The Truth of The Matter: Special needs life.

This has been difficult for me, finding the words and stories to share. I have so many, but opening up to all the truths and emotions is not easy. This life style that was given to me through my daughter was one I wasn't prepared for, but I do feel there is a reason. So maybe just being honest will not only help others but my self as well. So.. here it goes. The truth...

After my daughter was born I tried very hard to not dwell on the fact that she would be delayed. I just thought if I really work with her everyday on things that I know are going to happen I can either prevent it or lessen it. So I would talk to her all the time, just knowing that one day she will repeat what I say. (mama, dada, baba) over and over again. I would put baby shoes on her little feet even though she couldn't walk yet and didn't need them. I put head bands and little bows in her hair because I knew she might have sensory issues. If I start now with all these things, maybe she will be use to them and they wont bother her as she gets older.

For a while that was working just fine. I would have her all dressed up and she would smile and laugh at me and babble her little sounds and I thought, well even though you can see in her face she has down syndrome.. she really is just like any other little baby. I just knew that this would all get easier as time went on. She may do things at a slower pace but she will get there.

Lets fast forward a couple years. After the Autism diagnosis, I didn't know where I stood as a mother. Everything I had been working so hard to help her with seemed to just be falling apart and I was playing this unbeatable game. She was taking her clothes off, She would throw everything she could get her hands on, She was rolling around on the floor, She was eating her hair and swallowing it. Which was causing stomach problems. "What is this? What would make her do that?" Doctors told me it was PICA which is a disorder where you eat things that are not eatable. "Wow okay didn't see that one coming" Now I have to keep her away from almost everything, because most of the time babies will put things in there mouth for a while and then they grow out of the habit...not Madeline. I cried for hours after I had to cut off all her beautiful long hair. I held the light little curls in my hands wondering why my daughter wasn't able to have this.

It's not fair, that she can't have long hair, or wear pretty dresses because they are heavy and itchy. I can't paint her nails or buy her little sparkly shoes. She won't play games with me or say anything back to me when I speak to her. I envied other moms, I did. I was so jealous that they could talk to there daughters and how they would tell them funny stories. Or how there daughter went to the nail salon and they got manicures together. I was jealous of the little girl in the grocery store wearing an Elsa costume skipping down the isle. Because my daughter couldn't wear a costume or skip or even walk beside me in the store.

I remember the woman at Walmart who stopped to tell me how pretty Madeline was, and I thought "aww someone sees her as a normal little girl" then she askes how old she was and I said " she's five." While little Madeline was sitting in the front seat of the cart just behind the handle, where the toddlers sit flapping her hands and babbling. The woman gives me this look as if I'm lying to her and says "huh, she looks much younger" and then she just walks away. As if she was disappointed that she waisted her compliment.

There was also the day we all went to the store to run errands and at this point Madeline is in the bigger part of the cart. She wouldn't walk with me through the store or she would either completely run away or lay in the floor and have a melt down and not get up. I had to get milk, but I had no where to put it. So I thought well milk is heavy she wont mess with it. I was wrong, I had grabbed two gallons of milk and set them in the cart. I walked down the isle and saw some candles, so I stopped for a second to look. I had just turned my head when I heard my youngest daughter Ellie yell "NO!" and I turn to see Madeline standing in the cart with both gallons of milk lifted up and before I could move, there they went up and over into the floor. Literally exploding everywhere, I was so embarrassed. Everyone was looking at me and I was just confused. Why would she do that? I still don't know to this day. My best guess is, she wanted to touch them, they were cold, she didn't like the feeling and there they went.

I look back at these moments now and smile because I didn't know then what I know now. She has taught me more than I could ever teach her. I was playing the wrong role in the story, I thought I was supposed to be the teacher. This is not the case, I'm the student in her world. I learned that it's okay to be different. To see the world in a new perspective, to be patient, to slow down. Things are not as complicated as they seem. I had to let go of the little girl I wanted her to be, so she could grow into the girl she was meant to be.

People ask me all the time, "have you ever wondered what she would be like if she wasn't special needs?" Well sure I have. She is eleven now, and I'm sure most eleven year old girls would be in the bathroom putting on lip gloss and telling her little brother to leave her alone cause he is annoying and little sister won't quit stealing her hair brush. She would be reading books and asking me to help her with her homework. Telling me how she likes this boy at school, but is to nervous to talk to him...... I'm going to stop right there, because it's not reality.

The truth is she won't be wearing lip gloss it's sticky or be annoyed by her brother because she loves his attention. And she is actually the one who takes things from little sister because she wants to do and play just like her. As a mom I have learned over the years that she is perfect just the way she is. I wouldn't change anything about her. She has a smile that lights up a room, she always knows when you need a hug and they are the best hugs. She has great taste in music and our car is always jamming going up the road. Her laugh is contagious, and she is not bothered by other peoples opinions. And when she does make eye contact with you and speaks, you will instantly feel like the most special person in the world.

Everyday is different and there are many challenges. I live an emotional rollercoaster constantly, this ride never ends. Sometimes I am excited for her, and every little millstone is a thing to be celebrated and then it can flip at the drop of a hat. My heart will hurt for her, I will cry for her and I do most days, but I cant let her see me cry, because she doesn't like me being upset. Which is a good thing and another lesson she has taught me. It's probably the most important one. Never stay down.... She reminds me that it is okay to cry but then you must get up wipe your face and keep going. I have seen in her eyes what she wants to say and that's " I need you mom" and that's all I need to hear.

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Meagan and Madeline Friend.