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! :)

Those Feet!!!! :)

Those feet! Look at those feet!

These are the words we have spoken so many times over the past months in sadness and now in the past few days in joy!!!

We were told that Maelee may never stand without assistance, may never walk without assistance, and would probably need much help to get to this point. I have always said that she is a miracle but this past Friday I witnessed one and did nothing but cry.


Maelee has been pulling herself to stand for a while now but without us putting her feet in the correct position or holding them flat she would tumble right over. Her muscle tone has always taken over and she was not able to maintain a standing position. Well she proved us all wrong!

While I was putting laundry away Friday morning I left Maelee in her play area in the hallway. She was banging on the Pampers box and laughing away. I soon heard nothing and knew with our sweet girl that meant she was into something! :) When I got into the hallway she was standing there.....with FLAT FEET! And I didn't put her like that! The smile on her face said it all! I jumped over the gate, prayed she would stay that way until I found a camera, and the tears started flowing. But in my heart I thought that this was probably just a one time occurrence.....it couldn't be real. She couldn't be doing this on her own since everyone said it wouldn't be possible, at least not now. I took a ton of pictures, sent the photos by text to Lee, and celebrated this wonderful occasion!

Well as the morning went on more laundry needed to be done. I left Maelee to play once again in her area with the dogs locked on the other side of the baby gate this time. She usually crawled herself over to the gate and would yell at them through it. This was nothing new and I would expect the yelling. But the yelling I heard was not the same this time. It seemed to be more happy and filled with laughter. I walked into the hallway and didn't see Maelee right away, my heart jumped, and then I saw it.....STANDING at the baby gate! FLAT FEET!!!!!!! So after the 100 pictures I took, the 20 minutes of crying, and the phone calls I made, I just held her and thanked God for this miracle. I didn't know if this would continue. But for this day and this moment we had seen progress. We had seen her therapy working. We had seen all the hard work and the tears she had cried coming into play and showing us what she could do!

We went to her PT appointment later on Friday morning so excited to share the news! Her therapist was so excited she looked like she was going to cry! It is a milestone we didn't expect so soon, didn't expect now, and didn't expect without much more assistance. Her therapist was overjoyed and couldn't wait to see her do it! So over the next hour she watched Maelee be determined and show her all she had learned!

Over the next few days we watched as she pulled up on everything and everyone! She is very determined! Sometimes she falls, sometimes she can't get her feet where they need to be, but she keeps trying! Our little girl is doing things we weren't sure she would ever be able to do! Her muscle tone is still tight, she still has to think about where to put that left leg/foot and it takes time for her to move it, but she is learning to overcome the challenges that have been given to her. She still has difficulty sitting because of the stiffness and her crawling is getting better but the left side is still really stiff and being swung and sometimes drug behind- our sweet little froggy! Her left arm is behind her right and she tries so hard to make it do what she wants.

But none of this mattered this week. She stood with FLAT feet! One milestone that seems so small to many is something that is so BIG to us!!! She is our sweet little peanut and we are so thankful for the miracles she is showing us every day!!!!

Not a Chart, Graph, or Statistic! Maelee is Maelee!

For 9 months we have been filling out developmental assessments, answering developmental questions, and having Maelee compared to charts, graphs, and books.
Well this post is not going to do that. I just answered her 9 month assessment and it was depressing. I know that Maelee goes by her adjusted age of 7 months but they do not give us that assessment to fill out, so unfortunately according to the paper we filled out Maelee is super behind. I am so sick of Maelee being a number on a page, a percentage on a chart, and a bubble on a sheet. Maelee is a human being. She has a heart, is breathing, and a wonderful personality. So today I will write about what they can't put on their graphs, charts, and what won't fall in their percentile categories.

Maelee has blue eyes and reddish brown hair. She has her Mother's eyes and her Daddy's cheeks. Her laugh is contagious. Her smile will light up even the darkest room. She is happy 99% of the time but 1% when she is mad....she is really mad! She is determined, stubborn, focused, and full of life. Maelee loves her routine and doesn't do well when it's changed or broken. She loves her stuffed duck whom we call "Duckington". He makes her laugh, smile, and turn red from all the giggles! She has to sleep in a sleep sack for bed but not one for her nap. Her "lovey" was her blanket in the NICU, a giraffe "lovey" her Daddy bought her on a trip while I was pregnant.....she must have it while in the car! :)
Maelee is the sweetest, most loving, caring, adorable, little girl you will ever meet. Her eyes tell a story the moment you look into them. She loves to bounce and jump. Her jumperoo is also known as her pooperoo......you can guess why! :) When her sensory issue causes her to "meltdown" bouncing is the fix, her yoga ball is her best friend. Bouncing, bouncing, bouncing! With that said she truly loves Tiger! She loves to watch him jump! They have a connection that no one can understand!
Maelee smells sweet and warm. Her hugs are the best and her kisses are so wet you will want more! She knows how to give "loves" and I enjoy taking them from her. She loves her fur brothers- 2 dogs and 1 cat. She loves to pull on them, lay on them, torture them, but most of all just be near them. She could lay on the floor near the dogs for hours. They are her "friends".
When you walk in our home her greetings will melt your heart. She welcomes you with a smile, two tiny teeth (almost 3 now), and usually a giggle or grunt! She loves music and could listen to it for hours. She loves to have "This Little Light of Mine" sung to her....it was the only song that came to my mind in the NICU so I sang it over and over.....and now it is the one that is calming to her! She loves it! She loves bubbles, baths, swimming, and being outside. She doesn't like swinging, red toys (learned this today), peas, and sometimes just too much noise. As long as she isn't over stimulated she is generally happy!
Our daughter is a blessing. She is a miracle. A hero. We are so proud of her and she knows it. We tell her every day what she means to us, how much we love her, and how proud we are of her. Maelee is not a statistic, a chart, a book, or a percentage. Maelee is a beautiful human being. She is a little girl with a few special needs. Maelee is loved beyond measure. Maelee is Maelee! And for that she is PERFECT!