Thursday, January 22, 2015

Dear New Mom

I have been wanting to write a letter like this for some time. I know there are several floating around cyberspace, a letter from a "seasoned" mom of a kid with Down syndrome to a new mom. But this is my take. 

Dear New Mom,

Congratulations on your pregnancy! That little life inside you is a blessing that is handcrafted and given to you. I hope he or she isn't giving you too much sickness or tiredness as you pass through each week. Even if you have other children, I'm referring to you as "New Mom" because you are. You are about to be a new mom in ways you never thought you would be and that you most certainly never thought you could be. 

If you are preparing for prenatal testing or  if you already have your results, I know you may feel unsettled. I know this isn't what you had planned. I know that you are probably feeling more than you can say. If you are like me, your first thoughts are probably along the lines of, "No! It couldn't possibly happen to me. There must be a mistake." I think those feelings will soon make way for new feelings. As much as I wanted to reject the diagnosis of Down syndrome for our Baby Raptor almost three years ago, I knew that our baby wasn't a mistake. And I knew how much I loved the sweet life growing inside of me. I'm not going to tell you that you can't be sad or frustrated or scared. In fact, I would encourage you to feel that way. Those feelings are natural and important to acknowledge as you move through this process. I was scared out of my mind. There are still some days that I am scared, but they are few and far between. 

It's ok to be afraid to say the word Down syndrome. It took months for me to say it, as if saying the words made it worse. I sometimes had this mental image of a huge sign being plastered over my head that said "Down syndrome baby" flashing in big lights. It felt like everyone, even strangers, knew. They didn't, obviously, it's simply hard to wrap your mind around. Your baby with Ds is the same whether you say the diagnosis or not. The reason it's hard to say is because of the stigma society has placed on the label. Down syndrome is an important label to know. It helps prepare you for some expectations and health issues you need to keep an eye on. It can help you get into hard to see doctors and to get prime appointment times. Having the label means access to therapies and resources that other parents have to fight for. It is a label for your baby, but it's not the only label. Take your time getting used to saying it, you will have a lifetime of opportunity to use those words. Your baby doesn't know that he or she has Down syndrome, they are ok if it takes you some time to get comfortable saying it. 

I wish I had sought out support from people ahead of me on the journey to see how normal and wonderful life can be. Again, I was scared. I did have a friend that had a baby boy with Down syndrome a couple of months before me and I will tell you, holding her son was the most therapeutic activity I could have done. Holding him was the last piece of the puzzle I needed before welcoming my own sweet boy into this world. He was a baby, he smelled good, he lay relaxed in my arms, he sighed with contentment. He was a baby, with just a few extra needs to pay attention to. And really, that's what I frequently say, special needs, more often than not, simply means extra needs. If you feel ready, find someone you can talk to and experience this journey with. It may be online, or one on one, or a large group, as long as it's someone. In the mean time, let me assure you that our life is very similar to how our life would be without Johnny's extra chromosome. Yes, we have lots of appointments and are very deliberate to do therapy in certain ways with him when playing. But we also spend a lot of time going on normal family outings, playing with cars, reading books, and keeping Johnny out of the toilet/fireplace/stairway/under sink cabinet. There are many days I am more worried about Johnny's xy chromosomes more than his triplicate 21st. 

The information and health issues can be devastating and overwhelming. Take it as you need it. Monitor what you can in the womb and don't worry about thyroid issues just yet. Make sure the heart and bowels look good on ultrasounds and don't stress over the neck X-ray you need at the age of five. All of the extra needs won't pile on you at once. Sometimes there are many to address together, but they usually come in batches and you get better at it as you practice. You will figure out what works best for you and your family as far as managing needs, appointments, and therapy. You will see people with Down syndrome everywhere now and wonder if they were always there and how you missed them before. More people will stop and talk to you about your child, thankfully, it's usually positive even if it is often misguided (no, my child is not happy all the time!). People will forward you this letter and dozens of others like it, or articles, or news stories, or cute pictures and you will love them for it. Because it's their way of affirming that they are still on your team and they adore your kid (and you) just as much as anyone else! 

Your life is already different. I wish I could tell you how amazing it will be if you let it. My son has made our family better. We appreciate all of our children more because of who they are, rather than who we wanted them to be. We are usually kinder and more patient with strangers, even when we don't always want to be. We sit and laugh more because it's fun to make Johnny laugh, and that's not saying that he is happy all the time (lies people will tell you), but when he is happy, it's infectious. He snuggles with the people he loves more and makes them feel whole and complete with his contentedness. He has introduced our family to new friends, new information, and a new world that we had ignored before. He has made us closer to the people who support us and brings us closer to him each day. There are times that life is hard. Johnny isn't walking yet at 26 months old. He has some minor health issues that need working out. He doesn't do puzzles or say his own name. But there are so many other things he can do that make the delays ok. I'm pretty sure he told me "I love you" today. What more could I want from my son?

New mom, you are going to be ok. One day, you are going to be fine. Then good. Then great. I promise. I know that you cannot understand this right now, but it's going to be amazing and you will look back on your life before your new baby and wonder how you never knew how good life could be. In spite of all the difficulties and hardships, you will still pick your life today. You may have never imagined this life for you before, but in time, you would never have it any other way. Even when you are scared or frustrated or mad, even when you wonder if your child will ever walk, or how many more doctors you will need to see, or if there is anything you are missing to help your kid, your love will expand to take all the hardship in. 

It's a new life and a new world. There is no turning back and not everyone gets to see life the way we do. I feel honored to be raising my son and I cannot thank God enough for giving him to us. 

With love and admiration,
An Old Mom

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