Mourning the Loss of A "Normal Child"

Velvet - posted on 02/07/2010

I feel uncertain as to whether to enter this conversation or not. My child doesn't have angelman's but having autism, we did and still have times in public where it is extremely hard. Chris used to stand in any shopping cart we put him into and scream and jump up and down during an entire shopping visit. If we tried to buckle him in, he would bang his back against the seat until the blood vessels in his back ruptured. I got stares, mumbled curses and even outright verbal interference with how I dealt with his behavior. No one told us how cute he was or wanted to make conversation unless it was to tell us to get our kid to shut the hell up. People make assumptions based on what they have experienced. They can be hurtful. When this is piled on top of our aching hearts, it can break our hearts. A friend of mine whose son has cerebral palsy caused by severe jaundice shared with me the poem which you may have heard, called Holland (or something to that respect and if you find it and read it, you will bawl.) This is not the trip we expected, or wanted to begin with. But our trips to Holland are filled with some pretty amazing benefits, things we never would have experienced without it. If I could take away my son's autism, I would. But I can't. Your babies are still pretty young and I wish I could tell you that the hurt will go away. I can't. But it's like the death of someone you love -- at first the hurt is numbing, then it stabs, it throbs, but eventually the pain dulls and while there are times when the tears come and the wound feels raw, it becomes less intense and less often. You might be thinking to yourself, that this is someone who doesn't wear the same pair of shoes you are in. That's true, the shoes I have been walking in for the past 9 years are different, but the pain of walking in something that doesn't fit the way I expected or wanted is still there. It's okay to hurt. But don't let the pain stop you from being the mom you were intended to be and as it's been said, try to take time for yourself (even if it's to paint your toenails or play a game online) and don't be ashamed if you need help. I've tried to be supermom and let me tell you, if you don't make time for you, you will run dry and have nothing to give to anyone. Hugs to you all.

Stephanie - posted on 02/06/2010

Your welcome and thank you everyone for sharing your thoughts and feelings. Angie mentioned something I would like to touch upon because it is a necessary part of my life and maybe other moms have dealt with and experienced this as well.

I have dealt with depression, anxiety, and OCD most of my life. As everyone knows being prego brings a massive load of hormones that can change your emotions in a flash. I can't tell you the number of commericals I cried at when I was prego. Anyway, during my first pregnancy (with Annie) I finally talked with my doctor about how I felt, my depression and anxiety towards everything in my life. I wasn't having any sucidal thoughts but I didn't care if I lived either. I bring this up because being put on medication was the best thing I have ever done for myself and also the hardest. I had to not only admit to myself but to someone else that I needed help. Since then I have learned about depression mainly but some about anxiety. They come together or occur seperately. It is an inbalance of hormones produced in the brain, and can effect anyone at anytime. Some can manage these conditions without medication or choose not to ask for help because they are afraid of how others will view them. I realized I needed help, what I was going through and dealing with I couldn't handle by myself. I have been on medication since then and have seen an overall improvement. I feel more like myself again. Of course along the way dosage changes have been made and recently my doctor added another medication, so I'm currently on two, and I am doing much better. So I am here to say: There is absolutely NOTHING wrong with getting help. Whether its medication or talking to a licensed professional, or something else. You need to do it for yourself, you need to be as healthy as possible in order to take care of your angel. I know first hand that what our angels needs comes first before anything, or at least thats what I do. Sometimes I go all day long and then all of a sudden I just flop because I realize I haven't eaten all day because I was to busy taking care of Annie. Now taking care of our angels is our top priority I know, but I want to stress the need to take care of ourselves as well. Alexia does a wonderful thing for herself by going out once a month just for her, whether she goes out with anyone or not, she gets all dressed up and makes herself feel pretty. This is AWESOME, something I think I'll try myself. But I just want everyone to know there is nothing wrong with needing a little extra help, don't be afraid to talk and ask you doctor for help. I did and its made a huge difference.

Soledad - posted on 02/06/2010

Stepahnie that is exactly how I feel...like I am mourning the loss of a "normal" child and then like Angie I feel guilty for thinking that way. When I first found out I was pregnant, I really wanted a little girl and when I found out it was a girl, I made a list of the "hopes and dreams" that I had for her and us. The day of the phone call telling me she had Angelman's, I felt like that list was for nothing. I did cry that day having to realize that I may never hear my baby speak the words I love you mommy as well. It hurt so much but I was also happy because I finally had an answer and I wasn't crazy anymore. I was tired of the people asking me whats wrong with her whenever I would go out to the store or even to carmax the other day. The guy wanted me to take Lily to the kids play area and let her "run around". At these times I feel like should I say something or just smile and say thanks but no thanks because she can't do this yet. My family has been so supportive and its all easier to bare when I see Lily smile at me and her daddy. I can genuinely tell she loves us even though I may never hear it. I feel in my heart that God gave me Lily for a reason. To teach us all about the world and the love it can have. the day at the genticist I just felt like all those feelings came back again and it made me even sadder because I was sitting there and it was a reality check. My grandpa was sitting there as well and he couldn't hold back the tears either which just hurt me like a knife. I told her that even though I will always be there for Lily it is hard for me to see other children and wonder what could have been. Again I love my little angel and will do everything I can to let all know about her and help her reach the best of her abilities. Thank you for letting me share this with you all.

Angie - posted on 02/05/2010

i had to be put on 2-3 diff types of anti anxiety and anti depressants at the same time when we first found out about livy. i m scared that if i let myself think about what could have been then i wont be able to function like before. it was bad i couldnt go near her the first day we found out cuz i felt so guilty and just felt like a horrible mother. i still feel guilty.

Alexa - posted on 02/05/2010

I mourn a little bit every single day. There are days that I just let down a few tears and I have to refocus. It's extremely difficult for me to see children Gabriel's age. That for me tears my heart apart. I did have dreams and ambitions for him. I pictured him playing in little league and spending weekends with his team rain or sun sitting in the bleachers. This was my dream and I had to let it go. I can't even read anything about Angels past the childhood stage because when I do I break down. People do stare at Gabriel alot, mostly because he is a blonde haired, blue eyed boy with very Latino parents, with black hair and dark brown eyes. They always look at him and ask me where he gets his eyes and hair, how old he is, and why he is not running around. I know it will become even more difficult. But, whenever I look into his eyes, I see nothing but my boy, my son, the man of my dreams (when I was a little girl I used to dream of being with a man that looked just like Gabriel). Love and pride fill my heart and my chest puffs out with honor and conviction. This gives me strength and makes me forget all my fears and insecurities. And when he smiles every single time he sees me, I know that everything will be alright and that I am blessed to be able to help him, protect him, and guide him. Thanks for letting me share!

Stephanie - posted on 02/05/2010

Thats great that you don't really let the "what could have been" bring you down. Everyone has one or two things they find hard to deal with, mine hits me every so often. Generally when I have let my guard down and try to fit in to society. I like you theory on our angels being the "normal" ones. They are happy and basically care free. Everyone should be so lucky. My last post was meant to tell others that I sympathize with going through the transitional phase, when you realize the life you thought your child was going to have has changed 180 degrees, sorta speaking. It can be a very trying time personally and for the family/friends. I also tried to explain that even though we may think we've adjusted and have a handle on things, life always throws us a curve ball and these transitional feelings can come back. That these feelings are real and founded. Thats where groups like this can help, we've all been there and know how it feels. Its an emotional trek we all make, we may arrive at the top at different times, some of us may slip and fall, but together we can help each other reach the top. You all have my hand, my ear, and my heart.

Angie - posted on 02/05/2010

i dont look at olivia as "not normal" maybe our angels are the "normal ones" and all these other kids that have less limitations than ours are the "not normal ones" i have really tried to get olivia's cousins, older and younger, to interact with her and thats where i get upset and start to let her syndrome get me down. the other kids do not want anything to do with her and that hurts cuz she so badly wants to belong with them and play and have fun. sometimes the parents are just as bad if not worse cuz they act like oliva is going to spead her syndrome, or that she is ew or gross or something. so i dont know to deal with that except if we are not wanted as individuals then we are not wanted as a family and stay away. olivia has enough obstacles in the years to come she does not need these kind to. when people try to talk to olivia in public i simply say that she doesnt talk cuz she has health problems, people still keep talkin to her and i just leave at that. i dont get into detail. i dont try to hide it, but it gets irritating having to explain angelmans and all the details. i also answer any questions that any one might have openly and to the best of my abilities. so i think it evens out. i do cry and mourn but i dont let them kind of thoughts creep in cuz that can be a slippery slope that i just dont think i have the energy to climb back up. thanks for sharing your story. we are alot alike in some many diff ways i love it.