I woke up sweating and my heart pounding as though it was being bounced down a basketball court. All my ears could hear was a monitor flat-lining. I sat up and was out of breath as my mind wandered back to the days in the hospital room. It seems like no matter how much time passes, those moments are etched in my mind.
I remember it as though it was yesterday and at times it hits me, usually when I am not prepared. Those images that are permanently etched in my mind play through my mind. I relive those moments over and over. These are the memories that I wish were "unetched" in my mind, but for some reason they are the ones that are the most vivid.
I was helping the nurse clean up Lydia and change her sheets. We were having problems with her breathing tube, but on rounds the doctors insisted that the X-Ray looked just as it should. They ignored both me and my husband's and the nurses pleas to re-tape the breathing tube. As we shifted her, her fragile body stopped rising and falling. Her perfect delicate skin started to turn gray and then blue. The monitor started on a slow musical decline that kept getting louder and louder and eventually there was just one note that played....BEEEEEEEEEEPPPPPP. There lay my daughter completely lifeless. I prayed and I asked the nurse how I could help. When she yelled for back up and the nurse said the doctors were in a meeting, I felt the temperature rise in my body and my voice yelling, but I was frozen still watching my lifeless child. The charge nurse leaped over the desk and mowed down the door where the doctors were. Within seconds, Lydia's room flooded with doctors and medical professionals. Her nurse sat there continuing to bag her while that horrific note played....BEEEEEEEEPPPPPPP.
After what seemed like an eternity, but most likely only moments, my husband joined my side. He had a puzzled look on his face until he looked at mine. I am sure I looked just as lifeless as my daughter. I prayed and begged and pleaded to bring my daughter back. This surely could not be happening to my daughter. I have had no time to play with her, she hasn't even left the hospital. What would her sisters think? How could we handle this?
Moments later, they were able to get a heartbeat and that annoying beeping never sounded so beautiful to me before. My baby was back. She was sick, but she was alive. Praising God for bringing my baby back, but knowing how fragile life is. In a moment life can be completely drained and only hope is left.
I remember other times in the hospital where we just had to hope and trust God that it was in His plan to allow my baby to live. I remember making a phone call to my husband in the middle of the night. There have been specialist after specialist in Lydia's room. We have given her every blood supply we can and she is not responding to anything. Her heart rate is so fast and she is eating through every kind of pain medication, sedation medication that we are able to give her. I believe there is nothing more we can do. What? We are in a hospital, you are suppose to be able to do something to help my child. As horrendous as it was to make that phone call, the two hour drive to the hospital must have been complete torture for my husband.
Once again, God saw fit in His plan to make the impossible, possible. There was a great doctor who stood by my side as I laid my daughter flat in the bed. This was something that we were forbidden to do. However, instantly, yes instantly, her heart rate came down 20 beats per minute and continued on a steady decline. The surgeon that was called in to attempt to reintubate, stood by her bedside and just shook his head. As she was monitored and watched very carefully all night, we witnessed a miracle.
These are moments that are completely etched into my mind and every time they make an appearance in my mind, I feel as though they are happening again for the very first time. Things that I wished were not etched into my mind, things that I wish that I could erase. Things that I know have changed me and made me a better person, but things that I don't ever want to relive again. As real as the pain is, there is hope that fills me and allows me to breath.
There are other moments that are etched in my mind too, that I wish were not there. The pain and the fear that filled my mind as I learned that Lydia would have Down syndrome. The myths and false thoughts that I believed would be my new life. The grief that I had for the loss of a child that was never meant to be. Lydia was meant to be in our family and I was so wrong to think those thoughts. I did not know better. I wish that I could "unetch" those thoughts, those moments, those fears from my mind. I wish that I would have embraced the diagnosis and saw it for what it was, a blessing from up above.
Once again, those things cannot be "unetched" but it has become part of our journey. I will most likely continue to relive these moments, experience this pain, but I have learned that I am stronger, that I am better because of these memories. Just as I am better because of Lydia. I am better because of Down syndrome. I would not change anything and I am not afraid of her future.
I have realized that I understand things differently than other people do. While I have not lost my daughter, I do understand the process more intimately. I have seen life and death in my daughter and I understand how fragile life really is. I try to embrace that on a daily basis. I understand what it is like to embrace something so passionately because I realize what a difference that can make in someone else's life. I wish everyone would dump a bucket of water over their head to bring awareness of Down syndrome, so people could truly understand how beautiful life is. Instead I will continue to share our story and create awareness one person at a time. Hopefully by sharing our story, I can help someone else as they face the diagnosis, hear the so call facts and grieve the loss of the child that was never meant for them. I hope they can understand what a true blessing Down syndrome is.
I can't change the past but I can embrace the future with hope, as the new person I have become because of those memories. And the best part of me reliving these memories last night, I rolled over and there was my beautiful daughter laying next to me. Her chest was rising and falling and her little hand landed on my face and she started playing with my hair. I wouldn't want it any other way! I am so blessed.