Friday, 3 February 2012

How we really feel about our Children's Genetic Blips

I belong to a Facebook group for families affected by rare chromosome disorders. We mums discuss our children’s medical issues matter-of-factly and share our frustrations about fighting for services - but only occasionally do we dig deeper into our own feelings of sorrow and loss. Then a mum asked how we'd reacted when we found out about our child’s condition. It triggered an avalanche of emotion, so eloquently expressed that I was moved to ask if I could share some of the comments on here. There’s rage, despair and brutal honesty but shining through like a beacon of hope is our love for and devotion to our Unique children.

Jenny....We only found out about Steven's deletion in 2010 just before he turned 30....In a way it was a relief to finally have an answer and since being told what had caused his problems I have found out more about my son then I ever thought possible; it has also helped me to understand him better. My hubby’s approach was: "oh well at least now we know" but I had to find out as much as I could and in fact I'm still finding things out. Guilt was my main feeling for 30 years. There are days even now, 31 years later, when I hate what our lives have become. I love Steven to bits and would give up my life for him but there are times when I hate his condition. It does not make you a bad person for feeling like this – I think if people were honest most of us feel like this at some time or other. It doesn’t mean we love our kids any less. Some of us just struggle more than others....

Anon....12 years passed after our first daughter was born before my husband and/or I stopped shedding silent tears when we saw a child walking hand-in-hand with its parents. We could not adore our own any more than we do but grief for the loss of their mobility, or conversation, or demonstrations of reciprocated love, runs very deep. On the outside, people saw us as strong and capable - role models for other parents. Human beings are truly remarkable. Yep, there have been times when I have heard my daughter talking to me and seen the girls running around and at the moment of waking, I am full of joy. You don't realise how things have affected you 99.9999% of the time...

Jennifer....We found out about 1.5 years ago and I'm still as upset as the day I was told. Many days I am unsure that I can live the rest of my life with this. My husband is the strong one who is handling it well. I know people are all upbeat about their situations and many say they wouldn't change anything. Hate me if you want, but hell yeah I'd change it. This is not fair for Brooke, for her brother or our family. I am really bitter, angry, and want to talk to whoever is in charge to get this fixed. However it's not an issue that can be fixed. A friend of mine adopted two handicapped children from China and he told me it's easier for him because he knew what he was getting into. This was sprung on us and I for one am not happy. Of course I love Brooke, but it's something that I knew I couldn't handle. I'm one of those horrible people who would see a child with Down's and say a thank you to God that we didn't have that. I'm not strong enough to deal with it. Sorry to be such a downer. I'm sure I'll get a lot of replies saying that I need to see the positive side. Yeah, I've tried that. It still has changed our lives in a way that we didn't ask for, want, or can handle. I know I’m a bad person for saying that but that's how it's affected me. I'm sure we all go through the stages of grieving and I'm stuck in the anger stage. I love Brooke to pieces but one of my fears is that she will remain a toddler forever. Thank God I have my husband. I for sure couldn't do it alone....

Leah....We got Ty's dx sometime in his first year. 10 years on and I am still angry at what we have to go through, what I have lost and what I will likely continue to lose as time goes on. I know I have gained so much as well…..This week I hate this life and cry at the drop of a hat. Next week I will be on the front lines fighting bitterly for my son’s rights..... My ex-husband...well...he's an ex...that should tell you a bit about how he handled it. He manages to accept my decrees when I throw one down and tell him he will be doing such-and-such for our son. He doesn't like most of them and most of the time I have to battle him too in order to get him to understand why they are needed.
I cried when they told me 10 years ago and I still cry on a regular basis because I am exhausted and frustrated, and tired of fighting for EVERYTHING, and tired of watching my son struggle and not knowing how to help him. He is the light of my life, the very air in my lungs...I can't honestly imagine loving anything as much as I love my little man. I would give it all up to have him healthy, to have him "normal", to have him "acceptable" in society's eyes. I would give EVERYTHING up for my son to be whole. It probably seems odd to hear these things. Most people tell you something bad and then coat it in the sugary sweetness of how wonderful it can be to be a part of these kiddos’ lives. And sure...there are GREAT moments...but I wish someone had been honest with me...maybe I wouldn't have felt like such a horrible mom and a horrible person for so long thinking that I was the only one who HATED that I was dealt this card…..There are truly SUPERMOMs out there that take it all head on...and then there are those who take it head on because we have no other choice...someone we love needs us and we do what we have to, even though we may not like it. It is scary enough just getting a dx of anything other than "Your child is beautiful and healthy!" …..Even those of us with older children are still scared to death of the dx we were handed, what it means, what we do with it, what is coming. The hard one really knows...

Jen....We found out last April that our daughter (22 months) had a chromosome disorder. We were devastated. She was developmentally delayed but we mistakenly thought that meant she would "catch up." My husband and I went through different grief periods with him refusing to open up about it and me needing to. I won out of course and we worked through it together. I thought I was losing my mind. What compounded our grief was finding out that our three year old had autism three weeks later. He had been speech delayed but we were told by Early Intervention that it was just a speech issue. They were wrong. To say my husband and I were then angry at God and everyone else is an understatement. It has shaken to the core my basic beliefs about everything. I hate to add even more but then three months later (this August) my healthy 15-year old collapsed and had a grand mal seizure, and has since had another and was diagnosed with a seizure disorder. Now I’m in survival mode day to day. I have a hard time even relating to people with "typical" children. Not because I don't have any; I have nine children. I was blindsided by the issues of my kids and am on antidepressants. I was going to school to finish my degree and thought our life was going a certain way and it took a long time to accept that I may have three kids living with me as adults. Jennifer, I feel for you, every one of us can understand where you are coming from. Sometimes I can't even imagine what kind of creator could let people go through the kind of heartache that we all go through with these kids. The challenges my kids face have opened up a whole new dimension in my life that most people don't get to go to and I feel very blessed to be able to witness the tiny miracles, such as my baby signing or my autistic son calling me mom. I know people whose biggest worry is when they can get their nails done. I fight bitterness because of the lack of support from both sides of our families but I know better so it makes me almost feel sorry for them. I can't imagine not reaching out to a family member who is going through this....

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  1. As you know Jane I am also a member of that group. I don't often comment on posts anymore but that too was one that moved me and I also wanted to share my feelings. I find that often we focus on the practicalities, the sleep and feeding issues, and it is rare that we open up about the real feelings. It was insightful though to see how others felt, especially as it can seem that some people are coping so well and feel positive which can in turn make you feel like a failure for wanting to change things or for struggling. It was an eye opening post I thought. Thanks for sharing it with a wider audience.

    1. Thank you LittleMamma. I was bowled over watching that thread gain momentum today, & I felt compelled to share just a tiny bit of it with as many people as I could (obviously after checking with the mums first) The thread itself was even more eye-opening for the reasons you've just given. Very humbling to read about the challenges other parents like us face & feel privileged that they let me share their stories.

  2. I for one, am SO glad to see people being honest about their frustration and anger. I have 2 on spectrum and another with ADHD and possibly NVLD. One of my autties is now diagnosed with bipolar phenotype, and he makes the other two seem SO easy. I know that if I just had the other two I would think it was so hard. But life is so relative. Whatever you have, you think I can barely manage.' And then you descend to the next level of hell and you manage there.

    1. So pleased you found it helpful Spectrummom. You're spot on about the relativity of it all. I often wonder what it must be like to have a child like ours in a 3rd world country or one that's totally unresponsive. We are lucky in many ways but it still seems bloody unfair at times!

    2. Hello Spectrummom, I am one of the moms from the posts and I agree with what you said. It is so relative. I know mother's who have one typical child and they are struggling and yet like you I have many children with special needs and somehow when I do descend into the next level of hell I somehow become even stronger. Great way to put it!

    3. Hi Jen, thanks again for your wonderful contribution to this post. I haven't seen you on here before so clicked on your name & was thrilled to see your tribute & that you've started a blog. Really looking forward to reading your posts. You have such an interesting & unusual story to tell & so many challenges to deal with xx