Monday, October 20, 2014

Addison's Surgery

I've tried to write this post no fewer than 4 times. Each time I close the tab, unable to finish. This may be partially due to sleep schedules being all wacky around here (also known as- my office hours.) Or it may have to do with how difficult it is to sum up the experience of this past week. It is behind me, and I am well on my way to blocking out the hard parts. My philosophy on being a surgery mom is- power through- just one step at a time- and then remember only what you want to remember while being overwhelmingly thankful that it is over.

For example- the bowling ball sized lump that appeared in my throat as I walked away from the operating room just having kissed my daughter's limp body goodbye before surgery- I am working to forget about that. Or the inconvenience of living on the Pediatric floor with a cranky patient along with an overly empathetic baby- I will forget about that too. The exhaustion from disrupted schedules and overly tired children- forget, forget. The drive home- wanting to check on her every thirty seconds to make sure she was still breathing- already forgotten.

What am I talking about? Last week Miss Addison had surgery. I have been updating my Instagram account and 2 Facebook pages best as I can- but I feel like the info is all scattered between the accounts. This is my attempt to bring all of the info into one place. Hopefully I will eventually finish this post and finally be able to publish it before I forget it all and move on.

Question I have gotten the most: What surgery did Addison have? She had her tonsils and adenoids removed.

Second question- why? Addison has some lingering pulmonary hypertension, so last month she had a sleep study to determine if the problem with her pressures was happening while she slept. We found out- yes. She has severe sleep apnea.

Third question- where did she have the surgery? Dartmouth. We chose to go 1 1/2 hours away for the surgery instead of having it done at our local hospital because we have transferred her ear and eye care there due to limited doctor options here in Vermont.
So many of you left notes saying that you were praying for her, and I am so thankful. It was obvious that we were surrounded by prayers and uplifted through the entire ordeal.

Addison, Eli, and I headed to Dartmouth last Wednesday morning. They called us on our way in asking if we could come in earlier, so when we got there my half hour of cushion "early" time meant nothing. We ran in and got things started right away which I was glad for because Addison hadn't been able to eat anything since midnight the night before- and her surgery started at 1pm. (Another thing to forget- the pre-surgery starvation while she so sweetly begged for "Toast" and "Cereal" "Pwease, Mommy" #theworst)
It worked out okay to have Eli with me. I was nervous about bringing him (as I posted on fb), but I really had no other choice as he is still nursing and I just couldn't leave him that far away with Daddy for an overnight. A really sweet nurse watched him in the surgery play room while I went back with Addison and held her hand while they put her to sleep. Another super sweet nurse helped entertain him after surgery when I was trying to comfort Addison and Eli decided to start crying too- after he stared at her, super concerned. They let me put a pack 'n play for him in Addison's overnight room.

(sorry for the grainy pic- but I couldn't get over how sweet he was with her. These two have a really special bond.)
So how did the surgery go? Perfectly.

Addison immediately ate two popsicles after surgery and begged me for real food for dinner once she was in her recovery room. She had no issues with getting liquids down or eating. She was quite cranky- but with Mama snuggled up in bed next to her stroking her hair (plus her pain meds), she settled down and finally fell asleep.

That first night of sleeping- I could already hear a HUGE difference in her nighttime breathing. Well, actually it was what I couldn't hear. There was no gasping or working for that next breath. (YAY!)
And then the next morning after she woke up, she started talking so much more clearly! As the day went on, she just kept talking and talking as if it was somehow easier for her now. The surgeon mentioned that there was some extra tonsil material on the back of her tongue that he took off as well. (okay don't tell me if this is totally crazy. It is what he said- I have no idea how common this is.)

No one told me that improved speech could be a by-product of this surgery. Aaron noticed it right away over the phone as well. We are super excited to see where this will continue to go as she keeps working.

She has been healing well, but not without discomfort and some bleeding from her nose (thankfully, it keeps stopping on its own.) We had an ER trip yesterday, and have just been keeping an eye on it all day today. Most likely this is just scars falling off as the healing commences.
All in all- I'm so glad that we made this trip. I'm even more glad that we are now home and well along in the healing process.

Of course the trip wasn't without some drama. The morning after the surgery, I woke up and could barely open my eyes they were so light sensitive. Tears were streaming down my cheeks, but I wasn't crying. My eyes were so irritated and in pain that I knew that I couldn't safely drive the kids home. I couldn't even focus on the surgeon when he came back in to check on Addison. My eyes had been actually bothering me for a few weeks, and I had an eye appointment with my eye doctor last week that I had to cancel because of the surgery. I thought I would be fine, but for some reason I woke up that morning and they were worse than ever.

I was alone with one baby and one preschooler fresh out of surgery. We were an hour and a half from home. Because of course.

Walking down the hallway to retrieve something from the car while pulling the wagon with Eli in it, I just simply prayed "God, please help my eyes to feel better so that I can get the kids home." I stopped, looked up with a squint, and noticed that I was standing in front of an eye clinic. What were the chances?

I didn't want to go inside because it was a highly specialized clinic, and I knew they wouldn't have any appointments, but I was pretty desperate. Long story short- their next appointment was in January EXCEPT for one appointment that morning at 11. I then called my insurance company to see how much this last minute specialty appointment was going to cost me. They said that they go doctor to doctor, not hospital to hospital to determine whether they cover or not. Turns out the one doctor who had the only opening before January- was in network for my insurance even though we were out of state. Um- wow.

This extra appointment added a bit more stress to the whole experience, but I was extremely thankful to get an exam with some special eye drops that immediately relieved my pain aaaand not to go broke doing it.

All that to say, I was able to drive us safely home last Thursday. I am now five days into a long sentence of glasses only, Addison is holding strong and suffering for the cause to NOT have her ice cream in a cone (I know, the injustice). Carter is readjusting to Mommy instead of his solo vacation at Grandma's house, and Eli is rolling with the punches (mostly figuratively but sometimes literally from his brother and sister).

We are ready for a boring week of baby loving. Boring has never seemed more amazing than after a surgery week. Boring. Bring it. #thankful

Monday, October 13, 2014

To The Mom Who Claimed Down Syndrome Abortion Is The Merciful Choice

Dear Mom who posted that aborting your baby with Down syndrome was the most merciful (or kindest) thing you could do for your baby,

I don't write open letters. And I don't comment on other people's business. Because it is THEIR business. Not mine.

And yet here I am. Writing you an open letter about your business. I am breaking two of my rules. Why?

This is certainly not to talk to you about your decision. It is done. Anything I say to heap guilt on you serves absolutely no purpose. I can tell that this was a difficult decision- one that you honestly felt was made out of love for your child. I respect you too much as a human being to bury you in the "what ifs" when you obviously have cried great tears over lost possibilities already.

This is also not to judge you. I am not your judge. Let me say that again. I am NOT your judge- or anybody's judge for that matter. It is not my job to tell if you if you have done something right or wrong. It is not my job to met out sentences or punishments. I am just a broken mother just like you- trying to make the best decisions possible with the information that I have been given.

So why am I writing you?

Because of what you said about wanting to remove the stigma from aborting babies with abnormalities. Because of your loud encouragement out into the world that others should not be afraid to choose the more "merciful" choice of ending the child's life NOW before suffering begins. Because of the comfortable way that you shared your very personal story with the world in a way to tell other women that they too should abort their babies with Down syndrome- that it is a "good choice." Because of your descriptions and bias against Down syndrome that you shared as though they were fact.

I have a problem with this.

Some other broken mother is going to read your post. She has just gotten a prenatal Down syndrome diagnosis. She is feeling lost and vulnerable. She will read your words and then perhaps give into the voice in her head that is whispering "You are right. This baby WILL ruin your family. This baby WILL lead a horrible life. You should definitely get rid of this baby and try again for a 'normal' one. It's the merciful thing to do. This baby would suffer too much!"

And just perhaps reading your post, feeling justified by your post, and letting you make the decision for her will cause her to miss out on one of the greatest gifts that she was sent in this world.

How do I know this? I was once that broken mother with those dark thoughts swirling in my head. I was the mother who cried great tears over how her family was going to be ruined because I was just told that my unborn baby would have Down syndrome. I was the mother who questioned what this would mean for my child. Would she suffer? Was it even possible for her to have a good life? I was the mother who also heard dire predictions from a genetics counselor about my daughter's life potential- in regards to health and survival.

And you know what? My little girl was born with a lot of health problems. She was so, so sick for a long time as her body tried to adjust to this world. I suppose by your definition, she was suffering. That I am a cruel mother for putting her through this.

But by my definition? I was giving her a chance at life. By my point of view? She wasn't suffering. She was fighting. My baby was born with a weak body, but with the strongest spirit I know. She wanted to live. And she showed us this every single day since then as she has continued to fight.

I am beyond thankful that I didn't have your post to hammer in the points that my head wouldn't let go already. I am so grateful that your story wasn't on my radar when I went through that impossible time.

Because having my daughter with Down syndrome has been the single best decision I have ever made in my life. Is our family ruined? No. It is a perfect 3 piece puzzle of two rambunctious boys and a sweet little girl. Is she suffering? Not even a little bit.
 
I believe that God perfectly created my daughter. You saw your son as a mistake. I believe that God has a plan for my life, our family's life, and equally as importantly- for my daughter's life. You decided that your plan was better than God's plan.

I hesitate even writing those words. And I want you to know that I say that with the most love and greatest amount of gentleness possible. Because once again- I am not your judge.

But really, where does your reasoning "I don't want my child to suffer therefore I end my child's life" end? What if your child is diagnosed with something unexpected in a few years? Will you hire a hit man? What if your child is mercilessly bullied in school? Do you wish there was a prenatal test for that so that you could spare your child that intense pain? What if your child is in a car accident and suffers horribly?

The way I see it- our job as mothers is not to spare our children pain or suffering. Life is full of pain and suffering for everyone. It is all around us because that is life. Our job as mothers is to help our children through the hard times. To give them a hand to hold- a smiling face- a gentle touch- a presence that they can count on- a kind word to help through bullying- a persistence to fight through difficulties alongside their every step- a cheerleader to encourage their fight- a love that lets them know that they are our world.

You can post that it was "merciful" to end your child's life before it even started. But I disagree. How about standing by your child through life no matter if life is 2 difficult hours or eighty happy years? Not giving up. Forging ahead. Fighting. Loving.

To all of those other broken mothers with a brand new diagnosis out there reading that post on "mercy aborting" your child with Down syndrome- just know. There are two sides to every story. Yes, by today's standards, you absolutely can abort your baby with Down syndrome and perhaps have people even pat you on the back for your selfless sacrifice. For eliminating "suffering." You can write a long essay about your personal journey- outlining your pain and show the world how you made the "best decision for your family even though it was hard."
Or you could really do the selfless thing and love. You can step out on faith, and give your baby a chance at the most basic of rights- life. You can evaluate what being a mother really means. Does it mean accepting and loving only babies that were in your plan- babies that will for sure be healthy?   Is healthy and smart all that matters in life? Really? Does it mean that the rules of motherhood are different if surprises show up in prenatal testing?
I think that motherhood is about acceptance. A delicate balance between accepting who your child is and pushing her to do her best, all the while loving unconditionally.

So if Down syndrome isn't "suffering"- what is it? What does it mean to motherhood?
After four and a half years, this is what I see Down syndrome as:

It is kisses before bedtime after a long day of adventure. It is holding my hand and then refusing to hold my hand and then holding my hand again as we walk to the car. It is sweet lips calling me "Mama". It is long hugs on the couch while we avoid folding laundry. It is eating family dinners while she asks for "more" and "ice cream." It is a little girl playing energetically with her brothers. A little girl begging to help "roll" out the pizza dough and pie crust. It is taking an exited girl to school who has begged for her aide all weekend. It's talking about her coloring sheet from school and asking her what she drew. It is messes in the kitchen when she and her brother dump a box of cereal from the pantry. It is picking up toys as a family and learning to run the broom and vacuum. It is settling down with a box of flashcards and quizzing herself. It is watching a show and asking for a snack. It is climbing out of her room and sneaking herself in with her baby brother. It is constant pleas for "Papa's House!" It is learning to draw a circle and yelling "I did it!" after using the potty. It is infectious giggles and face swallowing smiles.

Yes, there are tough times- just as there are hard times in parenting any child. But truly, having a child with Down syndrome isn't about the delays, dire predictions, or health problems. It is about the little moments of each day. Loving, enjoying, simply being- whether your moments are a lifetime or merely a few days.

And as a mother of two other children as well- I see very little difference between the 3 in this area. They are all different. They all require different things from me at different times. But the one thing that is constant- that I can count on- that holds motherhood close to my heart- is the love that they all require from me.
Loving my daughter even as I wait in the waiting room to hear if she survived another surgery. Loving my daughter as I pack our schedule full of therapy. Loving my daughter as I take her to school every day even when it is difficult to do with both boys. Loving my daughter when she works so hard to develop her vocabulary. Loving my daughter even when she is stubborn. Loving my daughter when she fights with her brothers. Loving my daughter through the thick and thin.

Because she is worth it. Her fight is worth it. Her life is worth it.
So to you-  mother who chose to end your child's "suffering" because he had Down syndrome- I am so sorry for your loss. Truly, truly I weep for you. I hope you find peace as you continuously struggle with the guilt that you posted about. I hope you find the love of a Savior who defined "mercy" far differently than you did. But I beg of you- please stop spreading "facts" about Down syndrome that aren't true. This is a scary enough subject to many without even more misinformation out there. I don't share my daughter with you to guilt you. I share her with you so you know why I am begging you to stop spreading this "mercy killing" philosophy. It is not mercy. It is not anything like mercy. Down syndrome does not equal suffering. Not at all.

And to those of you who are struggling with a new diagnosis.. Please consider the side of the story where life was chosen. Please consider the option of love. Please. 

Signed,
Another Broken Mother Who Chose To Give Her Daughter A Chance

p.s. it has been worth it. every single bit of it.

Thursday, October 9, 2014

Tips On Transitioning Your Child To Wear Glasses

Today's post is a bit different from my normal, but this is a topic I have wanted to post about for a long time.

One of the things that I get asked most about is Addison's glasses.

People ask what kind they are? (Miraflex)

And if they work well for her? (They do- as long as we get the back strap tightened enough and keep the lenses clean and free of scratches. Note: Get scratch protection. ALWAYS get scratch protection.)

But no doubt the question I get asked the most is - HOW DID YOU GET HER TO KEEP THEM ON? I exaggerated the all caps, but knowing the desperation that I felt the first time around with Addison, I think this is definitely an all caps situation.

So here's the deal. I am going to share our story with this. But to be perfectly honest, this is something that we have struggled with along the way (learning the hard way), so I have a few other parents stories to share as well. So if you are wanting advice and several different possibilities to try in this situation? You have come to the right place.

This is the type of advice I wished I could read when I was in the Ready To Pull My Hair Out I Can't Do This stage of glasses transition with Addison.

First, our story:

Addison initially got glasses at 18 months. And it went something like this: put glasses on her. Oh she's so cute! She took glasses off. Put glasses on her. Oh so cute! She took glasses off. Put glasses on her. Oh! She took glasses off. Put glasses on her. She took glasses off. etc etc etc (for ever on end)

After about six months of this and MANY different methods tried (including a behavioral therapist's help), I gave up. One year later, we discovered that her prescription was completely wrong.

Second go around of glasses for Addison: we started with a brand new eye doctor, a sedated eye exam (you can have this done while your child is being sedated for another procedure…we did her ears at the same time), and an uber cute pair of Miraflex black frames. She still wanted to take them off, but she would take them off after longer periods of time and we taught her to always put them in the same spot so they wouldn't get lost. To break her in, I would have her do an activity where she saw the benefit in them- such as watching a Signing Time show on the TV up on the wall soooo far away from her. But then to be honest what really helped us was going to school and her having someone else tell her to keep them on. Her aide and teacher are both truly fabulous. This was something that Addison learned MUCH better from constant backup from someone else (who also wears glasses) rather than just mean ol' mom who tried to force her to wear glasses that were completely wrong the first time around.

So my advice summed up:
1. Make sure the prescription is right
2. Make sure the glasses fit well and are scratch free
3. Give her incentive to want to wear them (AKA put them on to watch a show she loves)
4. Have backup and a one-on-one aide who plays bad cop with you on this.
5. Just keep putting them back on. Consistency is key.

Okay, I admit. That's not the most brilliant advice (thus why it has taken me so long to answer this question the hundreds of times it has been emailed to me.) Let's hear from some parents who figured this out so much faster than I did…

(by the way, you will read about varied experiences and thoughts about different brands. I love that glasses brand isn't a one size fits all situation- even when it comes to kids with Down syndrome.)

Here is Tara's story from Stoll Life:

Down syndrome or no, Olivia ran a pretty good chance of needing glasses because her dad and I are both cursed. So when Liv was a little more than a year old, we embarked on a journey for wee stylish specs. Difficult task. But we tried a couple different styles from Specs 4 Us (no doubt you’ve heard of this line designed specifically for our kids’ unique needs), and we picked an adorable pink pair. Choosing cutie glasses is one thing; keeping them on is quite another task. But we quickly discovered Invisiroos. Invisiroos is a glasses retainer that the farm girl in me can only describe as fishing line hooked to magnets. It loops and connects to each temple, then hooks in the back with the magnets. Simple? Yes. Invisible? Nearly. Durable? Yes. Effective? Absolutely. Invisiroos, for a reasonable price of about $10, has more than likely saved us from replacing Olivia’s glasses on several occasions. And I love that it’s not sporty, bulky, or obnoxious. Because nothing should distract from Liv’s cute frames!
(Deanna here again: I have since ordered Addison a set of these. Tara says she thinks they will work well on Miraflex, and Addison's back strap tends to get stretched out. A good fit is key. Can't wait for this to come in the mail!)

Olivia modeling her specs:

Here is Bronwyn's story from Needful Nybbles (super cute necklace line):


I first noticed Ryder’s eyes crossing while sitting across the dinner table. Mostly it happened when he was tired and it seemed to be just his right eye. We were a few months away from his annual eye exam so I decided to keep an eye on it. When we went in, sure enough, he needed glasses to correct the crossing. He got them on his fourth birthday. 

I had visions of this new, expensive, accessory being smashed into tiny pieces or thrown out the car window. But his doctor assured me that most kids wear the glasses as they can suddenly see better. Fortunately, this was the case with Ryder. As we left the office, Ryder was noticeably more alert and investigative of his surroundings. The big cheesy grin on his face spoke a thousand words. He had no problem wearing them.

Initially, we got him a Miraflex and a 'nice' backup pair by Converse. We ended up returning the Miraflex; with his shallow nose bridge and they with no bridge support, they were a poor fit. They sat so close to his eyes that they constantly smooshed his eyelashes and the strap in the back twisted the glasses off his face every time he turned his head. The replacement pair were also by Converse. 

Ryder does very well with priming and he takes great pride in being independent. Being a ham and the center of attention were qualities we took full advantage of. We constantly complimented him on his glasses. We heaped observations of how much he could see better with them. We taught him that they were HIS glasses and HE was in charge of them. We practiced putting them on and how to take them off and how to fold them up. We talked constantly on where the best places to put them down were: in plain sight on top of something. Tables, book shelves and counters were ideal spots.

He’s really good at it. He is very possessive about his glasses and doesn’t like people putting them on or taking them off. We take them to get tuned up every month or so as the joints get stretched out and screws loosen. The frames are replaced yearly as his prescription changes and that's about the life expectancy for frames for a 5 year old.

On his fifth birthday and next annual exam, he was able to follow the doctor's directions and give feedback so his prescription became much more accurate. And his world got even more clear. All in all, our journey with glasses has been quite successful and I am so proud of him.

Watch. Now I've jinxed myself.

Here is Belarmino and Mary Ann's story from t21Daddy2011 on IG:

Luke has only been wearing his glasses a few months now. I would say it's been about 4 months. Luke will be 3 on12/9/2014

Starting use of glasses for Luke at 2.5 years old was a little scary at first. Luke was already very much aware of his senses and was not very fond of wearing hats or masks.  He also didn't like for us to brush his hair, so we were worried that he would immediately remove the glasses.  Once we found out that he was near-sighted and with an astigmatism on his left eye while far-sighted on his right eye, we were hoping that he would welcome the glasses--being that he would see much better.  We found this to be true. We also got flexible MiraFlex glasses with a headband to hold the glasses snug around his head. That also helped. Cleaning of his glasses has also been important. We place his glasses back on while he drinks from his bottle so he doesn't pull them off at the onset. Once they are on, he tends to not grimace. We also remove them right before bed and place back on him the minute we change his diaper. Not waiting helps let him know that he HAS to wear them. There are days when he has allergies, and he rubs his eyes. Those days, we know we may find the glasses tossed on the floor. We simply place back on him without a fuss, realizing he has an excuse. 


And last but certainly not least, here is some advice from an unnamed source:

 Arm immobilizers. If your child is too young to understand that these glasses things can help them see better? (As Addison's eye doctor told me more than once- her world is only an arm's length away. She doesn't realize the benefit to seeing far away yet- this was at 18 months.) You can have them wear these for a couple days so that your child cannot physically remove their glasses while they get used to the new sensation on their face. Parents who have used this method say that all it takes is a couple of days and then the child never touches their glasses again. When you are talking about learning being negatively impacted because they aren't properly equipped with their glasses? This is a very practical option. I wish I had started with these! (after I got the right prescription…of course)

So there you have it. Some advice on how to help your child with Down syndrome learn to keep their glasses on. I am very thankful for these other parents sharing their stories. I have found that just with glasses brand, there is no one size fits all way to deal with kiddos with Down syndrome learning to wear glasses. I thought that by showing varied stories, one of them might be the one that helps you. (-; 

If you have advice on this subject- PLEASE leave it in the comment section. You never know who is out there right now in the Ready To Pull My Hair Out I Can't Do This glasses transition stage. For some kids this might be an easy transition. For others? (cough cough Addison) Goooood luck. (-; No seriously. Good luck.


Thursday, October 2, 2014

What Does Down Syndrome Awareness Mean For Carter And Eli

Something in the dynamic of our day-to-day has slowly shifted over the past few months. Something magical is being created here at our house. Something I have dreamed about and hoped for but was too afraid to breath into the air lest it was asking for too much. But it is here. And it is happening. What is this magic? Independent play times 3. 

We have slowly emerged from new baby survival mode into a chaotic sort of organized, awesome, bonding, heart-bursting-with-love family time.  Eli used to require me every second of every day. Now? He wants to play with the big kids. Constantly. So they cluster themselves into the same room (or corner of the room) and amuse themselves amongst themselves. The way they look at each other, laugh together, pass toys between them, and playfully tackle each other- I cannot get over the bond that grows stronger by the day between the 3 of them.
I love, love, LOVE this. Sure, there are moments of bickering and crying. And I always keep a very close watch on them in case someone is playing too roughly with the baby. But the general overall census in my house right now is of noisy play full of laughter and camaraderie. Times 3.

 This morning I was folding laundry in the Living Room while the baby had play time in the crib in the boys' room (this is not where he sleeps- just a point of containment when necessary.) Addison climbed into the crib to read her book to the baby and Carter planted himself on the train table right next to the crib to read his own book. I heard piles of giggles rolling out of the room, so I went to investigate. Carter yelled "The kids are in my room, Mommy!" They were just- being together. Reading books, nestling into each other (Carter climbed in the crib too), grabbing feet, laughing when it tickled, sharing toys- they were playing so beautifully together.
 As I stood there, a draped, unfolded towel in my hands, I really thought my heart was going to explode. I am so thankful that they have each other. And I am so thankful that I get to be their mother.  But this got me thinking about Down syndrome month. Watching the boys play with Addison- it made me think- what does Down syndrome awareness month mean to Carter and Eli? What does October mean to the two boys playing so innocently alongside the little girl with an extra chromosome?
With a smile, I realized- nothing. It means absolutely nothing to them. Addison isn't a poster child or a cause or something they next to "accept." She is their equal; their playmate; their sister; the one who successfully pulls off heists with them. Addison isn't on an inspirational poster in their room. She is the one who helps them tear whatever mommy puts up on their walls- off.
 When I thought about how they all love each other- without them even realizing that this could be called "love", I felt a pang of I don't even know what. Jealousy? Happiness? They don't love Addison in spite of Down syndrome. They love Addison. Period. Down syndrome is a part of who she is- a part of who they have always known her as. They love Down syndrome without even knowing that its a thing. A "thing" that someone else might fear. A "thing" that some would say will come back later in life to be a burden. Carter and Eli don't care about any of the stigmas or naysayers. They only care about their sister. The one who lives in the pink room next to theirs. The one who has the glasses they like to steal. The one who rides in the blue wagon between their respective red and orange ones. The one who might share cookies with them or steal them depending on her mood. The one who has the best laugh. The one who they beg for the minute after we drop her of at school. The one who equally joins in the "climb on Daddy!" routine that happens as soon as Daddy gets home.
 I don't know if this will someday change. I don't know if middle school and high school will be extra difficult for them because Addison is their sister. I just don't know. But I do know this- these boys love her, wrestle her down, steal her books, hold her hand, eat their meals alongside her, splash in the bath with her, give her hugs like no one's business. My 3 children are not 2 typically developing and 1with Down syndrome that they somehow put up with. My 3 children are 3 children. Equals. Friends. Siblings. There is no distinction between them. They tumble through their days having constant moments of sibling bond that know nothing of Down syndrome or what it's "supposed" to mean.

 I wish it could be like this always.
 Addison just started taking the bus home on Tuesdays and Thursdays. Someone asked me "You mean a short bus?" and my heart sank just from the sound of those words. In my mind those words have such a stigma and hurt to hear. Does Carter care that Addison's bus is short? Not even a little bit. He runs beside me with so much excitement his entire body is shaking. "ADDISON IS GETTING OFF OF A BUS! A BUS MOMMY!" LOOK A BUS! CARTER WANT TO RIDE ON BUS TOO!" He wouldn't care if the bus was short, long, fat, skinny, round, or purple. All he cares about is that it stops at OUR house and HIS sister gets off of it.
After bus drop off today, we were all jumping on the trampoline together. Carter jumped high- while running big circles around me and the baby- and Addison. She jumped too (or as she said "BOUNCE!") but nowhere near as vigorously as he did. Carter smiled at her and just kept doing his thing while she did hers. He doesn't care that she can't jump as high as he can. He was speaking all sorts of words, describing to me his jumping and what he saw and then telling me when he got hot and thirsty as a result of his workout. All Addison said was "BOUNCE!" over and over again. Did he care that she wasn't talking as much as he was? Nope. 

 (I will say, the one thing he REALLY cares about is that when she breaks rules that she gets punished with the EXACT same discipline and consistency as he does. He tattles on her often and yells with glee when she gets sent to time out.) But back to the issue at hand...

When will he realize that her bus is 'short'? That she isn't jumping as high as him because she can't? That she is quiet because she struggles to talk? And talks "different"? That she isn't like other sisters? That she won't always be able to keep up with him? That she has Down syndrome? And Eli? Will he care the same as Carter or in different ways?
I don't know. But I think when the brothers realize that their sister is and always be "different", they will have years and years of loving behind them already. They will accept the label along with the person they already know. Addison will define the label for them- not the other way around. "Down syndrome?" will mean "sister" and "Down syndrome awareness month" will mean "Month month." Aware of what? Down syndrome is their normal.
I'm jealous of my boys. I think that growing up with Addison will teach them a lot about compassion, kindness, and patience that they wouldn't get otherwise. Things that they will learn without even realizing it. Having Addison as their sister will make them into better people. I'm convinced of it. Sometimes I add in my mind "if I do this mother thing right." But then I think- it's Addison. Even if I totally screw this up, I think she is quite capable of teaching this to her brothers all on her own. 
As much as these toddler/preschool years are incredibly difficult, I see such hidden treasure in the innocence here. The ability to accept each other with no reservations- no fear. The ability to play without modifications, labels, or judgement. Sometimes I want to freeze in this phase forever- where Addison is in a cocoon of love, mushed between her brothers who don't know any better than to just love her- fiercely. Her entire world is a safety net where she is treated like the princess that she is. Her existence doesn't go beyond who we define her to be- a beautiful little girl. When Carter grabs for her hand, when Eli swats at her hair, when brotherly kisses are tenderly pressed against her cheek, when chubby arms reach for her, when lips turn upward in a smile when she is around, when laughter abounds in response to her own- she is their sister. Nothing else.
Every day I pray for my boys to grow up to be men who will continue to love her and achieve a rare kind of gentleness as a result. Who continue to protect her- even when they might look uncool or strange themselves because of it. Who defy labels and judgement and continue to love- fiercely because she is their sister. Not because it is their responsibility or burden or sad lot in life- because they love her so deeply they can't possibly imagine any other way of life- in the happiest, most joyful sort of way possible. I pray for Carter and Eli to continue to see Down syndrome awareness month as "Month month" because it doesn't phase them. It is a part of their sister and a part of their lives. It isn't necessarily good. It isn't bad. It just is. I pray that they won't let stigmas of the world around them recolor the things that their childhood has painted so beautiful for them- minute-by-minute, pantry raid-by-pantry raid #chocolatehunt, afternoon of play-by-afternoon of play. They are the same. They are 3 people. They are equals.
I had to learn all of this the hard way. I had stigmas ripped unmercifully from me and a label thrust upon our family that I had always associated with sadness and grief. I had to take the difficult path to learn what love really is. I had to cry long and bitter tears over the loss of the life I thought I wanted before I realized that the one I got was so much better. I had to picture a gloomy future before I started living my actual future full of happiness and joy because of Down syndrome. My boys? They were born into acceptance. They never have to go through what I went through. They were born loving their sister. I am so thankful for this. I think this is one of the greatest gifts Addison has given them- not just learning to accept difference- learning to LOVE difference. I hope this never changes. Loving difference has changed my life dramatically. I can only imagine how much better it would have been had I learned this so much earlier and what this will mean for my boys to have this gift from day 1 of life.
I love these children- unconditionally. They love each other- unconditionally. (And of course Daddy is in all of these mixes as well.) I love that they have each other- that we are a family. I treasure these sibling bonding moments more than I can even express. I am taking mental snapshots and tucking them away to bring back whenever I need to re-live the love that I am surrounded by right now.

What will this look like in 10, 15 years? I don't know. But we don't have to tackle that now. We only have to love today.

Wednesday, October 1, 2014

It's Down syndrome awareness month!!!!

It's October!

Around here this means such glorious fall foliage that it makes me want to sit in front of a wood stove while wearing flannel, chugging straight maple syrup, looking up apple and pumpkin recipes on my phone, while resisting the urge to turn on Christmas music. Oh- and take cute pictures of my kids frolicking n leaves. This is a must.
But over the last 5 years, October has gained even more meaning around here. October is Down syndrome awareness month.

If you look through my past archives, you will no doubt notice a strange pattern. I used to post about Down syndrome a LOT. like a lot a lot. But as time has moved on, this has changed to me posting as more as a mommy blog with 3 kids close in age.

Probably because for me Down syndrome at first looked like this:
and now it looks more like this:
(this picture was snapped yesterday…while we were frolicking in the leaves.)

To me it makes perfect sense that I no longer feel the need to post a ton about Down syndrome. It's just not something that we think a lot about during our day-to-day.

But it is October awareness month. And in celebration, I will try to pull myself away from the flannel-wearing-apple-pie-making stuff and post some more about Down syndrome and what it means to us now. And also post maybe a bit more about our life now and how Down syndrome impacts our family dynamic.

I don't know if you have noticed, but my posting as gone waaaay down over the past few months. This is because I have been working diligently on a much bigger project regarding Down syndrome awareness that I can't talk about yet. Hopefully soon. (I know, I am such a tease.) But I say that to promise you- you will see more of me around this month. It's Down syndrome awareness month- after all.

Oh yeah, remember the days when I used to post every single day of the month for awareness? (Picture me rolling on the floor laughing hysterically while clutching my flanneled sides.) Yeah, that is so not happening this year.

BUT, I do have several very special posts planned for you. Stay tuned. Come celebrate with us.
To kick off the celebration: here is my post that Huffington Post picked up last week (in case you haven't already seen this): I Won't Let My Daughter Be Defined By A 'List'

Happy Down syndrome awareness month!