Finding the New Normal

As we meet our little girl, the doctors started talking to us a mile a minute. I felt like I was walking into the woods at dusk with fog rolling in. I can see a few steps in front of me and then quickly I can’t see anything at all. I am guessing what I am doing. I am guessing the path but never before had the path been so important. I hear what they are saying but I feel completely inadequate to be the one making decisions for this precious baby. Each decision I made at this point mattered. It wasn’t a choice about the outfit I would take her home in, these were choices that would affect my little baby for the rest of her life. As the doctor’s continued to talk they asked me if I had any questions.

Questions?!?

I screamed in my head. I don’t know enough to have any questions. I am looking at my little girl and I don’t know what to ask, I don’t know how to help, I don’t know what to do. All I know is she is mine and I have to make these decisions for her. My daughter’s pediatrician said we would start with an X-Ray to determine if her heart was on the right side of her chest. The X-Ray would also help determine if she had congenital hips, and any other physical issue we would be dealing with. She also reminded me that I needed to make sure to call her office and order the test for Jaundice as soon as we left the hospital. As she mentioned this I reminded her that both my boys had Jaundice. I was pretty sure she would have it as well. We were off and running and I was holding on for dear life, as I tried to wrap my head around it all.

If dealing with my new baby and her needs and making sure our two boys were taken care of wasn’t enough we started getting the families opinion on the matter. My husbands parents didn’t want us to keep the baby. We were a young couple and they didn’t want us to have to carry the “burden” that this child would bring. They wanted my baby to be institutionalized. My husband firmly let them know there was no way that was going to happen. Our little girl would not be thrown to the waste side before she had a chance to be anything. We would figure this out, the best we could.

As I was dealing with all the immediate needs my daughter had my children’s pediatrician was setting up the beginning of a support system for me. She called the different state agency’s involved in handicap children and parents to get the ball rolling. They called me while we were still in the hospital. We set up a home visit in three weeks and a parent group that would start teaching me how to work with my handicap child. Both the state worker and I were impressed at how fast my pediatrician got the ball rolling. As I got off the phone I was grateful for my pediatrician and the help that she had given me. I didn’t feel as alone knowing she was setting up a way to give me help. I just had to make it three weeks.

After all the tests were done and we were told what we were dealing with it was time to take my daughter home. Her heart was on the correct side of her chest but she did have congenital hips. With this information and a promise of more information to come we were ready. As we were preparing to take her home they asked me again if I had any questions… again, I didn’t know what to say. I hadn’t had time to think of any questions. I am sure I had some but what were they? I told them I didn’t have any questions at this time but I knew the second I left the hospital a million questions would flood my mind. As I buckled her into her car seat I was on full survival mode. I didn’t know what else to do but go home and introduce her to her two older brothers.

-Gail

A birth, an accident, old age, cancer, a heart condition, a stroke….the list is endless. In a matter of seconds we can all have a life altering event. Just when we think we have life figured out it throws a curve ball and we are now trying to figure out the new world we have been thrown into. When my life has met these challenges I have approached the problem in one of two ways:

#1 – I attack it head on and I am proactive at finding a solution.

#2 – I dig in my heels, hide in my bed, and resist the inevitable. I will get to it in the morning!

My first child was diagnosed with ADHD Extreme. My training started with him. I had to start figuring out the “Problem” (what made him react a certain way, how to change his environment to improve his behavior, where was the limit and line I couldn’t let him cross) I had to study his behavior, create a plan, and carry out that plan.

Many times the plan didn’t work and I had to change the plan through trail and fail, reevaluate and attack it again. My son’s behavior started my training. The mom training for the curve ball, life was about to throw my way.

My son taught me to PERSEVERE.

I have learned to hold my ground.

I have had to figure out and research how to help my child to the best of my ability.

I have learned to implement the plan and if the plan fails to let the plan go and start again.

I have learned to be an advocate in my children’s care and fight for what was best for them, even when the idea wasn’t the typical answer.

And then I learned to pick up my feet and DO IT.

I know how it feels to have life change in a matter of seconds. It started with my son but it didn’t end with him. A few years after I had my first child and as I was learning to work with his behavior I prepared to welcome my third child. Little did I know that my life was about to be completely changed and I would enter a world I know very little about….

Being a parent of a special needs child.

Gail

Tag: Finding the New Normal

The Scramble

Life Changes in Seconds