On Tuesday night at midnight we decided on a name for our daughter.
Maddox Lucille McClintic
The nurse wrote this name on the board in the ICU. I stood looking at it. It is official, she is here, she is ours, and we need to embrace this. Only it isn’t that easy.
The nurses and my family kept telling me I needed to get out of the hospital for a few hours. It sounded good but I can tell you, it wasn’t good. My first trip was just a short trip down the road to Big Boy for dinner. Everything was a blur, the people, the building, the car ride. As we were walking out of the restaurant, Scott and I exchanged words with another young couple who had a baby three days earlier. This couple stood outside of their car smoking while their new ‘healthy’ baby sat in a cold car alone.
You guessed it, I lost it.....again.
I wanted so badly to be back in the hospital in the comfort and care of the OB nurses. I had decided I never really wanted to leave the hospital, it was safe there. Ohhhh the nurses are wonderful. They never treated us any different than any other new mother and child.
On Thursday Scott, my mom, and I went home so I could see the dogs and take a ‘real‘ shower. I was still on autopilot, pacing through the house. I walked by Maddox’s room. I needed to get some more things for her to have at the hospital. It took me three more passings before I mustered the courage to go in. I opened the closet, who was I kidding, of course I cried.
Yes it is time to get me back to the safe walls of my hospital room before I crack.
We did have a wonderful scare when we returned. Scott was parking the car. My mom and I walked into the ICU. Only this time, the room was dark and her bed was gone. Mom and I walked through the rest of the nursery and our hearts stopped. A mothers worst fear, was Maddox shipped out or even worse....Did something happen to her? Was this punishment for not being thankful?
This was one more blow I just could not handle. Mom and I ran to the nurses station where our nurse looked up from her computer and smiled at us. She asks, “Were you looking for Maddox? Here she is.”
Two more milestones happened tonight. My milk came in and Maddox drank it. We are going to nurse! Also, we took our first family photo tonight, it felt right.
Today we had to cave a little and gave Maddox her first supplement. Her weight is dropping and she is very lethargic. All my friends came to spend the evening with us. We have figured out how to make our hospital room universal. It can be a kitchen, we can cook meals in there. It can be a family room, we can visit. It can be a counseling room, and at night it makes a safe place to sleep. DId I mention how bad I want to stay here, reality scares the living daylights out of me.
On Saturday Scott and I slipped out and ran some errands. I also discovered today that the old school Medela pumps are excruciatingly more powerful than the cutesy backpack pumps at the medical supply store.
We went home again tonight and Scott’s parents came up. His mom made a wonderful lasagna and I fed the dogs dinner tonight something I have not done in over two months.
90 seconds of normality, it was incredible, but didn’t last nearly long enough.
It is Sunday and we are off to another rough start. The newspaper has photos of perfect babies in it. I constantly find myself looking at the features of children now. Are their ears low, are their eyes slanted, do they have a bridge in their nose. Will I ever stop thinking? Will I be able to accept this and look at Maddox as our daughter? The statistics and literature says we will. We are numbers now, not parents.
On a positive note. I took my very first photo of Maddox today. Some more friends stopped by, bless them all. Tonight Scott and I went to McDonalds, just the two of us. I am so in love with him. Tonight was just like old times sitting and having dinner with my best friend. Once we were back in the hospital we played a silly game while we waited for the elevators. He knows me, he loves me and knows just what makes me tic. He is my rock, what an amazingly strong man.
Today is the day we find out whether or not Maddox has a confirmed diagnosis of Down Syndrome. We thought we would know at 1, then we were told 6. It was 7:00 PM before the doctor came.
From 6:45 to 7:00 was the happiest 15 minutes ever. I stared at Maddox and seemed to have every “downs” feature justified. Her eyes are perfect, her ears are exactly like Scott’s, and so are her toes. Her precious pale skin and smile belong to me. There was absolutely no way they were going to tell me she has Down Syndrome. I had envisioned all the nurses coming in to celebrate with us. I had my plan all figured out.
The door knocked and there stood the doctor and one nurse. I had all the hope in the world that this plan was coming to a good end just as I envisioned.
The next 20 minutes I don’t quite remember. All I know is that Maddox does have a rare form of Down Syndrome called Robertsonian Translocation. This accounts for 4-5% of children with Down Syndrome. Oh, and one minor detail. We should not have any more children because one of us could be a potential carrier of this genetic condition.
When am I just going to quit planning? Getting knocked down isn’t bad, getting up is the hard part.
My reaction at this point really truly would have made for most dramatic performance of the year. You see it in the movies but never envision you could hit a point so low in your life. Everything I had worked for and planned for had just went wrong. They wheeled Maddox out of our room and my mom left and Scott and I embraced each other.
Scott grabbed my face and said, “I can’t do this alone, I need you.”
I was slipping away into the deepest of darkest depressions ever and his words pulled me back out faster than you can imagine.
An amazing friend was waiting for me that evening and we spent the next hour together. Through the tears and silence, an amazing strength was looming in the room (thank you for being there that night).
This by far was the worst day of my life but I pray that someday soon, I will reflect on this moment
and be incredibly thankful.
awesome story mrs.mcclintic!!!--- my name is mike sisca and i have a very dear friend of mine named angela dunn who just over 6 years ago--gave birth to an amazing ds baby named gage!! angela like you was completely caught off guard by this "condition", but through research and friends , family and church--- she founded the NW Florida D.S. Organization. this video realy touched close to home with me. Gage has been a part of my life since day one ---- there is nothing that boy cannot do!!! some thing's he does better than "normal" kids! it is truly mind blowing!!!!! believe it or not ---angela had to fight for gage's right to go to public school------ people can be so ignorant!!! guess who won???? MOM!!!!!!!!!!! Angela has a 22 year old and a 11 year old --- she does not treat ANY of them different!!!! DO NOT PUT LIMITATIONS ON THE BABIES!!!!! i have talk enough --but if you woulike to talk or get in contact with Angela and Gage my email is firstname.lastname@example.org
WEDNESDAY, JANUARY 11, 2012 - 09:13 PM
i gota say the little girl is adourable my brother has down symdrome if u hav a facebook page id love to add you
FRIDAY, JANUARY 13, 2012 - 03:15 PM
She is so beauiful. My baby was born on june the 13th. She has Down and i feel the same way ask you do. She will do everything with a lil help ask every other child. I love her so much. she is my special baby. I found out before i had her that she had it. At 1st I was sad, upset, depressed and then a calm came over me and i know that god was telling me everything would be alright all i had to do was love her which came easily :) i dont tell anyone about the downs not even my husband until the day she was born because i couldnt take anyone prejudgeing her. She is perfect. Your story is wonderful and i was happy to see the video u made. It was great it made me feel all warm on the inside.
FRIDAY, JANUARY 13, 2012 - 07:24 PM
LINDA INVER GROVE HGTS
Dear McClintic family I want to tell you that I to have a Ds person in my family to. I have to tell you she is the the best thing that ever happened in this family. Her Name is Jennifer and she is almost 36 years old. When she was born the Doctors told my sister and her husband to give her up, put her away, she will NEVER make anything of herself !! It was like throw her away and forget about her ! Well, let me tell you, sure things came harder for her but she did and still is doing everything the Doctors said would never happen.! Jennifer join the Minnesota Special Olymipcs as a child and has been in for about 30 years. Her sports are, bowling, basketball, bocce, track and field and just this year she joined in poly hockey. She has been a athlete of the year in area 12 where she lives ( which is White Bear Lake ) and has been athlete of the year for the state of Minnesota, has been to Japan for the state of Minnesota in her sport of Bocce and also has been to Nebraska, again for Bocce, so you see she is very active in sports. Jennifer also lives in a group home in White Bear and hold down a job as well. You would fall in Love if you were ever to met her. So, you see, never give up hope as I am sure you had heard a million times over and over again that the Good Lord gave you your special child for a reason, the reason being you and your husband along with my sister and her husband are very special and strong people , he knew that you could and would bring up his Angels with Lots of Love and to show them support and courage. Gold Bless you and your Beautiful Maddox.....
FRIDAY, JANUARY 13, 2012 - 11:46 PM
Your daughter seem to be the happiest little girl of the world. I am 14 years-old and my dream is to be a pedo psychiatrist. Not so long ago, my neighbors were a happy couple, which had an autistic smart little girl. I used to play with her and baby-sit her sometimes. I totally agree with you. Whatever how a person thinks or looks she can accomplish enormous things. As a normal little girl, my neighbor had her fears, her passion (the people around her), her dreams, and her favorite toys. I watched your video a hundred times and you seemed like the happiest family I have ever seen. You daughter will accomplish a lot of things in the future.
SATURDAY, JANUARY 14, 2012 - 07:32 PM
You have the same story as me!! My son Josiah is 20 months and has DS. I love sharing my story because it encourages others and I love hearing other people's stories becasue it encourages me. Thanks!!
SUNDAY, JANUARY 15, 2012 - 01:16 PM
I also have a DS angel. My story is similar in that we had no idea until he was born. I, like you, knew the second I saw him. Call it mother's intuition. Little Maddox is very fortunate to have you as parents. She is precious! Our little Wyatt is the youngest of seven (his, mine, and ours). He turned three on January 9 and just started school. I am a teacher so I will tell you that no matter what state you live in, public schools begin servicing any special needs child at the age of three. They can't deny you. It's the law. Please feel free to locate me on FB under Amy Landis Nesler. I'd love to share stories and pictures and be support for each other.
MONDAY, JANUARY 16, 2012 - 09:56 AM
I fell in love with Maddox the minute I saw her beautiful face. I love the determination/ strong drive and that is exactly what will pull you all through day after day.Tears are important as they are a good release of both positive and negative emotions. Your message to everyone is beautiful, we need to take a stand and be a voice for all of these precious children. I will be praying for all of you, may the Lord bless you richly.
TUESDAY, JANUARY 17, 2012 - 02:46 PM
ROSLYN - ROXANNE'S LITTLE SISTER.
I just wanted to say hi to the gorgeous Maddox. I also wanted to share a little with mum and dad.
I am 44 my big sister Roxanne is 46. After all theses years I am still introduced as her little sissa but the good news is evidently I am also her best sister ( ok I am her only sister but hey I'll take that) She is what we called handicapped growing up but I know the terminology has changed since then but to us it is like saying she is left handed those aren't the words that describe my sister. She has many of the same social hurdles that Maddox will have but not the medical ones. She has been the centre of our family of 5 always. She knows there is no Santa but still goes all gobsmacked when she sees him. She has friends that are hers alone. She can remember our phone numbers ( that took 16 years). And she never ends a call without telling us I love you. She was bridesmaid at my wedding ( she looked amazing and got the biggest cheer of the night) and she is godmother to my second daughter. She adores being an aunt and she is good "mates " with my dad now mum has passed. My parents worried about her future and had to let her live away from a home in her late teens in care so she would gain some independence and to take worry off my parents as they knew they wouldn't always be around and they refused to let my brother and I be anything but her siblings. It wasn't easy but she goes on outings and activities and she loves it. We still vacation together and spend lots of time together. She has buried my mum but she is ok and that is because of the things my mum and dad did to make her have her own life. She loves tv and has a fancy new LCD one. We have always supported her but I think she has always held us together she made the love in our family twice as deep between all of us this uncommon bond of love and loyalty we all share. Some things are tough and watching others wrongly judge harsh but let's face it they are idiots anyway besides I don't care about the thoughts of people I don't respect. So just know the good far outweighs the bad and this lifetime of but conditional love beyond the norm that you will all share is worth it As my mum used to say it was tough and scary and worrying but I wouldn't swap her for anything. Lots of love to all of you Roslyn - Roxanne's little sister.
MONDAY, JANUARY 23, 2012 - 03:39 AM
I saw your video through a post on our local Special Olympics FB page...this is an incredible and beautiful gift to your daughter. I am the sister of a remarkable 32 year old woman with DS. She is my inspiration, my hero, my friend and the godmother of another extraordinary young person-my 3 year old son Brady. I am the mother of a very special little boy who was born with a very rare chromosome duplication on his 1st chromosome. We also were unprepared and unaware that Brady would be born in any way other than "normal." I have gone through some very dark and sad days...still do sometimes-I struggle to understand why-but I know there is a reason. Brady is here to teach me about acceptance and belief. Your video was remarkable. I applaud you, I understand you and I know your beautiful Maddox will accomplish anything she sets her sights on. Love to your family.
THURSDAY, JANUARY 26, 2012 - 09:23 PM