— 1 —
Last week I was hunting for recipes to use for my sister Treasa’s belated birthday cake.
I ended up coming across this recipe
, which I will definitely make again. I tried this recipe for strawberry frosting
, though I didn’t follow it closely. I got so excited about using my immersion blender to puree the strawberries that I used way too much puree and the frosting was runny. But it was quite decadent and also attractive.
Because our sons would rather look at a cake than eat it, we always decorate our cakes. Aunt Treasa likes cows, and her nephews were adamant that this had to be a cow cake. Because she was coming to dinner on the night of the Preakness, I suggested that we blend the two themes. The boys loved the idea of a racetrack cake, but I only realized later that was because they thought cars would be involved. So they were—until the boys took them off to play with them.
The best part was the edible racetrack. I am not a great baker, but I am happy to have an excuse to put crushed graham crackers on top of a frosted cake. No one here likes graham crackers much until they are crushed and placed on top of a cake. We used a bag of SpongeBob graham crackers that was going stale, and now they’re gone. More room in the pantry!
(Oh, and did anyone notice that the horse our sons picked
came in second?)
— 2 —
I don’t like cell phones.
I don’t like that everyone is expected to be reachable all the time. I don’t like that they give people license to be late. I carry a cheap pay-as-you-go phone because I feel I have to have a phone, but I don’t pretend to be happy about it. However, I really did rely on my cell phone on Monday when our car broke down
. So then why, oh why, have I managed to forget my cell phone not once—but twice—this week? Last night as we were driving home in the rain, running low on fuel, I realized that if we emptied the tank, we could be stranded for a long time without a phone. So we stopped.
As I was pumping gas, I glanced through the window at the boys, and I could see Leo trying to say something.
“I can’t hear you!” I called back. “I’ll just be a minute!”
I could see him yelling back at me, getting more and more frustrated.
Oh, dear, I thought. He must really need something. In this day of amazing technology, however, I was stuck at a pump that you have to hold the whole time you’re pumping.
When I finally climbed into the car, Leo told me why he was upset. He wanted me to focus on getting gas so we wouldn’t break down. So he was yelling, “Don’t look at us, Mama!”
That’s a communication problem that cell phones wouldn’t fix.
— 3 —
Our daily commute is long, and every week the traffic seems to get heavier. We have decided to put our house on the market so we can drive less and spend more time outside the car. Meanwhile, I am not as worried about selling the house as showing the house. How do people sell houses? Do you keep a laundry basket in each room and throw everything into it and then into the car? Do you hire a daily maid service? Give away all your belongings? Only use disposable dishes? Any and all tips are welcome.
This week John has been cleaning our bedroom, so he and I have been camping out in the boys’ rooms. They think this is great fun.
It reminds me of how when I was a child, during one family vacation we stayed at the “Hopkins Hotel.” It was actually our house on Hopkins Road and we all swapped beds each night in between day trips. Without question, it was the best family vacation we ever took. I’m looking forward to getting back to our bed, but I’m also reminding myself that we’re making memories with our boys.
— 4 —
This week in the adoption world there was talk of how adoptive families were among the groups targeted by the IRS for audits last year.
We were among the many adoptive families who had to jump through the extra paperwork hoops. It was frustrating, but adoptive families are used to hassle and paperwork. The fact that they asked us to provide the exact same information we had already provided, while holding onto our refund because they could, just felt like part of the routine. However, we were fortunate that we had not had to borrow money for our adoption fees. For many families this was not just a hassle, but a costly problem. Our government should be helping children join families, not standing in the way.
— 5 —
When I told John, he sounded happy but surprised. That’s how I feel. It almost doesn’t make sense to receive an award for something I enjoy so much. I’m so fortunate to have the opportunity to write about my family and our faith and adoption and connect with people who share those interests.
Isn’t it extraordinary that anyone would actually read what I write and respond? So thank you.
An award is just frosting on the cake—but probably not strawberry frosting.
— 6 —
When we arrived home after our long commute last Friday, we discovered that John had just painted our door. Leo and Daniel were curious and full of questions. So I took a photo of Daniel—and his brother’s dragon pillow—in front of it. Isn’t the door beautiful? Who wouldn’t want to buy a house with such an attractive door? It even matches the kitchen walls. And isn't it unbelievable how easy it is for me to get photos that don't show my sons' faces?
— 7 —
In my full-time job I write stories for Loyola University Maryland, and we just published this story this week.
It reminded me of the sacrifices soldiers make for our country—and for each of us—every day. I hope you’ll join me this Memorial Day weekend in prayer for this soldier, whose life has changed so drastically, and for all those who have served our country, especially those who have given their lives.
May 24, 2013 09:35
By Rita Buettner
When I realized Leo’s Pre-K class was planning a field trip to the zoo and his younger brother's class wouldn’t be going, I wondered whether Daniel would be upset. But he didn’t seem to care.
I tried not to mention it too often, but when it came up, I made sure Daniel understood this was a school trip just for Leo’s class. Every time we mentioned it, Daniel acted totally indifferent.
Then during breakfast the other day Leo made his grand announcement.
“We got to pick our lunch for the zoo,” he said, “and I am going to get a hot dog.”
That’s when the tears started to flow.
“Can I go to the zoo?” his little brother asked between sobs. “I want a hot dog!”
I assured him we would take another family trip to the zoo sometime soon and have a fantastic time.
He kept crying.
“We can have hot dogs for dinner,” I said.
Moments later, the tears were gone.
Later at school, Daniel waved happily from the window as we boarded the bus to go to the zoo.
I took pictures to share with Daniel, just in case he wanted to see what his big brother was talking about.
But that evening Daniel didn’t care about the rhinos or the warthogs or the baby monkey or the sleeping lioness.
He didn’t join us as we talked about how God had made so many different kinds of animals. Who but God would give a zebra his stripes? Or an elephant her nose and tusks? Who else could create enormous, dozing polar bears?
If Daniel was curious about the animals we saw—and what else he missed during his big brother’s field trip—he didn’t say a word.
Our 3-year-old was too busy eating his hot dog.
It wasn’t our finest hour nutritionally. But if a package of hot dogs is all it takes to help a little brother not feel left out of a field trip, you’ll find me breaking my rule of only going to the grocery store once a week. As a third child of six, I know it won’t always be that easy. And life will be packed with disappointments that I can’t—or won’t—prevent. This was an easy one.
By the way, if you ask Leo what he enjoyed most at the zoo, he’ll tell you it was this baby colobus monkey
, though he calls it "the baby lemur."
But I was there.
And I can tell you the biggest smiles of the day came when he was sinking his teeth into his very own hot dog.
May 23, 2013 09:43
By Rita Buettner
— 1 —
On Mother’s Day morning Leo and I went to Mass together. When we got home, he asked for paper and scissors and cut out a heart for me. Then his little brother had to do it, too, though he needed a bit more help. Those cut-out hearts, along with the sweet hugs they gave me unprompted during the day, mean more to me than any gift I can imagine.
— 2 —
We missed my sister Treasa’s birthday party last weekend because our household was under quarantine (not literally, but close enough), so we’re making her a birthday cake this weekend. I’m trying to decide what kind of cake to make. Do you have a really delicious, not too complicated, non-chocolate cake recipe you’d be willing to share? It can be any flavor that isn’t chocolate. It just needs to be something I can frost because my sons and I have a vision for how we are going to decorate it. And they also don’t believe in unfrosted cake since all they're planning to eat is the frosting.
— 3 —
I’m almost absurdly excited for Saturday evening.
Treasa, a friend, and I are going to a Bingo to raise funds for Teresa
, who is awaiting a heart transplant. I had no idea how many extra costs are not covered by insurance, and her family is bracing itself for the financial impact when her transplant occurs—and they are hoping that will be soon. If you live near Catonsville, Md., and are free Saturday evening, maybe you’ll join us for what is sure to be a fun evening! You can learn more here
— 4 —
I enjoyed this piece trying to spark a revival of the name Mary.
Don’t you love talking about names? My name was my grandmother’s name, and our—and St. Rita’s—feast day is next week, on May 22. I have always loved sharing a name with my grandmother. Here is a photo of her holding me at my baptism in Loyola University Maryland’s Alumni Memorial Chapel. (That’s Rev. William M.J. Driscoll, S.J., baptizing me.)
— 5 —
I had decided to watch The Little Couple every Tuesday night to watch their journey to adopt their son from China, and I haven’t managed to remember to watch it since the premiere.
So I’ve missed at least two episodes. I have decided that maybe I’m just not good at fitting TV into my life. One of my friends tells me this is why I need to figure out how to work our DVR.
— 6 —
Our sons have become obsessed with Chitty Chitty Bang Bang. I was afraid to introduce it to them because of the child catcher. I remember being petrified of this man with a long crooked nose who went around snatching children. But when we watched the movie with the boys, he was such a minor character, and the boys seemed unimpressed.
Our boys love all the music of the movie, everything Chitty Chitty Bang Bang does, and especially all the dancing. Watching two mini-Dick Van Dykes dance around the room has been a highlight of our week, whether the boys are using light sabers or flyswatters or butterfly nets as they perform “Me Ole Bamboo.”
— 7 —
On our way out of Mass on Sunday Leo and I noticed this sign for the first time.
We have been attending separate Masses on Sundays because of behavior concerns for the youngest member of our family. But maybe I should take it as a sign that we should try attending Mass as a family again.
Read more quick takes at Jen's blog. Have a great weekend!
May 17, 2013 07:20
By Rita Buettner
The Grandstand? The Infield?
No, thank you.
We’re content hanging out in the parking lot two days before the race. We can see the horses and feel as if we’re part of the whole horse racing excitement. There are no crowds, and the price is perfect.
This morning the boys and I made our second annual trip to Pimlico, where we watched the horses trot around the track for their morning exercise.
Sure, going to an actual race would be exciting. And maybe one day we will. But at 3 and 5, our boys are just as content to watch the horses walk or canter or gallop past. We only spend 10 or 15 minutes there, but that’s perfect for their attention spans and we leave happy.
Last night we sat down and read through the horses’ names to pick one of the nine horses to cheer for on Saturday. Both boys settled on the same one, Horse No. 9, It’s My Lucky Day. He does have a good name.
We found his photo online, and he is very handsome—brown and black and sleek. Then this morning the boys clung to the chain-link fence, looking for him at the track.
“Is that my horse?” Leo asked as each one ran past.
“No, that one has a white stripe on his nose. I don’t think yours had any white on his face,” I’d say. “Maybe he’s that one there, though. I’m not sure.”
After a while, Leo picked up on the fact that his mother is no horse expert and that I had no idea which horse was which. So he started calling out hello to the jockeys instead. Most of them cheerfully called back, “Good morning,” and waved.
There were crumpled potato chip bags at our feet, the fence was rusty, and the security guard yelled at me not to take pictures (these pictures of the boys are from last year), but we didn’t care. One of the best things about preschoolers is that they can enjoy themselves almost anywhere.
Back in the car, as we were driving down Northern Parkway, I said, “You know, I’ve never been to the actual race.” Yes, Baltimore born and bred though I am, I’ve never actually attended Preakness.
“Why not?” Leo asked.
“Well, first you have to pay for a ticket,” I said.
“Yes, Mama,” Leo said, “and Baba told me why it costs so much.”
“He did?” I was surprised that John had even thought to discuss Preakness tickets with my son. I have never priced them and have no idea what they cost—and I bet John doesn’t either.
“Yes, because everyone wants to go and there aren’t a lot of seats,” Leo said. “So when a lot of people want something, it costs more.”
“Oh, yes,” I said, still a little surprised. “That is true.”
Well, our seats weren’t in demand this morning. But they were just perfect for us.
It was, after all, our lucky day.
For more ambitious families with longer attention spans, Pimlico actually offers free first come, first serve Sunrise at Old Hilltop tours of Pimlico during Preakness Week. Learn more here.
May 16, 2013 12:45
By Rita Buettner
During our commute home last night, Daniel spotted an almost empty bottle in the car—leftover from days ago. He had to have it.
I don’t know what can happen if you drink something that’s been sitting in the car for days, but I'd rather skip it. And I told him so.
Daniel got very upset. He couldn’t move on, and he cried the rest of the way home.
Now, there are mothers who would sensibly have cleaned out the car after getting home, but I forgot. So the same bottle was still there when we began today’s commute.
“Mama, I want my drink,” came Daniel’s voice from the back seat.
I calmly explained that he couldn’t have it.
“Noooooo!” he said.
I took a deep breath and prepared for another argument. Then I heard his big brother’s voice.
“Little Angry Bird,” said Leo, and I realized he was talking to the stuffed bird in Daniel’s hands. “Are you thirsty?”
Daniel stopped whining.
And then I heard a very different voice coming from his mouth—the voice he uses when he’s pretending to be a baby bird.
“Yes,” he said in his sweet little voice.
“Well,” said Leo, using his own stuffed animal voice. “Here is a special drink for you—just for a baby bird.”
Leo’s bird handed Daniel’s bird an invisible drink. He drank it. The birds started playing together. And we had a pleasant drive to school.
Now I could have tried that. And I do need to remember to appeal to the boys’ imaginations more often. But even if I had, I’m not sure I could have sold Daniel on the idea. There’s something special about a big brother’s suggestion. Unless he’s deciding which of them gets the bigger treat, Leo’s ideas are always the best.
Do these boys argue? Of course.
They’re children. They’re brothers. They’re human.
But they truly enjoy each other’s company. When they get upset with each other, the empty threat is always “If you don’t do what I want, I’m never going to play with you again!” The most extreme punishment we have around here is making them sleep in separate bedrooms.
They have a special friendship—one that has far surpassed the hopes we had when they met a little less than two years ago. If you had told me then
that I would be worrying about how they’d transition to spending time apart when Leo begins kindergarten, I would have thought you were talking about a different family.
But here we are.
Tonight a happy, laughing—and not all that thirsty—Daniel had long forgotten that drink in the car. He was too busy dancing through the house with his brother as they waved flyswatters around and sang, “Me ole bamboo, me ole bamboo
,” from Chitty Chitty Bang Bang
And even though I’ve made six trips to the car tonight to bring in groceries, stuffed animals, and discarded clothing, it’s only now that I realize that yet again I have forgotten that bottle.
I could go get it. Or I could wait and see what Leo has up his sleeve tomorrow.
What parenting lessons have your children taught you?
May 14, 2013 11:12
By Rita Buettner
— 1 —
When we enrolled the boys in preschool, I was surprised to discover just how much the teachers genuinely cared about our children. They share stories about our sons with me, celebrate their successes, offer advice, and don’t roll their eyes when I ask them not to tell my son to stop sucking his thumb.
So for Teacher Appreciation Week I was determined to celebrate them. On Wednesday I was ready to deliver baked goods when we discovered we were taking a sick day instead
. By Thursday morning the baked goods were no longer intact.
So I went to the dollar store, bought floral flyswatters for each of the teachers, wrote a poem to tie to the handles, and spent last night getting them ready.
Then Leo got sick, and we found ourselves missing yet another school day on Friday.
Fortunately the gifts won't get stale before next week. The boys are so excited to give them to their teachers, which was part of the appeal to me. I like it when our children are giving gifts they are excited to give
As you can probably tell, this gift idea didn’t come from Pinterest. This was the idea of a desperate mother who believes people can always use more flyswatters and poetry.
— 2 —
Ah, Mother’s Day, the one day of the year when John makes sure I don’t have to cook dinner. But it’s not all about me, or even my mother, grandmothers, and friends and family who are mothers.
You see, there are two mothers on the other side of the world who have been on my mind especially this week. There are also women who took care of our sons while they were in China, and they mothered our sons until we could hold them in our arms.
One of them was our older son’s foster mother, a truly amazing woman who loved him with a love as deep as any mother’s. She gave him the tremendous gift of knowing what it was to be loved, and to be part of a family. We send her photos of Leo from time to time, and the last time we received photos of her looking at his pictures. Look at this one of her waving to our son from thousands of miles away.
I'm honored to share Mother's Day with so many amazing women.
— 3 —
Leo's teacher asked him questions about me for Mother’s Day. He got everything just right except for my age, which he overshot by…well…not that much, actually:
— 4 —
Today is my sister Treasa’s birthday and also her half-anniversary.
It’s hard to believe the newlyweds have been married six months. While I work on baking and decorating the cake for her party tomorrow, with the help of two rather ambitious junior chefs, why don't you relax and watch their amazing first dance?
— 5 —
One of the many reasons we were excited about Treasa marrying George was that George’s brother is a Baltimore City firefighter. He generously invited the boys to come see his fire station last weekend, and they were almost as curious about everything as I was.
Did you know firefighters still slide down poles? And they use the same bell the station used in 1907 to wake them up for a fire? I had no idea. Daniel keeps asking to go back just to see “the man slide down the pole.”
We didn't let the boys use the pole. They had to take the stairs.
— 6 —
I had heard that the Walters Art Museum had placed reproductions of paintings around Baltimore, and we saw our first one when we stopped at a playground this week.
You can see it made quite an impression on Leo.
— 7 —
If you missed the touching guest post my friend Laura wrote for my blog earlier this week, 10 things a special-needs mom learned (the hard way), take a few minutes to read it.
It’s a powerful piece—and I’m not the only one who thinks so. I'm so excited to see all the visitors who have stopped by to read Laura's post!
Happy Mother's Day to all the mothers reading. If you're waiting to become a mother or you're not able to be with your mother this weekend, please know that I'll be keeping you in my prayers.
May 10, 2013 04:03
By Rita Buettner
If I had posted Facebook statuses throughout my day yesterday, it might have sounded rather miserable. But when I look at it with a half-full approach, I realize it was actually a perfectly fine day.
Bad: Our son got sick in the car on the way to school.
He told me ahead of time and managed to vomit into a bag. I am in no hurry for our 3-year-old to learn to read, but these are valuable life skills. (And, no, I don’t know where my cakesaver
Bad: The traffic on our morning commute was horrible.
Good: We hadn’t gone too far when we had to turn around to go home.
Bad: I couldn’t deliver the baked goods we had planned to take for Teacher Appreciation Week.
Good: I didn’t deliver my sons to school only for the teachers to have to clean up a mess—or be vomited on. The teachers may not feel appreciated, but I’m sure they will appreciate that the sickness was discovered before we arrived.
Bad: I couldn’t get an appointment to see the pediatrician until almost noon.
Good: Because the appointment was at mid-day, my husband was able to meet us and spend time with our older son so I didn’t have both boys running around the pediatrician’s office. We got to see him and spend time together on a playground before he went back to work.
Bad: We’re dealing with yet another ear infection. Ugh.
Good: They’re just ear infections. They get cured. We are blessed beyond measure to have two healthy children.
Bad: We ate lunch late and the boys were overtired.
Good: When they finally fell asleep for naps, they slept for more than two hours.
Bad: I had to take an unscheduled day off from work.
Good: If I had to miss a day, it was the best day for me to miss all week. And despite the illness, everyone was well enough to enjoy spending time together.
It’s all a matter of perspective. For some reason yesterday I kept noticing the bullets we had dodged, or how the situation could have been more difficult. It makes me realize how often God must be in the details, and yet I fail to notice Him there.
Some days maybe it’s not a question of whether the glass is half-empty or half-full, but just recognizing how great it is that no one dropped and shattered the glass on the floor during breakfast.
You have to admit, that is pretty fantastic. After all, that could easily happen tomorrow.
Is your glass half-full or half-empty today?
May 09, 2013 01:41
By Rita Buettner
Last night as the boys and I were driving home, we passed a burning pickup truck. The front was completely engulfed in flames.
“Mama,” Leo said, “if that happens to our car, I won’t worry about stepping on things on the floor. I will just get out of the car.”
Our 5-year-old has learned about fire safety at preschool and toured a Baltimore City fire station on Sunday. So he knows what to do when there’s a fire.
“Yes, that probably won’t happen,” I said. “But if it does, we won’t take anything with us. We’ll just get out.”
“But we’ll take our sleeping friends with us,” Leo said. “We’d have to have our sleeping friends.”
I started to explain that in a fire you don’t even stop to get your stuffed animals. And that’s when it hit me. I realized we had left Leo’s favorite pal, the Cat in the Hat
, not in a burning car, but at preschool.
I took a deep breath and broke the news.
“Turn around,” Leo said simply. “Go back.”
I have done that before when the Cat was left at Grandma and Grandpa’s, but I don’t have a key to the school, and it was closed.
“I want my Cat in the Hat,” Leo whimpered.
I tried empathy—“You really miss your Cat”—and logic—“We’ll see the Cat tomorrow”—and tried to make it sound like fun—“The Cat’s camping out at school tonight!”
So I told him a story from my childhood. I described driving all the way to Massachusetts with my family. On the way home we realized we had forgotten my doll, Beansie, at our friends’ house in Massachusetts.
I had to wait for days while our friends boxed Beansie up and shipped her home. Opening that box and seeing her again was one of the best moments ever, I told Leo and Daniel.
And it would be just as wonderful as that in the morning when we pulled the Cat out of Leo’s cubby.
Leo didn’t want his Cat in the Hat in the morning. He wanted him now.
When we got home, all I could offer was the replacement Cat I bought months ago when I realized his stuffed friend was deteriorating.
Leo had met the clean replacement, and he’s unimpressed. It sits on a shelf, unloved and forgotten. Our son likes his limp, bedraggled Cat.
But last night he had no choice. He took the alternate to bed.
Then he astonished me by falling asleep without any trouble and sleeping all night long.
At 6:30 this morning when I went in to get the boys out of bed, Leo said, “Mama, this replacement Cat in the Hat is not working.”
“Really?” I said, looking at the beautiful, plush Cat lying next to our older son.
“No,” he said. “His tie is not long enough.”
Maybe not. But John and I got a full night’s sleep, one I wasn’t expecting when I realized we had forgotten Leo’s beloved stuffed friend at school. So that replacement Cat sure worked for me.
In the back of my mind, I can hear a little voice saying that maybe, just maybe, our little boy doesn’t need his Cat in the Hat the way he used to.
Maybe he is growing up and away from needing a sleeping friend.
But you can bet I don’t plan to forget the Cat again anytime soon.
May 07, 2013 10:12
By Rita Buettner
Laura Hatcher and her husband, Brian, have two children, Olivia, 10, and Simon, 7, and are parishioners at Church of the Nativity in Timonium, Md. As we look ahead to Mother’s Day, I invited her to write a guest blog sharing how raising Simon, who has cerebral palsy, epilepsy, and hydrocephalus, has changed her perspective as a mother. Thank you, Laura, for sharing your family’s story with us.
A few weeks before our second child was due we learned that our baby had "something seriously wrong" with his brain. In that moment I went from being a mom to being a special needs mother.
For me, becoming a special needs mother was a metamorphosis. From that moment to today, I have turned into a completely different person, as the lucky parent of a superhero child with challenges—and his amazing big sister. My priorities changed, my perspective on the outside world changed, and my hopes for the future have changed.
This was not an easy transition, and I really don't wish it on anyone. However, although every special needs mom I know would give anything to heal her child, I don't know one that would choose to go back to the person she was before experiencing special needs motherhood.
Because it's true that what doesn't kill you makes you stronger. It is also true that experience is the best teacher, and the experiences that come with parenting an extra-challenged kid can be intense, impactful, and inspiring. You learn fast because you have to. You filter out what is really important because you just don't have space for the other stuff. You find new ways to deal with stress and uncertainty and being overwhelmed, feelings certainly shared by all parents, because for you they are a constant. And, you learn how to see the rainbows on cloudy days, celebrate the small stuff, and find strength you did not know you had.
Here are 10 things I’ve learned as a special needs mom:
1. Give up the guilt.
Special needs parents elevate parental guilt to an art form. We cannot help but burn to know why our children suffer, and we constantly question if we are doing enough to help them. We interrogate the professionals, we yell at God (it's okay, God is big and can take it), and we wonder what we could have done to make bad things happen to our innocent babies. For many of us, it is a question that can never be answered. And for those of us that do know the reason (or think we do), knowing doesn't change the outcome one bit.
My son had a stroke in utero that led to myriad complications. But one of the most unnecessary complications was my deep-rooted fear that somehow what had happened to my baby during my healthy, uneventful pregnancy was my fault. Though many doctors have done many tests, and though I repeatedly asked what I could have done to cause the stroke, there have been no answers. Sometimes, said my OB, these things “just happen.”
That was an answer I found very hard to accept, and it took me years to realize what focusing on it was costing me. Spending so much time in that backwards-thinking headspace robbed me of the ability to be present or to truly move forward. It wasn’t until I stopped fixating on the "why" that I could finally fully focus on the amazing kid in front of me.
2. A little compassion goes a very, very long way.
When I am having a rough time, even a small kindness can give me the encouragement I need to keep going. A stranger sees my melting-down kid and lets me go in front of him in the check-out line (with an understanding smile). I'm anxiety ridden and vent on Facebook that I could use some cookies, and they appear (still warm) on my doorstep an hour later with a note that says my family is loved. A hospital tech doing a blood draw on my frightened young son takes her time with us and gives him a toy car from a stash she bought with her own money. A teacher has coffee with me on the weekend to brainstorm about how to make things better for my child. The school bus driver carries my son into the house because it is raining. A friend makes me dinner. A doctor discharges us quickly from the hospital because she has an autistic son and knows how important it is to get home soon....
I keep these kindnesses (and many others) like pearls on a necklace that I can take out and hold when the going is tough. Remember that some disabilities are invisible, that heartache can't be bandaged, and that we are all fighting a hard battle. Be kind whenever you can, and know how much even the smallest act can glow for a person through the gloom.
3. You're going to worry (a lot). So learn to do it constructively.
Part of parenthood is worry, and it is fair to say that the worrying is compounded exponentially when you have a child who is chronically ill, or has a disability. You hold onto hope, you try to focus on the positive, you tell yourself to stop worrying so much, maybe you even get some professional help. But—let's be real here—not worrying is just not going to happen.
So, learn to focus all that negative worry-energy into positive action. I first try to do everything I can to learn about it. Then, I make lists (lots of them) full of things to DO—places to learn more, people to talk to, plans of action to create and implement.
For example, a little over a year ago I was terrified that my little guy would have a dangerous seizure in his sleep. I worried about this so much that I didn't sleep. So, I used some of this sleepless worry time to research and quickly found out that there aren't any FDA-approved seizure detection devices (shocking, I KNOW!). More research led to phone calls which led learning about seizure-response service dogs, and through continued conversations with doctors, nurses, and engineering students, I discovered that a pulse oximeter worn to bed would let us know if Simon was having a seizure or was in distress. This system—combined with a video monitor—works like a charm and now I can sleep (most) nights.
4. You can choose to not be alone.
When you feel small and frightened, do what you did when you were small and frightened. Reach out your hand for someone to hold.
Your spouse is called your partner for a reason. That friend who offered to help, she means it. Your family wants to be bothered. It is what families do for each other. The truth is that many good people would love to help you, they just don't know how because you haven't told them yet.
When I first decided to pursue getting a service dog for our son, I was simultaneously overwhelmed by the cost and excited at the prospect of what a dog could do for our son—and our family. As soon as I started telling people about it, they literally jumped at the chance to help us. Without my ever asking, the money for the dog was raised by people who knew and loved us, as well as people who had never met us but were inspired by our story. A year later I am still getting letters from people inspired to do good things (like hold fundraisers for children's hospitals, epilepsy research, and service dogs) in my son's name.
5. Recognize that sometimes it IS all about you.
In order to be a healthy parent you literally have to be a healthy parent. We special needs parents know we have to live forever in order to take care of our kids, and you can't do that if you don't take care of yourself. Find things that you can do to take care of yourself, just for yourself, to stay or get healthy and sane. I go to power yoga and I get my nails done. You figure out what works for you and then keep doing it because you need it, like oxygen.
6. Be present. Now. Didn't work? That's okay. You can try again. Now.
Now is what matters. It is what you can impact. It is what the past and the future are made of. To those of us that have spent time in the NICU and the PICU and have seen how fragile life is, this simple truth is profound. Stop regretting and fearing. Save the reminiscing and planning for when you are not holding your beautiful child, and try to just breathe life in. The best part is, if you have trouble doing this (in yoga we call it "monkey mind"), it's okay because now is a new moment and you can try again.
7. You are the expert on your child. End. Of. Story.
8. Being a part of a solution makes the problem more manageable.
Life is full of problems, for all of us. Some are small (like the irritating way my toilet won't stop running without jiggling the handle multiple times), and some are big (like an insanely low rate of funding for epilepsy and rare disease research and education). Problems get smaller when you choose to do something about them.
For example, I could choose to learn a little about plumbing and fix the toilet issue more effectively. Or, I could spend several months working with a team of neurologists from two different hospitals to create a system of patient-friendly epilepsy information materials to put a dent into the widespread lack of education provided to newly diagnosed epileptics and their families. (It's funny how that second one seemed easier at the time. I can always call a plumber.)
9. Forget winning. Celebrate progress, because it is progress.
We live in a culture that celebrates achievers. When your child has missed every milestone in the book, you have to find a new approach. You have to learn that your definition of achievement isn't reflective of anyone else's. That is something that can only be defined by the individual. And, just maybe, your definition is better. So work towards finding it—however slowly and however many steps forward (or backwards) it takes—and then celebrate it all along the way.
Because even slow progress is progress. Because the first word is that much sweeter when you have waited so many years to hear it. Because every game played by the special needs baseball league is as joyful and emotional as the world series.
10. Your strength does not have limits.
Nothing surprises me more than when another mom tells me that she couldn't do what I do. (And it is worth noting that not wanting to do something is different from not being able to do something). If it is your child who needs you, you can—and will—do whatever is necessary.
You can stay awake in an intensive care unit for three days straight because you are waiting for your child to wake up from a coma and you want to be the first thing he sees. You can sell the business you put your whole life and passion into so you can be closer to the medical center your child needs to be treated at for his rare disease. You can yell sternly at your very sick child to take their medicine "or else," even though there is nothing more you want to do than scoop them up and take them away from everything that hurts them.
The things I have done myself, and the things I have seen other parents do because it was what their child needed can be impressive; but they are not at all astonishing.
You can endure almost anything physically, mentally, financially, or emotionally if it is the best thing for your child. You should just know that, and be confident in it. Because that is what unconditional love is.
That is being a mother.
How has raising a child with special needs changed your perspective as a parent?
May 07, 2013 10:13
By Rita Buettner
— 1 —
Ever seen a Johnny Jump Up? I don’t think I even knew it was a flower. I thought it was something you bought and attached to a doorway for babies to jump in. Anyway, I saw my first one—or the first one identified as such—on our trip to Williamsburg.
Isn’t it lovely? And don't you like it even more because of its name?
— 2 —
Yesterday I spontaneously decided to take today off from work.
When my sister was planning her wedding
, I promised that I would take off a day and we would spend time together. It was supposed to be sort of a bachelorette celebration, but I’m pretty sure we missed the window of opportunity on that since she and my brother-in-law have been married six months next week. So it will just be a day of fun. We’ll window shop, maybe get a cup of tea somewhere, perhaps speak in British accents, and quote randomly from The Princess Bride
and whatever Jane Austen film we wish we had time to watch.
My new year’s resolution was to take one day off each month, and I’ve failed. This will be my second day off this year and, as I just realized this week, it’s May. And I can’t be the only person who has had this song running through my head for the past three days.
— 3 —
If a person keeps a candy bowl in his or her office, is it appropriate for a visiting child to ask for a piece? My sons joined me for a work-related errand yesterday, and they were excited to see candy bowls in the offices we visited. Normally our rule—which is rarely followed—is not to ask for something that is not offered. However, is an open bowl of candy a sign that an offer has already been extended?
Not asking for an M&M was apparently too much for my 3-year-old candy enthusiast to grasp, and I was just happy he asked politely when he asked. So I didn’t make a big deal over it. But now I’m wondering, am I being too strict or not strict enough?
The bigger question is why am I worrying about candy bowls when the harder thing for a child to grasp is general office etiquette, such as don’t walk behind the person’s desk, don’t throw yourself toward the couch, etc. And, of course, their favorite part of running errands was the running part.
— 4 —
A friend in Baltimore County called 911 when his cat was stuck in a tree last week, and the fire department apparently threatened to call the police on him.
So now I’m wondering: Do fire departments not rescue cats anymore? If not, why not? And, if they don’t, who does? Just in the past few days I have seen this story about a Florida kitten rescued from a wall
and this one about the Harford County Fire Department rescuing a fox from a drain
. Maybe it varies by county? We don’t have a cat, but in the children’s books you can always call the fire department if a cat is stuck in a tree. I just assumed that was how it worked.
— 5 —
I borrowed my father’s beloved GPS from him for our trip to Williamsburg last weekend. As we were driving through tree-lined Nowhere, Va., with no idea where to go and no help from the GPS, John and I were grumbling about how worthless it was.
“If I were driving,” Leo said from the backseat, “I would turn around and go home.”
We didn’t, but I won’t say we didn’t think about it. Even our printed directions weren’t helping much, and it all seemed rather hopeless. We did eventually find our way, but it took longer than it should have.
Later I realized the battery in the GPS had died and I had plugged it into the wrong socket in the car. I think that’s called human error. Once I figured it out, it did start talking to us again. But I’m still not sure I am a GPS fan.
Oh, and in case you were wondering, Williamsburg is a very, very, very, very long drive for a day trip from Baltimore. John and I were glad we made it a day trip rather than an overnight because it worked better for us to sleep in our own beds and it was much less expensive. But I can’t honestly recommend it as a day trip without mentioning that the trip took 12 hours and 7 ½ of those hours we were in the car.
Here’s the thing. I was raised by parents who woke up one Easter morning and, after Mass and baskets, put us in the family van and drove 5 ½ hours to have a picnic lunch with my two sisters who were in college. Then we drove home—another 5 1/2 hours. And we thought it was fun. (Note, if you ask my father, he'll tell you he made it in under 5 hours each way.)
Other than the excessive driving, our trip to Williamsburg was quite memorable
, and we got to spend time with our friends from South Dakota who happened to be on the East Coast. We hadn’t seen them since August 2011 when we met them on our adoption trip to Daniel in China. John and I thoroughly enjoy them and loved connecting with them. There’s something special about the friends you make on that journey to parenthood.
I don’t say it often enough, so thank you, thank you, thank you for reading my blog.
When I wrote about our experience with infertility
last week, I received such an amazing response, with so many thoughtful comments. I was so touched by the personal experiences so many of you shared. So I just want to say how thankful I am that you stopped by, whether for your first visit or second or 17th.
May 03, 2013 08:48
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By Rita Buettner