Friday, May 8, 2015

Leightons Mother...

It's been a while but lets see if I can put into words the thoughts that have been floating around in my head. 

I've been thinking about how it feels being Leighton's mother.  A mother of a child born with special needs. Being a mother of a child that has the label….child with a genetic DEFECT.

Being a wife and mother was all I ever wanted to be. When I was eighteen I stuck my life goals up on my wall by my bed and it was a total of three things. A temple, a family, and a four wheeler ;).  It's not like I wanted it to happen really quickly, but it was my future plan.  I wanted to have a family.  College was hard for me because I never could find a focus on what I wanted to major in, so I took classes that interested me.  Really important classes. Classes like dance conditioning.  I didn't want to change the world, or be famous and have any attention on me. I just didn't have any grand future plans. I wanted and still want a life of peace, calm, and simpleness.  I'm just not a world changer. I went to college, tried out and made the dance team (which by the way was how I met the hubs, thanks to dance friends), and I worked for my Mom.

So when I'm 20 along came my dream boy.

I was reading in my college journal a few months ago and I had written a list of what my perfect dream guy would be like. I had just broken up with a guy who had asked me to marry him a few times and I just knew he wasn't what I wanted in a husband, so I had written what I did want. It wasn't anything about looks. It was all about personality and I was laughing because it was like real life Mary Poppins. Someone somewhere had made hubs right off that list of 30-ish important traits he would have and magically he had shown up 3 months later.  I didn't realize this had actually happened until I just read it. I'm going to be honest some of them are kind of annoying now, but I just have to appreciate it because I literally asked for it! Also cheesy but I had drawn a cartoony picture of him (I always doodled in my journals) and he had that exact hair cut, and had worn the same kind of plaid shirt on our first date.

Six months later temple is checked off.

Then a few years later we have our cute little Bubba, and I quit working for my mom, and quit waisting money on school. I get to stay home with him  He's such a boy. Dirty, crazy, wild, and prone to give me heart attacks every second of my life! He's also a my best buddy. He's super outgoing and talkative, just like his daddy.  He loves to make new friends and make people happy.  He hates football (much to his dads sadness), but he loves baseball just like my Brothers, Father, and Grandpa. He gets in trouble a bit, but he tries to be a good boy. He's had stitches a few times and broken his nose, but he tries to save me from extra worry about him. He's great to text me where he is going at all times because he doesn't like me to worry.  

Then came sissy and she is so girly girly, and such a good student. She is smart and her school teachers always love her. We don't worry to much about her because she's always trying her hardest to learn and improve, and she doesn't really ever get into trouble. She beats to her own drum in her fashion choices and cracks us up with her wit about life.  She loves to dance. She especially loves ballet (thanks to seeing New york city ballet on sesame street when she's was two).

Of course they aren't perfect, but the hubs and I think they're pretty perfect. We, like most every other parent, think were so lucky to get these amazing littles as ours.  Of course they have embarrassed us…Like the time Bubba had the massive fit at Target when he was 6, and the time sissy refused to give her church teacher a high five, or the many times she refuses to say hi to people, but they don't really embarrass us. We love them and are mostly always happy to claim them as ours.

And then comes Leighton.

I waited a while to have number three because I felt we weren't going to have it so easy this time around.  I knew that people who have perfectly healthy kids every time are extremely fortunate. That just doesn't happen for everyone, and deep down I knew it wasn't going to happen to me. I was going to be thrown a loop for number three I just didn't know why.

(first holds after her open heart surgery 12 months)

I thought some kind of health problem like asthma like my brother or maybe diabetes. I thought it would be something hard but more like that. So when I feel like I have the courage we go for number three, and my 20 week ultrasound ends up being a lot longer then the other two. They look really close at her brain, hands, mouth, heart, feet, umbilical cord.  They say her kidneys have extra fluid, but it isn't really concerning because nothing else is off.  The hubs is fine with that answer and goes on without a second thought, but I worry, and I feel she has something. I keep getting a feeling she has Down syndrome, I see kids with Down syndrome everywhere. I never noticed them before, and then I notice them everywhere. I think a lot about it, and hope it isn't true. I pray it isn't true. When I'm ready to push I tell hubs to tell me if she looks "different" he laughs and tells me I'm crazy and in the quickest easiest delivery ever comes our little Leighton. She's is purple and the doctor says come on cry baby cry, Finally she does and the nurse takes her over to the incubator before I see her face. They clean her up, put her hat on, and wrap her in a blanket and hand her to her Daddy and then he brings her to me and my world stops, and I say "I know" and he kind of starts crying, and in my stupidity I think well this is my new reality, there is no more hoping it isn't true. I'm just going to take her home and protect her from this mean world, I will do my best.  Little did I know babies who have Down syndrome don't usually just get to come home with you.  She didn't ever leave the NICU again until she was ready to come home in a week.

 Later alone in my room I think to myself I'm going to be the Mom who everyone feels sorry for when they see me with her. Their going to think I'm glad thats not me, and can you imagine??? I'm the odd women out with the special needs kid. What the crap I'm barely 31, now I'm going to have to hangout with 60 year olds because only older women have kids with Down syndrome.  I'm so embarrassed, what kind of failure am I.  I can't even have normal babies. I'm the worst mom ever. What ever did I do so wrong to have this happen to me.  I try to express to hubs how I'm feeling. I obviously love her, but being a mom is my life's work. I never wanted to do anything else. He has a master degree, a career he keeps progressing in, an increasing income, as proof of his success,  proof that he's doing a good job at his job.

 When your a stay at home mom you want to do a good job too, but you have nothing really to show for it and so you want these kids to have the potential to turn into adults you can be proud of. I get that doesn't always happen because they have there own choices to make and life to live, but you don't want to mess up at the get go, and I really felt embarrassed to have screwed it up.  You want to give them everything in your power to succeed in life and something I had done had ruined it for her.  How could I have ruined it for her in the only area I actually felt I had a little control. When she was in the womb! These thoughts are why I proudly post her pictures, and why I write my personal thoughts about it for people to read.  Because I was so wrong about it all, and I just didn't know any different. 

The next morning after a lot of tears, scary words from doctors, and a nerve racking procedure she had done in the middle of the night, I finally got to hold her again. A calm came over me and I felt such happiness in her presence. I promised to her I would love her with everything I had. I don't even know if I truly did that with my other children, because I knew they would find love and acceptence from people other then me in their life. With Leighton I didn't know if she would find it, and so she would get from me, all the love I could give her. She would get all of my heart. The sense of failure, and embarrassment didn't instantly go away. It was a roller coaster, but whenever I was in the NICU with Leighton everything was right in the world.

In the first week I made a choice to make this a positive and happy blessing.  I decided to never again feel sorry for myself about this wonderful thing that has happened to me.

I hope by my example my  children can be proud and not embarrassed for having a sibling with Down syndrome and for now its proven to be true.

I know I still get looks of pity, I see it, but it really doesn't bother me.  I know people look at me and they are glad its not them, and thats ok because now I'm glad it's me and not them too.  I will keep doing what makes us happy as a family helping my kids achieve what's important to them.  I have learned so much about what success, happiness, and contentment really is for me.  It has changed from what I pictured as a 18 year old, 25, year old, even 31 year old. The best part of being a mom is learning to broaden your view, social circle, and even ideals because of what your children teach you. Having Leighton brings me back to what's truly important for me as a mom when I let myself slip a bit.  I don't know if anyone but the hubs can really understand what it feels like to be the parent of this amazing girl. We daily have conversations about how lucky we are, and how much we love her all the time. We say we can't and don't want to imagine life without her. We are so grateful we get this experience to have her with us in our life.  I still love being a mom, its still all my dreams come true, and it's even better then I thought it would be. All my children bring me happiness in their different ways and I'm so glad I have these, completely different from each other, little people to love and get to know. I love to get to witness new people open up to Leighton. I get to see a reflection of our joy cross their face for a that small moment in time.

It's just a small hint they get of the huge imprint of joy she has made on her families lives.