It was sunny and warm all weekend long, so on Sunday we packed Lucas and a picnic into the car and went into Rock Creek Park for a lovely afternoon. The three of us lied in the grass, gazed up at the leaves, listened to the water babble by, and barely looked up to notice who was watching when we flipped on the suction machine. It was nice.
The other highlight of the weekend was going three days and nights without any nurses. Although we’re coming to feel like Lucas’s nurses are practically part of the family — especially Victor, who’s here half the week overnight and greets us when we get up in the morning — it was pleasant to have the house to ourselves for a few days, especially since there were no major overnight episodes. Lucas thought it was fun to hang with his parents so much, and showed his love by staying up laughing and playing with Burke until 2 am Monday morning. The little guy has done really well lately, but we’ll still sleep a little better tonight knowing Victor is back to watch over him.
Since it’s the end of May we’ve gathered our favorite photos from the past two months into a flickr album. Below that you can check out Lucas’s latest video appearance… flapping his wings.
First, we want to thank everyone for all the thoughtful messages in response to our last few posts. It wasn’t easy to publish those challenging reflections, so hearing from you was much appreciated.
Meanwhile, it’s been a big week for us, with Krista doing Spanish interpretation for Salvadoran anti-mining activists in town and Burke nearly getting arrested at a raucous protest at the DC City Council. The Salvadorans were here for CISPES actions targeting the Pacific Rim gold mining corporation and are from the rural communities that would be destroyed by the toxins the mining would bring. Their testimonies were courageous and inspiring (and only slightly challenging to translate). A good recent article about the court battle over the mining permit is here.
While Krista was interpreting at a press conference, Burke was a block away at a protest of the City Council’s budget cuts, part of a city-wide coalition that busted into the Council’s breakfast meeting to demand higher income taxes for the wealthiest citizens of DC. The action forced council members to vote on the proposal, and it fell just 2 votes short, a victory of sorts. Here’s some good radio coverage if you’re interested (featuring Burke):
It’s been good for both of us to feel that we’re still very connected to the issues we care so much about, and Lucas seems supportive. For two days he was home most of the day just with Florence, one of his nurses, and he did great. He’s getting his second tooth (his bottom right tooth), and he even played along as we tried to get a shot of it.
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.
These past few days have been wonderfully easy for Lucas! He remains a champ, breathing on and off the vent like it’s old hat. Like he wouldn’t ever consider stopping. Like we were crazy for worrying. Of course, something was definitely weird with his breathing a week and a half ago and we haven’t forgotten, nor have we figured out exactly what was going on. We know that things can change quickly so for now we’re keeping a close eye on the little dude.
Meanwhile, we’ve been reading more of the essays collected in the book My Baby Rides the Short Bus. We actually quoted from the book back in January when our friend Sha gave it to us, and just recently we delved back in. The subtitle of the book sums it up well: The Unabashedly Human Experience of Raising Kids with Disabilities. The essays, written by parents with more years of parenting experience than the two of us, are sometimes scary, sometimes overwhelming, sometimes so incredibly honest that it melts your heart with love. We’ve been struck a number of times by reading what feels like a description of our emotional experience, put into words that we hadn’t yet even been able to form.
We found audio recordings of some of the authors reading excerpts from the book. There are three here, all good, all emotional. The third essay essay especially struck a cord with us – it starts at about 4:30 if you want to skip ahead.
After an eventful week, we are happy to report that the weekend went by without any major breathing problems. We’re still experimenting with the adjustments to Lucas’s vent (with the help of his doctors and other parents of kids on vents), but it seems like we’re narrowing in on a solution, which is relieving to say the least.
Over the weekend Lucas got outside a couple times and got to meet some new people. On Saturday we went to Arlington to see an Osteopathic doctor. The doctor made no promises but spent over an hour examining Lucas and very gently encouraging slight movements in his bones, especially the bones of his skull. It may sound odd, especially since we’re not sure how it might help Lucas; but maybe the treatment will help drain the fluid from his ears, or maybe it will move the craneosacral fluid in his body, or maybe it will help him feel more balanced. The other highlight of the trip was driving over the Potomac River into Virginia — it was the first time Lucas had ever been outside the District of Columbia.
On Sunday Lucas got out again, this time for some porch sitting with our friends SaraT and Tammy who were visiting from San Francisco. ST and Tammy brought Lucas finger puppets, which immediately made him smile. He reached out, grabbed the neon octopus, and proceeded to try to eat it.
Lucas actually tries to put a lot of things in his mouth these days. Last week he got his Nonna’s finger into his mouth and when he bit down she discovered that he is getting his first tooth! The top of the tooth has broken through his bottom gum and is inching its way up, seeming to get a little longer and sharper every day. In general, Lucas probably missed his grandparents over the weekend… and why not? Besides using their fingers as teething toys, Lucas clearly enjoyed every minute of playing, snuggling, tickling, and cooing with them.
The last week has included lots of ups and downs for Lucas. While it was wonderful having his grandparents in town – including an enjoyably extended stroll around the neighborhood with Lucas sporting his pink-leopard-skin sunglasses – there have also been some scary moments that bring us back to a difficult reality: Lucas remains a very medically fragile child.
First, we had an appointment last week with the new pulmonologist that Lucas will be seeing from now on, and it went really well. We gleaned a lot from a long conversation with the pulmonary doctor and a respiratory therapist, and the showed us how to do “chest PT” to help loosen his secretions. Perhaps all the practicing brought some gunk in Lucas’s lungs up, because as we locked his carseat into place for the return trip he suddenly got a “plug” in his trach. This situation – where mucous from his throat clogs the small opening in the trach tube – has happened before, but never in a parking lot. As the alarm continued to sound on the oxygen saturation monitor we realized that we were going to have to do an emergency trach change. As Lucas struggled to breath, Krista got ready with the extra trach that we always carry with us and Burke proceeded to extract the other one from his trachea. Krista replaced it will the clean one and we pushed air into his lungs with the resuscitation or “ambu” bag. A look of relief came over his face as the percentage number on his monitor climbed back to 100.
We felt good about the fact that we accomplished the trach change in rather precarious circumstances, and figured the episode would be our Lucas excitement for the week. But then on Friday evening we were at a barbecue with friends when the nurse taking care of Lucas called us and said we needed to hurry back, that Lucas was having problems breathing and may need a trach change. We jumped on our bikes and raced home, only to find Florence standing relieved over Lucas as he played with his giraffe. It turns out the situation had been different than our episode in the car, that there hadn’t been a block in his trach but rather that Lucas hadn’t been breathing with enough effort to keep his oxygen-saturation level where it should be. When suctioning didn’t seem to help and Lucas kept slowly dropping down into the 80s on the monitor (which measure the percent of of oxygen saturation in his blood) Florence decided to call us home. Then shortly after she did, as we were peddling hard towards home, Lucas returned to normal.
The little guy did fine all through the weekend, and then on Monday morning he had another episode. This time it was 7 am and we were waking up as Florence watch over Lucas in the back room. We could hear her voice talking to him calmly, and then heard the alarm from the oxygen monitor followed by the suction machine switching on (not that unusual so far), but then suddenly Florence started to raise her voice and shout at Lucas. We jumped out of bed and ran to the back room. Lucas was blue and his oxygen saturation was near 40%, the lowest we’ve ever seen it. Florence was using the resuscitation bag and he already appeared to be getting some color back. A minute or two later he was back to normal, making funny faces as if nothing had happened.
What was particularly scary about the last incident was how fast it all happened. It was similar to the episode back in March that landed him in the ER for the second time in that it appeared that he wasn’t making much effort to breath for a brief period of time. Then, just as suddenly as it came on, Lucas snaps out of it and goes back to breathing normally. Fortunately we have the equipment to deal with these situations, but it’s still quite scary.
Ultimately, these things remind on that not only does Lucas have special needs but he is fragile — his very breathing depends on a machine, a digital monitor, and a team of nurses, doctors, and parents who are vigilantly watching over him to make sure he is safe and as healthy as possible. The funny thing about all the troubles Lucas had this last week is that in between them he seemed as alert and interactive as ever — the big smiles he shared with his grandparents as they played were especially gratifying — and so it didn’t necessarily represent a step back in his overall progress. Still, we know that there will be more scary episodes ahead; at times it will be exhausting for us, and surely for Lucas too.
Krista is out for the day at a workshop and so Burke and Lucas are spending the morning cooking up some mother’s day cheer. We (Burke and Lucas that is) aren’t big fans of cut flowers, nor are we very good at writing cards, but we sure do want to show mom how much we care about her, and tell her how amazing she’s been during her first (sometimes tumultuous) year as a mother. She’s the grounding spirit of our family and, well… Lucas says it best while sporting his new pink-leopard-skin sunglasses:
Also a shout-out to all the other great moms out there, including Burke’s mom (who’s visiting from Seattle and, helping us in the garden, and enjoying the special time with her grandson); Krista’s mom (who we miss since she’s in Portland, but who will be joining us in spirit by checking the blog multiple times throughout the day); and Burke’s sister Ashley (who, along with Lucas’s cousins, has supplied 90% of his rapidly expanding wardrobe, including the aforementioned sunglasses). We love you all!
Although we haven’t made a big deal of Lucas’s snot on the blog recently, it’s actually been a big part of our daily lives. The sheer quantity of snot and saliva (aka “secretions”) over the past month has been hard — almost disheartening — because it has affected Lucas’s breathing, and thus his ability to sit up and be active. At first we thought it was a cold, then maybe allergies, then we started thinking that the increased secretions were here to stay.
But although they’ve waxed and waned before, the extra secretions seem to have finally leveled off over the weekend, and it’s made a big difference. Lucas can sit up longer, meaning we can go outside with him long enough to do things like grill and eat and enjoy warm summer-like evenings. Also, for the first time in weeks he’s back to spending a few hours a day completely off the ventilator.
Yesterday Lucas did especially well, accomplishing some impressive personal feats. In the morning Lucas and Krista ventured out to the porch by themselves (meaning that Krista carried out Lucas along with his vent, portable suction machine, and monitor… all in one load). The feat would have been hard to imagine a couple weeks ago since excess secretions mean frequent and sometimes urgent suctioning during transport, impossible if you have Lucas and all his gear in your arms. But yesterday Lucas did great, and eventually fell asleep in his mom’s arms while rocking in the chair.
At noon his physical therapist arrived and Lucas was in a good, post-nap mood, playing along with the therapy, rolling his shoulder across his body to reach for toys, and straining to hold his head up without support to look up at his mobile. After nearly an hour of work Lucas was lying on his back, and he suddenly noticed Evan move a tube overhead. With a burst of determination, Lucas reached not just his forearms, but also his elbows and upper arms off the bed and up into the air unassisted to grab at the tube — a big deal!
Lucas got another nap in before his speech and language therapist arrived. We hadn’t been able to use his Passy-Muir speaking valve in over a month, but today when Mindi turned off the vent and put on the valve Lucas thrived. He managed to breath out past his trach and exhale through his nose and mouth for 35 minutes, a near-record. While he bravely breathed on his own better than ever, he still managed to have energy left over to play with the therapist.
Finally, Burke came home early from work and all three of us got out for a stroll in the neighborhood. Lucas was pooped, so he only got to see the rehearsal shots that his uncle Isham was filming (he’s making a TV show about energy that will feature our neighborhood, Mt. Pleasant) before Lucas fell asleep in the afternoon heat.
After dinner he was awake and active again. Lucas got a hold on his favorite rattle and showed off his amazing ability to thumb suck and shake the rattle at the same time, though he got a little carried away…
(Perhaps he was excited about the imminent arrival of his grandparents, and the fact that today, Cinco de Mayo, is Michael’s birthday. Happy birthday Papa!)
It was sunny and warm all weekend long, so on Sunday we packed Lucas and a picnic into the car and went into Rock Creek Park for a lovely afternoon. The three of us lied in the grass, gazed up at the leaves, listened to the water babble by, and barely looked up to notice who was watching when we flipped on the suction machine. It was nice.
