I’m back where I was when this crazy ride started 2 weeks ago. When we discovered our daughter’s photo had been stolen from my website, then published internationally to promote prenatal testing. When we chose to speak up, to take on our bullies in public and take the hits as they came. When we said no to worldwide media, reporter after reporter, as we focused on chemo and survival. When we flailed under a deluge of advice and help and yes, criticism, before giving the mess over to more experienced hands, hands we could trust. We are where we have been all along, in the place that really matters – at the bedside of our very sick girl.
Back in the hospital again, and somehow the hurt and outrage fades to the background. Cancer is good for very little, but it does bring perspective.
If I could erase this episode I would – it is the very last thing we needed. Stealing precious time and emotional energy when we need it most. Not to mention, such a disheartening sign of the world we live in, where anyone would so thoughtlessly and publicly disrespect a child, any child. I’m sure you can imagine the cruel remarks that have been unleashed on us as well. People can be hateful. There are some who quite plainly wish my daughter dead. Apparently I should expect this and am in fact to blame. Those ones seem particularly upset that I dare to speak up at all.
There are already too many in the world who shrug their shoulders and “what-do-you-expect” their way past all that is unkind and unjust around them. We must live toward the world we want. Even if that means making a fuss.
I’ve learned so much from others who’ve opened up their lives just a bit, to give us glimpses into their reality. That’s the beauty of storytelling: in blogging, photography, poetry, song, film and thousands of other ways humans express themselves. And every time you put yourself out there, it’s a risk – of being abused, misunderstood, misused, co-opted by some other agenda… but we keep doing it because to hide is to let them win.
Let’s be clear, I’m not leaving my blog up to be petulant or to thumb my nose at the risks. It totally freaks me out at this point. I feel exposed and exhausted and I have more important matters in my life.
I’m leaving it up for the same reason I posted that photo in the first place: because it matters that people hear these stories – stories of a good life with a child who has disabilities. Real and messy and sometimes hard, but absolutely worth the trip.
In a world where pressure and fear is brought to bear on expectant parents whose children may have a chromosomal anomaly, people deserve the truth from those of us who actually know. Life has never been better for people with disabilities, and it’s only getting better. That’s not to say it’s easy, but the best things in life rarely are. When’s the last time you heard any parent raving about how easy parenting is? That’s not why we do it.
Ask a parent what matters most, what makes them smile and gives their life meaning. Ask a parent of a child with disabilities. Here’s a hint – exact. same. answer.
Having a child like my daughter is no tragedy.
You have questions…
The biggest question we’ve gotten is what can I do? There have been so many offers that we are humbled and overwhelmed. The cruel and callous should be on notice – they are woefully outnumbered. The answer is simple. The best way to help us, to help my daughter, is to embrace ALL people.
Is that overreaching?
I don’t care. People matter. We have the ability, the innovation, and the resources to make room for everyone in this world – we simply lack the will to do what it takes.
If you need a suggestion, we believe in the work of the Down Syndrome Research Foundation – who seek to create and implement the best practices in reading instruction, speech therapy and life skills development for children like my daughter.
For all who’ve asked for an update – thank you. Our girl is very sick, but she is fighting through. She hates the “strong medicine” that has taken her hair, keeps her isolated and makes her feel yucky, but we are so grateful that it is keeping the leukaemia away.
Right now her immunity (ANC) is at zero – too low to count. She has a number of infections and must remain in hospital until she recovers enough to better fight them off (ANC of 0.3). This is our last week of Delayed Intensification – one more IV chemo on Monday then her immunity counts need to recover (ANC of 0.75) before she moves into what should be a less brutal 18 months of chemo. If all goes well she may even be able to return to school part time this fall.
She’s very excited about growing new hair this summer. Brown, she’s decided. It’s impossible to say what colour or texture may grow back, but if anyone can control it by sheer willpower, it’s her.
June 28th, 2015 at 9:15 pm
You guys are amazing how you handled that whole media mess! I’m so glad you fought back and that your blog is here to stay 🙂 I’ll never forget how I first found your blog and then later met you!!! Thank you for sharing so much of yourself with us readers. Your story is so important.
July 5th, 2015 at 3:34 pm
Thanks Emily – what would we do without you. You’ve been a Godsend!
June 28th, 2015 at 9:34 pm
[…] So now what? – answering the “how can I help?” and “how is she doing?” questions. There are too many encouraging comments to address individually at this point in our life, just know that you are deeply appreciated. […]
June 28th, 2015 at 10:12 pm
Still my favourite blog of all time – thanks for your honesty and for how you keep challenging all those false-but-pervasive ideas that some people don’t matter as much as others. Praying (as always).
July 5th, 2015 at 3:35 pm
Thanks Emma – you’re one of my faves too! 🙂
June 29th, 2015 at 1:57 am
I got to know your blog because of that post of two weeks ago and became a major fan. I went through most of your posts and loved them all.
I’m a “progressive catholic”, if we can label it somehow, and could really relate to all your posts about your decision to change church.
Everything in what you write is inspiring for me, mostly because I can identify with your thoughts, doubts, exhaustion… you’re not a super woman, you’re a real woman doing her best in a very demanding situation. That’s what makes you extraordinary. No super powers, but still a hero in every day life.
Thank you for wanting to find the energy to share your journey with us. That is really generous of you. This changes the world, one post at a time.
I pray for you, with you, and think of you a lot.
Joana from Portugal.
July 5th, 2015 at 3:36 pm
Joana from Portugal – I sense we are kindred spirits. This connection around the world is the beauty of the Internet. Thank you for your encouragement!
June 29th, 2015 at 2:12 am
The question that you rightly decided to speak up about is very important for the Humankind as a whole because, in fact, the so-called “prenatal testing” is a dangerous manifestation of modern “*EUGENISM*”. Are we heading towards a world in which lovers will need a “whatsoever permission” to make children, a world in which “ill-directed” /*scientific*/ (?) development would allow public health systems to dictate if you can or cannot have children in particular with respect to the eventual high cost ($$$) of treatment the birth of a child with any given illness may be the source of? Are we heading towards a society which may say to any couple: “Hey you both! Do not copulate! It’s too risky”?
July 5th, 2015 at 3:38 pm
A scary thought… whenever we start to value one “type” of person more highly than another we are opening up a big can of ugly and potentially, evil.
July 1st, 2015 at 9:57 am
Christie, I admire your courage, ache for the hurt in your family, and pray for your daughter;s return to health and your family’s continuing ability to handle so much stress with so much grace. I am so sorry that in the midst of so much pain already, unkind and unscrupulous people have dumped so much more on you all. May God strengthen you, may He heal your sweet little girl, and may He bless you and continue to bless others through you.
July 5th, 2015 at 3:39 pm
Thank you – we very much appreciate it!
July 1st, 2015 at 6:10 pm
Reading this for the first time, I am shocked and enraged that this has happened to you. My initial reaction is to vent and want to strike back and yet I know the most effective reaction is to take this energy and filter it into a positive direction. Let us know if there is any avenue through which we can help you take a stand for Rebecca and the value of all of God’s precious children. Know that we are always praying for all of you, for God’s sustenance and perfect love. There’s no way to know why you’ve experienced this but it will make you even stronger and at some time, God will use it through you to strengthen the lives of others. In fact, He already has.
July 5th, 2015 at 3:41 pm
Thank you Jocelyn – it has been almost surreal. Not just how hurtful, but what unbelievably cruel timing. I can only hope thought I’d raised to the value of all people and the need to respect them. Especially the sweet and wonderful gifts like our special children. Thank you!
July 5th, 2015 at 3:57 pm
Some people are misguided enough to think that their way of looking at things is the only correct way.
I am sorry people have been unethical, unkind, in human to you and your family.
July 12th, 2015 at 10:56 am
I don’t know if there’s anything to my attempts to sending positive thoughts your way, but I am anyway and do when you don’t know it. Living can be hard work, that you for sharing the bard and beautiful bits. – Ms
July 19th, 2015 at 1:54 pm
It means a lot to me. Thank you!