On some challenges of parenting a special needs kid (May 25)
We know that some of you listened to the radio piece we posted last week and thought hard about what was to be learned was from these intensely emotional testimonies by brave mothers, and about how to respond. Part of the reason we decided to post the audio is that the excerpts from the book “My Baby Rides the Short Bus” lay out some themes we haven’t discussed much on this blog and in a tone we ourselves rarely use. But we can tell from the responses we’ve had (not just through comments on the blog) that there needs to be more exploration into those themes.
In many ways the book has helped us articulate some of the deep challenges we now face and will face in the future as parents of Lucas. One of those challenges is how we as a family interact with the rest of the world. We’re still getting used to taking Lucas out in the public (with the logistical issue of the trach/vent being a primary limiting factor) but more often these days we’re coming into situations where we need to explain Lucas’s special needs to people around us. How do we explain Lucas in sentence? How do we tell people how excited we are that he was able to reach up and grab something in front of his face (with only a little bit of help) without also going into detail about his severe muscle disease? Who’s ready to hear the details? And is it even fair to tell everyone about Lucas’s disease as opposed to just talking about the “good things” he’s been doing?
These aren’t easy questions, compounded by the fact that many of those closest to us don’t live in Washington DC or don’t visit our home frequently and therefore learn about Lucas and our lives either through this blog or over the phone. And while we talk often about our own daily interactions with Lucas – which are largely fulfilling – and occasionally about our interactions with doctors and other caregivers – which are sometimes difficult – we rarely get into the real emotional and psychological rollercoaster of being the parents of a kid with so many complicated health issues.
Being around Lucas everyday and seeing his little accomplishments is an amazing thing, which explains in part why we tend to focus on those in our reports to the world. We share those things because it’s truly remarkable to see the progress Lucas has made despite his disability; in a complimentary way, we have a sense that uplifting stories are what people want to hear. It gives people a way to give us positive reinforcement about the job we’re doing as parents, and builds up our confidence and strength to continue. And we’ve been asking for that support, solidarity, and positive reinforcement since the day Lucas was born.
But what we write about less often – and what resonated in the emotions of the essays – is the fact that sometimes the realities of Lucas’s disability really suck. We feel uncertain and scared about the future, upset that we’ll probably never be able to do a lot of the things that we had imagined we would do with Lucas, and envious of parents who have typically developing kids. And we don’t know how to communicate this with those around us, nor is there a logical thing to ask for people to do by way of support. At first, people who lived nearby could cook us dinner; others sent cards or contributed to Lucas’s overly cute wardrobe. But as some of the writers in the “Baby Rides the Short Bus” anthology make clear, sometimes there’s nothing you can do to help… except listen, and feel compassion, and maybe somewhere down the line be better prepared to relate to someone else with disabilities.
All of this has nothing to do with whether or not we feel grateful. We do. The author of the third reading in the audio piece (Stephanie Sleeper) concludes her essay with these lines:
“I hope my friends know that even though I can’t repay them, and can’t express how much their help means to me, I am grateful for it. And I hope that people who don’t know what to say can realize that listening, and not saying anything at all, is the best thing they can do.”
For us, this theme of her essay resonates because we know it’s going to be hard sometimes for people to understand what we’re going through, and sometimes there won’t be anything concrete to “do” in order to help. But the accompaniment itself – the listening, calling, visiting, and blog reading – really is sometimes what we need the most. So for now, know that the stories of Lucas doing great things that blow our minds are genuine and should be celebrated, but that there’s a lot more going on too. And that — knowing that you all are following our story and struggling with us to figure out how to live, love and support — is the best help we could ask for.
Comments (14)
Cecilia Martinez Vasquez
January 4th, 2011 at 3:44 pm
Hola familia!
Hope you are all doing well. I am catching up and re-reading Lucas’ blog. I think of you three often and send you my best wishes. Thanks for sharing your historia de amor y lucha.
abrazos, cecilia
Jeanne Strole
July 1st, 2010 at 2:16 am
Hey again Krista, Lucas and Burke, too!, on the subject of dealing with Lucas and people out in public: in my family’s experience with Nicholas, we just sort of played it by ear and tried to deal with curious or concerned strangers on a case by case basis. We tried to learn to observe people’s reactions and figure out a response that seemed appropriate for the moment. So, advance planning on how to field people’s questions, or looks, etc., is helpful only up to a point.
Not sure if that’s helpful, your experiences may be vastly different. But this is what we found helpful with Nicholas….especially once he was old enough to begin interacting with the public, we followed our instincts and then we followed Nicholas’ lead. Does that make sense at all?
ashley
May 28th, 2010 at 11:33 pm
Krista, Buke and Lucas-
We are here for you always- to listen, to support, to read the blog, to talk, to send cute outfits and to love. We only wish we were closer so that we could share in Lucas’s everyday life. Lots of hugs and kisses.
Ashley, Brandon, Madden, Tya and Ellody
Ann Schrooten
May 28th, 2010 at 3:26 am
Just wanted to let you know that I’m reading, following and caring about your beautiful family.
Erin Thompson Switalski
May 26th, 2010 at 10:48 pm
Burke & Krista –
I don’t say hello much but I think of you two and Lucas often. Thank you for sharing the celebrations and struggles of your beautiful family. Abrazos de Missoula,
Erin
Tara Melinkovich
May 26th, 2010 at 11:58 am
I remember a friend once writing me an email telling me she was worried that I was depressed, blah blah blah. Not that her email was trivial or unkind or anything that a friend who care about you should not do. But I remember thinking (and writing back): I am grieving. I am grieving over the child I thought I was going to have. Not that I didn’t absolutely LOVE Joaquin and find him inspiring and beautiful and amazing! But his childhood was not what we expecting. And we had no idea what the future held for him. I think it is only natural to grieve over the life you had envisioned as a parent and the life you expected for your child. The uncertainty of what life will bring for you and your child is extremely difficult to face. But all of this as a parent is scary to admit. For me it felt like I was somehow saying I didn’t love my wonderful son.
You three are AMAZING! Every story you tell about going out into the world inspires me so much! I remember how weird it felt to carry Joaquin around with his little army backpack full of ice-packs, meds, and his feeding pump. And I never had to deal with a track/vent. I can’t put to words how truly inspiring you two are.
Tara
May 26th, 2010 at 2:51 am
Krista and Burke-
Your honesty and openess are inspiring. I follow your blog closely, look forward to meeting your little guy one day. I so wish I could put into words all the thoughts in my head as eloquently as you do but know that your continued sharing of Lucas’ life and yours too is impacting me in so many ways!
judi beck
May 26th, 2010 at 2:50 am
This is hard. This is hard. This is hard. And you guys are – all three – doing a great job. You have found reasons to smile and celebrate when you can and work hard and be realistic as well. No small feat.
Claudia Rodriguez
May 26th, 2010 at 12:07 am
Hola Burke and Krista,
Gracias por compartir sus sentimientos con nosotros. Cada semana leo el blog y me siento muy cerca de ustedes. Sí, a veces no se que decir, pero me identifico con sus alegrías y sus frustraciones. Creo que su testimonio me mantiene con los pies en la tierra y me lleva a valorar lo más importante que tenemos: la vida y el amor, lo cual ustedes tienen en abundancia.
Un abrazo,
Claudia
Vrinda
May 26th, 2010 at 12:03 am
Wow, great post. Thanks for sharing.
nonna stansbury
May 25th, 2010 at 8:10 pm
As most of you know week we visited DC was a hard week for all of us. When I got home I started an email to my friends, most of whom are asking about Lucas and our trip I called the email “Laugh a little, cry a little….” but never sent it. I just couldn’t express all the conflicting feelings I had during that week when Lucas had 4 “scary episodes.” Today having read the second Blog in a row that has me sobbing. So I went to my draft mailbox. Here’s how my email started out…..
“As you know we just spent a week in DC with Burke, Krista and Lucas. It was an up and down week, but brought me closer to understanding the challenges in their lives.
We did go for a walk one day and Lucas looked quite sportivo in his Whidbey cap and pink leopard sunglasses. I’m so glad that I have been able to be there to hold him, bathe him, and look into his eyes hoping that I am reaching him in some way. I’m also gradually understanding what Burke and Krista’ every day is like. It’s not easy, for sure and I don’t know the half of it. It’s hard to know how to help, what to do, how much to say, even how to react without being intrusive. But they are both so strong and focused that I’m in awe. But I know how much they need all of us. Then there’s the questions, “what can we do? how can we explain our feelings? what are they really feeling? HELP ”
….and I stopped writing. Here I am today, across the nation, understanding a little better some of the things we have hardly talked about. I love them so and am happy they are sharing such difficult thoughts and feelings with us. I don’t want to be just in awe.
Love, Nonna
Evan (and Aaron)
May 25th, 2010 at 4:51 pm
Couldn’t have said it any better than Jocelyn.
Thank you guys for sharing so freely and openly.
Margo
May 25th, 2010 at 4:45 pm
I was at the doctor’s yesterday and I happened to see a little girl who looked to be about 2 (turns out she is 4), with a backpack attached to her feeding tube and a hairless head. She obviously had some form of cancer that stunted her growth and had affected her ability to eat normally. I don’t know the details, but I thought of you guys. I thought of Lucas and realized that there is nothing anyone can do to make any of this better. It’s sucks for you, it’s sucks for Lucas and it sucks for this little girl and her family. The only thing to do is to keep going, day to day, go to the appointments, be ready for stranger’s glances, and try to enjoy each moment of progress for your little one. You guys do this, but you also go beyond and try to articulate and understand all of the emotions of the rollercoaster. I think that is incredibly brave, because I can imagine it might be easy to just go through the motions and just try to survive. Anyway, to make a long story short, your story will touch many of us and we appreciate you sharing all the good and all the very frustrating things about being Lucas’s parents.
Jocelyn
May 25th, 2010 at 4:22 pm
Thank you both for keeping it real. None of us could begin to comprehend what life is like for the three of you, and your blog not only helps us celebrate Lucas’ accomplishments, but also allows us to get a sense of what his challenges mean for your daily life (ie, emergency trach changes in parking lots and night nurses sleeping in your home). You’ve not said much on the blog about how you are feeling about it all, though. I imagine even articulating such a thing would be a massive challenge all of its own. But do know that we’re here for the good and the bad; the ups and the downs. If you find yourself needing to virtually rant and rave and scream about the injustice of it all, we’re here to listen, to learn, to support, and to send all the love and solidarity that we can possibly transmit through the keyboard. I know you have to be super-human for Lucas’ sake, but please know you can be fully human with us.
Leave a reply