One year ago today, my husband and I were preparing to send our daughter to surgery. This would be her second at only two months old. Her first was not a major surgery. However, this one would. This surgery would change her entire anatomy. We were scared, but knew that God was holding us. We were unsure of how everything would go, we did not know how to prepare, but we prayed and trusted in God's promises.
As she was wheeled away, I remember her surgeon looking back and saying, don't worry, I will take good care of her. I knew that he would. They said the updates would come every hour to hour and a half. When the first update was overdue by a half an hour, I was getting anxious. Just as I was about to go up to the desk, my phone rang. They were still setting lines. She was a hard poke and they were having troubles getting the lines they needed. The nurse told me that she had been poked a lot of times. I asked how many, and she just said a lot. I still remember that was the most heart wrenching thing for me to look at, a half dollar sized area full of pokes. They told me she did not feel it, but oh my heart ached.
It was a long day. The surgery went better than expected, but still a very long day. We were able to see her on her way to her new room in the PICU. She looked awesome! Lots of tubes and lines, but she was my little girl. We were sent to a waiting room to wait for about 45 minutes while they got her settled. Two hours later, the nurse finally came out to get us. I think I wore a hole right in that floor. That was very nerve wrecking.
She had a very tough recovery from this surgery. The first night went really well. They kept telling us that she was going to get sicker, but we never knew how sick sick was. Those four walls became our life. Learning the medical terms, standing firm in what we thought best, talking with lots of people, trying to get goals and being the very best advocate possible. It was tough. I was out of my element, but had to learn really fast how to get into a new element because that was my daughter that lay there lifeless.
I remember days when she would be screaming, but you could hear no scream. She was trying to tell me that she wanted me to hold her, but was unable to (it was seven days until I could hold her and even then she was still intubated), it was hard. Staying up most of the nights to read and sing to her to calm her. Trying to get sleep anywhere it fit in. Trying to adjust to a new set of nurses and learn new machines and what I could or could not do (up until this point, I had been doing everything for my little girl).
Then there was day two out of surgery. She turned blue and did not have a heart rate. The nurse did a great job at getting her back, and then she did it again. It took a little longer to get her back. Eric walked in on the commotion and thought that they were rounding in the room. Boy, he was surprised when he found out what was actually going on. It was so hard. She coded three times that morning. That was probably one of the hardest things, but I remained calm because God was holding her. I actually could see Him holding her there. I knew that whatever God wanted, that is what would be done. I trusted Him with everything, I think I had to because there was little else to do. The situation was completely out of my hands. God is so good and faithful, even when things don't work out as we think they should. His plan is far better than ours...even if we don't want to accept that.
The road has been bumpy, there is no denying that. However, it has been one of learning, growing, stretching, reaching, trusting, faith....and isn't that what life is all about? I do believe that I am a better person because of this. I do believe that Lydia has made me a much better person. She has taught me many valuable life lessons. Ones that I hope I can apply to my life each and every day.
As I reflect on this day, I just am filled with joy. I was not sure how I would feel, as yesterday my eyes kept welling with tears. But there is just such a joy. And to think, one year ago we did not know if she would eat, we had no clue what the road would hold. However, late last night I sent an e-mail and a report to our GI doctor. We have requested that her tube be removed next Thursday. We will see what happens, but we did write a "report" stating reasons why to remove it, why it would benefit her, and what our research had shown. I don't know if I ever spent that much time on a project in high school or college, but I am glad that I had those skills. Would you join me in praying over the words that were written, both by us and our therapists, and our doctor. That God would reveal His plan. I do feel like we prayed and had much discernment, that this is the road God is leading us down. But prayers would be greatly appreciated.
There is one other thing that sticks out in my mind. When I was pregnant, I had two people, one a stranger and one a friend, who said I should have aborted Lydia. They told me that she will be nothing but trouble and who would want a child like that. After Lydia was born, I had two more people tell me that she should have been aborted as her life is nothing. I am here to say that her life has meaning and a lot of it. I am not sure how many people her story has touched, but that does not matter....she has touched our family deeply. She has made all of us better because of her. Yes, the road has been bumpy, but we have not been broken. We are stronger and better because of this trial and her. I have to say that the comments don't anger me anymore, but I think those comments root my strong desire to create awareness about Down syndrome and being a strong advocate for your child.
And to those people who apologized for us having a child and who apologized for our tragic misfortune....she is healthy, vibrant, and full of life. There are no promises of what the future will hold. At any moment Ellen or Allison could get ill and change how we know them as today. At any moment Ellen or Allison could be involved in an accident and again change their abilities or their appearance, but that does not mean that I don't continue to love them and I would never stop loving them. Just because Lydia was born with these complications does not mean that you have to apologize or can it a tragic misfortune. Don't get me wrong, I wish she NEVER had to suffer. However, without this trial, she would not be who she is. Without the extra 21st Chromosome, she would not be Lydia. And we would not have learned the lessons we did, we would not be as strong as we are today, and we would not be the same people. I am proud of my daughter, I am proud of her extra Chromosome. I am proud that I was chosen to be her parent.
I am passionate about creating awareness. Mostly because I did not let those comments get to me and influence my decision about my daughter, but I did let them get to me to get out and break down those myths. She is no different that me and you. Aside from her medical issues, there has been little difference with Lydia and her other sisters, besides maybe a little delay, LOTS more smiles, and just an incredible disposition. I feel bad for the folks who let appearance and false information get in the way of loving. You really are missing out.