Wednesday, August 22, 2007

The steps

Sophie has a new fascination with the steps. She has always found great pleasure in going up and down stairs. But her new fascination is in walking up the stairs and stopping on almost every step to examine it or play. No amount of pressure on her will work to get her little toosh up. Each trip upstairs results in some sort of fit, be it mine or of us ends up irritated. Toddlers......their real purpose in life is to test the patience of those around them. Hands down, they win!!! ;-)

Sunday, August 19, 2007

When do you call?

Bella is a child that always feels odd in some way. We have attributed alot of her complaints of discomfort to growing pains over the years, although there certainly has been her fair share of "real" issues. Over the past two weeks, she has been complaining of joint pain. It has gone from her ankles to her arms and more specifically an elbow. Today she was so bothered that she stopped playing and grabbed some ice to put on her arm. The elbow that is bothering her is the same elbow she had surgery on almost 6 years ago to pin and correct a break that went through the growth plate. Immediately I raised an eyebrow when she told me that it is really uncomfortable to straighten it.

After surgery, her then surgeon told us we would need to have xrays done off and on for at least 15 years. He indicated that it was possible, because of the kind of break, that the bone could develop a growth which is referred to as a fishtail pattern. This could inhibit the use of muscle in the arm and, by the time she is near forty(40,)the use of two of her fingers on that hand. I remember looking at my husband so many years ago and asking, "what the heck?". It couldn't have just been a normal break. Those that know Bella personally over the years, know that she has had her "not so graceful" moments and that if there is a needle in a haystack, she'll definitely be the child to sit on it. Fixing obvious ailments is relatively simple; hear the pain, see the blood, fix the cut, etc...etc...

But what about those aches that you can't see? When do you know you need to push for tests or xrays or specialists? When is it okay to assume they are fine and it's just a fluke or nothing? In nine (9) years Bella has had to endure many tests, long and painful tests in many environments from doctor's offices and emergency rooms, to specialists and hospital labs. She has dealt with territory that would be unfamiliar to most kids her age, including a diagnosis of Irritable Bowel Syndrome, and to date an undetermined cause of painful ongoing Urinary Tract Complications. Each of those discoveries were made after months and years of my poking and prodding physicians to do something "different". To insist that it wasn't normal.

Both of my children spent some time in the NICU after premature birth. Fortunately, Bella's was very short, five days in fact. But one thing that I learned then and especially through a second mandatory lesson in NICU 101, is that I can not risk taking anything for granted. These children start out different in the world. They have a lot less "going for them" from the gate and at such a young age they have to learn to battle. For many of these kids thing don't change when they get home. Most people out there assume that all is fine when they are released from the hospital. That like all other children, they will have their bumps and bruises and infections and viruses. But no one else really knows how painful it is to see, in some fashion, daily reminders of their "early start". Whether it's an inability to "feel" as most children do, an impossibility of understanding sleep and eat or simply the small white marks that forever lace their skin. There is always a reminder to us Moms that at some point in such a short time, our children's lives hung in the balance.

Other parent's who haven't experienced first hand this introduction to life (which has become a way of life) simply can not understand. It is so easy for them to label us as the "overprotective" parent, or for the nurses to refer to us as "that mother that won't let go". But just as you wish wellness and peace for your children, we do too! Our daily want to ensure some normalcy for our children is no different then the parent who has watched their child suffer through a long illness or recover from a horrific accident. The pain is the same. The reminder of a helpless feeling. Knowing that you planned on protecting your child, but the ever present reminder that you are incapable of truly doing so. Not wanting to see your children suffer. Be it little or big, there is no difference between you and I, the normal parent and the preemie parent.

ALL of our "issues" may not be related to prematurity, but our drive to ensure that our children get the best care, the best step up, and the best chance in life IS!

Children aren't able to insist, to distinguish. That is a parent's responsibility. So when is it okay to call? To push? To assume? I don't think there is a definitive answer. But as for me.........I'm calling tomorrow!

Thursday, August 9, 2007


To some people Faith is just a word. Something you hear on occasion, but not something that too much weight is put into. It can be used as a name or it can be used to express a hope, a foundation, a relationship with God. For many, belief in something bigger than themselves.

Sometimes it's so easy to get caught up in life and all that it brings you. Good, bad or ugly, we have a tendency to let the daily happenings dictate what we do or say. We kind of use the "fly by the seat of our pants" approach to basic, as well as, major decisions. We start and end our days no different.

For almost half my life now I have had a prime focus. That is to do what I felt was the best decision, God's Will, whether it was what I personally wanted or not. I've done my best to yield to my relationship with the Lord. To try to listen and direct my steps in a path that He led me. I never expected that the path was going to be free of bumps, barriers or mountains. I certainly hoped that it would be easier than not, but all I really was concerned with was the clarity with which I saw the road ahead. The amount of light that was shown to me.

I know that at times, I have ventured off this path. I've chosen to "rest" in places that certainly weren't designed for it and I've questioned "why this way and not that?". But some time ago I came to the realization that I don't tick appropriately without divine guidance. The times in my life that God has chosen to distance Himself from me a bit, have felt a great deal like what a fish out of water must feel. Just constantly grasping for something that's just out of reach. I know as in everyone's life God must pull back at times. It's no different than in trying to raise our own children. When one technique to insight positive change doesn't work, we try another, and when that doesn't work we keep trying.

I can't imagine the pain that he must feel when we forget to thank him or raise our hands up to him. You know that old saying, "I brought you into this world, I can take you out", well, in reality that only applys to the man himself. Yet he is so graceful that he is willing to invite us in even when we have been so ill-focused.

Certainly I have made decisions or chosen ideals that others may disagree with or may believe make me seem weak. But I don't live my days to carry concern about how man thinks of me. I know that there is purpose in my life. I know that some reason exists that I am here. I believe in my holy Father and streets of gold. I believe that there is a room in his house for me and I want to earn the privelage to reside there. God hasn't granted me the easiest life. I have had a great share of difficulties and challenges and times of frustration. But when I come out of those moments of despair I always see light. I can hear him saying, "It's all going to be okay, I love you and I am here." Those emotions put me right back to the times I scraped a knee and my parents were showering me with love and tenderness. Something as simple as a bandaid and kiss made it all better. And you know with Faith, life as an adult does not have to be any different.

The truth is; that with all of us, he is waiting. Peacefully hoping that we will come to Him. He wants each of us to know His love, to know Him personally. To walk in His garden. All we have to do is turn off the noise in our lives, the commotion and control that we think makes us and listen. He is there. The one guarantee. The one thing that will never fail. There is promise in Him. There is assurance that all things will work out.

Faith to me is a gift. I have been so blessed to know it personally. To fully understand His love. Recently I found a small statue, a frog. To be more precise the frog Prince. I fell in love with it immediately. But me being me I didn't want to spend the money. A week or so later I had to go back to that store for something else and it was still there. I stared at it. Wondering what the draw for me was. Suddenly it was transparently clear. FROG - Fully Relying On God. And a memory of a line from a song I sang to myself over and over while dressing for my father's funeral almost 8 years ago. "You have been my King of Glory, Won't you be my Prince of Peace?" - I bought my frog. He stands proudly on my mantle with his hands together and his eyes fervently watching. He is a daily reminder of how gracious God has been to me. A reminder that in times of pleasure and sorrow I must seek and glorify Him and Him only.

My Faith is ever present. I have my highs and lows, but I hold a love song for a Savior in my heart. And it sings so loudly in my spirit every day. I have a lot of work to do and so much to learn, but I pray that I know the Peace that only the Good Lord can bring. I sincerely hope that when I pass, my loved ones know, without question, that I am not lost, I was found, and I clearly see. I will dance in the presence of the Lord. I will see the crystal sea and I will sing with the voice that is in me.