Where is the Care, Concern, and Compassion?

Care, concern, and compassion....things that are rare to find in genuine form these days. I find that the words "Oh my child was like that" or "So and so did that" are uttered every time someone asks me about Maelee. I am tired of explaining myself. I am tired of Maelee being compared. But most of all I am tired of our concerns, care, and compassion for her and her needs being minimized since EVERYONE seems to think their child is the same.

This may sound harsh and rude. But that is not my intent. I wake every morning and wonder if today will be a good day. Will today be a day where my child is stiff, can she sit good today, will she be able to hold her feet good today....or will today be "one of those days"? I wake each day and say a pray that most parents don't.....I pray for a miracle....a miracle that will heal my daughter and whatever has caused the concerns she is dealing with.

Maelee has made tremendous strides over the past month and I am more pleased than anyone will know. I cry daily when she does things. When she pulls herself up in the middle of the night and calls for me I go running in her room and praise her....even at 1 am! I couldn't be more proud of her. She is learning to work through her muscle tone. It is still there. She will probably always have hypertonia but she has learned to adapt and is a moving machine now.

Her sensory concerns have been a wild ride that we know are just beginning. There are days I start the day with no bruises and end with a million. Maelee loves to jump and kick to calm down...and usually on me! She is learning to tolerate swinging but hates ball pits. There are days she seeks and days she avoids. We just learn to go with it and make the best of the day. I don't stress about it anymore. My main goal it to keep her as happy as I can. But when you ask me about it and then tell me your child did the same thing; it annoys me, hurts me, and makes me feel as if your concern is not real. Maelee is seeing an OT for sensory concerns as well as working on other things. She goes once a week for an hour....did your child do that? Did your child scream and have no way to calm down? (and the list could go on...) If so I am so sorry that no help was offered to you and I would love to recommend some great resources and point you in the right direction.

I know that babies do things as they grow, experience things as they grow, but when a parents concern have been validated by the medical community then please don't question it anymore. We have worked hard enough to have our voice (which is ultimately Maelee's voice) heard and we pray that we are able to continue to get the help she needs! Her therapists are amazing and have helped more than we will ever be able to thank them for! I am a parent to a preemie and with that comes added stress and worry.....stress that many have minimized and now this is being minimized. Not sure if those who always say, "My child did that" are wanting the spotlight....but trust me when I say....IT IS YOUR TURN AND YOU CAN HAVE IT! We are ready for a quiet day, no more doctors, and whatever "normal" is suppose to be!

But our "normal" is this and we have grown accustomed to it. This is our life. Maelee is our world! And we will fight with everything for her. And that is something I am sure you would do for you child as well! :)