Thursday, October 31, 2013


Everyday I find more reason to be grateful, more people who deserve my thanks, and further my understanding of the beauty in each person. I always come back to a three groups and one individual who I think have influenced my ability to welcome Mariana without any sadness or wistful fantasies of what might have been.

The first is my parents. Duh. Mom and Dad, thank you. Thank you for having eight kids when everyone thought you were crazy, ignorant, selfish and weird. Thank you for teaching us that babies are always good news. Thank you for letting us know that your love was never gauged by our performance as human beings. Thank you for telling me how the doctor said I would "be less than perfect" and how that made zero difference in your love for me. Thank you for teaching me to trust that God has all this handled, that I don't have to be a perfect parent and that siblings are the best gift any child could have.

To the parents of children with Down syndrome who came before, thank you for taking your babies home instead of leaving them at the hospital. Thank you for letting them grow up in a family that had expectations, patience, love and arguments. Thank you for being the person the school administrators dread seeing. Thank you for insisting your kids could learn, should learn and had the same rights as every child. Thank you for allowing yourself to be labelled "pushy", "entitled", "in denial" and "a pain in the ass" by teachers, principals and school boards. Thank you for withstanding being gossiped about and ignored. Thank you for not accepting a blanket description of you children's abilities, or believing everything about them was disabled. Thank you for understanding that you are the people who know your children best, not the medical journals. Thank you for allowing me to go to high school with your child who loved dogs, dancing, laughing and football. Thank you for instilling in me that kids can be trusted to be kind to your children.

To the school administrators and teachers who came before; Thank you. Thank you for opening up to interesting possibility. Thank you for being curious. Thank you for trusting those parents who insisted things you were taught were impossible, were actually possible. Thank you for being ignorant that "those people can't learn to read", and instead finding out how to teach them anyway. Thank you for believing typical kids needed atypical kids. Thank you for eventually giving in to that "pain in the ass parent", even if it was to get her off your back.

To the baby I wake up to everyday; Thank you. Thank you for not reading the manual. Thank you for being so contrary, for hearing that you can't do something and doing that very thing. Thank you for sleeping through the night early on. Thank you for being so independent. Thank you for wanting to be one of the big kids. Thank you for getting your feelings hurt when you are left out. Thank you for cuddling when you don't want to do your work. Thank you for getting in the toilet. Thank you for unrolling the toilet paper. Thank you for splashing in the dog water. Thank you for needing things done differently. Thank you for inspiring your siblings to work harder, to stand up for what is right, to love someone who isn't as capable as they are. Thank you for teaching your mom and dad to work toward an uncertain future, to hope without insisting on results, that life is good even when it's scary and sad and terrible.

Friday, October 25, 2013

Quick Takes

This is where I live now. Metaphorically speaking, of course.
This week was parent/teacher conferences. I am hit with the irony of my insistence that Mariana be treated just like anyone else, and yet my inclination to outline for each teacher that my kid in her class is a preshus snowflake of uniqueness. Living with the paradox of, "We're more alike than different." and "Everyone has special needs!" is fun and hilarious.
Mae is trying so hard to be a walker. She walks first, and crawls only after several plops. And does she ever plop--right down on her rump. She always looks at me and says, "Ooooo." after. So cute! I really don't appreciate this part of development in any of my kids. I don't know how to answer the question, "Is she walking?" Paul took his first steps at 9 months and was walking by 10.5, but all that in between was confusing. Mae took her first steps months ago, and now she's finally trying to walk, but isn't great at it yet. So, yes, she's walking, but it ain't pretty.
A lady bought my coffee on Tuesday because Mariana was charming. After that I read a post about a woman walking by someone holding her two-year-old daughter with Down syndrome and blurting out, "That baby shouldn't exist!" When the mother said, "Excuse me?" The woman replied that the mother's life would be better if her daughter hadn't been born.

I just cannot imagine this happening to us ever. Sure, the check out lady might ask me if Mae needed surgery, and sure, I really feel strange explaining Mariana's personal health while paying for my groceries, but this kind of stuff is just stunning. I mean, if this happens to us now I know exactly what I would say, but if it was a sneak attack, I'd probably just sputter and maybe scream, "JERKFACE!" or some other mature and helpful statement.

If you do ever witness this kind of garbage, feel free to speak up and tell that particular person that the world would be better off if he/she just stays silent. In a perfect instance it would be an opportunity to educate and perhaps build a little bridge of empathy. People who say such things come from a place of pain. But if there is only one second to respond, remind that lovely person of the old adage about not having anything nice to say.
Lemme circle back to conferences. The kids are pretty set academically. Molly's in that weird 1st grade reading limbo between being technically able to read and actually being fluent enough for chapter books. Luckily, this is my third time being the parent of a first grader, so I'm not anxious.

What is lovely is having teachers who value the most important things about your children, and who pull the best out of them and nurture it. Paul is becoming helpful. Molly is still super cute and charming. Charlotte's bubbly joy is surfacing, and while she'll never win a behavior award, her teacher appreciates that Charlotte is always laughing. Kate is diligent and, when pressed, will stand up for what is right. When the 4th grade boys were using the words, "retard" and "retardation" to make fun of one another, Kate asked her teacher to address it with the class.

Academically I am considering homeschooling Kate. She's got some very specific interests and challenges that I think would be well served in a homeschool setting. But the community at my kids' school is phenomenal, and I can not imagine not being a part of it. Kids are kids and are going to be jerks, be irresponsible and make big and little mistakes. To have a community of teachers that understand kids and invest in their moral formation is so uplifting that I waffle day-to-day on what we will decide for next year.

Last week was terrible. We had a huge communication SNAFU with the geneticists office and didn't get Mae's test results until yesterday when Scott went to the office unannounced. Our doctor is amazing and helpful and in general a great doctor, but because of some wickedly awful communication from the call center he employs, we spent the weekend thinking we were going to be told Mae had leukemia.

Times like this make me wonder how atheists get through. I've heard atheists claim that belief is just a crutch for the weak, but I can't help but wonder why that is such a problem? Jennifer Fulwiler did a webisode on the Explore God campaign where she compared having faith being a crutch the way gravity is a crutch.  This weekend I needed to be in constant communication with God. I needed constant spiritual reassurance that, come what may, we'd be able to get through it. And I needed help to keep me from being a nasty grouch toward my husband and children while my mind was so actively trying to convince me that the worst was coming. Even now, when the tension has been released, I want to retreat and be left alone to recover from all that stress. Scott's at work and there is no school today. So I have to ask again for the grace to not get annoyed that my children want my attention and need my help. I have to push past my desire for quiet and contemplation and lean toward the beautiful life I have here and now. I need help from God to do that. If that makes me weaker than an atheist, so be it.

Mae's thyroid is a tiny bit wonky. It did this last spring, but we focused on nutrition and it righted itself. I hope this will be the case again, but if it isn't I thank God we live in a time and place that gives us medication to help her. In general I tend to shake my fist at the current way of practicing medicine. There are so many doctors who just prescribe medications to cover symptoms rather than finding a cause and then treating accordingly. Many doctors don't even care about educating their patients on wellness and proper care for oneself. I don't often take the time to be grateful that there are medications for those who truly need them. Even if the system is frustrating, we do live in a wonderful time for getting good and proper care.
Don't forget about the Buddy Walk and The mAe Team! Every dollar counts and every walker is welcome!! Join The mAe Team now!
I pity the fool that don't join The mAe Team!

For more Quick Takes, visit Conversion Diary!
Dock Source

Tuesday, October 22, 2013

More Alike than Different - Toddlers Be Crazy Edition

This post is brought to you by More Alike Than Different, a complete figment of my imagination based on some interesting Facebook statuses that highlight how people with Down syndrome and those without are more alike than different; hence the name.

Everybody knows toddlers be crazy. Mariana is no exception. Usually, after everyone has gone to school and Mae has finished up her breakfast and been dressed, I can go about my business for a few minutes before she does some death-defying action that requires my attention. Most of that time on a Tuesday would be spent loading up the diaper bag and the car to get set for therapy. Today I needed to use the bathroom.

Now moms know that when the toddler is the only one in the house you do not shut the door all the way lest that fool-child tries to drown himself in the puddle near the fridge left by the preschooler who needed a drink just as he was supposed to get in the car to go to school. The door was left cracked, which in Toddler World is as good as an engraved invitation to come inspect your business. Sure enough, Mae came bursting in and scooted her cute little self over to me where she proceeded to stand up and attempt to push me off the toilet. From her insistent finger pointing, pigtailed head shaking and forceful babble I surmised she wanted to use the potty. Now, as a firm believer in making hay while the sun shines, I normally would stop the world to take advantage of this little burst of interest in using the facilities. Today, however, I was not so inclined and thus told her sweetly, "Mama's turn."

This, of course, was the same as withholding food and drink, and so was met with the same kind of protest. Sweet Miss hit me and said, "Nooo-nooo!" and once again tried to push me. When that was ineffective, she pulled the hand towel down and grunted a nasty little toddler-expletive. She stared at me with that side-eye look and threw herself onto the ground while telling me off. This, I can only imagine, was an attempt to get me to be so disgusted that she was lying on a bathroom floor that I would jump up in haste and tend to her very urgent needs. Perhaps she has learned something in the public restrooms after all. Unfortunately, while I wouldn't call my bathrooms "sparkling clean", they are nowhere near the scary germfest that public restrooms are, and at least the germs present are all ours.

I proceeded to finish up, which includes closing the lid now that someone in the house thinks the toilet doubles as a terrific water table. Are you surprised that Sass took this personally and grabbed my pant legs and shook them with all her might? I washed my hands, picked up the towel and turned off the light turning my back to leave. At this point she followed me, so I shut the door as a civilized person living with a toddler might. Luckily the cat passed by, which was taken as an invitation to act out another episode of the tele-novella, "Toddler and Cat - A Story of Unrequited Love"

Now well into my fifth experience of parenting a toddler, I can with some certitude say, yep, way more alike than different. Le sigh.

Thursday, October 17, 2013

Real Talk

Down syndrome awareness month has been really neat for me. I've been able to read a ton of stories that share a different perspective but the same thread of joy and fulfillment that our family experiences through loving our sweet Mae. But I haven't read any of, what I like to call, Real Talk. Real Talk is the hard parts, the aches and pains and the endurance that is sometimes required when there seems like no endurance left. I think October needs a little more Real Talk if we want to be honest in our representation of what it is like to raise a child with Down syndrome. My witness is just one, and it's one that is as young as Mae. At 19 months in I am still getting my sea legs on this whole thing. I imagine some seasoned parent will read this post and think, "You haven't got it all figured out, Lady." And I'm counting on it. Brace yourselves, here is some Real Talk.

There have been tears lately. Serious, heart wrenching tears. And sleeplessness. Oh man, both Scott and I are on the ropes with the sleeplessness. First it was the realization that Mae is ready to move forward in her abilities, and she can't. Well, she will, but not like other kids, and only with lots and lots of frustration. This hurts so badly. Watching my baby try so hard to be like the other kids, watching her reject being babied by the other kids, watching her feel left out and frustrated, it's so very hard. When we were talking about her OT eval, her OT mentioned that her social and emotional development is on target with typical development. Which is why I cried. Mariana wants to run, not walk. She wants to swipe the other kid's toy successfully. She wants to feed herself with a fork and spoon without my hand over hers. She wants to climb out of her crib and climb onto the coffee table and run and be chased. If you could see her efforts, you'd see a typical 19 month old trying to control her universe as she understands it. You'd also see how it doesn't work out. So I cried.

This week she had her CBC to check for Leukemia and her thyroid tested. (Still waiting for results.) I found out that the scheduler never entered my appointment into the computer, this after I showed up 3 hours late last month because I put in the wrong time. The geneticist is not exactly the easiest guy to get in to see. I cried the whole way to the office determined not to leave without an order for her blood tests. The receptionist was lovely, sweet and totally apologetic, even though it was my fault this wasn't already done in the first place. We went to get her blood drawn and the thing I thought we wouldn't have to deal with happened; she fought it.

I wrapped Mae in my arms to keep her still and as the phlebotomist stuck her she yelled, "NO! NO! NO! NO!" Her face was red and angry. I made soothing sounds saying, "It's almost over. It's almost over." I was talking to all of us. Scott looked like he'd been sucker punched and I felt like my heart had been stabbed. As usual, once it was over, it was over for Mariana. It stayed with me, though.

Why is it important to know these things? That your child will have to experience pain, that your heart will be tenderized and sore and some days all you will have is tears and sorrow? Because even in these dark days, even with the threat of Leukemia, thyroid problems, sleep apnea, motor and cognitive delays and the slings and arrows of general prejudice, I wouldn't go back to before when there was no Mariana. I may spend a night tossing and turning and my prayers may be interrupted by the dark intruding thoughts of what can happen, but my life, my husband's life, the lives of our other children and family members, are better now. Scott and I remark on it all the time; we'd rather live in fear for her than be happy without her. If you are confused by this paradox, welcome to the club. There is no way I can give you a logical explanation of this.  Real Talk; life is full of tears, heartache, disappointment and fear. But that is never the full story. Not ever.

This morning on our walk, Mae decided she was independent. I stood in front of her and she would push my legs until I took a few steps back. There she would stand stock-still as though making a difficult decision. Then she would rush forward in her little goose-step style, mouth open and panting like a puppy. She would hug my legs and grin up at me in her peculiar, "Look what I just did." way. Then, the process would start all over. A work truck drove down our street, the passenger watching our activity as he passed. It occurred to me that he knew what he was witnessing. A blooming flower in progress, the burgeoning skill of a toddler. In just a moment on his way to work, Mae gave him a gift of beauty just by being. This, a tiny moment in time, makes every tear shed paid in full.

Saturday, October 12, 2013

True Luxury

I asked Scott why he thought so many people seemed to be against safe, accurate and early prenatal testing, and why so many insisted there was no problem with Down syndrome. It occurred to me as I asked this that if I am seemingly the anomaly, perhaps something made me different. So I reflected on this when I could. Why do I see early accurate testing as a hopeful sign? Well, because I wouldn't terminate a pregnancy under any circumstance, and because I believe there may be prenatal opportunities to help a baby with specific nutritional guidelines and possible fetal surgery. Why do I see Down syndrome as problematic and can easily view my child as a blessing? Because I don't see Mae as the sum of her chromosomes. She's so much like her siblings and so very much herself, but Down syndrome is slowing her from doing what she wants. I hate when therapists say things about her personality are very "Down syndrome typical" when in fact, friendliness, a quick temper and stubbornness are family traits she probably would have inherited anyway. I see Mae-Mae for who she is and I see what having Ds does to her, and I'd fix that if I could. Heck, that's what all the therapy is for!

The root reason I have this viewpoint, I think, is because I live in the best community to raise a child with Down syndrome. The surgical team who performed my C-section had enough wisdom to see I was wack-a-doo with drugs and not say anything about it to me, though the anesthesiologist did ask some leading questions that I now realized were an attempt to help me realize the facts. The NICU doctor who did tell us was so perfect, I wish he would get a medal. First, he congratulated us on her birth, then he asked if we understood why she was in the NICU. Then he explained the issues, and lastly he said, "I suspect she has Down syndrome, so I have sent her blood for genetic testing." He did all in his power to keep her at the NICU of the hospital where I delivered until I was almost ready to be discharged, and he promised me there would be no secrets. I have an abiding love and appreciation for this man because of his honest and candid nature.

Our community adores Mariana. She gets free stuff all the time, sometimes without permission from her parents! In fact, I would say rather than devaluing her because she has Down syndrome, she is often valued more than our other children because she has Down syndrome. I myself have to be watchful about over-emphasizing her value and make a concerted effort to pointedly affirm our other children's good qualities lest they imagine she is more special than they are. People here seems to understand to wait patiently for her to respond, and many sign to her as well. There have been some rude comments, but most have been in ignorance, and I hold no grudge against the ignorant who do not remain willfully so. Much of the rudeness we face is when complete strangers ask deeply personal questions at inopportune times, like while I'm paying for my groceries. Not everyone is great at timing, but bad timing is far more favorable than nasty commentary.

The school where our children go has embraced Mariana in a special way even though she will not be able to attend. It's a small school that doesn't have enough space for the currently enrolled students, and they have no special education staff. I expressed my sadness to the principal that Mae wouldn't get to be part of the community I wanted my kids to grow up in, and he readily hosted me in a meeting to discussed ways to be a partner with the Down Syndrome Association of Jacksonville. Each person at that meeting was engaged and interested in what I had to say and genuinely expressed a desire to teach the children at the school another way to witness the dignity in each person.

There are countless stories out there of doctors delivering the diagnosis like they are sentencing parents to a dismal future, and prenatally, encourage them to abort and "try for a healthy one." Many recount the rudeness and ignorance they face daily. Many schools reject children because its "unfair to the normal kids" to make accommodations for a minority. It is no wonder that these fiercely loving parents reject safe and early prenatal testing and see it as a tool for eugenicists. It's no wonder that they claim their children do not need to be cured of Down syndrome. I can't blame any of those loving caregivers for being frustrated that people see their child as a Down syndrome kid rather than a kid who has Down syndrome. It makes little difference to me because it hasn't been used against Mariana. How differently would I feel if it were?

I'm still convicted that Down syndrome is a problem, much in the way that cerebral palsy is a problem. I still separate Mariana from her diagnosis and hope to overcome the problems this little extra genetic material causes her. It is important for me to also recognize that this belief is a luxury afforded to me by living in a generous and caring community. Those who disagree most likely do not have the same wonderful experience as I. It is a tragedy that our community is a rarity, and I pray God has mercy on these people who do not lovingly accept his beautiful children. Caring for them is the one of the sweetest experiences life has to offer.

Thursday, October 10, 2013

The Blessing and Problem of Down Syndrome

October is Down syndrome awareness month. I have had a great month with Mariana, who continues to attempt to walk, fights about using a spoon, talks only when she wants and has begun a fake laugh. There are many developments in her little life, many that are frustrating for her parents (like hitting and scratching) and many that are hopeful little signs of maturity. Boy do I love being this girl's mama.

Caring for Mariana is one of the best experiences of my life. If it were possible, I would cure her of Down syndrome. Human beings are supposed to have 46 chromosomes in each cell. Having 47 is a problem for the individual. It is not a problem for me. I do not fear failure and, like so many, wish this baby away. I fear failure and therefor proceed doggedly forward to help this child overcome the problems her extra chromosome is causing. I experience the joy of being human every day. We humans are different from other species because--among many other reasons--we can discover treatments for Down syndrome. We can conquer the risks associated with Down syndrome. We can offer those with Down syndrome more opportunities to make the most of what they are capable. Just 50 years ago the life expectancy for people like Mae was 25 years, now it is 60+. No other beautiful creature is capable of this kind of progress. I live that truth every day.

The beauty of having Down syndrome is in the conquering of it's risks. These beautiful people are challenged every day by the simplest of tasks, and they continue to accept the challenge and overwhelmingly enjoy their lives. The beauty of caring for these individuals is in conquering ourselves. We who have the blessing of being caregivers become more patient, more intuitive, better problem solvers, more hopeful, more persistent and more understanding. We love more fully because we appreciate all the gifts life gives us through the lessons we learn in caring for those with Down syndrome.

I often come across family members of a person with Down syndrome who will claim that calling Ds a disease is insulting. We shouldn't label. We should love all people for all people are unique. Well, yes, of course. But no. Having an extra chromosome puts these people at risk for leukemia, thyroid malfunctions, heart defects, intestinal defects, cognitive impairments, motor impairments, Alzheimer's disease.. and the list goes on. While caring for our loved ones improves our lives, and while there are blessing for those with this condition, can we really honestly say we wouldn't remove these specific risks if we had the chance? Every time we go for Mae's CBC a pall of sorrow overwhelms my spirit until we get the results. I do not like to think of my child experiencing cancer even though I know we could tackle it. Knowing we could handle anything doesn't mean I'd sign my kids up for anything. 

If I chose the conversation for the month of October it would be this: How can we highlight the absolute beauty and dignity of each person with Down syndrome without giving in to the temptation of claiming Down syndrome itself ought not be treated as a problem within the individual?

Down syndrome is a problem. People with Down syndrome are a blessing. Discuss.