Sick of the Positive
This weekend was an eventful one for our little zoo. Myself and the kids traveled to the Chicago area to see their Grandmother and Great-Grandmother. We packed the days full of activity, and had a wonderful time. I think the Brookfield Zoo was our favorite, as neither Alexa nor I had ever been to a zoo before!! Hunter doesn't count, because he won't remember. I'm not sure Alexa will either, but we have tons of pictures to remind her!!
While we walked around the zoo, it was hard NOT to notice all the parents and children. All of the parents and their NORMAL children. People with three or four kids, with not one noticeable disability among them. I became angry. Was I really asking for too much to have a nice, normal family? Hasn't our family struggled enough? What did I do wrong to deserve this? And it just kept getting worse.
Call me obsessed, but every time I see a child around Hunter's age who is doing everything he can't do, I become more and more depressed. I wallow in my own self pity. When I see a child who is more than four months his junior holding their head up, it takes almost everything I have in me not to burst into tears. I was not meant for this life. I cannot handle the weight that is currently on my shoulders.
So, I look to the web. I look to other mom's who have children with Down Syndrome. I try to find people who understand what I'm going through. The only thing I've found is a bunch of people who are trying to blow sunshine up my ass. No one talks about the anger. No one discusses the fear. I cannot find a site anywhere that tells things like they are. All I want for is someone who feels the same way that I do. Maybe if I didn't feel so abnormal, I could change my attitude a little.
My husband has hopped on the positivity bandwagon, and I am about ready to knock his ass off of it. He is under the assumption that Hunter will be completely NORMAL, but just be a little slow. He thinks he can have a wife and kids someday. He said he can play sports. He needs to wake the fuck up. Hunter is six months old and cannot even hold his head up for a long period of time. He cannot sit without slouching forward. There is ONE documented case of a male person with DS who fathered a child. ONE. He will be able to play sports, sure. But he will be the one they let play because they HAVE to allow him to play. He will be a mascot, not a competitor. Hunter will HOPEFULLY have the cognitive skills to do something for work. Ken thinks he will rebuild engines. I will be happy if he can wash cars.
Hunter will forever struggle to do everything, and I hate it. As his mother, I want him to be better. I want to fix whatever ails him. I can't fix this, and its going to drive me insane. On those same websites I was speaking of, these mothers and fathers say, "If I had the opportunity to take the DS away, I wouldn't do it." Really? You'd let your child forever struggle, fight for every accomplishment, be made fun of, and be shunned by the majority of society?? If a doctor showed up at my door with the ability to inject Hunter with a miracle cure, I would do it in a heartbeat. Life isn't going to be fair for Hunter. For example, Hunter's social security is under $800 a month. Well under. The government expects him to live on that for the rest of his life. And if he gets a job, they will deduct what he makes from his checks!! Why on Earth would I want my son to live that way???
Yes, I am VERY negative. VERY. I'm mad at the world right now for what I have been given. I am going to deck the next person who tells me that he is a gift from God. He is sweet. He is cute. I love him. But I don't have to be happy with the hand I was dealt. And I'm not.
While we walked around the zoo, it was hard NOT to notice all the parents and children. All of the parents and their NORMAL children. People with three or four kids, with not one noticeable disability among them. I became angry. Was I really asking for too much to have a nice, normal family? Hasn't our family struggled enough? What did I do wrong to deserve this? And it just kept getting worse.
Call me obsessed, but every time I see a child around Hunter's age who is doing everything he can't do, I become more and more depressed. I wallow in my own self pity. When I see a child who is more than four months his junior holding their head up, it takes almost everything I have in me not to burst into tears. I was not meant for this life. I cannot handle the weight that is currently on my shoulders.
So, I look to the web. I look to other mom's who have children with Down Syndrome. I try to find people who understand what I'm going through. The only thing I've found is a bunch of people who are trying to blow sunshine up my ass. No one talks about the anger. No one discusses the fear. I cannot find a site anywhere that tells things like they are. All I want for is someone who feels the same way that I do. Maybe if I didn't feel so abnormal, I could change my attitude a little.
My husband has hopped on the positivity bandwagon, and I am about ready to knock his ass off of it. He is under the assumption that Hunter will be completely NORMAL, but just be a little slow. He thinks he can have a wife and kids someday. He said he can play sports. He needs to wake the fuck up. Hunter is six months old and cannot even hold his head up for a long period of time. He cannot sit without slouching forward. There is ONE documented case of a male person with DS who fathered a child. ONE. He will be able to play sports, sure. But he will be the one they let play because they HAVE to allow him to play. He will be a mascot, not a competitor. Hunter will HOPEFULLY have the cognitive skills to do something for work. Ken thinks he will rebuild engines. I will be happy if he can wash cars.
Hunter will forever struggle to do everything, and I hate it. As his mother, I want him to be better. I want to fix whatever ails him. I can't fix this, and its going to drive me insane. On those same websites I was speaking of, these mothers and fathers say, "If I had the opportunity to take the DS away, I wouldn't do it." Really? You'd let your child forever struggle, fight for every accomplishment, be made fun of, and be shunned by the majority of society?? If a doctor showed up at my door with the ability to inject Hunter with a miracle cure, I would do it in a heartbeat. Life isn't going to be fair for Hunter. For example, Hunter's social security is under $800 a month. Well under. The government expects him to live on that for the rest of his life. And if he gets a job, they will deduct what he makes from his checks!! Why on Earth would I want my son to live that way???
Yes, I am VERY negative. VERY. I'm mad at the world right now for what I have been given. I am going to deck the next person who tells me that he is a gift from God. He is sweet. He is cute. I love him. But I don't have to be happy with the hand I was dealt. And I'm not.
I am a mom of a son with Down Syndrome and I won't blow smoke up your ass. You are in part of the grief cycle. This is NORMAL! Same grief cycle as if someone had died, and in a way someone has, the "typical" son you thought you would have. You have to go through this so you can begin making new dreams for you and Hunter. Just so you know too, Cameron, my now 6 y.o. son who we adopted came to us at 6 months not able to lift his head, arms or legs off the ground, wasn't vocalizing at all and made no eye contact. He had been severely neglected and was prenatally exposed to drugs and alcohol. We were told at about 10 months not to expect much from his development (by a Downs Clinic) due to the DS, prenatal exposures, neglect and the gestational anemia. Fast forward to today - Cameron is still delayed, but he plays baseball, he talks, he signs, he reads, he counts, he is the most mischievous child I have (and I have 6)and it's well thought out mischief, and I have heard from those at church when they get hugs from him it is like getting a hug straight from God Himself. My son may struggle to do things typical children do and he may be on a special needs baseball team, but he inspires so many people. Making someone else smile and happy makes all that hard work okay in his eyes. If you were walking through the zoo and saw the rest of my kids without Cameron, you would think I had a typical family too. You wouldn't look at my 7 y.o. son and know he has a rare form of epilepsy that will slowly take his life, you wouldn't know that my daughter has chronic migraines and may have a brain tumor (waiting for the MRI results now), you wouldn't know my 8 y.o. daughter has severe learning disabilities or that she has severe PTSD, and you wouldn't know that my 17 y.o. has joints that dislocate on a whim. Just because someone else's family LOOKS typical doesn't mean that they are. After having 5 other children with disabilities, I would much rather have a child that shows their disabilities in their face or body. People expect so much more of those that look typical, when in actuality they are not. Please continue to hurt and feel pain from this. It's the only way to the other side. You will get there. When you do or think you are getting close, read Letters from Holland, if you haven't already. Your husband is probably still in the denial stage of this. That's typical too. Men tend to think they can put duct tape on things and make it better and it takes longer for them to hit the grief cycle. You have to go through this now and be upset, even with him, so you can be there for him when he gets angry (and he will). You will be able to support him through it and give him the strength to go through it. Good luck. If you ever want to talk, you just let me know and I'll send you my email.
ReplyDeleteHi I am mom to a 1 yr old with DS. Everyone whether they say it or not grieve for the child they thought they were going to have and for everyone that amount of time is different. I did, I kept asking myself why me. What did I do to deserve this. I knew that she would be born with DS while I was pregnant, I can't imagine how depressed I would have been if I found out at birth like others. I can only imagine that it would be even harder to bond and accept your child with DS. I know you don't think that you son will ever play sports but he will, it might take him longer to understand and learn those skills but if he really wants to he will be able to figure it out. You son will find love and heartbreak just like other boys. Now as far as being a father, most boys with DS are sterile. Many young adults with DS are able to be fairly independent and live on their own. Now he won't be a rocket scientist but how many of us are. Just like with everyone else there is a range as to the severity of DS and what a child can accomplish and become.
ReplyDeleteFor me sometimes its hard to look at other children my daughters age and not think what if, but I am sure that will lessen with time. I just keep thinking she is her own being and I am there to nurture and guide her as best as I can. Of course as a parent I have high hopes of her being independent and living on her own, but if that isn't possible for her we will cross that bridge when we get there. In the beginning it is important to just take one day at a time.
Also you mentioned everyone "looks normal" well believe me everyone has something going on just because you can't see it from the outside. I am a pediatric RN and I have seen the beautiful teenager, who is homecoming queen have a terrible disease that she has to suffer with every day. Or the straight A student who has cystic fibrosis. There is no such thing as the perfect person.
I encourage you to try and find a mommy group that is in your community and talk to them in person. Its best to talk to those mom's that have a child your son's age. You would be amazed at how raw some emotions can get and how you are not the only person that is dealing with anger.
I truly think that having my daughter has opened my eyes to how judgmental and ignorant other people are, more importantly how much I was. I personally wouldn't change her for the world and it because if you take away the DS, then you take away a part of her.
I would also encourage your husband to be part of a D.A.D.S. group and reach out to other dads. I am sure that there are a lot of emotions he just hasn't dealt with yet. He may also be keeping the brave, strong front of the family. Here is my email if you want to email me: sandragarza05@gmail.com
I have a four-year old son with Down syndrome - he's number 6 of 7 in our family - and I'm definitely not one to blow smoke or sunshine up anyone's ass. I don't believe in god, and I always hated all the silly platitudes, too - they certainly didn't make me feel any better. I remember feeling anger at the unfairness of it all early on after Finn was born. It IS part of the grieving process, and you DO have to just go through that, and in time, those feelings will fade. Everyone's path is different, and nobody can tell you what your child's life is going to look like - whether he's got Down syndrome or not. I will say, though, that I think your son will surprise you. And you will figure out, in time, that achievement isn't everything. There are worse things than having Down syndrome, or having a kid with Down syndrome. Like being unhappy, or unloved.
ReplyDeleteHang in there, allow yourself to feel what you're feeling, be kind to yourself, and surround yourself with people who can be supportive without making you feel worse. You're still trying to wrap your head around this, and it takes time.
Yes, it's true - having a child with Down syndrome is not an easy thing. It's quite difficult, in fact. It shatters your world for a little while. But then you get over it, and life gets back to the business of being normal again, and you look back on these times with wiser and drier eyes.
ReplyDeleteHunter will hold his head up strongly someday soon - I promise. I'm quite sure of this, because I have yet to meet a person with Down syndrome who did not have the strength to lift his head. The only way Hunter won't be able to hold his head high is if he feels he isn't good enough to make his mother proud. Please, never forget that.
Did you ever find out if there is something neurological going on with Hunter? Having a kid with Ds is hard and very emotion packed at first, but having a kid with Ds who has other issues as well can seem overwhleming. I know because my daughter suffered brain damage while in the NICU, and four years later I am still a mess over it. I have found one thing that helps her. It is a supplement and when she is taking it, there are profound differences in her abilities. It is called NuTriVene-D... I mix the powder into her formula. I also give her Omega 3 oil with it.
ReplyDeleteStop by if you feel up to it. I am pretty honest about the misery filled moments, as well as the good times.
http://theunknowncontributor.blogspot.com/2012/05/heartbreak-4829.html
My contact info is in my profile if you want to chat.