Friday, April 20, 2012
20 years ago, I was pregnant with our second child. An easy pregnancy for the most part...and from the minute I knew she existed, I knew she would be a girl. I dreamed of the fun we would have...the pretty dresses she would wear to Church, the times we would share together and even allowed myself to dream of the day she walked down the aisle...and when she would have a baby of her own. I had a strong feeling that this would be my last pregnancy and so I wanted to cherish each moment of it...I did not want the 9 months to slip away without acknowledging what a gift this was...too many of my friends struggled to get pregnant..and I wanted this more than anything..I did not want to take a moment for granted.
20 years ago, I had no idea that life was going to change in profound ways. This time in my life was the calm before the storm. I had no idea that in just a few weeks from this time, I would hear the words that forever changed the course of our lives....As the ultrasound technician cautiously said, "Has anyone told you that there might be something wrong with your baby?" we sat stunned...and knew that those words had just changed the course of history for us. And they did....
20 years ago, we had no idea what a posterior occipital encephalocele was. We had no idea what arnold chiari malformation meant...or even what an occupational therapist actually did. We did not know that some children would need to be taught to do most everything..and that some kids will actually go to kindergarten in diapers. We had no idea how badly it would sting when we heard someone use the word "retard" or talk about riding the "short bus." We had no idea how many tears we would shed over the pain she has endured and the loss of dreams we had for our daughter...we had no idea 20 years ago what life was going to hold for us. Thankfully we had no idea..it may have been too much to handle all at once....yet another gift from God.
20 years ago, we had no idea how much our love would multiply as we cared for our beautiful and precious daughter..who would not be like the other girls..who would need our care for ever...who would still go through the emotions that teenagers go through..the breaking away process...yet she will never break away..she will always need us...and we will need her. We have been through so much together through these years. 20 years ago, we had no idea how much our life would change...her disability impacted every aspect of our lives...we didn't worry about the small stuff. We have a whole new set of friends. Amazing, life long friends who "get it" because they too have held the hand of a child with a disability.
It stings each year about this time as I see McKenna's friends making their plans for college, choosing their wedding dress and worrying about what career to choose. They are moving on. Oh, don't get me wrong..she has plans too. They are just different. She has dreams...and they are not that different. She wants to be loved, to be as independent as she can be, she wants to have meaning in her life...through school, her employment and through her relationships. The "what could have beens" crop up every now and then...and the tears flow as hard as on that first day 20 years ago when we were given the news about our daughter.
20 years ago, my faith was too dependent on circumstances. The roots of my faith have grown deeper because of the struggles, the challenges...the trials. I have had one option and that was too cling tightly..and hang on for the ride. The decision I had was to what will I hold on so tightly too? And in midst of my struggle, Jesus was there...and we have clung to him. I have been so weary..and He has renewed by joy through it all. He has not only sustained us but blessed us beyond imagination through our precious daughter. They understand our sadness..they feel it with us.. and they celebrate the small stuff..because they understand that the big celebrations in life that others will be celebrating may never come for our kids.
20 years ago, I was enjoying each moment of what would be my last pregnancy. The next months would be some of the hardest months we had ever endured. The not knowing was the hardest part...not knowing if she would live or die. Through all that she has been through... we prayed like we had never prayed before...we praised like we had never praised before and we looked for strength when there was none left to be had. We stopped trying to find the strength within ourselves, and looked to the source of unending strength. And He was faithful..every step of the way. 20 years ago...we had no idea where God was leading us..and it turns out He was leading us to Himself....through it all.
at 9:13 AM