Dear Typical Mom

Dear Typical Mom,

I’m sorry.

I’m sorry that when we lined up for seats on the Extreme Swings at the amusement park today your tween-age daughter got the seat next to my teenage daughter.

Sorry that your girl was too uncomfortable to sit next to my girl. That she was so uncomfortable that she traded seats with you, and very sorry that you let her.

Sorry you missed an amazing teachable moment with your girl.

You have no idea of the opportunity you missed.

DSC04534

You missed teaching your girl that she should show respect to those who need a little extra loving care. Even if she was too freaked out to sit by my girl you could have, at the very least, modeled it for your girl. You could have talked with Callie, introduced yourself and your daughter – anything to show your girl that you valued my girl.

You missed knowing a girl, if even for a few minutes, that rode the Extreme Swings and then went to the children’s area to ride the children’s swing ride with just as much unabashed enthusiasm.

You missed spending just a few moments with a girl who demonstrates Satchel Paige’s “Dance like nobody’s watching” quote better than anyone. She jammed to a tune while she waited to ride on the Enterprise, a spinning ride that is vomit-worthy, while others backed away from her. I don’t know if it was because they didn’t want to be near her or because she is a brazen, audacious dancer and she never, ever gives the gawkers around her a second thought. She dances without regard to the stares because, well, because it truly is nobody’s business and unlike most of us, she embraces that. I absolutely adore that about her.

I’d say it’s your loss, but it’s my girl’s loss too. Every time she is ignored it is a missed opportunity to practice her social skills.

So, truly, I am so sorry. Sorry that you missed an opportunity to meet a person so uniquely made, a mold breaker to be sure. I know I’m biased, but I’m pretty sure you missed a one in a million opportunity.

Sincerely,

Mom who is proud of her atypical girl

 

Bathrooms for All

Let me be clear from the beginning, this will not be a political post. This post is about the dignity of every person to use the “facilities”.

granite-ss-toilet-partitions

I know greater minds than mine have tried to figure this out, but I have the solution. I know a population of people that touches every single person on earth, or likely will at some time in their life.

Those children, teens and adults who are disabled, both physically and intellectually and sometimes both. Those disabled children/adults who are incontinent and have had to lie on the floors of disgusting bathrooms to be changed. Those adults with intellectual disabilities who have to go with their opposite gender caregivers in to bathrooms of the opposite gender because they are too vulnerable to go to the bathroom alone. They are not, however, unaware of the the looks/glares from the other bathroom patrons or exempt from the humiliation of the experience.

I know the last time we traveled with our medically fragile daughter, who required diaper changes, we knew it likely would be our last, primarily because it was so difficult as she got older to handle her physical needs while on the road. Imagine lying down on a public restroom in any bathroom you’ve ever been in while traveling. I don’t want to imagine it either, but I had to make her do it.

Let’s take this opportunity to rethink and redesign bathrooms once and for all making them accessible to every people group at the same time. How about individual stalls for everyone with top to bottom doors that lock and then a communal area for hand washing? Yes, we would still need a fully accessible bathroom for those in wheelchairs or larger children/teens/adults that need diaper changing. I’m a realist and I know it’s a dream to ask for a large changing table too, that would be beyond awesome.

1 in 5 people have disabilities, some permanent and some temporary. They are our children, our parents, our veterans, those injured by drunk drivers, those who have had their hips replaced, those who have arthritis, who have cancer, the list goes on and on.

Can’t all the advocates for those groups join for this one cause? People on the political left should get behind this because it solves the issue for the LGBTQ community, people on the right should get behind it because it’s pro-life, it’s about basic human dignity for everyone. It doesn’t have to demean or exclude any group that is seeking access to the bathroom, it can simply be providing the most basic of rights for all the citizens of our society.

How about we take the vitriol over sharing bathrooms with other people and join forces. This is a way for all of you to get what you want and look really altruistic at the same time. Win. Win.

 

An Era Ends

It’s been a good run, but a run that has ended. We are no longer parents to a child. More than half my life, 36 of my 60 years to be exact, I have been the mother of children. Today my youngest turned 13 and I will be a mother to a child no more. I am the mother of teens and adults and grandmother to 6, but no child resides in my home.

Jacob 13th BD

Jacob’s 13th BD

I’m thinking the average parent has a child, not a teen but a child, in their household for say, 14 years? We’ve exceeded that by 22 years, hence why I say we’re marathon parenting. I mean, let’s be real. All of my 6 grandies live in town and I provide daycare 4 days a week for one, so it’s not like there aren’t still children in my house nearly every day, but it’s a milestone nonetheless.

I am not the mother or person I was when my first arrived. I’ve had time to learn, grow patience and change my parenting style, not to mention the changes in our world that require a different skill set.

My adult kids often mention how different their younger siblings childhood has been and they’re right. If you’re learning anything in the process of living life, you’re not the same person you were 30+ years ago. Most of us say, “If I had to do it over again I would…”. Well, we have had time to do it over. And over.

Jacob is not thrilled with being the forever baby and suggested we add a younger sibling so he could lose that title, or he said we could adopt a 12 yr. old so we’d still have a child. He’s so thoughtful that way, but he’ll have to make peace with being the baby because the baby he will be.

 

 

 

 

 

 

 

 

 

 

Springtime has Arrived

Tomorrow Shannon would have been 19. She died 2 weeks before her 17th birthday, so even though the anniversary of her death is only a little over a year ago, we will now have missed two birthdays.

DSC04625

Beautiful pink tulips we planted last fall in Shannie’s garden are about to bloom.

In case I haven’t said it enough, the month of April bites. It’s the anniversary of her death, her hip replacement, hospitalizations for pneumonia, another hip surgery happened in April. It just stinks. And yet we got through it again. Because….life.

Last weekend Callie and Christian had their Best Buddies Prom. They had tons of fun. Callie did well for almost 2 hours and then she’d had it. Her curiosity about a fellow student who was having a meltdown got the best of her and she got in his face which earned her a forehead slap. On top of that a song she despises because “It’s not nice!”, the song “Shut up and Dance”, came on and she was drop the mic – peace out – gone.

I call that a success. She looked beautiful and Christian looked handsome and, for the most part, they had a blast.

 

 

7e7fc012-9d4b-4f0a-9207-617d86ea92bd

I had a really interesting conversation with Callie’s special ed. teacher about how she has more friendships with the general ed. students than the special ed. students. Callie is in kind of a league of her own. Her memory is incredible. We were just talking about her dance class this morning and the dance they just began working on two weeks ago. Even though they didn’t have class last week she could remember every step and the description the teacher used – side step, disco, etc. Most likely she will remember the steps better than the reg ed. helpers/teachers in the class and heaven forbid they change a step.

Christian was invited to watch his buddy play lacrosse tomorrow and said he had a jersey he could wear. Christian already has a lacrosse stick set out to take along. Needless to say, he is beyond excited.

The sun, which has alluded us for over a week here, is shining brightly today and we are looking forward to a week of sunshine and those beautiful tulips fully blooming, wide open to the hope that spring brings.

 

 

When Prayer is a Weapon

 

Yesterday in a store parking lot I was chased down by a woman who asked to pray for my son. I had Chad with me and my grandson who is 8 mos. I knew she meant Chad and assumed, perhaps, she had a soft spot for people who have Down Syndrome.

DSC04030

She proceeded to tell me there was a website that tells of people being healed down to the cellular level with Down Syndrome. She touched him, said a one sentence prayer and quickly went on her way not knowing the impact of that encounter. I was so stunned I didn’t say anything. Here’s what I wish I’d have said.

You addressed me and talked over my son and by doing that you immediately demonstrated that you did not consider him a fully human being who should be spoken to directly showing respect just as you would any adult.

When you told me you wanted to change him to his cellular level you’re saying he is a mistake. He was formed from the minute of conception as a mistake. God created a mistake.

You never asked me if I thought Chad needed to be “fixed”. By the way, I do not. He is happy, healthy, funny and his family loves him exactly as he is. We would miss much of what makes Chad, well, Chad if you had your way.

We know many other people do not find him worthy just as he is and show it in many of the same ways you did, but you thought you were being kind and helpful and even Christlike, which to me, makes it even worse. You used prayer as a weapon to inflict emotional pain rather than an instrument of of peace.

If you were bound and determined to chase down someone whose child had DS, I’m so glad you chose me. How incredibly grateful you chose me. How devastating it would have been for new parents learning and coping with an unexpected diagnosis, perhaps, to have had you approach them and tell them if they just prayed they could change it all. I know a little something about people implying if only you prayed harder, or the right way, your child would get better. You would create more pain than you would likely ever know.

If I would have had to explain to Chad what our encounter was about it would have broken my heart. How do you tell someone that this stranger thinks you are imperfect and need to be completely re-furbished. On the other hand, had he understood, I suspect my words would have come to me quickly to immediately counteract her hurtful words.

It frustrates me to think she is likely excitedly telling her friends about our encounter without realizing the consequences of her actions, but maybe this will stop someone else from making the same mistake.

Now, excuse me while I go enjoy a superhero movie with my Chad. You haven’t lived until you see the joy he takes in his superheroes. Perfection.

 

 

Luxury of Peace

Sunday was a gorgeous day here and we were bound and determined to enjoy it. Two of the kids had places to be, so me, daddy-o, Chad, Callie and little man headed to a park to walk around the pond.

Two things that should have tipped me off it might be a stressful walk for our gal Callie. It was very windy and Callie does not do wind. She is in her girl week that sometimes means her mood is even more unstable than her usual instability.

We began with little man on his rip-stick in front and daddy-o dragging, well, encouraging Chad along behind us. Callie and I were in the middle. She was okay for a bit and then she took off running. She is fast and even at my top speed if she’s gotten a head start there’s no way I can catch her. Thankfully, she wasn’t in full blown panic mode and eventually stopped.

For the next 10 minutes I’d negotiate with her trying to get her to continue walking rather than turning around and heading for the van and then she was just done. She ran back towards the van. I chased her yelling back to Mark that we were heading out and eventually when she could see the van she calmed enough to walk beside me.

12932653_623772384440284_2893986832947244231_n

Even when walking beside Callie it’s not a leisurely walk. We’re still working on staying on our side of the sidewalk and not just walking in to people, so she stays on the right of me and is constantly bumping in to me. Sometimes I link arms with her just to keep her close by, but there is constant bodily correcting happening to keep her where she needs to be. It’s not relaxing.

She was still ramped up in the van and wasn’t happy that someone else was in the front row of the van. Eventually she moved to the back row, which perturbed her. She also rules the music in the van demanding station changes if she doesn’t like a song. Sometimes we let it go and sometimes we challenge her. A song came on that little man liked and he’d been such a great sport we pushed her a bit and let it play. Apparently that was it for her and she took her ear protectors (sound mufflers she always wears) and threw them hitting Chad. Before we could do anything about it she picked them up and threw them again hitting Chad again. Mind you, these were the brand new ones she had just gotten because she’d thrown her old ones in school smashing them to bits just two days before.

As daddy-o and I discussed the walk, we both mentioned noticing the couples we passed who were around our age having delightful conversations and enjoying each other’s company on a peaceful Sunday afternoon. We sighed and wondered if we’d ever have that luxury and yes, that really is a luxury.

Some Holidays You Just Endure

Easter hasn’t been a truly fun carefree holiday for us for several years. If we really go back we’ve had quite a few springs in general that were difficult, but none like the last two.

Two years ago Shannie had a hip replacement and we left the hospital on Easter. Last year on Easter we could see the writing on the wall and in spite of it being a gender reveal occasion for grandie #6, which was of course joyful, knowing in my heart of hearts it would be girlie’s last kind of overshadowed the season.

This year we gathered a week before Easter and the weather wasn’t great. We had an indoor egg hunt, which just isn’t as much fun, and were missing one family due to illness. Our Daddy-O was, and is, still hacking from Influenza. We made the most of it and the kids decorated cupcakes rather than running around outside – in the new snow I might add. Ah, Minnesota.

Spring is going to be chocked full of sports this year as one girl starts her first lacrosse season, three start track and field season in special olympics and Callie gives dance lessons another try. Life will be quite full and we will do our best to keep up with this crew.

This holiday is the last of our firsts without Shannon and maybe more than most, because it was so close to her death, this one we endured. It happened. We survived. Next year will be better.

Loss and Legacy

At a routine doc appointment with Chad today, Mark thanked the doc for the lovely note he wrote us after learning of Shannie’s death last year. He never met Shannon, as she needed more specialized and frequent care than he would be able to supply, but we had shared family stories over the 25+ years we’d known him. He told Mark he understood how difficult losing a loved one was and shared that his wife had died just 2 years ago, something we didn’t know. They shared stories of the after effects of such losses and commiserated on how unfair life can be.

Later this afternoon I took Callie to an open house at a dance studio where they are beginning an adaptive dance class. I almost didn’t go as it wasn’t a particularly convenient time of day, but she seemed excited about it and so we went. As one woman was giving us a tour of their facility I told her I thought she was very familiar. I asked where else she had worked and she told me the name of a medical supply company we had used years ago. I mentioned Shannon’s name and it all clicked.

Years ago, when Shannon was about 8, she was the person who helped us with Shannon’s seating system and would come to Shannon’s school for adjustments and such. She had a daughter, the same age as Callie, who accompanied her to see Shannon. She told me what an impact Shannon had on her then 5 yr. old daughter. Her daughter would tell her that even though Shannon couldn’t speak, she knew she could understand, she could just tell. She told me that over the years her daughter would mention Shannon and what an impact she had on her.

Her last words to me were, “Her legacy lives on”. There are no sweeter words to my ears.

Sanity Saving Creativity

It’s tax day at our house. Mark is armed with his briefcase full of paperwork to take to our tax preparer. She’s known us for 13 years and helped us through several years of confusing paperwork due to our complicated family. This year he added one more thing to his briefcase, a picture of Shannon. She has heard about her for years, but has never met her and now Mark will need to tell her of Shannie’s death.

In one month we will mark the end of our first year without Shannon. We thought of several ways in which to honor her and finally decided on what feels right to us. This year has been focused on our immediate family and so will that day. One of the things we always appreciated when going to the hospital for any treatment or surgery was the quilt or blanket that was at the foot of the bed to brighten up the stark whiteness of the hospital bedding. I’ve written about it before.

This year, actually nearly two years ago, I took up crocheting. I needed something useful to do during long hospital stays and many long days homebound with Shannie. It helped keep my sanity along with giving me a creative outlet, something I’ve always needed. I’m not excellent, sometimes just adequate, still learning, but truly enjoying it. I also saw it recommended for those with arthritis in their hands and it certainly has helped that too.

As I was crocheting a baby blanket, for no particular baby, I remembered all those lovely blankets we’d received in the hospital and after a little research I found Project Linus. It’s an organization that provides ¬†blankets for hospitals, shelters, social services agencies, wherever there might be a kid in need. I knew that would be our project. On her anniversary date our family will gather and tie fleece blankets. Hopefully, her garden will also begin to bloom and we can officially dedicate it to our special girlie.

Here are some photos of a few of the sanity saving projects, and some adorable models, that I’ve finished this year.

 

 

 

Christmas 2015

As you know if you’ve read this blog we have an amazing and growing family. You also know this was our first Christmas without our Shannon.

While looking over past Christmas Eve photos we remembered how often the activity level and noise of that night was just too much for our girl. She could sometimes handle sitting amongst us and sometimes would have to retreat to her room, or she was ill, too often that was the case. Last year, her last Christmas she was calm and quiet and seemed to be taking it all in. She seemed to know and I think we too knew, although to mention it or consciously think it was too difficult.

DSC02037

Shannon’s last Christmas Eve.

We kept her part of our festivities this year in a couple ways. Her stocking was hung and although we mentioned writing a memory and slipping it in to her stocking to share, none of us did. Perhaps it’s still too fresh and too difficult. We gave each family member old enough to remember her a framed ornament of her to hang on their tree. To each of the new babies we gave a lamb blankie with a note saying how much Shannon would have enjoyed meeting them and that this was something she would want to give them. Shannon’s daddy’s nickname for her was “little lamb”. A lamb which symbolizes many things including innocence, tenderness and gentleness, couldn’t be a more perfect animal to symbolize our girl.

DSC04156

Here you can see our youngest grandie Jude Leslie, Auntie Shannon Leslie’s namesake, by her picture and a lamb ornament.

Looking forward to 2016 fills us with a whole other set of emotions, but for now I will include a few more photos of our family, for which we are beyond grateful.

This slideshow requires JavaScript.