Last week Matt happened to be watching an episode of Ellen with me. A family whose daughter had a stroke when she was an infant (and still was an infant) was being given money and a new car. Matt and I were going along with it…until they said she’d grow out of it and develop normally. Matt looked at me and said “That’s b.s.! They haven’t even been through the hard part yet…she’s still a baby!” Of course Matt has always felt this way (that people get things they don’t truly deserve) but ever since Olivia, we both feel this way quite a bit. Please don’t think we’re not sympathetic…it’s just hard to feel bad for someone who will outgrow what they have…or live a normal life in spite of it. If you think that makes us sound like ogres, it’s ok, we can take it.
Anyway, after watching this family on Ellen, Matt looked at me and said “Do you ever think ‘poor us’?” I honestly answered him no. We both laughed at the thought even. I think we had a period of about 5 minutes where we felt that way. Trust me, there are moments when I’m covered in poo or something like that where I may think “poor me” but I have a glass of wine and it goes away. (I jest…I have two.) But, truly, we do not think that about our family.
This conversation led us to another conversation where we discussed whether or not we would “take away” her syndrome if we could. I said I would for her sake, but not for mine. So she wouldn’t have to struggle so much; so she could fall in love and get married and have a life on her own. But for me? No way. Matt agreed. Because, to us, taking away her syndrome would take away HER. She wouldn’t talk the same, walk the same, laugh the same, be the same. Matt said it would be like going back to the very beginning where it felt like the girl we were going to have died; if Olivia didn’t have Cri du Chat, she wouldn’t be her. And we love HER. We adore HER. We want HER.
Don’t you love how an episode of Ellen can lead you and your husband to one of the most amazing conversations of your marriage? I do.
Poor Us? Surely you jest.
Way to go US is more like it.
That is a great post. It is great to hear your it would be if it was any different. It is amazing to see how things in life, even if they are hard will make you grow and love that experience. It seems like that is exactly what Olivia has done. PS I love Ellen too!!! She is hilarious!
you are amazing. and so right! olivia is an incredible child and she is teaching so many people so many things. just by being HER. my godson’s brain was bruised when he was born and he has seizures. he’s way behind, developmentally….and i was talking to his mom yesterday. she was basically saying the same thing that you are saying. she couldn’t imagine him any other way than just the way he is. and he’s such a little blessing…..and so is ms. olivia 🙂
I too wish I could take away the hardships Sophie has ahead of her but to change her for me no. She is who she is and I don’t feel sorry for her or us. We love her just the way she is, not because she is a special child but because she is our child.
Learning so much about your family has helped me cope and accept my reality. Olivia is an inspiration to us, my husband enjoys watching her videos. It like a glimpse of what our future holds, a positive glimpse!
Once again…thanks for starting my day off in a good mood and a great perspective!
Your optimism is enchanting.
This is why you are, seriously, my hero.
As always, you inspire me and make me feel better. As you know, we are still in the infancy of dealing with what’s ahead for V and us. I can only hope my husband and I feel the same way as you guys do. Thank you for everything!
I absolutely never think “Poor us.” in regards to my family. I think we’re lucky to have our Olivia, just as she is. I told my husband recently that someone friended me on Facebook after finding my blog. Her daughter was over a year old and had just be diagnosed with 5p-. She was inspired by Olivia and was so glad to have ‘found’ us. Tom was awed that I’m reaching out and finding so many people. But he also said something that surprised me. He said, “I’m glad she found you but most kids with Livie’s syndrome aren’t going to do what she does.” His insight, his awareness of how incredibly lucky we got surprised me and made me love him that much more. We’re definitely not a “Poor us.” family. And I’m glad you guys aren’t either. So much of life is ignored when self-pity settles in.
A few yrs ago, a Kg classmate of my son’s had a horrible pool accident and suffered greatly in the aftermath, and eventually died. The community outreach and support was incredible, and we would never begrudge the help and support this family received. However, as I was sitting in with a group of moms of handicapped children, we all looked at each other and wondered why there was never any outpouring like this for our kids, some of whom had endured multiple surgeries and life-threatening events. The non-mom moderator of the group wouldn’t let us even discuss it, since it “wasn’t the same thing.” Really? We had quite a discussion after we left. I guess all we generally want or need is for people to CARE and maybe understand a little bit of what we go through, not in a look-at-poor-us kind of way, but more like a pat-on-the-back, “You’re doing a decent job”, or “We’re with you” kind of support.
Great post! Those are all things I have thought about!!! YAY US!
Wow. Love ur post. I feel exactly the same way about Bella. I have never really thought about what if. Because she wouldn’t be my Bella. And I couldn’t imagine my life without my Bella.
I feel the same about our Erin. She is who she is, and if she didn’t have mitochondrial disease, she wouldn’t be the same. I still dream of the day she can break through her autistic tendencies and actually speak to us, but even if she never does, she is still our precious daughter, and we love and cherish her. We are so blessed to have a supportive bio family AND church family who got together and built a ramp for our house this fall so that we could stop carrying Erin’s wheelchair up and down the steps. Do I want Erin to communicate better? Yes. Change who she is? Never.
You are truly an inspiration. Olivia is amazing and she is fortunate to have you and Matt for parents.
Your honesty and openness have made so many of us better people. I must say, I have never, ever thought “poor you,” not once, while reading your blog over the years. Sure, there were times when I thought you might need an extra glass of wine or three, but that is about it. You guys are such gifts to each other and to us!
Tiffany, you inspire me. That’s all.
I have considered that question about if I could take away our son’s disorder, would I? I really like your answer-that you would take it away, if you could, for your daughter’s sake, but not for your own. Your post really has me thinking – I like that – thanks.
I’ve been watching Ellen lately (but obviously missed that how)… and my son loves it too… just thought I’d throw that in before saying:
I’ve thought about that question, too… As much as I’d like my little one to have a “full life”, I honestly think that HIS life is fuller than ours. When I look at how happy and in-the-moment he is all the time, I am reminded that I bring him more sadness by wishing things were different for him, even for HIS sake. So… I think I’d want him to be pain-free and comfortable, but still exactly as he is!
Great reflective post!
I meant missed the “show.”
I’m so happy to hear someone else say that they’d take away Cri du Chat from their child. I love my niece, no matter what, but I’ve often felt such sadness for everything she’ll miss out on – all the things she deserves and won’t be able to do. It makes me sad for her. It never seems fair.
I hear people say that their children wouldn’t be their children, if they weren’t born with Cri du Chat. Olivia wouldn’t be Olivia. Cali wouldn’t be Cali. I’m not so sure. I don’t think her syndrome controls and makes who she is, not completely, not really. I still imagine her being the way she is, so sweet and loving and smiley, only she’d able to do all the things I know she wants to do, but struggles with.
Not sure where the point to this was hidden, but I again, but I appreciate your honestly. It’s so refreshing.