Maybe you are just like me when you heard the news, received the phone call; "Tiffany, I just wanted to let you know that there were markers that your baby may have Down syndrome. Don't worry, there is only a one in one hundred chance. Besides we are not doing anything different, so just carry on and know the baby is loved." Comforting words, yet such words of terror. The tears started flowing as my husband had just drove in the driveway. I was a sobbing mess by the time he climbed the stairs into the kitchen where I was standing. He sent the girls upstairs.
What could be the matter? As I uttered the words Down syndrome out of my mouth, for the very first time, I felt a sense of peace. It is a peace that I knew no matter what, things would be OK. However, the fear and the what ifs and the it's not fair set in. There was worry and a bit of anger, confusion and major guilt. As my husband held me and we prayed; I knew it was going to be OK, somehow, I loved this baby no matter what.
I realize that not every lady is blessed enough to have a supportive OB, a supportive husband, loving family, and a great church family, incredible neighbors, and caring strangers. I do believe it was God's might Hand that had been at work long before this news preparing just the perfect support group (if only I realized that at the time!). I can only imagine (and not that I want to) what it would feel like to have an unsupportive OB, husband, family. I know that often times the diagnosis is handled based off how it is given.
Often times it feels like doom and gloom; like it's the end of the world. We mourn over something we never had. It seems really silly, but it is real and we realize just how little we are able to control our life. For us, the added stress of major complications were given and I learned really fast how to trust God. How to lose everything to gain something far greater.
As we sit here well into two years of this roller coaster journey, I think back to that phone conversation with my OB. I read stories (and to me they really are horror stories) of OBs that just are not supportive, of people apologizing for the pregnancy, of doctors, nurses, friends, family treating this diagnosis like something it should not be.
Fearful, yes. There are probably so many more unknowns by having this diagnosis. You know there are greater health risks, more of a developmental delay, and no one really can tell you what your child will be like. They are labeled before they even have a chance. However, much of our life is like this; the difference being, there usually is not the astigmatism given to it that Down syndrome seems to carry with it.
No one told me what my marriage would be like. No one said there would be days of horrible pain and suffering. No one told me how hard it would be. Instead it was one big celebration after another. There was always an encouraging word. No one could predict the future of my marriage, what trials we would have to go through or things we would encounter.
I can think of all kinds of examples in my life like this. So my heart breaks for those horror stories I hear when people are just so unsupportive. Do these people know what they are talking about? Have they ever encountered a person with Down syndrome before? Where are they gathering their information? I never realized what a difference these questions made until I was wearing those shoes. See the Down syndrome community is nothing but supportive and proud. There is happiness along with the trials and struggles. But, I have yet to meet, a family who said that it was doom and gloom. Hard, yes, but very manageable and rewarding. I am sure there are some out there that maybe have different views, I am just saying all the folks that I know are so very proud of their little one and say that it is the most rewarding thing in their life.
So what did I think life would be like when we received this diagnosis. I am not sure. There was a lot of fear and I wondered what life would be like, what my little one would look like, what she would accomplish. I wondered what the future would look like for our family. I wondered what obstacles we would face and how we were going to do this. And when I think of this now, without the diagnosis being so overwhelming; with Down syndrome just being part of who we are, these are normal questions that any new mom has.
No one knows the future other than God. We must trust in Him and rely on Him to get us through these complicated situations. He does not create junk (I hate this saying, but it is true)...all life is precious; even with an extra Chromosome. What did I think when we first received the diagnosis and now are two totally different things. Life is normal, just as it should be. There are days that are super hard, but not every one of those hard days are because of Lydia. Being a mom, in general, is a hard thing. Being a wife is a hard thing. Being a daughter is hard sometimes too. There will come a time, and usually does not take too long, that Down syndrome is just Down syndrome. There are no definitions, there is nothing different, and the fear is there; but it is just normal fear that every mom has. Yes, in our case, we deal with more because Lydia has extra medical needs; but even those are starting to become just routine. That is just the way Lydia is!
Lydia is delayed, but she makes up for that in her wit, her character, the way she cares for others and shows love. She constantly is making us laugh, or run after her like any other two year old. She gets into things, she does not listen, and she likes to do things her way. Therapy is just a formal play time for us (yes, sometimes it is hard, but it is becoming life as we know it). Doctor visits are fun because we are friends with our doctors! We have a HUGE extended family, many new friends, and lots of strong relationships.
See everything that I was scared for no longer seems important. I know that you may be standing on the bottom part of the mountain and it seems impossible to climb. You may not want to climb it, you may be scared, you may have hundreds of other excuses. But just because it is unfamiliar ground does not mean that it is bad.
I guess I just have been feeling like writing this because if you are like me, it is scary. And I don't like to imagine what it would be like to be given this news as if it was a death sentence. Especially now that I have been on this journey for a couple of years, it is anything but. I find myself looking deep into Lydia's eyes and just smiling because my heart is so full. She is one amazing girl and I am so blessed that God chose me. Please, if you are just starting off on this journey and need some encouragement, I would LOVE to help you along. It is scary, but almost anything that is good and right is scary. Take it from people who have walked on that path and not people who haven't!
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