Happy World Down Syndrome Day!
Home.
Everything we do is an adventure.
The adventure of our new forever home is short and wild and sort of overwhelming, but in a good way. It’s all good.
About a week ago, we decided to start looking for a home casually. This is the last time I am moving (I swear) and we want to do this right. We feel a strong need to find the right place. I have been scouring Zillow for months, waiting and waiting for the right home to come up.
It’s been rough. Our list is short, but crucial. Must have two full baths and a main-floor potty. Must have a basement for severe weather. Must have a yard that can be fenced. No well water.
Do you know how hard it is to find houses with two full baths in our area??
On a whim Saturday, we visited an open house. We wanted to get a feel for what 1,400 square feet might feel like. It sounded small, smaller than our last town home, but the layout in our last home was as open as open can be. I didn’t want to go down that road again either.
After 5 minutes in the house, we both knew it was “the one.” That night, we joked about putting in an offer. We both sort of agreed that it was crazy because we hadn’t seen anything else and who does that??
Well, we do.
By Monday night, especially when we heard another offer was coming in, I was pretty much desperate to make this home ours. Quite hesitantly (because “people just don’t do this, Mag!”), John called in a offer. He was not happy with me, but I’m a girl who knows what I like.
We got into a double-bidding situation. After a meeting with our realtor, we had to put in our highest and best offer for the home. As I grew more and more anxious, I decided to write a letter to the sellers to ask them (or beg them, really) to choose us.
(This has been edited for location privacy)
Dear Sellers,
We are writing to ask you to give us the privilege of purchasing your home. Our family is very early in our search. In fact, yours is the first and only home that we have visited. However, last Saturday, when we came to your Open House, we knew right away that your home is the perfect fit for our family. It is exactly what we need and want for our forever home.
We have been prayerfully waiting for the right home to be available in this neighborhood. As a child, I attended ______ and when our youngest daughter was born with special needs two years ago, we knew that we would be moving back from _______ so that she could attend _____ as well. The school is well-equipped for her needs. We sold our previous house and have been living with my parents while we wait for the right place and the right timing.
Our four-year-old is very excited about the backyard and that we may be able to plant some vegetables in the summer. We envision cook-outs and family gatherings on the brick patio. The location is perfect – we frequently visit _______ and their proximity to the home cannot be topped. We are in love with the kitchen space. I am not always excited about doing dishes, but when I think about doing them by that window in the kitchen while the kids play outside, it’s much more bearable. 🙂 My mother-in-law visits regularly to help us care for the girls and I know that she will appreciate her own bedroom space on the main level, rather than sleeping on an air mattress in the girls’ room. My husband has been mapping out plans for the basement “man cave” and I would love to use the other first-floor bedroom as a sensory play room for our youngest daughter.
We are ready to settle into our forever home. We can tell by the care that has been put into your home that you have kept it well and that it has been loved by your family. We love it too, and would be proud to make it our own.
Many thanks for your consideration,
John, Maggie, Ellie, and Tessa
Long story short, after a nerve-wracking two-and-a-half hour wait, we received word that we had won the bidding war. Even though our bid was slightly under that of the other party, our letter convinced the owners that we were the right family. We are over the moon with excitement. It has been a whirlwind week, but finally, finally, we are going home.
State of Our Union, February 2016.
It’s time for a good, old-fashioned State of Our Union update.
My lack of writing hasn’t been for lack of topic, or even lack of energy. Quite frankly, I have lots of ideas rolling around in my head, ready to shake out on the computer page. What I haven’t found is an environment in which I can feel settled in and focused on the words. This is just my general state right now – a lot of things in a lot of places (including my own brain) and a routine that is somehow not routine at all.
It’s weird.
We sold our town home in December and are looking forward to purchasing a new home in the Spring, when it is a little greener and a lot warmer. Still in the midst of Crabuary, John and I are both busy with the odd, mid-year craziness. For me, I’m in the phase of my year that is still this year, but kind of next year all at the same time. We talk a lot about events in the here and now, like parent conferences and grades and institute days, but also about next year. Next year’s schedule, next year’s group of students, next year’s curriculum.
See? No settled, no focus. I’m like one of those frustrating novels that keeps flipping back and forth between time frames.
Those make me nuts.
Ellie’s big “news” is that she is officially a reader. This is something that she is super excited about. She loves books, always has, and so now that she can start to go through them on her own, she’s thrilled. Last night, I came home with some kind of cold virus. She plopped me on the couch, covered me with a blanket, and sat down with Are You My Mother? . She read me the whole thing, cover to cover. It took her an exceptionally long time, but she stuck to it. So cool!!
We’re getting ready to enroll her in Kindergarten next year. Like most parents, I’m not sure how we got to this point already. The district that we are in right now offers a Dual Language Spanish program at one of the schools and we are fairly certain that this is the program that we will send Ellie to. She would start with 80% of her day in Spanish, gradually moving toward a 50/50 English/Spanish split. We toured the school recently and I feel pretty confident that it is the right fit for her. We were also very pleasantly surprised that the principal made a point to tell us that they are “fully inclusive,” so sending Tessa in a few years is not off the table.
Please let that sink in for a few moments. Tessa. Learning SPANISH.
There is no “no.” There is only “how can we make this work?”
Speaking of Little Miss… we have an annual review coming up on Monday. She is on a roll these days! No, no walking yet. No, I’m still not stressed about it. When she gets too heavy to carry, we’ll have another conversation. Right now, her words and her play skills are totally blossoming. We are still using sign quite a bit, but she is picking up on words and phrases left and right. The very latest is that she says “Cheese!” when you hold the iPhone camera up to her face. It kills me. SO cute.
Her interactive play has also grown extensively. Simple tasks like rolling a ball back and forth or playing peek-a-boo took a little extra time, but we are SO there. She’s gotten quite good at distraction. When I come home from work, my mom always has a good story about how Tessa has used her charm to get out of therapy or even worse, to get out of trouble! In public places, she is a total ham with other adults. This is something she has done for a little while now, but boy, oh boy does she love to wave and blow kisses at all the passersby.
Suffice to say, we’re rolling along now. Good things are on the horizon, but good things are happening now, too. It may feel unsettled, yes, but good.
I haven’t had the opportunity to sync my latest pictures recently. We’re over on Instagram now, participating in the #365ofDisability. If you want to join us, we are @yosoylalay . Lots of cuteness going on over there. 🙂
Happy almost-Valentine’s Day!
Oh mama
Oh mama, you’ve been thrown in the deep end now. You, with that new little baby nestled in your arms, that little button nose popping out from that flat little bridge, you don’t know what just happened to your world. It feels broken, I know.
You aren’t going to believe a word I tell you now, but that little fact never seems to stop us mommas anyway. We’re firmly planted in the After. You will get there. I swear you will.
You can’t believe this has happened in your life, but it has.
You don’t understand how no one knew before… All those ultrasounds… No one knew.
No one knew.
You don’t feel equipped to do this. You tell yourself that this isn’t the life you wanted and you don’t know how you are going to manage.
You will manage… more than manage! You already are. And you will look back and believe me someday.
There will be changes, yes. Detours in the path. New lingo to learn. There is time, so much time. Your life is moving forward, beautifully. It’s too much now, but I assure you, it is beautiful.
There will be days when you will yearn to be treated like every other mom. You will shout from the rooftops that you are “more alike than different!!” You will balk at the notion that you walk a separate journey. You will be fierce.
There will be days when just looking at families outside of this circle will make you sad. Maybe even angry. Your heart will beg for someone, anyone, to acknowledge that this shit is harder than people can possibly understand. It’s nothing like what any of those ‘normal’ families deal with. You will be annoyed.
You own these feelings, mama. They are yours and they are right and you are just perfect. Your child is perfect. You have a new journey, and it will be hers and yours together for awhile, but then just hers and you… you will cheer from the sidelines.
You can, mama. I swear, you can. You will. And so will she.
Crabuary
It has been some time, hasn’t it?
The time of year has been deemed “Crabuary” in our house. January and February blur together in one gray, cold and damp haze.
I get busy at work during Crabuary. Annual summatives are due, last minute evals, kids trying to sneak in a drop in the new semester, course selection and we’re talking about next year already.
Still, we’ve managed to keep our weekends light and fun. Nights are quiet. The kids are growing. Tessa is exploding with words, new ones sprouting every day. I have been told her “receptive” language is weaker… but that seems to run in the family.
I can think of quite a few family members, actually, with weak receptive language skills. Myself included. 😜
Ellie is reading. (Lots!) She has announced that she will not be going to kindergarten in the fall, opting instead to carry on in preschool for as long as she feels like it.
Clearly, we’ll have to work on this.
Until I get time for more detail, here, enjoy some cuteness…
The Church Fiasco
I will admit that I work too hard to keep it all together when I’m in public with the family. Some days are just hard. Whether it’s uncooperative children who don’t have it in them to listen to their mother or a tired and stressed out husband who just wants to be done shopping, I have a ridiculous, visceral reaction to contrary behavior.
I can’t help it, so y’all are going to have to forgive me.
Now, enter Down syndrome.
Let me be very clear – my little sweetheart does not act out because she has Ds. She acts out because she is two. And it’s normal. Some days are pretty rough.
Aren’t they for all of us?
But this is the perception that I find myself fighting, which has now intensified my need to keep it all together. I know it’s not really about Down syndrome. I just really want everyone else to believe me.
Church Sunday started off well enough. Tessa gave her usual hug to Miss Sheila (who is essentially a stranger, but one of her favorite people) and had a nice snuggle with Uncle Don (who she also adores). Then, it got a little hairy.
We sit in the pew directly in front of our Praise Team. John was playing, so it was just me in the pew with the girls. Ellie was, for once, an angel. But Tessa decided that it was time to be free.
During the sermon, it started with crawling back and forth. I tried giving her the Z-vibe, which usually does the trick to calm her. The Z-vibe looks kind of like a purple marker and has a rubber end that Tessa likes to chew on. When it is “on”, it vibrates. She loves it. It’s very soothing.
She threw it.
She threw the vibrating Z-vibe and it landed two pews ahead of us, where the most lovely little family was sitting with their children.
I about died.
The children picked it up, having no clue where it came from, and started fiddling with it, clearly amused that God had sent this little vibrating toy to entertain them. Meanwhile, I’m starting to sweat, wondering how I’m going to survive the rest of service without the dang thing and then ask for it back in a not-awkward way. Meanwhile, Tessa is now rifling through the diaper bag, throwing hundreds of crayons on the floor (ok, like 15) and then I’m frantically trying pick up all the crayons (in my stupid Mom Kryptonite skinny jeans) while keeping her from falling off the pew that she is now racing up and down and Ellie’s getting involved and John is just strumming his stupid guitar and watching helplessly from three feet away and I’m seriously sweating now and about to lose my mind.
And all I can think is, “please, Lord, if the people see this, let them see poor parenting and not a poor mom with her disabled child.”
Because it’s not about the Down syndrome. It’s just my kid, being naughty, as kids do. I just want people to see that.
In case you wondered, we got the Z Vibe back after church ended. The mother is a special Ed teacher and knew immediately what it was (and therefore, thankfully, what it was not) and who it belonged to. Thank God for that.
These boots are made for… crawling.
In case you were wondering, no, Tessa is still not walking. I don’t expect her to in the near future. In fact, I’m not sure that a human being exists on this planet that is less motivated to walk than she is.
No, really.
She can stand. I’ve seen her do it. And she can travel across the room on her feet with very minimal support from an adult. When she wants.
If she wants.
I’m not fretting about this at all, actually. Quite the contrary. Cool as a cucumber over here. No, this is not sarcasm. I know, I know, this is not what one might typically expect, given my attitude in previous posts. One year ago, I was impatient. I will still working on being “ok” with our own pace.
(In this moment, the fact that I was working on it is almost laughable. I can’t figure out why, but right now, not being “ok” with a slower pace seems silly.)
In any case, we have put all the supports in place that she might benefit from. Weekly therapy (which again, is not to speed progress, but to ensure that skills are developed correctly), Spio compression suit and pants, orthotic braces for her legs/feet, the most expensive pair of shoes I have ever purchased (they were 50 bucks… I’m cheap)…. Getting Tessa dressed in the morning burns as many calories as a session with Jillian Michaels.
But I digress.
She will walk, I am sure. She just needs to find the right motivation.
As a side note, we met with our new pediatrician for the first time yesterday. The appointment was great… Except when she asked about Tessa walking. I literally had to bite my lip to keep from laughing when she suggested we try “putting some things in higher places so she has to work to get them.” No shit.
The good thing is that Little Miss is indeed quite little, still under 22 pounds. And, she is also quite cute. Just look at how she charms her way out of walking with her Mimi today:
Girlfriend will get there when she gets there. For now, I’ll just be thankful for the extra arm workout I get from hauling her around. After all, if she walks even half as fast as she crawls, we are in trouble.
Balance
I want both of my girls to reach their full potential.
I want them to have choices.
I see my job as a parent to raise them to be kind, to be compassionate and loving and hopeful. To push limits, yes. To take risks, yes. (Appropriate risks. Let’s not get carried away here.) They should contribute. They should leave their mark.
I want them to soar.
We do not know what either child’s potential may be. We don’t yet know their hopes and dreams. We only know that our work right now is to raise them with the tools that they will need to be all of their wonderful dreams.
There is no harm in feeling that there are no limits on Tessa’s potential. There is no reason not to think that with the right supports, she can do whatever she sets her mind to.
However, there is harm in feeling like anything less than “typical” is not successful and not worthy of praise. There is harm in the notion that if my child does not live a life that is mainstream or typical, that she, and I, have failed.
Right now, I’m seeking perspective and balance. I’m looking for someone to tell me that when she is 27, no matter if she works in a grocery store and lives with me or if she is a high-powered, politically connected self-advocate out changing the laws of the land, she is of value.
I know that both of these paths are worthy.
I’m wholly wrapped up in the mindset that success for her should not be measured by how typical her life is. I know that the only ends that matter are a life filled with love and kindness and humbleness and service. I want her to have all the tools that she needs for whichever path unfolds. I’m content just to love my daughter, however she grows.
I don’t feel the need to justify her existence or prove that she is worthy of life because of how normal she is.
I will push her, yes, and expect that she push herself. We pursue inclusion for Tessa because she has a right to equal access. She has the right to forge her own path and to have choices. She should, just like her sister, be exposed to people with all kinds of abilities and viewpoints and backgrounds. Inclusion is best for all, not just for people with disabilities. I will not hold her back, nor will I let society. I will not tell her she can’t do it, whatever it may be.
I love her, no matter what.
In reality, either child may soar. Either child may flounder. Either child may achieve her highest potential. Either child may not. We can only do our best. I just want to feel that whatever our best may be will be valued and revered by those around us.
Our journey matters.
Two
Two is such a sweet little word. Two. Just say it out loud. Come on, do it. Seriously.
It makes me smile, and so does this beautiful face:
And so, now she is two and we are smiling.
This isn’t an entry about a path to acceptance or how far we have come. It’s not meant to tell you all the wonderful things that she has accomplished this year. I don’t feel like celebrating all the hard work and the progress, I just want to celebrate her and who she is and what she means to our family.
At two, she’s fun and feisty. She loves to say hello to strangers in the store. She throws her arms out when she wants to be held and is crazy persistent with her demands.
Her favorite food is vanilla Oreos, which she daintily holds between thumb and index finger and slowly nibbles away at each night after dinner. One cookie is never enough.
She doesn’t much feel like walking. Crawling suits her well enough for now. She has a great stink-eye when she’s not into whatever you are requesting that she do. The therapists get it often. So do I.
Her enthusiastic “Hiiieeeeeeeee” when I walk in the door makes me grin every time.
She’s upset by laughter still, but calmed by big hugs. She loves to read books and make animal sounds. She gets angry at bedtime. Bright and early in the morning, she pops up and chatters Ellie’s ear off until she gets a response.
She cracks herself up.
She sings. It is the sweetest little sound.
She’s been worth every stretch mark and extra pound that I haven’t lost. Every chaotic mealtime with two small children instead of just one. Every frantic dash to clean up before therapy. She’s worth all of the everything.
And really, all of the everything is nothing compared to our love for her and our gratefulness to be raising her.
Two has come quickly. The other years, I am sure, will be no different. I am just so thankful to have her to say hi! when I walk in the door, to give hugs in the morning, to steal hearts and change minds and to teach her sister (and maybe some others) a little something about kindness and sharing and love.
Happy birthday, Tessa!
A broken musical tradition
So, confession: I 100% broke my annual tradition of waiting for Christmas music until after Thanksgiving.
Sorry, Mom!
It’s tradition in our family (like in many families) to wait until after the turkey. Blame it on the two-sick-kids-mom-with-pink-eye-chaos-at-work-foot-of-snow-storm, but the little voice in my head said, “Girl, you need Mariah Carey, stat.”
And so it began.
For the record, there are some Thanksgivingish songs on my rockin’ playlist. So, I think that excuses my bad behavior. 😉 This morning, this Thanksgiving morning, I’m here… it’s loosely Thanksgiving. Loosely.
I don’t care if the house is packed
Or the strings of light are broken
I don’t care if the gifts are wrapped
Or there’s nothing here to open
Love is not a toy, and no paper will conceal it
Love is simply joy that I’m home
I don’t care if the carpet’s stained we’ve got food upon our table
I don’t care if it’s gonna rain, our little room is warm and stable
Love is who we are, and no season can contain it
Love would never fall for that
We sing Oooo oo oo oo oo oo oooo
Let love lead us, love is Christmas
Why so scared that you’ll mess it up? When perfection keeps you haunted
All we need is your best my love, that’s all anyone ever wanted
Love is how we do, let no judgment overrule it
Love I look to you, and I sing
Let love lead us, love is Christmas
Let love lead us, love is Christmas
Love is Christmas and Thanksgiving, too.
Gobble Gobble!
Yo soy La Lay 