Someone asked me what it was like to have a baby with Down syndrome. I had to answer honestly and say I don't know. I have been pondering this question for awhile now. I have some feelings I wanted to get to paper before I forgot. I like to keep these things written down, as I am sure one day this same question will surface again.
Eric and I have always prayed for a healthy baby. We never found out the sex of the baby. We just said as long as they were healthy. As long as they were healthy what? What if the baby was not healthy? What if there was an issue? We did not think past the statement, as long as the baby is healthy. I am sure not many people do.
So when we found out Lydia was not going to be healthy, now what do we do. We were very blessed to not have the medical opinion of termination. We knew our doctor would not terminate and there was no way we would either, NO MATTER WHAT. Praise God for that. We just understood that God created this baby perfect in His sight. Even if we did not deem the baby healthy, normal, accepting in society...God still created a perfect baby and chose Eric and I to be the parents. End of story. We did not have to think any farther than that.
However, the reality of having an unhealthy child is still something that needs to be comprehended and thought through. At 20 weeks my marker came back that I had a higher risk for a baby with Down syndrome. After the initial shock wore off, we were very excited. We were happy that we would be able to get to walk down that fork in the road, the path less traveled. However, I don't think that we prepared ourselves for the medical complications that sometimes come with Down syndrome. It really was not something that crossed our minds.
So yes, our Lydia was born with many complications, however, ones that were able to be fixed. The esophageal atresia is rare and there are not a lot of good cures yet, however, this is a very fixable surgery that can be done and we would just have to live with the complications of it. But it could be fixed. The heart defect, while major, is something very common and most times very fixable. Again, she can deal with it. We counted our blessings because we understood that there were other possibilities that may not give us the odds that we had...she could be fixed.
Our first fourteen months has been a lot of medical issues and fixing them, surgeries, and medicines. Many people have said that they would not be able to deal with all of that. About sixteen months ago I would have said the same thing. However, I can't deal with it, but through God's strength and amazing promises, I am able to manage. And not just manage but excel. You really learn how to take one day at a time and make the best of it. God will not let you break, you may fall, you will have hard times, you will struggle, but He will be there the entire time. And I do know that as hard as it is, the struggles are well worth the blessings.
I think we are always scared of the unknown. What will it really be like to have a child that is different? Can I handle it? What if? What about? I don't want a child who is not normal. This can't happen to me. I feel blessed because I had just a brief period of these emotions. We had much bigger fish to fry, we had to worry about her medical issues. By the time those were over, it really didn't matter much, we were totally deeply in love with this girl. This girl had taught us so much already in just a few short months. Every time I looked at her, I couldn't help but think how blessed I was and how amazing she was.
I guess it all comes down to that choice to love. Will we love through anything? Think about marriage, there are no guarantees about what will happen. I guess that is why divorce is so easy now days. However, it is not for me, I will not get a divorce, I chose him and together we will find that "in love" feeling. It is not always happy and roses. There is work. There are days that you just feel overwhelmed, there are those why days, there are those days of how stupid was I, there are the good, the incredible days, there are days of suffering, there are days of anger....well I think you understand.
A child is no different. Just because we have a child does not guarantee they will be normal, healthy, happy, easy going. There are so many possibilities that are thrown in there. But we need to make the choice to love. With Lydia, there was a diagnosis up front, there was a label on her before we even knew her. Because of physical features, she will experience that her entire life. Something that is not fair. However, she could be more "normal" than one of her other sisters. Ellen is 5 and still cannot eat without making a mess. You would think that she was still a baby. We work with her, we try, but still she is a messy eater. We all have our things, none of us are normal. We are sinners, we are not perfect. And that is what frustrates me, Lydia has so much more to overcome because of her label, but she is really no different than you or me.
She is one of the best babies I know of. She has slept through the night pretty much since birth, she has a great disposition about her, she is happy almost all of the time, she even wakes with a smile on her face. She laughs and watches everything. She loves attention and she is determined. She will do whatever it takes to get something done. She pulls my hair, pinches my nose, loves to be tickled. She gives the best hugs and kisses. She is no different than Ellen or Allison. She is normal to us. Your normal may be different, but she is normal.
Her sisters view her as their sister. From day one, Ellen never saw a tube in her or anything, she just walked in and wanted to see her sister. She picked her up like nothing was wrong and hugged and kissed her. She was always like that, even after surgery. Allison was a little more intimidated at first, but Lydia has always been her sister. It is so fun to watch. There are no labels and the kids are certainly not suffering from her in the least. They love her, they include her in everything and they understand that she is who she is. They are around babies that are younger than Lydia and can do more, but that does not bother them. This is their normal.
You see, normal is all about what you make of it. Think back to when you got married. How many of your normals seemed so odd to your spouse. Really you don't eat chili with noodles? You just eat beans and meat? And he was thinking chili with noodles is soup, not chili. Yeah we have new normal now. So, when someone says that we don't have a normal child, I just don't understand. There is no set of normal out there. We all have those things in the closet and things that define us. But most of us were not given a label at birth and physical features to define us our entire life.
I guess living with a child who has Down syndrome is no different than the next child. Yes, there are risks and there are delays, but most of it that can be handled. I was thinking about that today, a friend of ours, their son was in an accident. He did not heal so was taken in for more tests. They discovered cancer. In the course of the year, cancer would define him and change him. He looked different, acted different. And in a year's time he would lose his fight to this disease. There was no prenatal test that could tell you that. Would that change your course of love? I am thinking it would not. His mom stood beside him the entire time and loved him more than anything. Is she a changed woman because God placed him in her life for 13 years? I would bet she is. Any child can change our life. We are not promised tomorrow and each one of our children are gifts. No matter what package they come in.
I could go on and on about this. But having a child with Down syndrome has its ups and downs, just like any child. The ups are probably more high and the lows are probably more low, but amazing none the less. There is no definition of normal. So when the doctor comes back and says that your child is not going to be normal, praise the Lord. I would not want a normal child...I wouldn't know what that is!