Avleigh's Journey

It has been a very long time since I’ve updated everyone on Avleigh’s Journey. It’s been a very emotional and stressful few months to say the least. We have had studies, appointments, surgeries and although most have been positive and successful, we are continually facing many difficulties. As in our human nature, these difficulties make me question the decisions I’ve been making. How much can I take on before I actually break? How do I continue to handle everyday struggles along with struggles of sleep deprivation and emotional hardship. We all know life is very difficult, it is very unfair. One thing that I’ve always loved about Avleigh, is that she is able to turn many people’s feelings of negativity on life into feelings of gratefulness. She opens the eyes of many as she continues to show these struggles in life and still smiles with nothing but love in her eyes. But what happens when those smiles don’t exist as often as before, or when we witness her discomfort and sleepless nights? How do I continue to keep my positive mind that everything will be okay? How do I not allow myself to fall into emotional states when what has kept me going these past 3 years is no longer here.

I’ve always observed other families with their normally developed children and most of the time you see nothing but love and care. These are the ones that would give anything and everything to provide and protect their children. Occasionally you see families that are a bit harder or expect more of their children, whether it’s sports, academics or even social skills. Sometimes you see families that take their child for granted and not absorbing the quality time that should be cherished between a parent and child. And worse of all are the ones on the news that just down right don’t care. Whether it’s a child being physically or mentally abused, sexually abused, abandoned or even the extreme of being beat to death. As I’m sure I share the same feelings of most parents, being a mother of a severely disabled child this makes me extremely angry. No child deserves anything less than to be put first and given unconditional love. There are so many parents that would give anything to have their child do the things that are often taken for granted. As a special needs mom, I would love to see Avleigh making a complete mess and pulling dishes and pots from cabinets, or taking markers and writing all over the walls or even bad mouthing me. I would do anything to have the opportunity to be the active parent in showing her how to lead on a better life rather than constantly battling these never ending medical issues.

So right now as my child is asleep for maybe an hour before she awakes in irritation all I can think is I have no control over it. I can’t take her pain away. I can’t fix her. What I can do is try to continue to make the best decisions based on the facts that I have on hand and give her the best quality of life possible. These other children deserve love, they deserve the proper attention and they deserve parents to do all they can to give them the best quality of life like we strive so hard to do for our sweet Avleigh girl.