I think all mothers have their own idea about what patience is. For some, it may be putting up with their son's terrible twos. And threes. And fours. Others find patience in the child that refuses to eat their food. Or use the potty. Or go to bed. But special needs mothers (or maybe just me, I don't know) know and live with a different kind of patience. The kind that is more raw, more organic, if you will. Because our patience is not for actions done, but for actions longed for. I long to hear my two year old say a word. ANY word. I long to see her take her first steps. I long for her to eat without throwing up. I have always thought of myself as a patient person (Cole is laughing at this. But when it comes to children, I really have always been patient!). When I was teaching preschool, I always tried to be slow to anger, quick to listen, loving always, and remember that they are, after all, just three year olds! Which was hard sometimes when there were 30 of them! But I learned so much from "my babies" about being a mommy- more than I ever realized at the time. Being patient when it comes to behaviour is one thing, a thing that *all* parents deal with and at times, struggle with. But patience in relation to your child's development and health is another thing entirely, I am learning.
My Angel Mommy Patience Lessons....
* Remembering that when someone says that "all two year olds do that." or "that medical procedure is no big deal.", they are just trying to be supportive and helpful and they really just don't get it at all.
* Knowing that the constant hair pulling and biting are signs of affection. (I think all Angel parents can agree 100% on this one!)
* Cleaning up vomit/spit up, for the 100th time that day, and reminding myself that it will eventually end. I pray. Can I get an AMEN!
* Remembering that people do not understand just how significant Angelman Syndrome is, nor can they understand the impact this has had and will have on our life.
* Not getting angry when people ask intrusive or hurtful questions, because they just want to understand.
* Keeping in mind that people who can't see how wonderful and glorious and amazing my daughter is are not intentionally ignorant. They have just never been taught otherwise.
* Reminding myself that doctors cannot go on the word of the mother alone. Even though I *told* her last week that Ava was getting an ear infection! Achem! Sorry. :)
* Remembering that Ava isn't the only patient needing to be seen at various clinics, and that is why we have to wait months. And months. And months.
*Understanding that someones child having something small wrong with them (in comparison to AS) doesn't mean that that parent is any less upset or worried about their child than I am about Ava.
As another special needs mom- and fellow blogger- once told me: the worse thing that ever happens to a person's child is the worst thing that ever happens to them. Truer words have never been blogged, I think.
I try very, very hard to be patient with everyone. Because I understand that everyone is dealing with something in their lives, and not everyone is as open or vocal about their struggles as I am. I am and always have been an open person, and I find that talking about Ava and Angelman Syndrome is a great coping method for me. People always remark about how well I am doing, how I am handling everything in stride. And for the most part, that is true. But I am still extremely hurt. And beyond sad and angry. I still weep at times. I still ache for my sweet Angel's life and the struggles she will face. Oh how I wish I could carry those burdens for her. I still cry out to God and question His decision to not heal our daughter. And you want to know a secret? I am okay with feeling all of those things. Some people might think that I am turning from God because I say that. But on the contrary, I feel closer to the Lord than I ever have in my life. Because I rely on Him so much more to get through the day. God is BIG. Big enough that I can lay all of my feelings and emotions at His feet. Come to him broken and beaten, weary of this thing that I never wanted in my daughter's life. In my life. And he can take me and breathe new life into me, and give me what I need to make it through the day. And He does! And for that, I am so thankful.