Six ideas I hope we keep after the pandemic

We are about to turn the calendar over to a brand new year, and the beginning of vaccine administration gives us hope that we may also be turning the chapter in the history book on the COVID pandemic. I am so ready to get back to “normal” life! Yet there are a few practices that have become mainstream during the pandemic that I hope we keep around.

Curbside Pickup

Walmart was already offering this prior to the pandemic, and grocery and food delivery was starting to become mainstream in my area prior to our March lockdown, but today pretty much every business–from the big box store to the neighborhood book shop–is offering some way of getting your goods without going in. Since they’ve gone to the trouble to figure out the logistics, I hope they keep it up.

Shopping with little boys has never been easy for moms, but shopping with little boys in wheelchairs is even more exhausting. Finding a space with enough room to manueuver the wheelchair (don’t get me started on “handicapped” parking abuse), lifting him in and out of the car, keeping up as he joyfully and purposefully runs into displays and people with his chair while I attempt to grab pants in my size. Then God forbid I have to find a place to change him!

Shopping without having to get out of the car is just preferable. And it’s so difficult to find babysitters that I don’t want to waste my precious respite hours picking out a side of meat and ripe bananas.

Yes, there are times when I really do need to go into a store. (With my finicky feet, I am not ordering shoes online, but walking a mile every day during lockdown has worn my sneakers into shreds.) But most of the time, picking it up works just fine, and now I can still support my small local businesses this way.

Spacing in the Aisles

Speaking of shopping with a wheelchair…

Yes, most stores today make it easy to get in and out of a store on wheels, but pre-pandemic store layouts made it almost impossible to shop once you got inside. Aisles were so tight and packed that there was no way the chair was getting through there. Ironically, the children’s clothing stores were the absolute worst, which makes no sense considering many parents are using strollers. I don’t know if it’s due to slow downs in inventory or the desire to promote social distancing, but the few stores I’ve been in lately have much wider berths for shoppers to navigate. And the new one-way rules make collisions between patrons in ride-on carts and little boys in wheelchairs less likely.

Telehealth

If I or one of my kids has something medically wrong, I want to be seen by a doctor in person. But both my boys have specialists that require visits every three or six months in order to “stay on the books.” They are basically check-ins where prescriptions get renewed and any growth/changes are noted.

Since March we have been able to attend many of these appointments via our laptop. This reduces our exposure and keeps the waiting rooms free for patients with serious issues. It is also logistically sooooo much easier. I have been known to ask off work early, grab the kids the second their school bell rings, fight interstate traffic, get everyone out of the car into the doctor’s office, only to realize we are ten minutes late and must reschedule. And there are no times to reschedule for another six months, which means we are in danger of “falling off the books.” This has happened not once, but numerous times.

This year, I just come home, boot up my computer, and call whichever son requires the appointment over to the screen long enough for the doctor to see them and determine they are not in need of further service. Box checked.

Working From Home

No, it isn’t possible for everyone to do an effective job working from home. And most of us need regular interactions with our colleagues to keep us motivated. But there are days it would be nice to have the option to work from home. The kid has a low-grade fever, but there is no reason I can’t check on him on a regular basis and keep up with my work load via internet. Or a plumber is coming to fix my overflowing toilet but can’t give me a time so I might be stuck here all day.

I think employers are starting to learn that we don’t always need to take these days off. We can work effectively from home at least some of the time.

The same goes for these long meetings. Do we really need to have 200 people travel to a common venue to roll out the “theme” for this year? Can we just do it via email or a zoom chat?

And yes, conventions are a great way to revitalize and get new ideas for your industry. It helps to get away and meet in common with people from around the state or the country or the globe. But how much business travel is really necessary? Can we give people back their family time (and save tons in greenhouse gas emissions) by letting them attend many corporate and professional development opportunities remotely?

Online Events

Again, there is nothing like attending the theater in person, or hearing your favorite artist play in front of a crowd of thousands. And, I’ll admit, online worship services don’t tend to do much for me. However, being able to live stream everything from concerts to church to guest lectures has given millions the opportunity to “attend” events they would never be able to attend pre-pandemic. Many churches had never invested in the tech to take their Sunday worship into the homes of their shut-ins. But they have now. Many artists who would’ve been touring around the country have been playing from their living rooms, allowing us an intimate look at their lives and the ability to “chat” with them and other fans via FaceBook. For some, due to physical issues, mental health issues or lack of funds, going to events in-person is rarely possible. For those folks, the world has opened up a little more.

Reconnecting with Friends

During the pandemic, I have Zoomed or Facetimed with friends from high school, college and other eras of my life. These are folks I might be “friends” with on Facebook, but with whom I hadn’t had a real conversation in decades. It was so much fun to see their faces and just jump back in and pick up where we had left off. I hope when we fully resume our busy lives, we still choose to make time for each other.

Being a parent of a child with special needs can be isolating at times, but ideas like these, can make it less so. So while I am ready to throw out much of the change that has come with pandemic life, I hope we will hold fast to some of it.

Back to school during a pandemic

I’ve heard it all summer long. “If you’re scared of the virus, stay home.” And I pretty much have. I’ve had groceries delivered, done take-out only, and done most of my socializing on my evening walk or via zoom. But my privilege to stay home is about to end. As an educator, I am expected back in the classroom, even though my two kids will continue to learn online.

Don’t get me wrong. I WANT to be back in the classroom. Online teaching was not as rewarding as in person. I missed being able to have unplanned collaborations with coworkers waiting for the breakroom coffee to brew. I missed my library full of beautiful books that I could arrange and put in the hands of eager students. And most of all, I missed my students. And I know some of them were not in ideal situations at home. It breaks my heart.

I know my own kids at home were struggling. My oldest, who is on the autism spectrum, battles depression and anxiety, and I suspect is also ADD, had a very hard time tuning into online learning. It kind of surprised me, as his favorite thing is to be on the computer and he’s fairly introverted. But he admitted to me that he’s a lot more of a social animal than he thought, and not being in the class with his teachers and peers made him “feel like I’m not there.” He checked out by quarter four. Thankfully the teachers offered grace.

My youngest has multiple disabilities, including physical and intellectual. He must have help doing his work, even using his board to speak. My husband or I must be present at each online therapy session (he has three per week) to help him do the required activities. This one is my social bug, and for a while he would cry whenever we said goodbye via the video platform. I can tell he misses his teachers terribly and he needs them to progress.

Even so, one has asthma and the other has a complicated medical history that I’d rather not add to. So I have sheltered them from Covid and will continue to keep them at home. My husband is still allowed to work from home so he will take on the responsibility for both their educations and do his own job. I know he will do a wonderful job. I also know it will be far subpar than what they would get at school.

So now I become the disease vector. If Covid comes to my house, I know it will be from me and that I will have to live with that. I also know that I love my job, I love my students, and I will do what I am asked to do. But I won’t say that I am entirely comfortable with it.

When schools closed down in March, South Carolina had 44 cases of Covid 19. Today we have 1553. If it wasn’t safe for us to go to school in March, I don’t see why it’s safe now.

It’s true we have learned some things about the virus, about how it spreads, about how to treat it. Our schools districts have worked hard to rethink the school day to promote physical distancing and better personal hygine. Due to 30 percent of our students remaining online, our classrooms will be smaller. So maybe what we are about to attempt is doable.

However I can’t help feeling that it didn’t have to be this way. That if all those people who were telling me to stay home and let them enjoy their freedom had also modified their habits as my family did, that we might have this virus under control. That if everyone had started wearing masks back in May that I wouldn’t have to feel I was choosing between my job and my family’s safety.

See, saying, “I’m healthy. The virus won’t affect me,” is perhaps a bit naive, but more importantly, it’s ableist. It’s saying, because I am healthy and strong, I get to do as I please. If you aren’t, too bad, so sad, stay home. Yeah, I would LOVE to eat dinner in a nice restaurant. I had serious envy of everyone’s beach vacation photos. But I knew I had two precious someones in my life I had to protect.

If you’ve never handed your newborn over to a surgeon, or seen your child struggle to breathe, perhaps you don’t understand. But it shouldn’t take that. Why can’t Americans care for one another instead of playing this game of survival of the fittest? It isn’t “justice for all” and it sure as hell isn’t Christian. It’s nothing but politics as usual, which, as usual, leaves those with special needs with their hands out, begging for scraps.

Yes, I judge you for not wearing a mask

When the COVID-19 virus started to spread in the U.S., there was a feeling of solidarity. “We’re all in this together.” However, that quickly dissolved into the typical camps where every move we make is controversial.

Mask wearing during a pandemic, should not be one of those things. But it is.

Several weeks ago, I was heartened to learn that although two hair stylists with COVID had seen hundreds of clients while contagious, no one had gotten sick from them. That’s because both hair stylist and client wore masks. Yay! I thought. This proves that masking protects us. Maybe I can start going to the store and taking my kids to summer activities.

But the next time I went out, I realized that was not to be. 75% of the people around me were unmasked. Even some of the employees required to wear masks had them down under their noses. I had mine on, but my mask alone doesn’t do that much good. It’s when everyone wears them that masking works.

Over and over again I get told, “If you’re worried, stay home.” For the most part I do. But this is an ableist response. It is saying that those who have medical issues or live with family who have medical issues should just lock themselves in their homes for the next year. Honestly, I am privileged enough that if that’s what I have to do, I can. But most people can’t.

Here’s an example. I get my groceries delivered to cut down on exposure. But this costs a good bit extra. What about the mom of a medically fragile child who can’t afford that? Who relied on WIC or food stamps? She has no choice but to go to the store where you are unmasked. What if she’s a single mom and has no choice but to bring her medically fragile child with her to the store where you can sneeze on her? What if she also has a job stocking shelves and running a register so that you can get the things YOU need? What choice does she have but to show up every day and expose herself to a virus you are potentially spreading? What if she and her child have substandard health insurance and when one of them ends up in the hospital? She not only loses her job, but owes thousands of dollars she will never catch up from? What if her child has complications and doesn’t survive?

Are you telling me that your right to not wear a mask is worth ruining this woman’s life over?

“But I’m not sick!” If you don’t understand the word asymptomatic by now, then I have no words for you. If you still believe this whole “virus thing” is made up, I have no energy to engage with you.

Here are the only acceptable reasons for not wearing a mask.

a. You are a child. Depending on your kid, they are only going to comply for so long. I get that. I think most people do.

b. You have an intellectual disability or dementia that keeps you from complying.

c. You have a psychological or sensory condition that is so severe, it makes mask wearing a trauma trigger. If that is your story, please know I am not talking about you.

If none of these conditions apply to you, and you still aren’t wearing a mask in indoor public spaces, then no, I don’t understand. I don’t think it’s your right to potentially infect people. I don’t think it’s a liberal conspiracy. What you are essentially saying is that your discomfort is more important than the health of society’s most vulnerable. And yes, I will judge you for that.

To My Friends of Color, I Wish to Apologize

To my friends of color, I wish to apologize. I confess that I used to believe that because I didn’t associate with people who flew Confederate flags or used the “n” word, that I could not be racist. I confess that I have used the fact that I had friends of color to prove that I was not a racist. I confess that I have watched movies and read books with racist overtones but not recognized them as such, or gave them a pass as “part of history.” I confess that until a few years ago, I would tense up and quicken my pace when I saw a group of African American men hanging out on the street corner. I did not wish to have this reaction, but somewhere along the line I was taught, intentionally or no, that the unknown black male was a threat. (Not my neighbors, who live in my suburban neighborhood or my African-American colleagues. They were “like me” and therefore safe.) I confess that I have kept silent when people told racist jokes near me because I hate confrontation.

I confess that I was taught and once believed that we, as Americans, were all equals and that we should be color blind in dealing with others. I believe this ideal I was taught was meant with the best of intentions, taken straight out of Dr. King’s message of judging people based on the content of their character. However, in becoming a believer, I missed that fact that it was an ideal, and not a reality. Yes, we should all be equals in our society, but of course, we are not. It never occurred to me that my “safe” neighborhood might not be safe for everyone. I didn’t see why race should be a factor in applying to college or in the workforce. I have never feared when I was pulled over for speeding, that I might end up beaten or dead. Black mamas, how do you even let your boys out of the house? It is terrifying enough being a parent; I cannot fathom being a parent of a black child.

I recently watched the series “Little Fires Everywhere” and one scene has stuck with me. Reese Witherspoon’s character tries to justify her privilege by saying “I made good choices.” Kerry Washington responds, “You didn’t make good choices; you HAD good choices.”

As a white middle-class woman with a supportive family, I have always had good choices. I have not always had the choices I wanted. I have had disappointments and struggles. But I have always had the resources that allowed me to make decisions that did not put me in jeopardy. And if I did step out of line (my speeding ticket being my example) I was treated respectfully and given a $35 fine. Until a few years ago I thought this was the way everyone was treated. That if you were pulled from your vehicle and brutally beaten, you must have done something horribly wrong, kidnapped a child or murdered someone. Not had a little weed in your glove compartment. I know now that is not the case.

I also wish to apologize that it has taken me so long to write this confession. You see, the narrative in my head had always told me I was one of the good guys. Holding a mirror up to myself and seeing more clearly is not fun to do. And processing it into words has taken me a long time–years, even.

But I wish you to know that I DO see more clearly now. I will never see things from your perspective because I have not experienced oppression. But my eyes have been opened and my heart is breaking. I am infuriated, deeply saddened and absolutely terrified. Just as I see myself more clearly, I see that the country I have always loved and held up as a beacon is not what I thought it was. And I have to mourn that. But I pray that God will help me and help you and help all of us to find a way forward.

How we value a life

Recently the case of Maria Bueso has made headlines and pulled heartstrings across the country. Bueso is from Guatemala and came to the United States — legally, I might add — to receive specialized medical treatments for her rare genetic condition. Now, despite the fact that she has committed no crime — in fact, she just started a scholarship program at her alma mater — she is to be deported.

In her home country, she cannot receive treatment. She will inevitably die.

I hope it is not because I am a mama bear of a child who also has a rare genetic condition that this strikes me to my core. I hope that all Americans see that this woman, despite her medical condition, despite the fact that she “was not born here” is deserving of being kept alive.

Let me qualify. She is not deserving because she has against all odds graduated college cum laude, or because she has started a scholarship, or because she is willing to be a spokesperson for all the children and adults who are facing a deportation that will likely end in their deaths. She is deserving because she is a human being. And we are a country with vast wealth and resources. We suggest that we are a “Christian nation” even. America cares for people. It values human life. At least, I used to believe it did.

More and more I lie awake at night worrying about my own child. Not because he is ill. But because I fear that his life is not valued as highly as that of his peers. I worry that if his school was shot up, he would be left behind in his wheelchair. I worry that if Medicaid is cut he may not have access to the amazing school and healthcare he currently enjoys. I worry that if our family had to flee for any reason, he would not be welcomed. He would be seen as a burden on society.

Though I have always thought of America as a caring nation, I also know that we are a “pull yourself up by your bootstraps” nation, a place where hard work and intellect are highly valued. There is nothing inherently wrong with this. However, when we place value on a person based solely on what they contribute to society, we are discrediting a lot of God’s children. And missing out on what they have to teach us.

When we look at the numbers, society is being asked to spend a lot more on my child than it will ever get out of him. I am pretty sure he will not develop a cure for cancer or be the next great Olympian. But I am also positive that his life has just as much value as anyone else’s.

In 2015 then-candidate Trump went limp wristed and made baby talk in front of the cameras. In that 15 seconds, he told me he did not value my son’s life. Since then, his administration has attempted to cut my son’s healthcare and to do away with certain provisions of his education by changing the IDEA act for special needs students. I have watched in horror as my country has locked children younger than N in cages and argued that they didn’t deserve something as basic as soap. I have watched as over and over again the court system has acquitted police officers of murdering black people. I keep waiting for someone to try something, anything, to curb the mass shootings that plague our nation.

I never intended this blog to become political, but to me this isn’t about politics anymore. It’s about my children’s future and the America I want them to inherit. It’s about human decency. I want them to live in an America where value is not determined by the strongest or the richest or the smartest. But where all people are given a chance at life, liberty and the pursuit of happiness. May it be so.

(To read about the above referenced case of Maria Bueso, https://www.nytimes.com/2019/08/29/us/immigrant-medical-treatment-deferred-action.html)

What Government Shut-down Means to a Special Needs Parent

My sweet boy turned 5 this week. As such, he is no longer eligible for services from WIC, a Federal program that provides nutrition and nutrition counseling to pregnant mothers and children under the age of 5. This is not a program for poor people. You can make $60,000 and have a child on WIC. We sought it out when N. was put on a formula that cost more than $300 a month to purchase.

So we have already found other options to help offset the high cost of N’s nutritional needs, but many of my special needs mom friends are worried. Some of their boys are tube fed. As such, they don’t supplement with formula, as we do. Formula is their child’s primary sustenance, and costs more than a thousand dollars per month. Just to eat! This does not include medical equipment or therapies or doctor visits.

Most of these moms have had to purchase their kid’s food supplies out of pocket this month while WIC is shut down. And most of these moms consider themselves middle class. They can do this for a month or two. But then what? $1000 a month for one child’s food is not sustainable. Not for anyone I know.

Then there’s Medicaid. Most people with significant disabilities are on Medicaid, again because of the massive costs of doctors, surgeries, therapies and medications. No typical American family can afford a special needs child. And yet, we all want to do everything we can to keep our kids healthy.

Medicaid comes from the state and coverage varies greatly, depending on where you live. But the states get money from the Fed to help with this. So how long does this shut-down drag on before my child’s services are cut?

I know Federal workers are hurting. It is shameful to ask these hard-working people to show up every day as their bills pile up. But they aren’t the only ones. A lot of people in this country are suffering for a political stunt. And some of those are vulnerable children.

My election day story

All my life I’ve been a blue girl in a red state. I’m used to not having my candidate win. Like ever. I’m down with it. Nevertheless, she persists.

I am fortunate that our schools close on election day, which means I’m off and so are my children. A little mini-holiday mid-week is always welcome. So after I cast my ballot full of candidates who will not win, I take my little guy out to celebrate the fact that I am allowed to be a voice of dissent, even if no one around me listens. I’m feeling all Mighty Girl and #metooish.

We head to a local, spacious breakfast place that is wheelchair friendly. We order and await our pancakes.

While I am playing with N and reading the children’s menu to him a group of old white men are seated next to us. They have obviously just come from the polls as well, as they are discussing the election.

“Wouldn’t it be something if Pelosi lost her seat?” they guffaw. “Lord, wouldn’t that put liberals in their place?”

They obviously haven’t heard there is a blue wave coming. But then, the blue wave isn’t coming to South Carolina. Not any time soon.

While I eat my meal and coax N to feed himself (because he can but he doesn’t like to when Mama’s around), I think about how I just voted in hopes of a better future for him. In hopes of not having to be afraid he will lose his healthcare, or that he will be mocked by someone as senior as the president himself.

At the next table over, I hear one man tell a joke that would once have been considered old Southern humor, but today would be judged as racist. And yet, in the next breath he clearly speaks of an African American pastor whom he once served with, and it is obvious he deeply respected this man. He doesn’t get it, I think.

Between coffee refills, I judge these men in my mind.

I’ll bet they want to cut Medicaid to my sweet boy here, I think. I’ll bet they think that they shouldn’t pay taxes for education since they have no kids in school. (Money that pays my salary). I’ll bet they support the bullying, fear-mongering president we have in office who mocked a disabled person and justifies putting kids in cages.

They are probably judging us as well. “Bet that kid costs the taxpayers a bundle.” (They do not say this. This is what I think they might say.)

I give N a napkin to wipe his mouth and take a last gulp of lukewarm coffee. I look for my bill. Wasn’t it there a minute ago?

But as I stand to see if it dropped to the floor, the man who had made the joke addresses me.

“Miss,” he says. “I hope you don’t find this offensive, but I asked the waitress to bring me your bill.”

I am not good in surprise situations. I stand there like a deer in headlights.

Finally, “Oh no, that isn’t necessary. I’ve got it,” I say. Fake smile.

But his eyes meet mine and I realize that though we have different world views, he is not the monster I created.

I think all kinds of things right then. Does he feel sorry for me? Does he think I’d bring my kid to a restaurant I couldn’t afford? Does he think I’m a snowflake who can’t pay my bills?

Then he just says, “Please. I just need to do something kind today and you looked to me like a good person.”

All this time I was judging him, he thought I looked like a good person?

“Thank you,” I say. “God bless you.”

I tell N to wave and he flashes the man one of his million dollar smiles. I go home feeling humbled.

If we all stopped listening to the propaganda coming from both sides. If we stopped making assumptions about what “the other side” thinks. If we just did something kind for someone else each day for no reason at all. If we did that, we would still have disagreements and different world views, but our country would not be in danger. And we would once again be a nation indivisible.

When a simple dinner out isn’t.

If you are a special needs mom you know, success is 95% planning and 5% luck. I have never been particularly good at the former but I am being trained by my now 4 year old.

My older son turned 14 the other day. His dad was out of town so we were not having a big celebration that weekend but it was his birthday and I wanted him to at least be able to pick what we were having for dinner. He picked an Italian joint owned by a guy from New York who makes the most amazing pizza.

The thing about this restaurant though is, it’s a nice place– white table clothes, Frank Sinatra’s music, etc. Usually our modus operindi is to pick up a couple of pies on Friday night and eat at home, cause white table cloths aren’t really compatible with our current lifestyle. But V specifically says, “But I want to go in and actually eat there.”

So I pick the boys up from school and head down to the restaurant– which at this time of day is a 30 minute drive due to the 4,000 other cars on Pelham Road at 5:30. That’s when I realize that the handicapped placard is in the car with my husband in another state.

At this point, I normally would have gone home and called for delivery. But it was V’s birthday.

But it’s more than that. See special needs parents also suffer a special guilt regarding their less needy children. Everything in our lives is always about N. His doctor appointments, his therapies, keeping by his schedule. Family vacations that end up with a trip to the ER. My older son has never expressed resentment toward his younger brother, but I have noticed clenched teeth a time or two when we couldn’t do something because of N. So I was determined to go through with the white table cloth pizza dinner.

The parking lot is packed. I circle a few times because without the handicapped sign I need a spot on the far left so that I can make sure no one parks too close and keeps me from being able to get the wheelchair in. ( By the way, I have had to do this several times when I DID have the handicapped sign because selfish people without one decided it would be ok to park in the blue spaces. It is not ok. For us, it is less about being close to the door and more about safety.)

I pull to the far right of the space, get out the wheelchair and line it up with N’s car seat and make the transfer. Then we have to navigate the busy parking lot to find a place without curb so that we can get up on to the sidewalk.

Even though we make it inside before dating hour, the restaurant is busy and N does not want to wait. He keeps taking the brake off his wheelchair and attempts to maneuver around the waiting area coming far too close to the hostesses feet. I’m trying to hold on to the handle and he starts protesting loudly. ( My son doesn’t speak, but he makes his desires known).

My older son, who suffers from anxiety, is paceing in circles, which takes up even more space.

A family comes in and a little girl, younger than N, points at him and proclaims, “Baby!” The mom looks embarrassed and hustles her away. I want to tell her not to be embarrassed. The kid doesn’t know better. I want to introduce the kid and mom to my son to show them not to be nervous around people in wheelchairs, but I don’t. There is a time for advocacy and a time to just be with my family. I decide this is the latter.

We are finally ushered to a table and order drinks. But the food is a long time coming. I pull out teddy grahams and feed N olives off my salad but he is hungry and is making loud noises. When his food comes he offers an excited “mmm!” And even though he knows how to hold a spoon speghetti noodles are difficult so I cut them up and spoon them into his mouth. V is contentedly tearing into his pizza.

So I did it. I got us to the birthday choice and everyone is eating, except me. Every time I start in on mine, N takes my hand and puts the spoon in it. I am not fast enough.

V starts to tell me something funny he saw online. It is not easy to engage my teenage boy in conversation so I focus on him and try to keep it going. Then I realize N has started grabbing noodles and shoveling them into his mouth with his fist. They are all over his face, the floor, etc.

I wipe his face and offer his some water in the styrofoam kids cup they brought him. I hold the straw to his mouth while I tabulate the tip and sign the bill.

N starts to make a loud shouting sound. “Hush, hon. We’ll be done soon.” He keeps on. When I gather our things to go I realize he straw has gone through the styrofoam and N, his wheelchair, and the surrounding area are covered in a pool of water. Well, he tried to tell me. I think about going back and adding on more tip as I assess the huge mess we have left, but my main instinct is to get out of there as quickly as possible.

Too bad you can’t get wine in a to go cup.

Technology hacks that keep me sane as a special needs mom

And they probably help lots of working mothers.

  • Grocery pickup/delivery: N actually likes shopping, seeing new things, watching people, but when I pick him up from day care at 5:30 he’s usually done for the day. Also my back problems are making it an increasing chore to get him in and out more than necessary. So now I can go online, order my groceries, and pick the up for free on my way home from work. So far I have picked up from Walmart about 5 times. They have always gotten it right and have it ready when I arrive. Downsides are that you can’t get hot items, such as rotisserie chickens, not all Walmart’s participate and at least with ours you usually have to schedule the night before. So if I don’t have it that together the night before, I also have the option of grocery delivery. I have used Publix three or four times. You do pay extra for this service– a percentage of your bill plus optional tip, but some weeks it’s totally worth it. I haven’t always been happy with my meat, but that’s the only complaint I have.
  • Restaurant delivery: Oh the olden days (2016) when the only food I could get delivered was pizza or Chinese. Today I can choose from 40 local restaurants on my BiteSquad app and tell it what time I want the food to arrive. In Greenville, in addition to BiteSquad, we also have GrubHub and Waitr, which expand my choices but I haven’t tried them yet. With BiteSquad you pay between $2-5 delivery fee (plus optional tip) depending on how far the restaurant is from your home. You can watch the progress on your phone– is my order received, cooking, being delivered, etc with an ETA that is usually pessimistic if not accurate. One time during a snow day the restaurant I ordered from had failed to take itself offline, but a rep from BiteSquad called me herself to apologize and gave me a full refund. It is so great to come home from a long day at work and someone else has put dinner on the table.
  • Facebook groups: Yes, I know Facebooks image is somewhat tarnished right now and there are times when I have to take a break from all the political banter. But I won’t stay away long because of the numerous online friendships I have with other parents in my situation. I am in groups for my children’s schools, for a local group to help special needs families of all stripes, and a parent group for kids with Ns condition that has moms from all over the world. If this had happened 10 years ago, I would probably only have met 1 or 2 boys with L1Cam as the condition is so rare. But thanks to my group I can see about 100 boys at different stages, ask advice from more experienced moms and offer support to those newly diagnosed. We even hand down equipment to each other and provide meals when someone is in the hospital. The group is truly a blessing to me.
  • Phone calendar: With all the doctor appointments going on I would truly be lost without my digital calendar and doctors offices that send me text reminders.

These are some of the things that keep me sane. I’d love to hear some new ideas from you!

Two steps forward, one step back

N turned 4 this week. It is amazing to think back on how much he has accomplished. He’s gone from not being able to eat or keep food down to holding his own spoon and cup and weighing in the 26th percentile for his age. He’s gone from not holding up his head to crawling. But not walking.

He wants to walk. He tries so hard and laughs when we put his braces on because he knows he’s going to get to be upright. But progress on this front has been minimal.

Two days before his birthday we got some indication why. One of his hips is 65 percent dislocated. This is apparently pretty common in children with cerebral palsy because there is so little muscle tone to hold things in place and the bones don’t grow properly if they aren’t upright often enough. This might explain why when we stand him up he always leans heavily to one side.

And this is what to me is one of the hardest things about being a special needs parent: that progress is not always permanent. Typical children learn to walk one day, the next day there is no stopping them. N might learn something one day, then the next day it is gone. Being in a cast from the waist down for a month will mean loss of muscle tone and muscle memory and all those things he struggles so hard every day to gain. It took him three years to crawl. Will he forget in one month?

Yes, I know that there is a chance that correcting his hip may allow him to finally balance and learn to take those first steps. But no one sounds too encouraging on that front. This past week when I’ve been doing this exercises with him I feel myself thinking in the back of my mind, “What’s the point? Why teach him this when he will have to sit still for a month and lose it all?”

The other thing that is so difficult is this: you are always waiting for the next bad news. The first year of N’s life was like being adrift at sea. Each time we thought we had our heads above water a new wave of bad news would knock us down. We were just surviving. We have been fortunate enough to have three years of relatively smooth sailing. But even when things were good and progressing, underneath the surface we were holding our breath, waiting for the next thing that would send us to the hospital. And here it is.

But this is the way to do it. It is not an emergency. As our husband and I are both educators, and he doesn’t seem to have any pain, we are able to schedule the surgery for this summer. We will be prepared with our plans in place and our medical and educational team on board. This will not be like that first year when we did not know what we were facing and felt so helpless to protect this fragile little creature who was suddenly in our charge. This is what I keep telling myself.

I know my son now. I know his likes, dislikes. I know what motivates him, what comforts him. And most of all, I know how strong he is. And that is what keeps me strong for him.