What having a child with Down syndrome means to me

On Friday, it will be international Down syndrome day again. This is a very important day to me as a parent, but also as a human being. We live in a world where women are encouraged to abort after getting a Down syndrome diagnoses. A picture comes to mind of a very mentally challenged kid who will spend their life in a hospital, and never amount to anything. You will take care of this child for the rest of your life, they will always be fully dependent on you and life as you know it is over. This is what doctors say to scared pregnant women to get them to kill their baby. I have news for you, life as you know it is over, but that is true of having children in general. There are kids who are very sick, and will need a lot of help, this is also true of seemingly normal children after an accident or something not detected in prenatal tests. Another thing prenatal tests don't detect is how loving these children are, and how different each of their personalities are. They are tiny human beings, with fears, dreams, and love to give. We get so wrapped up in the diagnosis, we fail to see the child. My son Anthony has changed me life totally. Yes, I spend more time at the doctor than I would like, and yes it takes him longer to learn, but when he does achieve something, it is a sight to behold. He is so proud of himself as is everyone around. He has everyone captivated, he attracts attention where ever we go. He loves to flirt and hug. He loves to wave, and make people smile. When he hugs me, and smiles at me, I know I was meant to be his mother and he was meant to be my son. It's not always easy, but it's always exciting. My life is truly never dull with my comedian around. I don't know what the future holds for him, as he is only 3, but I can't wait to find out.

4 years

It's almost been four years since I buried my baby girl. Most of the time it feels like some terrible nightmare, not something that actually happened to me.I guess it's my minds way of protecting itself and keeping me going. Then there's this time of year, when Christmas songs are on the radio, and pretty lights and trees are in the stores. Holding a tiny pink babies' first Christmas ornament brings it all screaming back. I can see the faces, and I can feel the pain. I can see the doctor, holding an ultrasound wand to my belly and shaking her head, I can see the face of the nurse who looked at me with pain in her eyes and told me when I rang for her she would come running. I see my husbands face as he held my hand for the final push and it all became real. I see the blur the next weeks became, staring at a tiny casket, finding tiny clothes to bury her in, going to Christmas with my family with a broken body, heart and mind. Tying to sleep with nightmares and baby cries in my mind. Crying out on my knees, in the room that should have been her's and asking God why he let this happen. Four years later some details are vivid, some are hazy but the fact remains this will always hurt. Time passes, and I don't feel the pain as strong, I don't cry every time I talk about it and people don't mention it anymore. She lived. She was an acrobat in my belly, and very much wanted. I won't forget, nor will I let anyone else because she lived and what point was her life if she was forgotten?

December

This is the time of year for reflection. Christmas trees and lights are glaring memories of the week from hell in mid December when my life changed. Now it has changed even more. we're coming up on four years since we said goodbye to our daughter. 4 years since a pain i can;t even describe rook over my life and casts a shadow until this day. I am not living in this place anymore, but I visit more often when there is so much to remind me. She's there in the glittery pink ornaments I buy for her tree, she's there in the stocking I hang with her name. She's there when I hang the ornament with her picture on my tree and she's there in my son's beautiful eyes as he takes in the Christmas decorations. I'll always miss her, my baby girl.

Reality

Reality hit me in the worst way today. As I watched kids rush past my baby today, greedy for plastic eggs it hit me. There will be times when he is left behind, there will be times when people are mean to him. I know I'm stating the obvious, but knowing it and see it are very different things. I know he's two, and unaware of anyone wronging him ever. He doesn't know when he gets passed by, he isn't phased by being ignored while he's waving at strangers. He doesn't know when people aren't there for special days in his life, and when people are only pretending with him. One day he will. It makes my heart hurt to think of it. I don't want him to ever be bullied or made fun of. I don't want him to be left out. All I know is, if there is anything I can help I will do it. I want my son to grow up knowing he's loved. I want him to love holidays and his birthday, and see the joy in life. Mark my words, if anyone interferes with this you will have to answer to me. If you don't act right, you won't be in his life.I also want him to grow up as a person of character and integrity, and I want everyone in his life to encourage and model this. I don't care if you don't agree with me. I am his mother, this is how he will be raised. No one has to be in his life that doesn't feel the same way about him.

When Can I Snap?

When the same onslaught of problems threaten to take me down, and I am still not completely healed from the past, when is it OK to freak out and break down? Stop telling me I got this handled, reality is I feel the control slipping. Why can't I just whine for a minute? I'm not the type to tell everyone everything that is wrong, and I'm not the type to publicly wallow, I guess because of that people turn a deaf ear. I'm not saying people don't have it worse than me at all, but why does it always become something like that? I'm stronger than you because all of this happened to me is not comforting. Everyone is different, and we all have our different challenges. I don't understand how being considered a strong person, who has been through many different situations, means I should be blown off and ignored when I'm hurting. People that whine non stop annoy me, I strive to not be that way, I am generally a person who worries and I'm not the most positive, but I'm working on that. I have issues with blaming myself when things go wrong, and as much as I'd like to think I'm above judgement, I am hurt by criticism much more than I should be. I know I have to work on myself more because I can't change what people say, but it would help if they were nicer.

Reality

As I move through this sometimes painful journey called life I am beginning to realize how wrong many of my assumptions were and how wrong my judgement has been. My main problem has been my assumptions of people. The people I expected to help me and be there for me weren't there when I needed them. Reality is sometimes friends really are there for you more than blood related family. Sad but true. I'm tired of working off assumptions and living in fairy land when everyone is nice to each other and never says what they feel. I am so surrounded by that. All that comes of that is resentment. I have resentment in spades. I have experienced enough therapy, and I have let go of a lot of things, but I can't forget. I have been deeply hurt by many, and many don't know or care they have hurt me, and I'm here doing the work, trying to move past it and move on but it has become a constant theme. Then I feel guilty. It's true that many have gone through much worse things than I have, and who can really judge which is worse? This is my journey, and all of this has happened for a reason, but what I can't abide by is everyone acting like it's OK to ignore me and what's going on/ You can't only help when it's convenient for you.I am not good at asking for help either, the rejection would be worse if I specifically ask, but open your eyes. I am human. I am not perfect, and I am not as strong as I would like everyone to believe. I am emotionally fried from everything that has happened lately. I try not to let it be seen, but it's reality. I don't need half assed friends and family. Be here for me or get out of my life.

Always

In everyone's life there is a time that someone tells them everything will get better with time. You will see things clearer, and things will hurt less. While I think in most cases clarity comes with the passage of time, but pain can come back, just as sharp when you least expect it. Sill things set it off. Then I'm left to wonder, am I really as ok as I thought I was? Did I just tell myself I'm ok, and it was magically so for a little while? I think it's both. I am in a better place, most of the time, but something little puts me back, almost three years ago, when my life changed forever. In some ways it's comforting. My daughter will not be forgotten as long as I am on this earth. Her little life made a difference. I'm tired of society trying to shove this all away like it never happened. If you haven't experienced infant loss, you DON'T KNOW WHAT IT'S LIKE! A part of me will always ache for her. A part of me will always wonder. As I look at my beautiful son peacefully sleeping, I see her too.