Today is World Down Syndrome Day and I’m participating in a blogging project Meriah Nichols at A Little Moxie and the lovely ladies at the Down Syndrome Diagnosis Network have created called A Day in the Life of Down Syndrome. Blogging, as you may have noticed, hasn’t exactly fit in with my lifestyle both because of business and because of lack of inspiration. I created this blog to be my space to write about Down syndrome but most days there’s not too much to say. I started a post detailing a typical day over a week ago but never published it because it was ridiculously boring. I suspect that is the point of this project.
Most of Natalie’s days start by being woken up either intentionally (by me) or incidentally (by her brother). She’s not a fan, regardless of how it happens.
Once she’s up she immediately starts asking for her “sauce”. Natalie takes levothyroxine for her underactive thyroid and since it only comes in pill form I crush it and give it to her with a little bit of applesauce. From there our lives are pretty much the same as everyone else I know who stays at home with young children. Lots of feeding and cleaning up, preschool for Logan, play dates, errands, park days, coloring, playing, TV, tantrums, timeouts, tickling, singing, dancing, and giggling. I don’t think it’s due to her extra chromosome, but Natalie does seem to enjoy sitting on her brother more than other two-year old children I know.
Natalie also has three therapy sessions every week. The county provides occupational and physical therapists that each come every other week and we take her to private speech and another physical therapy session every week. I vacillate between, “this is a waste of time” and “we should be doing more” which I guess is a nice equilibrium. I do feel very fortunate to have other (professionally trained!) adults who care about Natalie and are invested in her progress. Natalie tolerates and even likes therapy sometimes, much more than when she was younger.
The most challenging part of daily life with Down syndrome for me is that Natalie is not walking yet. She’s so close (10 unassisted steps so far) and can go anywhere she wants in our house (including on top of the bathroom counter, yikes!) but keeping her happy outside or in places it’s not safe for her to be on the floor can be hard. She’s also really heavy! We get a lot of use out of our $20 umbrella stroller.
Most days I can say with certainty that I wouldn’t change Natalie’s Down syndrome. I don’t know exactly where I fall on the “does her extra chromosome shape her personality” question though I lean toward thinking yes. I do know that who she is and who she is becoming is partly due to her experiences and having to work extra hard to achieve some milestones. She’s fiercely independent, bossy, opinionated, suspicious, sensitive, and cuddly. She has high self-esteem (“I did it! Yay!”) which I credit to having early intervention specialists come to the house to applaud everything she did from the time she was one month old. She announces “all done” whenever she decides she’s finished with something (including being quiet during church) and many of her first words have been instructions to others (“stop”, “stay right there”, “sit”). She is happy to play alone for long periods of time and I’ll often find her in her glider upstairs with a baby doll on her lap pretending to read books or sing to the baby while she rocks. She understands limits I’ve set but only abides by them if I’m watching. She loves music and dancing, The ABC Book, cheese, baths, her daddy, Vaseline on her lips, and blowing bubbles. She hates getting her hands washed in the sink, citrus fruits, loud noises, wearing shoes or hair bows, and when people put their hands on a chair she’s using.
Three years ago I thought my daughter’s impending arrival meant life was going to change, that our days would be different and harder because she had an extra chromosome. I was wrong. I won’t deny that Down syndrome is a constant part of our lives, and something we think and talk about often. But it’s just a part and doesn’t define us any more than any other part of our lives.
I’m a terrible blogger and I’m not even going to waste time with excuses because there have been plenty of evenings where I thought about writing and then thought, “nah, I’d rather drink a glass of wine and watch trashy TV”. Nor will I make any promises about doing better because honestly, I have none to give.
It is has come to my attention via Facebook that today is dedicated to “Spreading the Word to End the Word”. The word, being, “retarded”. The medical community, in what I can only assume was a move to become more PC, has discontinued the term mentally retarded and instead now uses intellectually disabled.
I don’t think what doctors and other professionals use to describe people whose IQ is below 70 is the issue. Sure, retarded sounds ugly, but so does “cocksackle”. The issue, at least to me, is that other people use these terms as an insult. “Retard”, “schizo”, “spaz” are all words that do or have at one time described a condition (and by condition I mean state of being) or symptom of a condition that are now used as insults. They are used colloquially to infer that a person or action or situation is somehow inferior. And by doing so, it is implied that people who truly have that condition are also inferior.
That’s my problem. Should my daughter be tested and found to have an intellectual quotient of less than 70, you may not compare her to the time you locked your keys in the car or burned your dinner, or even having the Superbowl in New Jersey. Because she is a person, a child of God, just as valuable as anyone else. Her extra chromosome does not make her less good.
Changing professional terminology is not a solution. I have no doubt that somewhere, sometime, a kid who forgets his locker combination will say, “I’m so ID”. It means the same thing. The only solution is changed minds and hearts. Awareness, understanding, and love.
Exercise more, drink less wine, keep a cleaner house, think of more creative ways for Logan to wreck my house (colored vinegar and baking soda, anyone?), work more on therapy exercises with Natalie, read more to both kids, watch less TV, remember to take time for myself, spend less time sitting down, read the Bible in a year, read 30 books, host regular playdates with friends, make some new friends, offer my assistance to those in need, cook healthier meals, potty train Logan, be more organized, save more money, spend more quality time with husband, call out of town friends and family, get enough sleep, write thank you notes promptly, don’t let the paint on my toenails chip so much that my toddler notices and says “uh-oh”, blog more (uh yeah, oops).
I am a Type-A personality. I make lists, I cross off items. During my freshman year of college I planned my life in 15 minute increments for weeks in advance. I regularly had nightmares about not getting everything done, one of which prompted a panicked email to a professor at 3 am asking for an extension for papers due 2 months later (which was granted, BTW). I thrive off of schedules, achievement, off of doing exactly what I said I was going to do that day.
And now, I have babies who I swear some days are out to spite me and my lists. They don’t sleep when they should, sometimes they sleep more than I want them to because THE SCHEDULE!!!!!!!, they cry, they move slowly, they randomly switch the routine on me as soon as I’ve got it down, they tell me that they “don’t like this game anymore” when this game means peeing in the toilet and I thought I was basically done and the stupid book said it’d be fine after 3 days so get with the program kid. (He did, it seems).
I’m tired. My busy busy brain won’t shut up for me to sleep most nights and so I slog through my days trying to get up the energy to do the things I want to do to be the most perfect little stay at home mom that I envision in my brain.
I’m so far from perfect. I want to get closer. Every year I make resolutions about how to be better. Specific, instructional, judgmental (when I break them) resolutions. When I inevitably break them, the law of Anna, I retreat. I think, “oh tomorrow/next week/next month/once X Y or Z happens” I’ll start again. And then I get behind and opt to wallow instead of working and once I do start working there is too much and I can’t finish..
So this year, I’m not making those kinds of resolutions. I’m resolving, instead:
-To do my best. It’s humbling to admit that my best right now might not be as good as I want. Doing my best in school always meant an A, but not so in this life of mine, not right now.
-To be a good steward. There are many many things I want that I don’t have. This year I’m trying to make sure I’m caring for the things I’ve been given. My kids, my husband, my belongings, and my home.
-And mostly, to love God and love people.
I am praying that with a new mindset I will both do better at the things that need to be done but also feel better about the things that don’t get done. Praying that I will be granted correct priorities, energy to complete them, and peace with myself.
One year the genetic counselor at Hopkins called me. One of the worst things that went through my mind was that I didn’t know if I could ever love the baby inside of me in a complete way. .For six months from the diagnosis until her birthday, I was scared, confused, broken.
My most awful fear of not loving my baby was irrevocably squashed the moment I saw her, six months ago. I still have fears about gross motor delays and hearing and money and the future. But this love is pulling me through all of it.
I resisted participating in the local Down Syndrome support group for quite a while after we got Natalie’s diagnosis and even after she was born, but we’ve finally started attending a few events. I think the best part for me is seeing how nice and happy all the parents are. For some reason I pictured downtrodden, exhausted, and stressed moms and dads. At a mom’s night out, several other moms of older kids told me their children with Down Syndrome where their greatest blessings. At six months old, Natalie is such a delight to my heart. Her daddy adores her; her brother, while skeptical at first, must be coming around because he told me he wants to have more babies after Christmas (not happening); and all the strangers in the grocery think she is adorable. I can’t wait to see what the next year has for us.
Two years ago was my last day of work. Logan was six months old (which by the way means that today he is two and a half!!!!). I had been back at work since August. Jon had been unemployed since September and my mom had been living in a hotel and keeping Logan so that Jon could spend his days looking for a job.
It was not a great situation.
So I gave notice at work. We packed up our apartment and put most of our stuff in storage. We said goodbye to our friends in Maryland. The plan was to stay with my parents in Raleigh for a while. I would find a job, Jon would go back to school for a year or two, and my mom would keep watching Logan but from the comfort of her own home. We were scared, but something had to change. We arrived in Raleigh late on Tuesday night with a car full of stuff. Jon was going to go back to Maryland to empty out our apartment after Thanksgiving.
Around 2 in the afternoon on Wednesday, Jon got a job offer. Back in Maryland.
So, after Thanksgiving dinner we reloaded our car and headed back up to North Carolina. Our lease in our old apartment was up on Tuesday, which meant we had five days to find a place to live and move. We got seriously lucky and found a nice little (empty) townhouse on our second day of looking. We were technically squatters in our apartment for a few hours, but we got moved.
Today I’m thankful for my husband’s job. I’m thankful for how it provides for us, how it lets me do what I’ve always wanted to do, and how it arrived at the absolute perfect time.
Day 13: I’m thankful for our great health insurance. With a high-risk pregnancy, a toddler who gets sick all the time, and a baby who needs a lot of specialist visits, we would be in big trouble without it.
Day 14: I am thankful for my mommy group. When I quit my job to stay at home with Logan I did not have any friends near where we live. Grocery store trips were exciting, because they were a valid reason to get out of the house. Eventually I found a few groups of moms on meetup.com and one in particular with some really great women. Over the past year and a half I’ve made some wonderful friends. I am so grateful for all the play dates, picnics at the park, and other outings with these friends. This group has saved my sanity and helped me really relish being a stay at home mom. And, I’m so happy that Logan has some buddies that are a steady presence in his life too. At this point he just knows their names and what kinds of toys they have but I’m excited for our little kids to start developing real friendships with each other. I hope that our group will stay strong as our babies grow up and go to school.
Things have been a wee bit crazy around here, with doctors visits and a nap strike and a baby baptism. We have a bit of a respite until Thanksgiving when we’ll be traveling and then we are on to ALL THE CHRISTMAS!!!!!!!!! and I will likely be immersed in shopping and wrapping and baking and maybe even turning my kids’ footprints into reindeer or letting Logan put glitter on cutout stars until I collapse in a jolly and bright heap.
But today’s order of business is catch-up thankfulness. The great advantage of this exercise is that I find myself thinking of what I’m grateful for throughout the days, and doing so always makes things easier to bear.
Day 6: I’m thankful for Natalie’s healthy heart. More than half of babies with Down Syndrome have a heart defect. Last February we went to Johns Hopkins to have a fetal echocardiogram. After a long ultrasound in a very hot room a cardiologist came in and explained all of the heart defects that babies with Down Syndrome are likely to have. And then she said that our baby didn’t have any of them. We celebrated the occasion by finally deciding on her name. We desperately needed some good news, and there it was.
Day 7: I’m thankful for our home. It’s not perfect and I often find myself wishing for a better play area or a real yard but our home is attractive and comfortable and reliable.
Day 8: I’m thankful for my education. Saint Mary’s School and Davidson shaped every part of my life. I’m grateful for the things I learned, friends I made, communities I participated in, and teachers who invested in me and challenged me and chided me and cheered me.
Day 9: I’m thankful for the city where I live. So actually, we really want to move and sometimes cringe at the suburban uniformity here. But, we have great schools, great parks, and the “Association” whose gyms have centers that will watch my children for up to two hours per day while I exercise, shower, or even just sit in the hot tub. It’s a nice place to live.
Day 10: I’m thankful for Early Intervention. Natalie gets physical and occupational therapy through the public school system. The therapists come to our house and it is completely free to us. I’m thankful that our society cares enough about children with special needs at this point in our history that they have these kinds of programs. There was a time not too long ago when children with Down Syndrome were institutionalized and forgotten…perhaps even feared. I am so thankful that we have become aware enough that ALL of our children are considered individuals with potential that should be nurtured, and that our government sees fit to fund programs to help them.
Day 11: I’m thankful for my church. It is a long drive and I’m not sure we will be able to keep it up once our kids are older and want to be more involved. But we love it so so much and I have no doubt that Central is the place we are meant to be at this point in our journey.
Day 12: I’m thankful for my extended family, and for people who are as good as family, who made the trek up here from North Carolina to see Natalie be baptized this weekend (more on that later). I feel buoyed by the love that we received, just by their presence. The only downside is that it makes us feel more homesick. We are so lucky, and our children are so lucky, to have people who love us that much.
Today I’m thankful for the right to vote. I’m thankful that this right is a real thing and not a farce. I’m thankful for the women who fought for ME to be able to vote. More than anything, I’m thankful that after we vote tomorrow and the results are announced, we don’t need to fear violent coups or riots. And I pray for those who aren’t so lucky.
Seeing how the time changed and thus ruined life for parents everywhere, my pediatrician evidently vaccinated Natalie against sleep at her appointment last week, and Logan has been inexplicably waking up crying a few times a night since his surgery, today I am thankful for coffee.
I’m a better mom when caffeinated, so I usually try to wake up before my kids and have a cup (um, or two) on the couch in the quiet. I think about where we have to go and when, brainstorm ideas of how to keep everyone happy and entertained if we are going to be at home for a long time, and enjoy my solitude which I usually don’t get back until I fall into bed at night. Getting up early helps me be more organized, maybe start a load of laundry or pack Logan’s lunch on school days before the day really starts, and I really have started to cherish that first hour of my day. Coffee, for me, tastes better when I’m alone and have a clean slate. It’s not just a drink, or even a drug that helps me function (although it does), it’s my favorite part of the daily routine.
My husband gets up at 6 most days, but some days it’s 5 so that he can get a quick trip to the gym in before work. He’s out the door by 7 and gets home from work between 5-5;30. Despite the fact that he hates to drive in traffic we live 25 or so miles from his office so that we will be in a safe area with excellent schools. As soon as he walks in the door he is greeted by an exuberant, “Daddy!” He puts his things down and immediately starts to play with Logan while I cook dinner, clean up a little, or go upstairs and put a pillow over my head. We eat dinner, and usually Natalie is pretty ready for her last nursing session and sleep so he does some dishes, plays a little more, and then gives Logan a bath and gets him ready for bed. When he’s done he helps finish cleaning up the kitchen. He takes out the trash or recycling. He stays up to make sure the cloth diapers get into the dryer. Some nights he spends a few more hours working before going to bed.
On Saturday mornings after I feed Natalie he lets me go back to sleep while he entertains her and feeds Logan breakfast. When I get up he almost always takes Logan somewhere so that I can put Natalie down for a nap and have a quiet morning to myself. Today is cold and dreary and little buddy isn’t quite up for rambunctious outdoor activity so they went to Ikea to have a snack and play.
He helps me around the house, he works hard so that I can stay home with our babies, he does more than his fair share of parenting, and he loves us all. He kills bugs, never makes me drive, pours me a glass of wine at the end of the day, and lets me watch Grey’s Anatomy even if there is a Thursday night football game. Some days thinking about everything he does makes me feel incredibly inadequate.
I’m so lucky. And thankful.