To the Mama with the New Diagnosis

Hi Mama,

So, your kiddo just got quite the diagnosis, huh?  A disability.  Something you never think will happen to your family.  I’m guessing you’re either crying non stop, or numb and feeling nothing at all.  And whichever it is, the other is bound to happen any minute now. I remember those days well.

I could say a bunch of positive things: “Keep your chin up…” “God doesn’t give you more than you can handle…”  “At least now you know what you’re dealing with…” but I know from experience that it won’t matter.  Everyone needs to deal with news like this in their own way, and at their own pace.  So here is what I will say: Dude…that sucks.

That SUCKS.  No one asks for this.  No one asks for near impossibility in what should be simple developmental milestones, for never feeling 100% a part of the group, for having to refigure every aspect of the life you had imagined.  So take your time.  Cry, scream and curse.

But here is my bit of positive: you will be happy again.

I know it doesn’t seem like it right now.  I very clearly remember thinking I didn’t know how I would ever feel joy again; I couldn’t imagine, with all the extra challenges we were going to face, how the enormity of those challenges wouldn’t cast a shadow over every activity in every minute of every day for the rest of my life.

But the anger began to ebb.  Not all at once, it was quite the roller coaster – but you can’t have peaks without a few valleys.  Eventually, the roller coaster became a nice plateau, with the intermittent dips that are to be expected.  Then one day, I woke up with that comforting feeling of “happy” that I used to take for granted.  It was nice to feel that again.  As they say, life goes on.  And as I say, receiving a disability diagnosis for your child is a life changer, not a life stopper.

Figure out how to move forward.  Do all the tests and prioritize your therapies.  Ask all the questions, get mad when no one can give you a straight answer, and then do what you think is right.  And figure out how to still be you.  What fills your bucket – your interests, your marriage, your friendships, your career (or not).

I read and run.  My husband and I are very active with our kiddos, and in supporting each other.  Life is busy, but I have a solid core group of friends I draw immense strength from (thank goodness for text messaging).  And I found a company that keeps me challenged and energized while being flexible enough to allow for the things my family needs.  These pieces didn’t all fall into place at once, and will need nurturing and adjustment, but they did fall into place.  They will for you, too.

That doesn’t mean to say something won’t happen to throw all this in a tizzy next week. And by no means do I want to imply that this will be easy.  Just last night, I read my daughter’s most recent preschool report; the most positive thing in there was that she is steady when she sits on a chair.  That’s fine.  While seeing the words on paper is jarring, I need those reports to be accurate.  Today, I will go in and ask how we work to make it better.

So Mama, take your time.  I don’t see any point in rushing yourself through what is a necessary adjustment process.  Be mad and confused, be lost and unable to understand, hate the world.  Just remind yourself, in the moments when you can stomach a bit of positive, that the light in your life won’t always be that dim.  You will be happy again.

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Special Needs Parenting: When Number Two is “Typical”

You walk into swim lessons.  The air is heavy with the smell of chlorine and a cacophony of sound; children laughing, splashing, a few crying (oops).  Yet you don’t worry that the little person whose arms are wrapped around your neck is going to let out a frustrated scream, overwhelmed by her environment.  You sit and wait for your turn in the pool, your little bundle of love curiously checking out her surroundings while seated comfortably on your lap.  As you enter into the water, you say hello to the instructor without contemplating if you should explain to her right off the bat why something seems a little “off,” because you know she’s going to wonder anyway.  As the class gathers and makes introductions, you and your babe join in, and you don’t feel the need to translate her words so the other parents know she’s smart too, just like their little ones.  And as you all start to sing the opening, splash along song, you relax, and find yourself thinking “is this what other parents feel like ALL of the time?!”

And you are instantly hit with a wave of guilt, like feeling this way means you are doing wrong by your other bundle of love.

Welcome to special needs parenting: the second, typical child edition.

My first child has a disability.  My second does not.  I’m incredibly proud of both of them.

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Even though our daughter’s diagnosis was not inherited, I was worried when we got pregnant again.  I’m guessing many parents worry to some extent, but we had the extra layer of having unimaginable happen once, plus I was older. I remember telling myself “well, if she isn’t normal, at least they can be unique together.”  Because a typical child was what we were expecting, but was a bit scary, as well.

How long before little surpasses big?  How do I explain when little someday asks why big can’t do what she can do? How do I comfort big when she is envious of athletic ability, academic opportunities, party invites, etc. etc. that she will very likely watch little partake of from the sidelines?

My first question was answered quickly.  It took us seven months to teach big to roll over.  We worked tirelessly with physical therapists, had the couch cushions rigged up all sorts of ways to support some muscles and leave others to learn to do the work.  Little just did it one day.  I think she was a month and a half.  I remember just staring at her, thinking “is it really going to be that easy this time?”

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I struggled the most with this as little started learning to talk.  It was SO early.  Okay, it actually was a little early – but given my past experience, it feels like she exited my uterus and said “What’s up Mom?!”  I actually found myself wishing she would slow down, because the more she talked, the more it emphasized how behind big was.  One day at speech therapy, I wondered to big’s therapist if little would surpass her.  She responded, “Oh yeah.  Probably soon.”  Her frank answer forced me to rip the bandage off – no point in pretending it wasn’t going to happen.  And it wasn’t fair to little, to be afraid of, instead of celebrating, her accomplishments.

The other two questions are yet to come.  It brings tears to my eyes just thinking about having to answer them.  But as of yet, these sisters don’t know anything is different.  They know one loves Paw Patrol, and the other prefers nursery rhymes.  One is all about trail mix and the other can’t get enough macaroni and cheese.  They fight over toys, but couldn’t be better friends when bedtime, aka “run around giggling like crazy while mom and dad try and get us in pajamas” time comes.

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I’m enforcing the family togetherness aspect.  Mandatory family fun time in the evenings, taking turns doing what each other likes – normal family stuff.  Little spends a lot of her life taking big to appointments, so we make sure they both get one on one time with each parent, and get to try new things.  This fall, little will take swimming lessons with Daddy, and big will try out dance lessons (OMG the cuteness is going to be unbearable).

Scary questions will come and go.  I’m sure I’ll have some in five years that I couldn’t even fathom now.  Love and learn, love and learn, is how we will continue.

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The Day I Called Someone on using the “R-word”

I’m a bit insecure about this post.  I don’t like sounding preachy, and as I think about what is coming, I don’t think there is any way for me not to.  So thank you for bearing with me; I appreciate you putting up with a little bit of preach.

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Source: http://www.lionheartinnovations.com/tag/retard/

I used to use the word “retarded” as part of, I guess, slang.  That stopped abruptly when I had a child with special needs.  I’ve had others around me use it since then; they catch themselves, apologize, it’s awkward for two seconds, and we move on. I’ve seen people I’m friends with on social platforms use it, and depending on my relationship with them, I might reach out and say “hey heads up, maybe a different word.” One day just before Christmas I had an experience that was different.  This time, it was someone who didn’t know my situation.  It was the woman who cuts my hair.

It was the day after the Ms. Universe debacle. We were discussing how horrible the members of that situation must feel, and laughing because it actually got people talking about the Ms. Universe pageant again.  We were chatting happily when this phrase came out of her mouth: “her answer didn’t make any sense and I thought she sounded retarded.”

My heart jumped the way it does every time I hear this word.  My mind went into an internal civil war…

Do I call her on it?  I know she wasn’t trying to offend me.  

That doesn’t make it right.  Use of that word is hurtful.

But it’s going to make her feel bad!  And besides, she didn’t “mean it.”

Maybe she’ll use that word around someone impressionable and
they’ll start using it too.  I’d better tell her.

I don’t like the use of that word.  So why the internal back and forth? Because, I get it.  Many people who use this word don’t mean to be harmful.  Most don’t give a second thought to what it really means.  Because what it really means, isn’t an insult.  It’s a diagnosis (and actually not used that often anymore)…and the way that term is used in diagnosis is not the same as the way it’s used in slang.

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Source: http://mic.com/articles/85615/when-is-it-okay-to-say-retard-check-this-chart#.5CIzwt0P5z

But unfortunately, some people make fun of those with disabilities in really mean ways.  Sometimes because they’re mean people, and sometimes because they don’t understand how cruel their actions are. Kids go through the McDonald’s drive-thu impersonating someone who can’t talk quite normally.  A group of friends call guys they know and pretend to be a special needs person asking them on a date. I was witness to – and laughed at – both these situations in my younger days.  Now I ask myself, what if one of those guys had a sibling with special needs?  What if the person working at that drive-thru WAS a person with special needs? These memories haunt me now. At the time, I just thought it was funny.

I know most people don’t actually mean “a person with cognitive delay” when they use the word retard.  But if we don’t tell them, how will they ever know they’re causing pain?  So I decided to screw the very Minnesotan fear of bringing up an uncomfortable subject – I mustered my courage and spoke.

“Can I tell you something, and I don’t want you to feel bad?”
“Yes, of course!” Her body language changed; she straightened up, took her eyes off my hair and made direct eye contact with me in the mirror.
“I have a special needs child.”
—-BLANK STARE—
“The r-word.”
“OH!”  Her hand snapped up to her mouth, her eyes wide. “OH, I’m so sorry!!  I didn’t even think about what I was saying!”

We recovered from a few moments of awkwardness and continued about our business.  We had a brief Merry Christmas hug goodbye and I went back to work, hoping she wasn’t being too hard on herself, but happy that I’d spoken up.

The next day, I received a text from her.  “Hey Kathleen!  I know you said it wasn’t a big deal but I wanted to apologize again for what I said yesterday.  I’m so glad you said something because it really made me think about it and be aware of the effects.  Thank you and again I’m sorry.”

That she was texting me 24 hours later told me she was still thinking about it – and while the whole reason I spoke up was because I want people to realize what this word means, I didn’t want her to dwell on it.  I responded immediately, telling her how much I appreciated how thoughtful she was about it, and that I thought she was a lovely person. Which I do.

So the next time you hear the r-word (or, for that matter, any other pejorative once used to describe a person), catch yourself. Think of me and my stylist friend.  Yes, you and I both may have grown up thinking that word was cool or ok to use.  We also thought that rolled jeans and Zima were cool.   Now we know better.

(Thanks for your help Laura :-))

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The Things Teagan Taught Us

When I wrote about the cookies, my friend Becky commented on how Teagan has opened her and her family’s eyes and hearts.  It got me thinking about everything I’ve learned being a special needs parent that I wouldn’t have otherwise.  I could talk all day about these lessons – but thought it would be more fun to hear from people with differing levels of association with special needs families.  So I did some asking around – here are a few of my favorites.

The question: what has having someone with special needs in your life opened your eyes to or made you realize that you hadn’t before?

“It has made me grateful for the little things; things you would just expect a child to do can really be milestones.”                   – Maryellyn, Grandma

“Before I knew Teagan, I naively thought of a special needs child being completely different from a typical child, and I think a lot of people think that way.  I’ve realized she has a very similar personality, likes/dislikes, attitude, etc. as my own kids.  ”                                      – Morgan, neighbor

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“I’ve learned that parents of kids with special needs still like to talk about every day kid stuff.…when to switch beds, potty training trials, how to overcome picky eating, etc.  In other words, kids with special needs are, well, kids.”                                                                            – Laura, friend

“I’m not that important.  Sometimes at the grocery store the baggers are men and women with special needs.  I used to get frustrated having to wait for them to bag my groceries. But you know what?  My life is not so busy or important that I can’t take that time to chat with them or ask them how they are doing.  Maybe it will make the people who love them so happy that someone took the time to say hi.  Maybe it will make their day.  It actually makes mine.”                                                  – Tracie, friend

“I appreciate life so much more and see that people with disabilities can really be angels on this earth showing us the true meaning of life, if we let them! Acceptance, love, community,strength and faith…  these things matter!  Not whether you buy a house, it’s size, your car, your job, your weight, your looks.  If you can see past all that, you can know real love, experience true friendships, the simple joys in life.  We should look to those who accept their challenges head on, or are different than everyone else, as inspiration to be more like them!!”                – Lisa, friend

“I want to help and have so many questions, but sometimes the biggest help I can be is to be a friend and not ask them.  Because sometimes the parents need a break from it.”           – DeAnn, a friend who is also an educator

“So many kids with special needs are incredibly happy and at the end of the day, they want to love and be loved, the same way all people do.  We get lost in material items or even accomplishments sometimes, thinking “If I just had that one thing…” or “If I could just do this…I’d be happy…” But I think my time with kids with varying learning needs has taught me that they love and want to be loved just like anyone else and can be extremely happy.”                 – Amy, friend, cousin by marriage, also an educator

“In the past I was ignorant in the use of words.  Not realizing that they can be hurtful when used incorrectly.  Also, I now give special needs teachers and families so much respect for the work and care that they give; I see how much work is involved in each goal and accomplishment.”  – Jason, neighbor

“Kids don’t make the rigid judgements we do.  There are children of varying skill levels in my daughter Maddy’s class.  I’ve tried to encourage her to be accepting, and even more so to appreciate the things that come naturally to her.”                                                                                  – Becky, friend

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“I’ve learned not to place limits on anyone. I have an Uncle who has special needs. Troy can be sneaky to get some things he wants – obviously not always a good thing – but it taught me he is a lot smarter than we sometimes give him credit for. I’ve also learned to SMILE. I don’t know what it is, but when Troy smiles big, everyone smiles! I’m not sure if it is because he is a pure soul or that he exudes so much happiness when he smiles.”                                                                        – Tiff, neighbor

And the one I’ll leave on comes from Uncle Jeff (my brother).  He said “I have to admit, I never really thought there’d be someone in my family with special needs so it was something I never really thought about, but then it happened.”  Word.  One of the biggest lessons I’ve learned is that it (whatever “it” is) CAN happen to you.  So be kind.  Shove it all in there – your heart has room.

He also said “I love my little Teags very much”  – I agree with him on that point too 🙂

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Special Needs Parenting: How I Feel When You Brag About Your Kids

I recently asked friends and blog readers if they’d be comfortable sharing some questions they had for someone in my situation, but might be a bit uncomfortable asking.  The question that was by far the most asked, comes from a very kind place – and actually wasn’t one I had expected:

“When I talk about the successes of my (typically developing) child, do you wish I’d stop?  Does it get to be too much?”

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My girls with the kiddos of some of my besties.

To put it very simply: no.

I might get a little jealous sometimes. There is no denying that. But I would be far sadder to find out that you weren’t sharing the joys of raising littles with be because you were worried about making me feel that my family wasn’t up to par.  I too am very proud of my daughter(s) and like to brag about their achievements. And besides, I love your kids.

Okay, maybe I don’t even know your kids – but if you are a friend of mine, I immediately care about them and want them to do well by association. If you aren’t a friend of mine, I still care about and want your child to be successful, because children are awesome. Children are sweet and innocent until the rest of the world gets a hold of them. Children are a product of the environment we create for them.  Not to get all Whitney Houston on you, but children are the future.  We live in a world where people do a lot of really awful things to each other, and the only way to escape this is to raise human beings who are kinder and wiser than ourselves.

This question is tough, because the answer might be very different based on the child, on the parent, on the family’s position along the journey toward acceptance.  It even arises among those in the special needs community – I have been in meetings with other parents before, to look across the table and realize I’m venting about my daughter’s slow speech progress to someone who has never heard their child utter a single word.  We all have different struggles.  My advice is to know your audience – if they aren’t the open book type, pay attention to their reactions and it will probably be pretty clear whether or not they want to hear more.  If they are a close friend, just ask – I can only speak for myself.

So please keep sharing stories of your child’s successes with me – I want to hear how they are saying full sentences at one and a half and how they were potty trained in one weekend. I hope your child loves to learn.  I hope your child is caring.  I hope your child is happy and considerate and open minded and accepting of other people.  And I hope they are so smart that they change the world.  Who knows – maybe they’ll even figure out a cure for trisomies.

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Fun at the park with friends.

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What are the Uncomfortable Questions?

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I have a neighbor who thinks everyone is on this earth for a specific reason. While I’m not sure I agree, I do appreciate her outlook  – and that she was willing to tell me what my reason was 😉 My blog. 

It used to be a lot easier for me to write. My emotions were totally out of check, and writing gave me a way to deal with them. I’m thankful I don’t feel as lost as I used to, and want to use RockingLion as a platform for broader conversations about living with special needs (although I’m sure there will still be the occasional emotion-riden post ;-)). Why do I want to do this? Because people are afraid of things they don’t understand. So if I talk about my family’s special condition, how our life is a little different, then maybe people will understand a little bit more. Maybe they won’t be afraid. Maybe the next time they’re at the playground and see a child who is a little bit different, they’ll think “I bet that kid is like Teagan – I bet they like to play and make new friends.”

Okay, so to get to the point: I’d like to know what people want to know about. What are the questions you have but are uncomfortable asking. I’d love it if you’re willing to share!! Comment, or send me a private message via fb if that feels more comfortable. I’ve never been insulted by a question – assumptions, yes, but never a question.

In my attempt to get reenergized about blogging, I’ve asked a few of my besties the question I just asked you. A few examples they’ve given, that I’m excited to write about at some point:

  • When I talk about the successes of my typically developing child, do you wish I’d stop?  Does it get to be too much?
  • How do you want me to talk to my child about yours?
  • Do you like people asking about how therapy is going and where she is on her disabilities?

Have any to add? If so, I’d love to hear from you!

Elphaba, Attitude and a Glass of Water.

“Something has changed within me…something is not the same.”

Okay okay, enough Elphaba – we’re not here to to quote musicals (although that sounds like a fun blog post, amiright?!?).  I have been feeling a change lately.  I’m sure it will be ever evolving, and that I will experience changes like this in good and bad ways for the rest of my life – but just for now, at this minute, I’m pretty happy about it.

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The change is about anger.  When I guest posted on DivineintheDaily.com for the “Special Mamas” series about being mother to a child with a rare genetic disability, my post was riddled with anger and doubt.  I’m not sure if writing that piece was a turning point, or if it is just coincidence, but lately I’ve been seeing glimmers of light through The Shadow that has lain over me since Teagan’s diagnosis.  It is becoming clearer that way I feel about the struggles our family faces is something I have some what of a choice in.  I can’t change her chromosomes, but I can change the attitude I approach the situation with.

I know my life will continue to be an emotional roller coaster, but I’m going to enjoy being at one of the peaks for a while.  When I mentioned these thoughts to my friend Sherry, who has a jr. high aged son with a different rare genetic disability, she shared the story below with me.  If you’re been struggling with anger, frustration, something you can let go of, you might appreciate it too.

A psychologist walked around a room while teaching stress management to an audience. As she raised a glass of water, everyone expected they’d be asked the “half empty or half full” question. Instead, with a smile on her face, she inquired: “How heavy is this glass of water?”

Answers called out ranged from 8 oz. to 20 oz.

She replied, “The absolute weight doesn’t matter. It depends on how long I hold it. If I hold it for a minute, it’s not a problem. If I hold it for an hour, I’ll have an ache in my arm. If I hold it for a day, my arm will feel numb and paralyzed. In each case, the weight of the glass doesn’t change, but the longer I hold it, the heavier it becomes.”

She continued, “The stresses and worries in life are like that glass of water. Think about them for a while and nothing happens. Think about them a bit longer and they begin to hurt. And if you think about them all day long, you will feel paralyzed – incapable of doing anything.”

Remember to put the glass down.

(original source unknown)

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An Act of Go…oogle

Every now and then, I’ll get a notification from WordPress that someone has commented on my blog.  Most of the time, it is a comment on one breakfast recipe I posted like two years ago (everyone likes it, except for one lady who told me it was a waste of time and money – oops) or else this one on wine and cheese, thanks to Pinterest.  But the comment I want to talk about today was different.

It was from a man named Ruslan who lives in Russia.  His newborn baby daughter had been diagnosed Trisomy 12p, and he was trying to find information.  I’ve mentioned the rarity of Teagan’s diagnosis before, and the lack of easily accessible information – those of you well versed in SEO will know that for my itty bitty blog to show up in search results, there must REALLY not be anything out there.

Anyway – in his comment, Ruslan stated his situation and asked if I would please email him, as he and his wife had been unable to find much information or guidance in Russia.  Surprisingly, although I was thrilled to get his comment, I was nervous about writing back.  I long to bond with other parents in my situation, but now that the opportunity was staring me in the face, I kind of froze.  What do I tell him?  How do I portray the difficult road that is our life, coupled with the joy Teagan brings me every single day?  How do I offer him support from this far away, and when I know nothing about available resources?  What if I can’t help him?

When I did email him back, we shared the stories of our daughters and other children.  We lamented living in places where it snows in April.  Thankfully his English is better than my Russian 😉  My heart went out to him when he mentioned that he and his wife felt they were on their own because they couldn’t find many resources or anyone who could educate them:

“The geneticist whom we approached for consultation couldn’t even give us a hint about this syndrome. He said in his career we were the only family with such syndrome in Russia. And this guy is a super experienced geneticist in one of the best clinics in Russia. I guess we’ll need to be on our own now.”
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I remember all too well those first, super difficult days, when no one will give you a straight answer about what is to be.  And when you feel so alone because your teeny tiny baby has some crazy condition called Trisomy 12p and WHAT the hell is that?!  Hard to believe I was first asking myself those questions two and a half years ago.  Feels so far away, yet somehow like only yesterday.

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Different countries, similar weather patterns??
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Teagan and Ruslan’s daughter have some similarities rooted in their trisomies, and some differences.  They both had a hard time sleeping (even more than what you’d expect from a new baby) and eating, as well as low muscle tone, which leads to issues with basically anything muscle related – delayed rolling, crawling, walking, etc.; this is also the reason for Teagan’s two lazy eye surgeries.  So far Ruslan’s daughter is seizure free – join me in crossing your fingers for them!  They had some success with a massage based therapy, which we heard of back when we were first diagnosed but didn’t try.  They are still in the early phases of tests and scans and discovering what all has been affected.  Luckily, one thing is for sure – they both have parents who are working hard to give them the best life possible.

I told him about Teagan’s history.  How we tried to make up for the low tone with muscle strength through physical therapy.  About epilepsy and organ tests and all the progress she has made.  And mostly, I tried to be supportive – I tried to be the friend I wished I had when I was new to this situation.

When I asked Ruslan if I could share this story on my blog, he pegged my thoughts exactly:

“I don’t mind if you write about us on your blog.  I think people who might have faced similar problems should know that they are not alone in this world and that there are a lot of other stories of real people who are lucky to overcome the challenges you and us have faced.”

Word my friend.  Two and a half years after our diagnosis, our family has finally found a friend who knows how we feel.  They are on the other side of the world and speak a different language.  All it took, was an act of Google.

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Forgiving When People Don’t Understand

Yesterday Joel and I spent the morning with the most wonderful group of people at the annual Children’s Hospital’s and Clinics of Minnesota Rare Genetics Parents Meeting. Speakers ranged from behavioral specialists to meditation/yoga instructors to parents like us. I learned so many great lessons that I hope to write about in the next week or two – but I have to start with this one.

My friend Heidi, who I served with on the planning committee, brought us this lesson. She was telling the story of her son Liam, a middle school aged boy with a genetic difference. Back in the day when his diagnosis was new, she was talking to a family member who happened to have a very intelligent son – a “gifted” son. This family member told her, completely serious, something along the lines of “having a son who is gifted is just as much of a burden as having a son with a disability.”

Right. Are your diamond shoes hurting your feet as well?

It was in response to that story that someone told her the words I am still hanging on to from yesterday…

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I’ve experienced a very similar situation, so I have to imagine other parents have as well. When I was first sharing the news of Teagan’s diagnosis, a man I respect very highly and really just straight up like, said to me “My kids are going to grow up and leave me, and that terrifies me.  You get to keep her a little longer.” I think dumbfounded would be the word to describe me at that moment – I don’t think I even responded, as the words were just rattling around in my brain, which was unable to be really sure about what was just said.  If only I could show how badly I hope Teagan can live independently someday. I pray that she WANTS to.

Another common situation that makes it clear how hard this is to understand – there are lots of people who say things like “God doesn’t give you more than you can handle” “God only gives special needs children to special parents” or similar sentiments.  As I wrote about here, I roll my eyes internally and move on. Do I think God chose to give me a child with a disability to teach some sort of lesson? No. I don’t think God is an asshole (although admittedly, I really don’t understand why he didn’t prevent it and why, since supposedly “He can,” he doesn’t fix it now). But she’s here and she’s wonderful, and should we do some inspiring while we’ve got the chance?  Hell yes.

The examples above are perfect times to repeat those words to myself – in both cases, people care. They are being sweet and supportive. I know that I am the exception, not the rule, and that without being in the situation there is no way to know how a parent like me feels. Three years ago, I very well might have said the same things – in fact I remember saying to a close friend who was dealing with infertility that it was probably God’s way of having them help a baby who really needed beautiful hearts like theirs through adoption. This person told me later that people say things like that all the time and “It doesn’t help.”  I get it now.

The next example is a little harder to swallow – when people use the word retarded.  When we first got this diagnosis I noticed it All. The. Time. You have no idea how much this can sting when someone you love is actually diagnosed with cognitive delay (the term more used today – thankfully – in place of mental retardation). I don’t think people realize it when they say it – I think of it very similar to the way I used to use the term “gay” in the late 90s. If someone had an idea I didn’t like, I might respond with “That’s gay.” Did I actually mean that idea preferred to have romantic relationships with ideas of the same sex vs. the opposite? Of course not. I had nothing against gay people at all, it was just something I said for emphasis…and it was ignorant. Luckily, thanks to an evolving society, the term isn’t really used that way anymore (at least, around here it isn’t). I’m hoping to see this happen to the r-word as well. The difference is, when people use “retarded” they do mean less smart than the average person, and that is very hurtful.

If you happen to use this word around me, and seconds later realize what you’ve said and wish you can take it back (I feel like I can actually see people internally freak out when this happens), don’t worry. I won’t be mad at you – well maybe I will, but it won’t last long. On the other hand, if you ever catch yourself before using the r-word, imagine me cheering for you and giving you a hug, or a “good job” smack on the ass – your pick. Intentionally offensive or not, this word should go away in general.  Someday, someone is going to use this word in a way that pisses me off. And then I’m going to have to, kindly but firmly, tell them to STFU.

Now we can’t all walk around afraid to speak all the time – I have stories of times I’ve been horribly tactless myself (and more than one friend who loves to remind me of these times). I’m just saying we should all think about our words and actions.

There is this dude with Down Syndrome who I see at the coffee shop below my office almost every morning. He buys his hot chocolate, pulls out his laptop, and does whatever he does. I’ve had to stop myself from trying to buy his drink for him because it makes me happy to see someone with a chromosomal difference grown and out and about on their own – something that the case studies say hasn’t happened with anyone with my daughter’s diagnosis (…yet).  He might appreciate it – because hey, free hot chocolate – but he also might find it offensive.  He’s a grown man out doing his thing like any other guy in that coffee shop.

I so appreciate the flexibility our family is allowed for therapy appointments we need, but other than that, I don’t expect or want us to be treated differently.  I haven’t quite worked out in my mind how to draw that line – are even blog posts like this counterintuitive to that desire?  I don’t know.  I hope not, because I love writing rockinglion and I love hearing what everyone thinks in response, but it does make me wonder.  Maybe I’ll think more about that someday…for now, I’ll forgive myself for not understanding.

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Marriage When Life Becomes a Little More Special

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Someone once told me that traumatic events have the power to either bring a couple closer together or to tear them apart.  I don’t know if I’d call getting a special needs diagnosis is a traumatic event, but it definitely is jarring and life altering.  I can absolutely see how the confusion, frustration, and feelings of helplessness can add strife to a marriage – we take our anger out on those who love us most, right?

Fortunately, I feel (very luckily) that the bond between my husband and I is stronger than it has ever been.  We are no experts – but here are things we feel have helped us keep it together.

Respect each other’s coping mechanisms

When we first knew something was wrong, but didn’t know what, we dealt with it in different ways.  I cried.  A LOT.  And he let me – he held me, and didn’t try to tell me it was probably nothing when I knew it was.  He researched.  He read studies of other trisomy 12p cases (what he could find, anyway), and spent time on an online parents group on Facebook.  My husband wanted to know what to prepare for, and I felt the opposite – I didn’t want to know, and I didn’t want to let any previous cases set my expectations for my daughter.  We respected the way each other dealt, and it’s still working a year and a half later.

Be the strong one (sometimes)

Getting a diagnosis like this is scary.  Not scary – terrifying.  So many unanswered questions…what kind of life will she lead? How am I going to deal with this?  How will people treat her/us?  What will happen when I’m not there to protect her?  How did this happen to our family??  Freak-outs will ensue, which is expected and okay – but you can’t be the one to freak-out all the time.  Your significant other will need to be scared as well, and when they are, you have to be strong for them.  Turn to them, and then allow them to turn to you.

Share the load

Being a parent is a lot of work.  Being a parent to a child who needs multiple therapies and extra daily physical and cognitive exercises is a lot more work.  Once you’re ready to dry your eyes a bit, figure out how you’re going to approach this.  There will be many exercises to do and appointments to keep…are you splitting duties evenly?  Will one do physical therapy and the other occupational?  Maybe one of you will be the breadwinner, while the other will focus on what needs to be done with your children?   If you do decide one’s career will be more important than the other’s, make sure the one taking a step back is okay with this choice, not just saying they are (and if you are that one, be honest).  And then try and be flexible when unexpected meetings, etc. come up.

Feeling like you’re fighting the exercise battle alone is a helpless feeling.  My husband and I keep a running list of our current goals – if he and our daughter work on something before I get home from work in the afternoon, and I don’t see it or he forgets to tell me about it, I can still glance at the list later and feel good about what she’s done that day. This is also helpful during those slow periods when it doesn’t feel like she’s making any vast progress – a look at the list shows all the work the three of us have done that week.

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Current version of our girl’s workout sheet

Know when your spouse is approaching the danger zone

There are times when the stress can be overwhelming, so it is helpful to know when your partner needs a break.  Example: my husband is normally sarcastic in a very happy, funny way – when the sarcasm gets flat and just tinged with anger, I know it’s time to send him to the basement with a beer to relax for a few minutes.  This normally happens during meal time for us, if our sweet yet stubborn girl decides she doesn’t want to eat.  The stress ends sooner when we can recognize that it’s time for one of us to take a break. 

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Maybe I’ll eat, maybe I won’t!

Ask for help

Knowing the signs of the danger zone is great, but no one is a mind reader.  My instinct when I’m feeling like my husband isn’t helping enough is to get snippy and really short with him until he either kicks it into gear or asks me what’s wrong.  If I just skip that stage and ask him to do the dishes or work on stairs with our babe, he never says no, and then I don’t hurt or annoy him.  I also (try) to remember that just because I think something needs to be done right now, it doesn’t mean he does.  And that when he’s busy, a simple “how can I help” lets him know I’m there.  Try to relieve some of the stress of life.  Do the things the other one dislikes – he takes care of our bills/taxes/paperwork type duties, and I do the laundry and order the pizza (yep, my husband hates ordering pizza).

Encourage each other to take time alone

I like to go for drinks with my girls.  My husband is on a bowling team.  And on the nights he’s bowling, I miss him.  If he was never gone, I might forget that.

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Girls night!

This doesn’t have to be difficult, or require time out of the house or money spent.  On Saturday mornings I get to sleep in while my husband gets up with the kiddo, and I cannot tell you how much I look forward to it.  I’m still up by 8 or 9, but that extra hour to hour and a half of blissful relaxation can do wonders for my mood for the rest of the day.

You were each other’s boyfriend/girlfriend, then you were husband/wife, and now you’re husband/wife + parent + parent of a child that needs extra support.  It’s a lot.  Get back to you sometimes, and help your partner do the same.

Make time for each other

Chances are life was a lot less stressful when you fell in love – relax and bring those feelings back every now and then.  LISTEN when the other tells you about their day, or about their passions, even if it is football.  Take a few quiet minutes together at the end of the day.  Listen to some of your old favorite songs and talk.  Reminisce over the time the hula dancer made your husband dance with her on your honeymoon (if your husband enjoys dancing as much as mine does – and by that I mean not at all – this is a very funny memory).  Look nice for each other and go out to dinner.  If you don’t have a stellar babysitter next-door like I do, here is one of our favorite at-home date nights (SHAMELESS!) for after the kiddo goes to sleep: http://tinyurl.com/nh85scf

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Va-va-voom!

Be gracious and honest in your communication

Saying please and thank you is so easy.  Yes, he was supposed to take out the trash, he doesn’t deserve a ticker tape parade for actually doing so…but hey, you didn’t have to do it, so worth a thank-you in my mind.  And don’t yell – even if you’re just asking him to DVR The Bachelor, get off your ass and walk to where you can speak in a normal voice – or wait till you’re in close proximity.  Yelling, even if it isn’t mean yelling, adds stress.  Keep the lines of communication open, even if that communication is “I need a break, I don’t want to talk about it right now.”  A fight can be like a colicky baby – sometimes you need to put it down and go in the other room for a minute.  Then you can return and take care of it with a clear(er) head.  

Celebrate together

This is a life changer, not a life ruiner.  You will work hard, and awesome things will happen.  When they do, celebrate together.  The day our daughter finally decided to drink from a sippy cup, there weren’t happier parents – had I not be pregnant, I guarantee a bottle of wine would have been opened that night. We are so happy with the progress our daughter has made, and while she gets the bulk of the credit, it’s okay for us to realize that we deserve some too.  Thank each other for working hard.  Let your spouse know you appreciate them.

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So much love ❤