Avleigh's Journey

I like to think that I’m a “normal” mom just like any other. We live life at a fast pace to get from one event to the other while trying to still feed our girls somewhat nutritional meals with the little time we have far and inbetween. We play together, have our silly moments and our biggest bonding time is during our nightly routine. So, what is different?

Our difference is we don’t know what each day will bring. With Avleigh’s diagnosis, PCH2D, we have to pay very close attention to her needs. Following her medicine schedule, watching out for seizure activity, doing her stretches and other physical, occupational and speech therapy type exercises and most of all trying to be aware of changes.

Just when we think we have things under control things start to quickly spiral in a different direction. Like most mothers I love to be in control. I want what’s best for my girls and want to do all I can to protect them. So when that temperature increases from that “common cold” or she has what most call an accident that injures her or even what seems to be as simple as an insect bite… it turns our little world up-side-down. You see, her life expectancy is based off of her health and wellbeing. That slight increase in temperature could trigger the nasty seizures in turn causing her to be lethargic for several hours after as her body tries to recoup. What we may not think twice about for a small head injury could cause further damage to her brain. And something as simple as an insect bite… infection!

The inability to communicate makes it very hard to know when she needs something, wants something, is in pain or just being a normal cranky 2 year old. I feel like I know her very well. I pay attention to her body language and the few sounds that she makes to try to put pieces together on what she wants. Her sounds of frustration and pain are the most distinctive. But how do I tell the difference? Sometimes I’m not even sure. The reality is that what I could think is just frustration could very well be pain and vice versa. I just have to pray that she gives me the right signs so I can provide her the best care possible. So I can reach out to her specialist when pains set in. And so I know when she needs relief.

Now we try not to live each day with the negative and we strive to give both girls as much “normal” as possible. Our 4 year old is starting to notice more about her sister being “different”. She recently introduced Avleigh to another kid as “my sister, but she can’t walk or talk”. We try to answer her questions in the most basic way that she can understand. We try to participate in sports and attend family and friend events, but these too are limited around Avleigh’s moods and schedule. We are still trying to figure out what’s the best way to balance Alyssa’s needs while still being able to care properly for Avleigh.

In all honesty, it’s just plain exhausting! Most days we won’t even think twice about it. Those that know me know that I don’t ask for help. I choose to handle what I feel is my responsibility on my own, but I’m no super mom. I have my good days and my bad days. But one thing I do have is determination. Determination to provide my family with nothing but the best no matter what obstical comes our way.