Test of Patience

I wanted to write a post and just couldn't get started....well after a quick visit to Facebook and reading a wonderful poem that was posted I was inspired....

Patience is something that doesn't come easy for anyone, it is not something we are born with and it surely is not something that comes easy day to day. There are times in my life I have wondered if I would ever learn what patience was. I used to sit in the back seat of the car and ask "Are we there yet"....wait I still ask that.

When Maelee was born early and place in the NICU the test was there. We learned to wait and stop questioning. We learned to let God work his magic and heal our baby on his time. And when we brought her home I thought we had this patience thing under control. Well I was so wrong.

Having a baby is hard as any new parent will tell you. It is a huge change in your life, it is the biggest blessing you could ever ask for but it comes with a life altering change you sometimes can't imagine. Maelee however comes with special concerns that require extra patience and extra care.

We have watched and waited without losing our patience as she met her developmental goals either on time or a delayed. We have watched and waited with the diagnosing of her CP and now the evaluating for possible seizures...and still I have patience with that.

But what I think I am losing my patience with is all the sensory things.....My child spent last night banging her head on the headboard....Why? I have no clue! I can't explain it....she doesn't cry....she does it rhythmically and then goes back to sleep. She sometimes bangs her feet the same way, whatever she is in the mood for I guess. Then there are the nights Lee and I have to place our arms on her and hold her down to put her to sleep....most children would cry from this- not Maelee! She stops crying and goes to sleep. I think we are in the need of a weighted blanket at this point. We have had to buy new shoes this past week since she threw one out the door at Wal-Mart....refusing to wear it any longer....those are the days that test my patience. :)

So I will continue to ask for guidance with patience daily and look for answers to help my sweet peanut! And when all else fails I will laugh! :) There is nothing more entertaining than losing a shoe in the Wal-Mart parking lot!

Maelee is a unique child, she is a blessing, a miracle, and has been made with greatness! And for that I have patience.

I am thankful for this life!

It's been a while since I have written.....life has been busy. Maelee turned one! I can't even believe it! She is now 20 lbs and full of such joy! I look back over the past year and realize how far she has come and am amazed every day at how much she has learned and taught herself! I am so proud of her! I can't wait to watch every step of her journey and see what comes next. But with that said here is the post for the day....

This journey is not an easy one. It is not one we asked for but we are so blessed to have been given. I wouldn't change our life, the beautiful daughter we were chosen to raise or the challenges along the way. The past year I have learned that many do not understand the struggles in our life on a daily basis and many do not stick around to find out. We have lost friends along the way, people have stopped caring, and many are annoyed with the conversation of Maelee or may think we are asking for pity. 

Maelee is my daughter. I love her and everything about her. Our life is a bit different than some others and comes with a little bit of a different schedule but we love it, some days it's exhausting and other days I wish we could fast forward to the next....but we were chosen to raise this miracle and we are blessed with just that. I am not sorry if I talk about Maelee too much, I am not sorry if I share her therapy information too much, I am not sorry if I share her achievements too much, and I am not sorry if her doing something which may seem so small to you is such an accomplishment I want to put a billboard up.

I am thankful for the friends we do have. I am thankful for the friends we have met. The amazing group of people I have met online I can't begin to thank. There are so many wonderful people who have come into our lives and have just been there when we needed a place to cry or just say nothing at all. Some days are hard and others are not but the worry doesn't ever change. 

A friend sent me this song a few months back and I am amazed at how fitting it is....please take a moment to listen. :) 

Remember we are given one life and one one chance to live it! Enjoy what you have, the people in it, and love with everything you have! I love my husband and daughter with all my being. Maelee is our world and we will go to the end of our being to give her everything she deserves! :)