Alayna sitting in her high chair with braids.
Having fun swinging...not sure what we'll do when she completely grows out of its seat.
"What are you doing with the camera?"
I was cleaning up dinner, turned around, and she had fallen asleep in her high chair.
Playing with one of her favorite muscial toys.
Reaching for one of her presents. She wasn't into unwrapping them. Hopefully someday. 
Happy 4th birthday Alayna. 
Checking out a new toy. New toys have to be introduced probably 50 times before she'll even give them a chance. She is very set on her favorites and familiar toys. 
Alayna with her sister, 2 brothers, and cousins.As we celebrated Alayna's 4th birthday in January, we thanked God for her health and the continued progess that she is making, even if it is slow. Daily life with Alayna is a wild ride on an unknown course. We celebrate when we can, cry when we need to, and keep chugging away at this journey God has us on.
Life with Alayna is challenging every single day. That is a fact. No, it isn't over exaggerated or overstated. The weekly schedule of getting up early enough to get myself ready for work and then to get Alayna ready for school is sometimes a bit exhausting and overwhelming. Honestly there are days that I just don't want to do it anymore. If I had an option I think I would want to quit and throw in the towel. But there is no option and we just keep going as best as we can. I'm sure that is a normal thought for many of us parents of special needs kids. Alayna is dependent upon us to meet every one of her needs from getting changed, dressed, braces and shoes on, bathed, fed, and hair combed each and every day. It is very much like having a baby.
In addition, since Alayna is nonverbal and unable to express herself, crying is the only way she can try to tell us something. Trying to figure out why she is crying is another hurdle that is as huge as Mt. Everest. Sometimes I just can't figure it out and it is frustrating to listen to it continue. Fits of crying can last anywhere from a few minutes to an hour or occasionally longer. It is a very helpless feeling to have and I hate it with every fiber of my being. A crying spell can have the most negative affect on every person in this house. I admit first hand, it makes me crabby and I just want to scream at the top of my lungs. This is often a daily occurence here at our house. Alayna is a definite crier and I wish she wasn't, but she is. I know I've said this in past posts, but I do hope that someday she outgrows it and learns how to tell us what she feels or needs in a more constructive manner. Signing would be amazing!
Alayna is not able to sit for long periods of time unassisted. So, she does alot of playing using the high chair, bumbo seat, swing, laying on the floor, or sitting on the floor (with help). She has to be "switched" just like a baby does. Remember having a little baby that got bored with the task and you had to do something different? That is what we are constantly challenged with for Alayna. I can only think of so many different things to do with her that entertain her and keep her busy. Unfortunately, there are things that need to get done around the house or with the other kids and I can't sit with Alayna all day long. I really hope that Alayna will be ready for a walker soon. This would give us another option. How Alayna would tolerate a walker is unknown. She doesn't enjoy therapy too much at all. This is frustrating because I would only love to see her make quicker progress on things.
1 comment:
I can understand some of your frustrations, because my son is 19 months old and has to be entertained as well. It is just like having a baby, just a bigger one. He loves his swing too, but has almost outgrown it. It's interesting the changes that come from a child that can't move. My son also can't talk, obviously since he is so young still. I understand the crying part as well, it can be very frustrating. I hope she can sign soon, or find ways to communicate differently. You are a great Mom!
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