This past weekend I attended my sister-in-law's baby shower. It was such a great shower. But I had these feelings that I have not been sure what to do with. I want to be honest with myself about these feelings and in some forms of my life, I fear that I may always run into things that I will grieve, that simple things may strike a "hot-topic" for me and cause these odd feelings to happen again. I find myself in two places sometimes, loving my life and longing for normalcy. I find myself head over heals in love with Lydia, but just wanting those normal minutes of her baby-hood like I had with the other girls. I am overtaken with fear at times about what the future holds for her and what life will be like.
I am so excited to welcome a new nephew, but I have to be honest that every time I see someone pregnant or with a little baby a tiny bit of jealousy comes out. I relive our past two years and I grieve a little more. I picture a dream of having a baby and having people come to the hospital to welcome this new life. I picture a dream of showing my baby off to my friends and family and attending church. I picture a dream of enjoying the other girl's activities with no stress or worries; just a carefree life enjoying my children.
My reality is a bit different from that. However, it is not bad, just not where that picture once was. My reality is a bunch of doctors and nurses, being confined to a small space, often times looking down at my child with a tear (well many tears) running down my face praying that my child will make it. The medical issues where great, the fear was high, and the picture of my dream was crushed. However, my journey was a new one; one that I could not imagine because it was so wonderful. There was pain and hurt (no one likes to include that into a dream, but it is a reality), there were teaching moments and lessons to be learned. There was joy in many different ways...but it was so far from that picture of a dream I had in my head.
I hate that jealousy feeling, I hate that I feel like that. Why? Because I love her for who she is. If she did not have her extra 21st Chromosome, she would not be Lydia. I would not be me, my children would not be themselves, my husband would not be who he is. My life would not be this amazing roller coaster. But that jealousy seems to creep in a little bit each time I see a baby. That wonder of what if seeps into my mind and off I go wondering what life would be like, instead of embracing my life for what it is.
While I have embraced this life and I love it, I do think that for sometime that grieving process will still be part of my life. While I feel blessed and know that God chose me to be on this journey, my selfishness takes over. I struggle with that. I would not change anything, but I still have those odd feelings (sorry, such a broad term, but I just don't know what to call these feelings). It is so hard to admit selfishness and jealousy and grief, but I do think it is natural and part of the process.
As I have prayed on this over and over asking God to rid me of these feelings, one thing comes to me over and over. Our society. I love her and accept her for who she is. However, the fear of society rejecting her over takes me. When I sat on the floor at the baby shower and her scares were showing and she was much further behind in development, I felt like I had to explain her, like I had to say it was going to be OK. No one made mention that she was "different" or there was a problem, but because of that fear of what society may do, I felt the need to apologize. Why? Ugh...I HATE that.
When we are in our home, our safe place, life is SO good. She constantly makes us laugh. She always looks to her sisters for validation and how she can make them laugh. She completes are family. She is no different than any of us. She is a beautiful daughter just like my others. But we get out of the safe place and I struggle with it at times. I become consumed with fear that I did not even know that I had. I become consumed with protecting my daughter when there is nothing really to protect her from other than this horrible stereotype that may or may not be.
Maybe I am just too sensitive, but these are real odd feelings! I am addressing them because I am sure someone somewhere I has felt them too. They are really hard to verbalize. I want to dismiss them, but I don't want to feel like that every time we are out somewhere. I am proud of her, I love her, I think she is going to do far more amazing things than I can dream of.
I will take a tiny step back right now and acknowledge that I understand many of these "issues" that are holding us back now are medical and Down syndrome. I realize many folks with Down syndrome have some health issues but the reason we have to be protecting her is because of the hospitalizations and surgeries and risks...not because of the extra 21st Chromosome. Does that make sense? It is clear in my mind, but I feel like it is about as clear as mud when I write it.
I am so excited for my sister in law and in no way, shape, or form am I jealous at her or anything like that. I think it is a grieving process that I did not get to experience childbirth and Lydia's first months like I did with my other children. That I had to watch my child endure such painful procedures, that I had to wonder if I would get to bring my child home. It is like something that brings me the greatest joy also brings me the most sadness.
And yet, I think of the promises that God gives to us. He is faithful and just. He will provide what I need when I need it. I never thought I needed Lydia either; and she has saved me in so many ways. She has brought joy to my life that I could never describe. She has changed me in a way that I never thought was possible. She has taught our family so many life lessons, I am pretty sure that most people will never be taught that many lessons in their entire life. God is good and He knows what He is doing.
I then get angry at society and why we cannot accept everyone for who they are. We were ALL born differently. Some are short, some are tall, some have white skin, some have black, some have blue or green or brown or hazel eyes, and some have eyes that have all kinds of colors. We say we embrace everyone and their differences when in reality I think we don't embrace anything different than me. I try so hard to get more money so I can be like that person or have what that person has, when really I am blessed more than I deserve to be. I have the greatest riches of the world and forget about it on a minute by minute basis.
I do believe that on many different levels this is a fight that we have been fighting for a long time and is one that probably will never be solved in my lifetime. It is one that will be around for a long time, there will be many debates and arguments and it will never get solved. But I can educate and I can push forward. I can be proud of my children for who they are. I can teach my children the values that God wants us to have. To embrace truth (the Bible) and to love their neighbor. Maybe if more parents would do this, we would not have this issue?!
God created Lydia perfectly in His sight. He knew exactly what He was doing. Without her, I would not know love as I know it today and I believe I am much better because of her. I would not know how to fully live. She has a purpose, just like you and I. She deserves no less than you and I. She has a beating heart, a fighting spirit, feelings and a desire to make other people happy. She wants to learn and explore, she wants to be loved and she LOVES hugs. See, when you boil it down to the things that matter, extra Chromosome or not, she is no different.
This afternoon as she sat on my lap, I realized that she did not have the choice in being born, she was created just the way she was. She can't help that God chose her to have an extra Chromosome. She can't help that God wanted her to be special and teach others what love is. You see, it is cruel and mean to treat someone in that manner, to classify them based on something that they had no choice in the matter. She does not deserve that, no one does. Sometimes it is just a mean and cruel world.
These odd feelings feel like they have more of a place, like something that I grieve for her because I am a mom and I want to protect her. I don't want to have people make fun of her, I want people to understand her. But, that is not what life is about. It is about learning to live in the skin we have. She does that every day and she does a beautiful job of that. I am glad that I am able to address these feelings and share with others.
It is a tough road sometimes. There are many days that I fight with God and question if I am really able to handle this. I ask if He really knows what He is doing. But God is good and He does. I need to continue to trust. Just as He has seen us out of some dark days, just as He allowed me to bring my baby home, just as He has allowed Lydia to beat all odds, He will continue this good work He started.
Acknowledging the odd feelings and dealing with them so they don't get the best of you, is very important. While I still have to get use to the "unsafe" places with Lydia, I have never been so proud of someone before as I am of her. Down syndrome or not, she is perfect. I will fight and I will educate and I will try to be the very best parent, with God's help to bring honor and glory to Him. He gave me this precious gift, this miracle and I will do everything to love and share her testimony.