2011- 2 years ago

Two years ago they wheeled you away on a bed that was way to big for you. I kissed your forehead and promised you, promised myself that I would see you later.  I watched you look back at us, I watched you look back as if to say, where are you going? Why aren't you coming with me?  I didn't want to let you go, I didn't want to let them take you.  I wanted to grab you and run out of that hospital, but I knew I couldn't, you needed to be there, they needed to save you.  A week earlier your health started to fail, you were "failing to thrive" as the doctors put it, the surgery needed to be done as soon as possible.  We were going to the cardiologist sometimes twice a week and to the pediatrician at least once a week, we pretty much lived in doctor's offices.   The holes in your heart wouldn't repair on their own, so they needed to cut your tiny little chest, they needed to put you on a heart and lung machine, they needed to patch the holes in your heart.
That day was the longest day of  our lives, I can vividly remember every moment of that day as if it was just yesterday.  I remember handing you over to the doctors, I remember screaming inside, but I didn't want you to see me upset so I smiled at you, kissed your forehead and broke down as I saw the doors shut with you on the other side.  There was nothing I could do now, what if you were scared, what if you were crying, what if you needed me, there was nothing that I could do.  You were laying in that cold operating room with all of those machines, you were probably cold, you were probably frightened and I couldn't be there to hold you, I couldn't be there to tell you that it was going to be okay, I couldn't be there to wipe away your tears.  Minutes felt like hours and hours felt like days, not knowing was agony, 8 hours of surgery, 8 hours you were gone from me, 8 hours I couldn't help you, I couldn't save you.
The doctor's came out dressed in their scrubs, all I heard in the next few minutes was "She is doing good, the surgery went well, and you can see her in a few minutes."  I didn't hear anything else, the explaination of the surgery is a blurr.  I remember thanking God that they saved you, thanking the heavens and anyone else who was listening that you were going to be okay.
When we walked into your room, I was going to turn around and walk out because I thought we were in the wrong room, it was only when the nurse called you by your name that I realized it was you.  You were so swollen and orange from the iodine, you had so many tubes and wires coming out of you, I couldn't see my baby anymore.  Oh how I just wanted to scoop you up into my arms and love you and snuggle you but I couldn't, it would be too long before I was able to do that.
The next 8 days would be long and exhausting both emotionally and physically. Daddy and I never left your side. You were doing so well, until they gave you your first dose of morphine.  Your little pink body and face started to turn blue right before my eyes, and you were gasping to take a breath, I heard you inhale then exhale then I didn't hear anything else, you had stopped breathing.  I have never been so scared in my life, Grandma and Grandpa had arrived just as this was happening, I think they aged 25 years before my eyes.  They had to insert the breathing tube again.  They saved you again, they got you breathing again.  The beeps and sirens of all the machines in your room, I will never forget those sounds for as long as I live. They would beep when your heart rate would drop and doctors would come in to check and make sure you were okay.
I am grateful to all of your doctors and nurses for the wonderful treatment they gave you, they saved your life, they saved our lives, I can never repay them for such a wonderful gift. As the days went on the tubes and wires were removed one by one.  Each and every day you got stronger and stronger. I will never forget the day they nurse told me I could hold you again, they had to tuck all your wires in and hand you to me.  It was so wonderful to hold your warm body against mine again. I was scared you wouldn't know me, I was scared you would hate me for leaving you that morning with strange men and women dressed in scrubs.  But you knew me, and you didn't hate me, you fell asleep in my arms that night, and I have never felt so content and happy in all of my life.
By the 8th day the doctors said you were ready to go home, your little body had endured so much, I was afraid to take you home.  It was such a wonderful feeling walking through those hospital doors knowing we were on the other side, we were going home.

I cried the a lot that week, I cried more tears than I thought was possible.  When we got home it was hard, I was afraid, afraid I would hurt you, afraid you were too fragile.  But each and every day got easier and easier and we got through it all.  You were a new baby, you had become the baby I believe you were born to be, you had strength, energy, you yelled, you cried.  Before the sugery you couldn't cry your body was too weak, so we had never heard you cry, not once.
You began physical therapy and speech therapy in November.  Each and every day you have been proving to everyone just how truly wonderful and strong you are.  You are eating better, you are sitting all by yourself, you are doing the things that some doctors said you may not do.  It is going to take you longer than most babies and you may have to work a lot harder than other babies but that is okay with me.  You take your time, you do things when you are good and ready.  I am so glad that the surgery is behind us, and your cardiologist appointments have become yearly visits instead of monthly visits.  We are thankful that we were able to get through it all even though at the time we had no idea how we would.  We are thankful for our true miracle, our gift from God.

Tuesday, October 22, 2013

Did You Know?????

Did you know?  That is the question I get most often from people that bugs the crap out of me.  Did I know what??????  Did you know she had Down Syndrome before you had her?  No, but what does that mean, what does it matter?  To me that says, well if you had known you would have aborted her.

I don't know how you do it!! I don't really know either but I just do it, what other choice do I have. She needs me and I will do everything I can to give her a wonderful life.

My children are my life.  My daughter is my daughter not my Down Syndrome daughter. Yes she has Down Syndrome but I will not define her but her diagnosis.

Monday, October 21, 2013

That Friday, I Will Always Remember

It was a Friday  October 21, 2011 a chilly  afternoon around 4:30 or so and I was in Westchester, NY with my daughter at her weekly cardiologist appointment.  He looked concerned, he looked worried, she needs the surgery within the next few days he said.  I think I almost passed out, I remember there was a med student in the room, he got me a chair and gave me a hug and a glass of water and told me everything was going to be okay, I will never forget him and what he did for me that day.
The cardiologist came racing back in the room, he was on his cell phone with the surgeon, the surgery would be on Wednesday October 26, 2011.  I had 5 days, 5 days to spend with her, 5 days to love her before I had to turn her over to the surgeon.    That was the hardest 5 days of my life, knowing what was ahead, knowing what we were going to have to go through.  I will remember this day for the rest of my life.  Just look at her now.

Thursday, October 10, 2013

Our Lives as We Know It

Down Syndrome is my life now, if you had asked me when I was 25 and just getting married if I thought this would be my life today, I would happily disagree.  Now it's just the way it is, we live with therapies, with delays. We also live with happiness, the kind that no one tells you about.   The way she makes us smile from ear to ear, or the love we feel in our heart for both our children becomes magnified. We know how lucky we are to have this little piece of wonder in our lives.

Monday, October 7, 2013

Enjoying October

Being that the south is now our home we have been missing fall a lot.  There are no changing leaves here, no crisp clean air, no smell of fireplaces burning in the air, no cozy sweaters, no cool weather.  It just hot, really hot at least for October.  We wake up everyday hoping this will be the day we need to put on a sweater.  So while it is sweat worthy outside I figure I can at least pretend that it is fall inside.  Inside it is cool and crisp, with the smells of apples in the air, the need for a sweater, the smell of pumpkin coffee brewing.

So if I cannot have fall I will make the best of it and pretend that it is fall inside.

Thursday, October 3, 2013

Down Syndrome Awareness Month

October is Down Syndrome Awareness month.  Our little girl has come so far. She is starting to talk and walk.  It has been a long and hard 2 years for her, but she is so easy going and so loving. We just love her.

Tuesday, October 1, 2013

Little Things Make Me Happy.

So hubby did the most romantic thing ever, he woke up extra early, took my car and got me a full tank of gas, and left me a special treat of breakfast and a Dunkin Donuts coffee on the table.  To me that said he thought of me, wanted to save me time, wanted to help me and to make my day better. It's the little things that make me happy.