Larkin's Place

People First Language ~ Talk the Talk

Amy — Mon, 30 Aug 2010 15:35:30 +0000

I’ve been stomping around the house this morning arguing in my head and I like those kind of arguments because I win all of them! HA! This particular rant will come in a round about way so roll with me.

This weekend L attended a birthday party for a little girl whose family I have loved and been a part of for many years. A family that supported me when I was going through a particularly bad time many years ago, they included my son and I in their family stuff when I was single, and have been extremely supportive during the trials and joys of Larkin’s birth and subsequent health issues.

They want to be educated about Larkin, her peers, and all those with special needs, so they ask a lot of questions. Educating the general public about this subject is a particular passion of mine so to have people close to me inquire makes me feel as if they truly care and want to be more informed.

One item on the very long list of ways to change how the world views our children is to use people first language. People First Language. What does that mean?

First I will give you a link to a website that I use on a regular basis to help others understand http://www.disabilityisnatural.com/

Second I will give you a link to a particular page on this site that explains exactly what it means to use people first language. http://www.disabilityisnatural.com/images/PDF/pflchart09.pdf

I was surrounded at this party by typically developing children and their families and I like to think that most of them want to make us feel comfortable and included. I must admit that the party was very hard on me because Larkin just can’t participate in most of the things that make these moments ~ memories. I have to constantly remind myself to stay in the moment and enjoy the fact that this little girl is able to attend, something I would have highly doubted in her earlier years. Enjoy that we are surrounded by supportive friends who love her and us.

Our memories will be different and that is OK.

BUT and you all knew there was a giant BUT coming didn’t you?

I read a lot of blogs, tweets, facebook, and websites that are about special needs. Some hold themselves up as the guru or as the channel to talk about disabilities, wanting those of us who blog to post via their website so that parents from all over can connect and learn from each other. There are other items I read that are just conversations from parents about their life and what they are thinking/feeling at a particular moment.

As I move through this life of navigating disabilities, writing IEP’s, putting my girl on the bus, and educating those around me, I have become more deliberate about what and whom I choose to read. I stopped following one particular mother quite some time ago because she kept referring to her child with Down syndrome as her “downs child” and I just couldn’t take it anymore.

I have decided today to stop following and reading those who refuse to talk about our children and specifically their own ~ in respectful and people first language. This will require me to clean up my blogroll and my twitter but I am quite confident that my life will vastly improve because I won’t be arguing in my head anymore (well not as much).

Every single day I try to improve and advocate in a way that helps those around me understand what life is like for Larkin and our family. The biggest request that I have made is that everyone refers to her do so by name or gender. Her medical team, school team, and anyone else who touches my child is expected to value her and her strengths. While they are aware of her needs, they are first and foremost thoughtful that she is Larkin. A little girl. A sister, granddaughter, niece, cousin, friend, and community member.

She is not to be defined by her diagnoses.

I read blogs from parents who have a child with cancer and I have yet to read any that use the term “my cancer child” nor do they refer to their other children (if there are siblings) as “normal” and it makes my stomach hurt to even think of referring to Larkin’s siblings as “normal”. No one has ever called her my “seizure kid” (to my face anyway) It is disrespectful and frankly the bottom line is that it flies in the face of everything those of us who wish to be included are fighting for.

I want my little girl to be included, embraced, and understood. Parents who have gone before me fought for the removal of the word “idiot” from medical/school use and the word retard was considered a step up. That was 50 years ago and today we want the word “retarded” to be removed from medical and school use. We want those who use it as an insult to stop and we advocate for that with every breath. Our children and their various diagnoses’ are going to be targets of those who don’t wish to broaden their view of respect.

So how can I ask those around me to be respectful when daily I read those who have a child with special needs using terms that define our children by a diagnosis? The very parents and advocates, who want change, USE language that is disrespectful, oppressive, and divisive. Inclusion will never fully come until we walk the walk and TALK THE TALK. Until we unite and refer to our children as people and not a diagnosis.

I have reached out to the Autism community leaders and asked why so many parents who have a child with Autism use the diagnosis first. My child doesn’t have Autism so I don’t assume to know the inner workings within the community so I was curious. There were plenty of differing opinions given back to me and there are advocates within that are trying to change how doctors and parents refer to their children with Autism. I suppose it is no different than what I try to do within the community who have children with Down syndrome.

I slip here and there and find myself using her diagnosis to talk about Larkin. I stop, take a breath, and begin again. There will always be slips especially when I am around other parents or service providers and I get a little too comfortable talking in acronym or clinical notes. Larkin deserves better from me. If I don’t set the standard then how can I hold anyone else to it?

“Our words and the meanings we attach to those words create attitudes, drive social policies and laws, influence our feelings and our decisions, affect people’s daily lives, and more. Words, their meanings, and how we use words matter a great deal! ”

Kathie Snow

Disabilityisnatural.com

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My heart is on the bus

Amy — Tue, 24 Aug 2010 16:26:56 +0000

There have been a lot of “first” in our short 5 (almost) years with Larkin. I made the decision to try out sending Larkin on the bus to school and that has had my stomach in knots for a while. Most of you who read this blog know the painful long journey to health for our girl and it has taken a great deal of control to her environment to get her there. Now I am releasing her? Now? When is a good time? When? She has been walking for 9 months now so it made sense to try out transportation that allows her some independence and allows me to keep the twins on their schedule. Seems fair huh? Easier said then done.

The bus was late. Then our address was wrong so the bus didn’t come to our house. Then a call saying another bus was on the way was incorrect. I think you all know me well enough by now that if I say I am going to do it and I hold up my end of the bargain ~ well then I am going to hold the other party responsible to holding up their end. Steve at the bus garage was awesome and handled the situation well. Another bus was sent and we waited. My knots growing. My angst getting worse with every breath.

The bus turned the corner and I waved from the window and watched as the driver turned around and pulled up in front of the house.

Strangers. They don’t her story. They don’t know this girl. They don’t know the pain, angst, struggle, and all the ologists in this little girl’s life. They don’t know the fight we have given to get her to standing on this curb.

I helped her up the big steps.

I said hello to the driver and the aide.

They were pleasant and helpful.

I always appreciate when others speak directly to Larkin and treat her like a little person.

I tell the aide that Larkin is non verbal. What I want to do is give her the 7 page Word document I hand to every caregiver so they can see paragraph by horrible paragraph ~ her story.

I help her into the big seat and she looks out the window.

The aide snaps her seat belt in place.

I stepped back and took a picture.

Just as when I handed her over to medical staff for the first set of skeletal x-rays, chest x-ray, heart echo, EKG, EEG, MRI, CT scan, ~ my heart sank and every single mommy fiber of me screamed to grab her back. To grab her and run away. To run from these strangers and hide away with her and protect every hair on her beautiful head.

I recognize the symptoms. I steeled my hands into fists and took a deep breath.

I told the strangers to take her safely to school and bring her home the same.

I stepped backward off the bus.

I took a picture.

I let go. Because the entire first that I listed above gave us the path to helping this little girl stand on that curb. Get on that bus. Sit in that seat. Look out that window.

She is a beauty to behold. She is amazing. She is Grace and Redemption personified. She is my heart, soul, spirit, and my love.

She is safe and loved. Even with strangers who don’t know her story.

I turned and there was my neighbor Leslie. A woman of faith, a mother of two, she has felt these painful feelings of letting go more then a few times. She held me as I sobbed and told me that “they never make this easy” and she is right.

We did what all mothers do after tears; we make a joke and giggle a bit, hug again, and move on into the day of work.

Walking back to the front door I could hear Brin and Erin crying for me and I sat with both babies on the floor of the foyer and cried with them.

I pulled it together until I heard Larkin’s stuffed Tad toy begin his learning time music. Tad was alone and my tears began again.

That is until Brin quickly crawled over to him, happy as a clam when she realized that big sister was not going to bonk her over the head for playing with him.

Laughing I turned into Erin and began our new first of morning with the twins, my heart, soul, spirit, and my loves, until the big girl comes home, 14 bursts in the door from his day, daddy makes his way home, and we are complete

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Babies R Band-Aids

Amy — Wed, 18 Aug 2010 03:13:58 +0000

Babies aren’t Band-Aids is a common saying used when people have a child to try and repair a relationship, fill a void, or for some other various selfish reason. Babies are hard work, no sleep, taxing on the body, and amazing gifts. I have known since I was a little girl that I wanted to be married and have a big family.

Fourteen is about to change his name to Fifteen and I so wish that I had pictures of his birth but disposal cameras and film were still the big tickets items (which cracks me up) so I don’t have any pictures of his hospital journey. When the twins were born back in November I specifically wanted pictures of it all so I could have a record to enjoy plus I have a feeling these two girls are going to enjoy watching the video I made over and over.

We photograph every important event in our lives; birthdays, prom, engagements, weddings, graduations, reunions, pictures are as important to me as breathing and praying and if I could bottle the time with my kids I would. I love their smell and mashing my face into theirs to absorb their sweet breath.

Babies aren’t Band-Aids. Larkin has been more like duct tape which is described as “hurricane tape” or “100 mph tape” since her entry into our lives brought the hurricane, tornado, insert your favorite storm here, and we had to learn to survive at 100 mph. I have written before that Larkin healed me when I didn’t even know I was sick. She brought my peripheral vision back into focus and I began to clearly see those who struggle or are marginalized by society. I lost my patience for people who complain about life when they have no true hardships, although I am realllly working on hiding the fact that it irritates me. I listen to parents yammer on about this and that and my eyes glaze over and roll with a giant thunk into the back of my head ~ it’s that THUNK that I need to be better about hiding. I’ll keep you posted on how that’s working out.

Larkin is my baby who is definitely a Band-Aid. She is the glue that keeps our family together because she reminds us of what is important as well as how grateful we should be for every easy breath we take. She healed my wounds, made me a better mother, friend, wife, and above all else a better human being. She brought me back to my center, family, faith, prayer, and God.

It dawned on me a few weeks ago that I had pictures of Larkin’s birth sitting in my computer. I had done nothing with them all these years ~ perhaps waiting for the time when I could do it without breaking, feeling like a bag of shattered glass, raw with emotions and worry. That time will never come.

Today I worked on a short video of our first daughter’s birth. She came into our world and shaped what we today know as beauty, acceptance, grace, redemption, and love. I share her with you our fragile emissary who teaches me something new every day.

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Beauty ~ Her own way

Amy — Sun, 15 Aug 2010 12:37:09 +0000

The summer has gone by fast and the house is on a count down of days til school begins. It always makes me a little bit anxious as the pool days are slipping away and I dread the winter. We have made arrangements for Larkin to continue with her swim lessons at the YMCA on Church Street once school starts and it’s too cold to swim outside. School will wear her out but swimming also gives her so much freedom and it breaks my heart that we don’t have an option … for now. (gotta build that new Y!)

Friday it was 99 degrees and the heat index was around 110 but we went to the pool anyway, being in the water made it bearable and it wasn’t terribly crowded which is nice. It sounds like a wonderful way to spend your day hanging out in the water but when you do it every. single. day. and your skin has tanned to its darkest level and shows signs of water dryness, well it becomes more like a chore at times. Larkin has made such huge gains in many ways this summer so it’s a chore that is made easier by joy and love.

This week gave us two different opportunities to cheer. One took me a little while to realize and I think you will smile with me when you finish this.

First, Larkin was swimming and goofing off on the stairs into the pool, which is her favorite thing to do. She doesn’t play with toys in the water, as the water is her only need. Other kids have tried to play with her in the baby pool by giving her items but she looks at it for a second, tosses it away, and moves on. Meaningful play for her is just being free to move in the water. Friday there was a yellow volleyball in the water near the steps and Larkin reached for it.

Balls in the water just keep on moving if you don’t grasp them with both hands so the ball kept bobbing and moving just beyond L’s grasp. This time was different in that Larkin didn’t give up and turn away. She swam after the ball, swimming under water, coming up for air, reaching for the ball, back under, air, reach, swim, air, reach, swim, and this continued for 25 yards. She went across the entire width of the pool trying to get the ball!

The fact that she was swimming was beyond amazing but also that she would do so by taking an interest in a toy quite literally left me speechless and cheering!!!

Second, I have noticed that Larkin will play on the steps in the pool and make sounds but also will sign all of the signs that she knows. She signs eat, more, please, all done, and up, off and on even though she isn’t asking for any of those things. I have been watching her do this over the past few months and was a little worried that she was confusing her signs and we would lose the meaning. It has been so wonderful to be able to communicate with her and it has made a world of difference for us so I want to ensure we don’t lose that.

Often times I am the only adult in the pool surrounded by a mass of little kids. I was listening to one little girl ask me a million questions. She asked WHY about EVERYTHING as that is what kids do and I patiently answered her for a while and then I began to answer her questions with questions. I realized she was just talking to talk and she wasn’t really listening to my answers so I engaged her in a different way that created conversation. It does give me a mixed bag of emotions as I watch little girls Larkin’s age playing and talking to me and I would truly give anything to get a smidgen of that out of Larkin.

I do get it in bits & pieces so I am sated but there are seconds in time when I catch my breath with a hitch, a lump in my throat, a wind of grief washing over me as I realize what typical 4 looks like. A wind that passes just as quickly when I catch sight of my girl and fall back into our journey and stay in the moment of joy.

Meanwhile there was another little girl sitting on the edge and I asked her why she wasn’t getting in and she explained that she likes to swim from the steps to the other ladder but she couldn’t because Larkin was in the way. Her little voice so sweet and kind as she told me why she was waiting.

Quick background on this particular little girl, her first name is Murphy and that is Larkin’s middle name. She is a charming sprite who has told me stories of her favorite movies, where she bought her swim suit, asks me to get toys for her when she can’t reach them, and is a bright spot in my days at the pool. Murphy, who is always patient with my girl, remembers the conversation I had with her about Larkin’s brain owie and why Larkin doesn’t talk or play the way other little girls do. I often have this conversation with each new child that plays near Larkin so they understand if she grabs them or doesn’t play with them when they try to engage her. Kids are so understanding when you explain things to them and I’ve only had trouble with one little boy but he has his own issues so I am more watchful when she is around him. The girls though …. wow they are her little mother’s and they hover around Larkin.

Anyway, I suggested to Murphy that she tell me when she was ready to be on the steps and I would move Larkin out of the way and she jumped up delighted at my solution! I watched as Murphy talked to herself as she swam from the steps to the ladder. Telling secret stories and playing by herself.

Imaginary play while she swam from one to the other.

Whole conversations in her own little world.

It was a shattering of light for me. Tears welled up only this time instead of the wind of grief it was the absolute smack to my forehead

HOW COULD I NOT SEE IT!

Larkin, using her signs, was holding conversations in her own way.

Imaginary play while she swam ~ whole conversations in her own little world. Telling secrets and playing by herself suddenly became the most beautiful thing to me!

Murphy and Larkin are more alike then they are different but I was too busy worrying about Larkin losing an ability that I failed to see the beauty of her own language and play.

I am speechless about this because I can’t find my voice to discuss it without crying.

So I type it. Silent tears running down my cheeks because I am so in love with a sweet little girl who teaches me every day how spectacularly beautiful this life is and Murphy who taught me that Larkin will always have a friend.

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Fundraiser For Larkin’s Place & the Y

Amy — Tue, 27 Jul 2010 21:38:22 +0000

All the Hits, Q96, 105.9 WGKC, 95.3 The Wolf, The NEW 93.5 The Beat, Shelby Motors, Macy’s, Refinery & Prospect Bank present High Heels After 5! Helping local charities one high heel at a time.

Join our July Spokeswoman Amy Armstrong at V. Picasso in Downtown Urbana on Thursday, July 29th from 5-7:00 PM for our 5th After Hours that will benefit Larkin’s Place!

For a simple 5 dollar donation that will benefit Larkin’s Place you can enjoy a great drink, lots of hourdorves, and a chance to win FABULOUS PRIZES!!! This month you can win prizes Macy’s & Bodi Bronze Sunless Spa, The Pottery Place, State Farm Insurance, Wind, Water & Light, Fannie May Candy & much more. We will also giveaway a designer purse from Bags and Baubles, Tickets to Indiana Beach, Tickets to Knight’s Action Parks and much more!!!

Plus make sure you register for our Island Bridal Travel Grand Prize Getaway for two to The Grand Cayman Islands.

And Ladies be sure to wear your favorite high heels. The Michelle’s Bridal Gentlemen After 5 may choose to escort YOU up to the stage for the Best High Heels of the Night Contest brought to you by Bella Mia!

Amy Armstrong this month’s spokeswoman, Shelby Motors, Macy’s, Refinery, Prospect Bank, All the Hits, Q96, 105.9 WGKC, 95.3 The Wolf and The NEW 93.5 The Beat invites you to our 5th High Heels After 5 After Hours! Join us Thursday, July 29th from 5-7:00 PM and help us support Larkin’s Place!

Hope to see everyone out!

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Surviving the Tornado

Amy — Thu, 22 Jul 2010 15:16:37 +0000

While life has been quite busy there has been a nagging sense of something missing. A sense of something doesn’t fit or isn’t quite right. Did I forget to turn off the stove, grill, return an email, learn French, or from my years of flying for United ~ did I forget to disarm the slide from the aircraft door?

Something is different.

It took me some time to figure it out but I realized that I am navigating a world after the tornado.

Larkin’s health issues hit at 3 weeks, gained strength at 5 months, and became a category 10 by 19 months. The storm receded in April of 2009 but by then I was pregnant with the twins and life didn’t really have stability until the beginning of June 2010. Fourteen has graduated from middle school and the major decisions of where he will go to high school and how he would spend his summer were made. Larkin’s schedule set, Brin and Erin are a ton of fun.

So what is this strange feeling I’ve been having? It’s my shoulders down below my ears and neck. My iron smile slipping a tad bit. I have the ability to hold a conversation with a Neurologist, ED Doc, and the occasional infectious disease specialist, but I haven’t had to.

Dare I say it? Do I tempt fate?

I am standing in the rebuild of our new normal, breathing and enjoying our family, while still in a little bit of shock and awe at what we lived through the last 3.5 years.

The tornado ripped through our life, we stood in the middle of the aftermath for a few months and the build began without us knowing we were doing exactly that …. rebuilding our life.

Larkin takes my breath away every single day. Her hair began to grow after we stopped the ketogenic diet and in the summer we go the pool so she can swim, and I find myself putting her pigtails in each morning. She eats a bowl of cheerios or oatmeal for breakfast while the twins play with the pots and pans at our feet. She has begun to pick up her feet to put her legs into her shorts as I get her dressed. She laughs at us when we tell her “NO” and laughs with the most infectious giggles when she is playing on “mama’s bed” with my 10 or so pillows.

I also realized that I was anxious for the twins to hit 6 months because life with Larkin went truly bonkers when she was 5 months old. In my goofy way I just needed to get the girls past that mark and then I could breath a little bit easier, I could stop watching them like a hawk waiting for signs of seizures. Although I must admit ~ I never stop watching.

The everyday things about life that most take for granted, give us the deepest joy and laughs. Truly I promise that the fact that I can pour her a bowl of Cheerios with strawberries and enjoy our morning just like almost every other family BLOWS ME AWAY. Granted I am giving her medications with her bites of cereal that General Mills most certainly never envisioned but never the less she is lowering her cholesterol AND seizures. HA! Can you just envision the commercial “Cheerios with 12 essential vitamins and whole grains, combined with Felbatol, Vigabatrin, and other drugs help keep your brain seizure free!”

I am a farm girl and I have seen plenty of tornadoes in my life and have had to help clean up after. TV is one thing and there was a movie about chasing storms but for those of us who have hidden in the cellar waiting for one to blow over, hoping and praying that no one would die, tornadoes are a force that you just don’t play with.

Our family has come up from the cellar and evaluated the damage. Now we are putting down roots in happiness that we thought would never come our way. But we all know that there is a calm before the storm. When we least expect it there is another reason to look at the sky and think (as Ray Bradbury wrote, “Something Wicked This Way Comes”) what is going to hit us next?

We know the tornado will come again and that we are living in respite while the current drug cocktail controls her seizures. The little girl who is doing amazing things has power over our mood and for now we are basking in her growth and development.

Now hand me another 2×6 as we continue construction

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Persistence pays off

Amy — Fri, 09 Jul 2010 02:23:03 +0000

I have always said how much Larkin enjoys the water and when she was lost to us because of the seizures, it was only when we put her in the pool that we saw a glimpse of life. Today she has amazed all of those who surround her daily at the pool. Her coach is also the coach at the Champaign County YMCA Will Barker. Will made me cry two years ago when he volunteered without hesitation to teach Larkin how to swim. Will has a passion for swimming, kids, and he also has a nephew Hagen who has Down syndrome so he is comfortable with those with special needs. Will and I had a goal of teaching Larkin to swim to the edge should she fall into the pool. Larkin, as usual, showed us that she is amazing, smart, and strong. Check out this video and share the joy we are feeling.

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Beauty Magnified

Amy — Tue, 15 Jun 2010 23:47:45 +0000

Summer is in full swing around here and it sure is nice to be able to sit outside, stay up late, and go swimming. We are lucky to have an employee at the lumberyard that is amazing with woodworking and making things. Brent is truly heaven sent for us as I can explain to him what we need modified for Larkin and he can whip it up and hand it to me within a day most times. Mostly we ask for modification to toys because Larkin is growing taller all the time but she doesn’t necessarily outgrow her toys. Brent has made chairs, ramps, tables, and other items for us and some for us to donate to Developmental Services or to families that can’t afford the high priced items in catalogs, but toys are a regular item we ask Brent to fashion wooden legs for to bring the toys up higher so that Larkin can continue to play with them.

One such item is a water table that Andy’s parents bought for Larkin a few weeks ago. Brent attached wooden legs and now the table is the perfect height for Larkin and her friends to play. Last week I was sitting outside with Brin and we were watching Larkin play in the water. Brin at 6 months is so curious it cracks us up on a continual basis and she was on full tilt watching Larkin while bouncing up and down on me and if sheer will could have bounced her like Tigger over to the table ~ it would have. I switched babies out one at a time so each could enjoy the outside and watch L.

I can’t fully express how much joy I get out of watching the babies and their development. I had forgotten what typical looked like so it truly has been like having a first child even though the twins are numbers 3&4. It hit me very hard that morning as I sat on the deck ~ Larkin’s beauty magnifies our beauty and our beauty magnifies hers.

Watching Larkin’s beautiful strong tanned legs as she moved around the table captured my focus. She has only been walking for 7 months. 7 months. Her sisters are 7 months old and it seems like they have been here forever but I will never take for granted the hard work my amazing girl put into learning how to walk. I am also painfully aware there are parents who will never celebrate this milestone and that is a big reality check for me. I laughed at Brin as she bounced, her equally beautiful strong (not tanned) legs working so hard and I know that crawling/walking are in her very near future.

Back and forth I was watching their bodies in motion, drinking up the spark of life and light in their beautiful eyes. That spark and light the seizures stole for so long but we won it back and I don’t take it for granted because we know it could be lost again at any moment. The beauty of a child that is typically developing is so amazing to me. I watch daily as my girl brings out compassion, support, and love, from most who come into contact with her.

Today at the indoor playground at the First Christian Church, Larkin was trying to follow a little girl up the slide. The girl was probably around 8 or 9 and she instantly began to urge Larkin up the slide, coaching her, cheering her on as she made it closer and closer to the top. She then said to Larkin “watch this” and ran across to another slide and tried to encourage L to follow her up. Of course once L lost sight of her the reciprocal play was gone but the little girl came BACK and kept with Larkin trying to get her to do it again.

The progress that our children with special needs make is so BEAUTIFUL and so TREASURED that it makes my heart and chest ache and my cup runneth over. The friendships made will forever change the landscape of our children’s lives and enrich all of us in ways never imagined.

Together we make each other whole and a community. I take a ton of pictures but here are a few of those friendships that help shape my little love’s life and her doing the same in return

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Mother by definition

Amy — Sat, 08 May 2010 18:37:38 +0000

My dear friend Leslie sent out the following quote this week. A challenge if you will to truly listen and write as “The Artist Way” teaches us in a stream of consciousness. Letting words flow and not letting the inner censor question our thoughts, ideas, creativity, and letting what is inside truly go.

“If something inside you is real, we will probably find it interesting, and it will probably be universal. So you must risk placing real emotion at the center of your work. Write straight into the emotional center of things. Write towards vulnerability. Don’t worry about appearing sentimental. Worry about being available; worry about being absent or fraudulent. Risk being unliked. Tell the truth as you understand it. If you’re a writer, you have a moral obligation to do this. And it is a revolutionary act- truth is always subversive.” ~~ Ann Lamott

Wow huh? Powerful words that took a little time to sink in for me but the more I thought about it the more I realized that with Mother’s Day inching her way toward me I needed this very quote to be able to write with the vulnerability and emotion necessary to let it go. At some point which I have no idea when - it became embarrassing to call oneself “a mom” or “stay at home mom” and women felt judged (even if they weren’t) by other women if their definition was Mother.

I looked up the definition of “define” (typing that makes me laugh) because when I speak to groups, doctors, people in general, I ask that they not define my daughter Larkin by her diagnosis. Please do not call her ”Down’s kid” or “a Downsie” or “Down Syndrome child” ~ she also has seizures but you wouldn’t call her “seizure kid” or “seizure child”. Define her by name, gender, hair/skin color, but do NOT define her by diagnosis. She is Larkin and she happens to have Down syndrome. I am not alone in this battle for people first language and there are many advocates who wish to have their loved ones defined by something that empowers them vs reducing them. Kind of like when people use the term “normal” which always makes me raise my eyebrows and stare until they realize they have just insulted my child.

So anyway the definition of “Define” is to “give description” some Synonyms: assign, call a spade a spade, decide, label, lay it out, nail it down, name, prescribe, represent, specify, spell out.

Then I looked up the definition of “mother” Part of Speech: noun Definition: female person who has borne children. Again WOW. Might want to ask the myriads of mothers who adopt, foster, and love children they did not give physical birth to. Just WOW ~ but the definition redeems itself as we move along into the main entry. Care. Part of Speech: verb

Definition: tend to

Synonyms: attend, consider, foster, keep an eye on, keep tabs on, look after, mind, mind the store (this one makes me LAUGH), minister, mother, nurse, nurture, pay attention to, protect, provide for, ride herd on, sit, take pains, tend, treasure, wait on, watch, watch over.

I define myself as a Momologist. It’s my trademark (legally too) as I made it up after realizing that Larkin’s Neurologist, Hematologist, Cardiologist, Ophthalmologist, Oncologist, along with the thousand other doctors in her life, knew a lot about diagnosis’s but I KNOW this child and I trump all. I define myself as a mother and I am empowered by it.

Becoming a mother allowed me to forgive and have empathy for my own mother as I learned that she did the very best she could and I think I have all the very best parts of her and my father represented in my life. Fourteen and I went to Mother’s Mass yesterday and Monsignor asked the question “Why did God make Mother’s?” and Fourteen leaned over and whispered “to rag on us” so he will agree with the synonym “ride herd on.” (I feel like I am using a lot of ” marks ~ oh well) Being a mother to Fourteen requires a lot of watching over, riding herd on, ragging on, mind the store, keeping tabs on, and a whole lot of ~ I will grit my teeth and love you in spite of the teenager you are. However I am confident that he will turn out to be a decent human being if I keep on keeping on just like I have all of his life and one day he will forgive me and have empathy! HA!!

Becoming a mother to Larkin changed my entire life profoundly. The very definition of Mother changes 180 degrees when you are given a child with special needs and I don’t say that as if I was handed a halo and super powers at the same time she was placed in my arms. I earned those super powers and a halo?? … well …. anyone who knows me would fall down hysterically laughing at the very thought of me with a halo.

I quickly learned how to advocate and take control of adverse situations we were thrown into. I can clearly remember the very first time I felt the shift within me and it came from absolute lack of control and terror. Larkin’s diagnosis of Down syndrome took a while because she didn’t have soft markers, plus we had a DNA test that said she didn’t have it. The only words I could get out of my mouth once the genetics doctor and I were alone were “her heart her heart her heart” said with clutching sobs out of a mouth that suddenly felt like it was filled with cotton. Fast forward to a small, dark, warm room with a bed/table and a large humming sono machine. Two techs. A father scared out of his mind sitting hunched over on a chair by the door with his head in his hands.

A mother lying down on her side on that table with her naked infant cocooned to her. Sharing soothing words and kisses as the techs begin to roll a wand over her infant’s heart. Watching the machine and seeing two red pulsing holes in her infant’s heart. Glancing at daddy who seems broken by his inability to fix the situation. Listening to 2 techs whisper and measure the holes. Shaking with worry until the heart doctor told us surgery wasn’t necessary unless the holes didn’t close on their own.

I grew in that moment. I became defined in that moment. I changed in that moment. I became stronger in that moment and in the worse that came over time.

Being a mother is an amazing journey and prior to having Fourteen I had wonderful role models to emulate. Friends who have children that I love as if they are my own. My 18 hole golfing group that is filled with women who shared their friendship, knowledge, prayers, hugs & tears, and always had my back when I felt so alone at times. Girlfriends who love and kept sending invites that included me in everything no matter how many times I said no or couldn’t attend because we were in some type of crisis. My sister who shows up when I am not expecting it but she always knows when I need it.

The definition of mother means “care”

Mothers of children with special needs all of whom I met via this crazy winding road. Mothers who are just like me and handle what they have been given with grace and faith. Mothers who step outside their own lives to lend a hand, an ear, hugs, jokes, and sometimes a swift kick. Mothers who stand shoulder to shoulder with me in the war we sometimes wage against whomever stands in our way. We write books, blogs, and make phone calls to help those who might be going through the same problems we are.

Mothers who have stepped out of their comfort zones to answer the call to adoption and foster care. I coined a phrase during an interview that best described why I am working to build Larkin’s Place and it extends around to embrace all who take a stand; COMPASSION shows us our PASSION which leads us to ACTION. Hearts open wide to CARE.

Mothering extends itself to children that while we may not have birthed them, when we see them doing something dangerous or rude, we intervene or correct them. This can be a slippery slope though for those who don’t appreciate their children’s flaws pointed out but for me, if Fourteen needs it then by all means feel free because it means you CARE.

Even when we roll our eyes, get advice when we don’t want it, and at times feel like we are 12 all over again there is only one person we can ever call “mom” and my own mother did the very best she could and I love her dearly. I am grateful that she is still with me and I miss my grandmother every day.

All of us mothering each other even though we may be peers and role models. Mothering each others spirits, lives, and journeys no matter what they may be. Taking care of each other moves beyond a sisterhood and is taken over by our very nature to watch over and protect each other like a mother does. Building each other up and nurturing if others try to tear it down. I just received an invitation to my high school class reunion which I will not be attending because I was so tormented by most of the girls I went to school with. That is why it is so important to me that I teach my daughters to be strong and kind because as women we need each other’s care.

There are some things that are exclusive to us as women ~ We go to the bathroom together when we are out, dance in groups with abandon, call each other when we are beyond angry with our spouse/child/boss/driver in front of us. We are there for each other with baby showers, birth, death, and all things in between. We CARE for each other.

Consider Proverbs 31 which speaks to the beauty and strength of women 13 She selects wool and flax and works with eager hands. 14 She is like the merchant ships, bringing her food from afar. 15 She gets up while it is still dark; she provides food for her family and portions for her servant girls. 16 She considers a field and buys it; out of her earnings she plants a vineyard. 17 She sets about her work vigorously; her arms are strong for her tasks. 18 She sees that her trading is profitable, and her lamp does not go out at night 19 In her hand she holds the distaff and grasps the spindle with her fingers. 20 She opens her arms to the poor and extends her hands to the needy.

I am a Mother and it defines me: call a spade a spade, decide, label, lay it out, nail it down. ~ Happy Mother’s Day to all who mother and thank you for helping me be the best mom I can be. I treasure you all.

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Amy — Sun, 02 May 2010 20:17:44 +0000

In my last post, I talked about putting together a video every year for our family. Gathering pictures over time and finding music is something I really enjoy doing and helping others do the same is really a lot of fun. Late last night I finally finished the video for 2008-2009 and while I was working on it I had a huge epiphany.

I have ended my previous videos just after Larkin’s birthday in October. Fourteen has his birthday in late August and then we have L’s so those pictures would end the video and I would pick up the next year in October. With the birth of the twins I had to revamp this timeline and I realized that I would need to just extend things out to the end of the year and end it like most “normal” people would. I kept thinking about this and wondering to myself WHY did I ever get into the habit of ending things in October and I went to bed puzzled. The next morning I was making the bed and still muttering to myself (type A much?) searching for a reason ….. when it crashed down on me like a ton of bricks.

For the first few years I wasn’t sure if we would have another birthday for Larkin. Making it to another year was such a huge milestone for us that I would end my photos on our celebration and then I began holding my breath for the next.

I work on these videos over the entire course of the year, dropping photos in and adding/taking out music as I go along so I don’t look at the total project until I get close to needing to edit it. So for the past week I have been watching the video over and over to work out kinks and fix flaws. I have been in awe about how much L has changed, grown, and progressed. Her teachers are in awe as well so I know it’s not mom goggles that I am looking through. The first photo was taken in October of 2008 on her first day of school and she looks so different that it takes my breath away. Her health has been stable since April of 2009 and her hair, skin, and overall development reflect this.

I will share the video here today even though I am not quite through tweaking it. (type A much?)

Our girl went from being carried into school in the first frame of video in October of 2008 to using her walker in October of 2009 and as of November 2009 she walks into the building. On her own and don’t EVEN try to hold her hand ~ she falls but she gets right back up and every day she looks a little less like a drunken sailor. She has her own agenda and we are cool with that but we have to work hard to keep her safe as it is like having a walking 6 month old. Slow and steady wins the race and Larkin is a marathon not a sprint. We have learned to regulate our breathing, slow down, enjoy the moment, and end our years in Decembers just like everyone else and look forward to many more birthdays.

Photo and video editing at www.OneTrueMedia.com

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