When I knew I was a mother

I hear a lot of people say they knew they were a mother the moment their child was born, or the first time they got peed on, funny or happy moments like that. I completely agree it was those kind of moments that made me a mother. But the moment I knew was a mother wouldn't come until after I already had 5 children.

Janelle was a tiny little baby when her visual impairment was discovered and I went home and cried. I cried not knowing all the things she would see, and I mourned the things she would not. Turns out she does see pretty well.

At ten months it was clear she was pretty far behind other babies, and she began therapy. I sat through every OT, speech, and vision therapy session and learned everything I could to help her. This is when it started to happen. It was at that time I realized I would dedicate every moment of my life to my children if need be. Yet, I still wouldn't say this is when I knew.

Fast forward a few years to this past spring and summer when Nellie was being poked and prodded by what seemed every doctor in the world. Her asthma became so bad there was a few times I had to carry her into an er because she couldn't walk on her own. This wouldn't seem like a major task, but Janelle is a very large sized toddler. Soon after we got the results from the genetic doctor and I was devastated. It was during this time it hit me.I knew I was a mother.

As soon as the devastation cleared I began to lose myself in research. Yes, some of it was scary to read. In fact a better word is terrifying. To read about the kids who go to sleep and never wake up, the seizures, the multiple other things that could go wrong. My head was spinning for weeks.

One night as I was laying with Janelle fast sleep beside me I looked at her and began to cry. I wished I could take every ounce of her pain, of her frustration, and suffering. I would gladly have taken it twofold just to save her from having to feel it at all. And then she woke up and when she saw me looking at her, she smiled. That was it I knew I was a mother.

As parents we will all have moments when we worry, when we are afraid for our children, but when a mother cradles a child in her arms not knowing if that child will live a full life, what that child's future holds, not knowing how many days, months, years they'll have with their sweet child, well that changes a mother. It makes her stronger, smarter, a fighter. It makes that mothers heart grow five times the size it was before and makes her determined to spend every day making life as beautiful as possible for her child.

I'm not going to say there aren't days I mourn what could have been, what should have been...I do. I break up every time I think of the wedding day she probably will never have, the children she shouldn't have, the life I wished for her the day she was born. But there is one thing I see in her everyday that makes all that hurt go away. I see God through her eyes. I see His love, His mercy, His absolute glory. I wasn't unlucky to have this child, I wasn't being punished, no God blessed me with her! He gave me this special, beautiful child to teach me the ultimate love. And it is the strength I gained from having her that has made some other things in life more bearable.

I KNOW I AM A MOTHER. And in the end that's the greatest gift of all!!

4 years ago

Four years ago a little angel entered my life. I held her tiny 5 Lb. 15 Oz. body in my arms, never realizing how she would turn my whole life upside down. I couldn't know the parade of doctors, specialist, and therapist we'd be seeing so much they became like family. No, what I saw was a blond haired, precious child, who had that sweet fresh baby smell. Sure, I knew something was wrong. I always knew from the day she was born, but I pushed those thoughts away and focused on the little life I'd created. She was and is perfect in every way.
Tomorrow we celebrate Nellie's fourth birthday and so much has happened in the past year. We have the answers we searched for, She starting to express herself, and form real relationships with people. Then there are the things that have never changed. Her smile still lights up my world and washes away all the bad things in life. Getting Nellie cuddles can warm the coldest of days, and when I look at her I know everything is so worth it.
Four year. It's hard to believe that is all it's been since she changed me, made me a better person. It's seemed like a lifetime. I don't know what tomorrow holds and yes, I know the risks, but I pray beyond anything to have another 80 years with her.
My birthday wish for Nellie is that she always keeps her innocence to the bad things in the world. That she never gets down, or allows people to make her feel less than what she is--perfect. Most of all I just want her to keep smiling. Through the pain, through the test, through everything I want her to keep that one thing that lights up my world.
Happy Birthday baby!

The family of 15's

What I dubbed the family of 15's is the mothers, fathers, siblings, ho have a child in the family with an extra 15th chromosome, and of course the children themselves that have this rare duplication. These families have become my support, hope, friends, understanding, and of course love in the past few months. They have all the qualities of a family even if we have never or will never meet in person.
I have cried at the set backs of these families and relished in the triumphs. I know we were all chosen to be a part of these children's lives by God and each others lives. This has brought us all together and for that I am thankful everyday.
In biblical numerology 15 means: deals with the energy that is found within the acts of divine grace.
This is true of all these families!
I know today's blog is short and it's been a while since I posted, but I was inclined to write this while thinking of a friends little boy today. Keep our children in your hearts they are gifts and have so much to offer the world. Look past their delays and see the sunshine that radiates from them :)

Where we stand

I've been so busy lately it's been hard to find time to post. There have been doctor appointments, more tests to set up, and overall chaos. Janelle's speech is improving at rapid rates and as it does her personality is shining through more and more. God is good and has again answered my prayers. I asked to hear her voice and boy has He provided that! With finding her voice Janelle has also found that she can express her dislikes, her anger, and happiness through words. So we are now going through what most people call the terrible twos, but with a nearly 4 year old. My days consist of saying no Nellie, don't put that in your mouth, ewwwww that's gross, Nellie please put your clothes back on, Janelle don't dump that on the floor, you get the picture.
We have also been shocked to hear her tattling. Oh, I thought I would have one daughter who didn't say mooooooooooom, so and so did this, but alas it has happened. Janelle will be yelling mooooooommmmm, Emma took mine. (This means Emma took something from her). Last night she kept saying Nellie no timeout, no sit in chair. I have to assume she was put in time out at school as she wasn't put in time out here. She can spell her name out loud now too, which is amazing to me since my other children were much older when they did this.
Yes, things have been hectic, crazy, and at times very stressful, yet I hear that voice even when she's tattling and the pride wells up in me. She might as well be reciting Emily Dickenson or Charles Dicken's because to me the words coming from her are sweeter than any poem, what she says is more brilliant than the greatest novel ever written. Even if she is only telling me NO!

Just one day

Last night I was talking with a friend I haven't talked to in a while. Life has been getting in the way of phone conversations. I finally let go of everything that has been eating away at me. I am not a brick wall and I am toppling. After 4 years of struggling alone with Nellie's issues, of not allowing anyone to take over any of her care I admitted I need help. For a few minutes I felt like I was failing her. Like I wasn't what I needed to be. I can't go anywhere since no one will babysit Nellie, my life revolves around doctor appointments and I need to get away, just for a little while. I have always felt like if I allowed anyone, even Nellie's father to take over any of her medical stuff they'd mess something up, but it's time.
I had a talk with my mother and she is going to watch Nellie once a month so I can get away. This is going to be a great reprieve for me and I am excited!!! I don't think a lot of people realize what the day to day life is like for a family with a special needs child. It is hectic, busy, crazy, and so wonderful all at the same time. There are more sleepless nights and trips to the ER than most people face in a lifetime. It is our normal. It's our life and perhaps I wouldn't have chosen this life, but I wouldn't change it. I couldn't imagine my world without my Nellie in it.
You may ask what I'm going to do when Nellie goes to stay with my mom for a few hours and the answer is simple. I'm going to take the kids and do something that is hard to do with Nellie. We are going to go to a real restaurant. One with menu's and waiters! One dinner where the kids can sit and talk to us without us having to chase Nellie around the place and try to keep her from yelling. Then when we are done I'm sure I'll be at my mom's to pick her up early because I miss her ;)

I swear I'm not starving you

Regardless of what Janelle believes i am in fact not starving her. Apparently if not given cookies, candy, froasty freezy freezes, she is starving. For the past week I have been on guard at the kitchen door. She has tried to climb under my legs, push me to the side, and if I go to the bathroom she makes a mad dash for the fridge. We were hoping to avoid putting locks on the fridge and cupboards, but alas we have to.
On the plus side since we rid our house of as much high fructose corn syrup as possible Leanna's ADHD is barely noticable!!!! I had to praise her up and down yesterday and tell her how proud I am. May be soon we will be able to say goodbye to Adderall forever!!!!!!
In conclusion if a short girl, with shoulder length, thin brown hair comes knocking at your door saying cookie, don't give it to her! If a short, skinny, dark haired comes knocking feel free to feed her :)

poopy poopy everywhere

nothing like an end of summer stomach bug o put everyone in a grumpy mood. I feel awful, yet have had to clean up after Nellie and Devony for two days now ewwwww. Since Nellie is basically refusing to use the potty this is even nastier. This whole situation has made my head go into the toilet bowel many times now, gotta love the pregnancy sensitive nose.
I'm so ready for this bug to be gone. I'd say I'm so ready for school to start, but that just brings on another vicious cycle of viruses and germs. Sometimes I feel like I am fighting a never ending battle. Like the germs hide in a corner, wait for me to give the all clear, that our house is illness free, and they form their attack plan. Yes, I see them there snickering at me when I feel like it's okay to relax.
Alright, I better end this blog and arm myself with the can of Lysol spray and paper towels. Everyone wish me luck, if you haven't heard from me in a few weeks the germs won!