Senior Pictures

Last weekend we had senior pictures taken of our two graduating girls. They are 9 months apart in age and became sisters when Callie was 2 yrs. 9 mos. and Little Sis was 2 years.

Quick note about the names of my kiddos. I will be using real names mixed with pseudonyms. It may not make sense as people who actually know us will know who I’m talking about but that’s what I’m going to do. I will be using Callie’s real name as I plan to blog about her often. There are reasons as to why that is acceptable to me and reasons as to why I won’t do that with other family members and that’s enough said.

My girls are different in so many ways. Callie has intellectual disabilities, autism, anxiety etc. She had a real difficult start to life as a micro-premie who was essentially abandoned in the hospital. She’s had a really tough time, but she persists like no other. She is truly amazing.

Little Sis was with us at 6 weeks, was cared for well before she came to us which is not to lessen the trauma/abandonment that all adoption may bring, but she is an overcomer like no other. Don’t get me wrong, it’s not been an easy road, but she is in an amazing space now and we are so very proud. She is smart, sassy and super secure in who she is.

Taking their pictures was bittersweet for several reasons. Whenever your kid is taking senior pics you just can’t believe that time is here. No matter how many times you’re here and we’ve been here 10 times before, our first was our long term foster son in 1988.  Also bittersweet as the last girl we graduated was our Shannie whose senior pics popped up on my Google “Rediscover this day” – today. She died about 7 months later and senior photos, let’s face it eventually they’re not all that important, but these….these were never more important to me. Especially important is the photo of the three of us – her dad and I. Neither one of us was prepared for a photo but I was never happier to be photographed in my less than perfect glory because it’s the last picture of the three of us that we had taken where she was happy and feeling good.

In homage to their big sister each of my girls wore a special necklace of mine in their dress up outfits picture that Shannon also wore. Little sis who isn’t particularly sentimental also wanted to be sure they took a picture together, holding one of Shannie’s stuffed lambs, sitting in front of Shannie’s apple tree. My heart was full seeing them in that space honoring their sister.

I must also mention that our photographer is a young woman who has taken all our family photos and was also Shannon’s personal care attendant for years. I’m forever grateful for her and her gift of photography which captured our beautiful girl and her smile – the way we want to remember her.

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More than Serialadopter

I have thought and thought about returning to blogging. A couple of the sticklers I wrestled with, still wrestle with, is how to protect the privacy of members of my family and rethinking my own identity. When our Shannon died almost 3 1/2 years ago I changed. I began to change over the year or so before her death as well let’s just say there was a lot of family stuff going on both before her death and since then. Some of it is shareable and some of it is definitely not my story to tell. I want very much to honor that as well as to speak my own truth and I wasn’t sure how I would I do that.

I was also not at all sure I wanted to continue to use the name Serialadopter for a couple reasons perhaps most importantly because my view of adoption in general has evolved. But, the reality is I am a serial adopter. I’ve adopted 9 people and caring for them has been the driving force in my life.

I always know I am second best because the desired scenario for any child or parent is always that they would be born into a family who planned for them, was prepared for them and even if they weren’t either planned or prepared for those parents would have the support needed to be the best parents they could be. Specifically for the majority of our children, all would be born healthy and all parents would be supported in caring for them. Why would we want anything less for the children in this world? I try to be the best second best I can be and I’m ok with knowing that.

That being said my focus will be different than it was previously. When our Shannon was still alive we knew we’d care for her until we simply could not anymore but now we are getting close to having the last of our 5 children reach adulthood. Three who are still at home will need care for the rest of their lives and we are trying to figure that all out and hopefully, eventually, what life after daily caregiving looks like. Right now it’s totally a pipe dream.

I’m also hoping to share specifically about our nearly18 year old daughter who was just officially diagnosed with autism this past year and her/our struggles with mental illness/behavioral issues and what we are trying and have tried. Which, in short, is everything. More on that later.

Again, the past 4 years have changed me in ways I never imagined. Mostly, in spite of the painfulness of it all, for the better. At least I think so.

 

 

 

Someday the Dream might be Realized

Monday was Dr. Martin Luther King Jr. day and it’s always a day of reflection for me, both because of my personal experience as a young child hearing Dr. King speak, then after waiting in a long line having the opportunity to shake his hand. Mother told me to look him in the eye and never forget and I never have. Who could have imagined then that I would become a white mother raising black children and that we would still be hoping that someday his dream might be realized.

With all the racial events of this past year, especially the Black Lives Matter movement, I’ve given a lot of thought to white privilege. As my children become teenagers I often think about their safety in a society where the violence and death of black people does not seem to be as concerning as of those who are white. It’s certainly not a new concept, but frustrating when you grew up in a time where you complacently thought, maybe just hoped, we were past all that. Ignorant and naive because of my white privilege. I wasn’t living it every day as my children are beginning to.

My black children have lived in a white privilege bubble of sorts. Because they have white parents, they weren’t scrutinized as they shopped or made friends or perhaps in school once the color of their parents were known.

As they have grown older and moved away from us, venturing out in to the world alone, that is changing. I often now walk a few steps behind them to see how people view my children. More than once my husband or I have been there to step between them and a store clerk questioning their motives when touching merchandise or merely walking in a store. Our white privilege bubble won’t always be there, and I grieve for the times they will have to verify their right to shop, or simply be wherever they are.

We know that black young men, children really, are viewed as adults at a far younger age than caucasian children. My tall 12 yr. old son is no longer seen as a child. I learned early on to refer to my son as little man, both because historically the word “boy” has been used to denigrate black men’s manhood and because I wanted him to think of himself as a man from early on.

I know I haven’t done the best job preparing them for what is to come, how can I when my mere existence  has shielded them from conversations that might have come about naturally in a black family’s life. They are often annoyed by my desire to have these conversations and I get that too. Who wants to believe there are those who look upon their color with suspicion and fear and oh, how I wish we were much further along in the struggle Dr. King worked to end. To believe that struggle is over is to belie reality and for my children’s sake that is something I can not do.

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Prayer – An Instrument of Peace or 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.

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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. 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 person who should be  spoken to directly as any adult should.

By telling me you wanted to change him to his cellular level you told me he was a mistake. From the moment of conception you think 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 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                 Christlike which, to me, makes it even worse. You used prayer as a weapon to inflict           emotional pain rather than an instrument of peace.

If you were bound and determined to “hunt” down someone whose child had DS, I’m       so grateful you chose me. How devastating it would be for young parents learning and    coping with an unexpected diagnosis to have 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      create more pain than you  will 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 fixed. On the other hand, had he understood, I suspect my words would     have come to me quite 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.

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.

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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

 

Shannon is 17 today and today truly was mostly about her. Not in a normal 17 yr. old spa, pedi/mani out to lunch kind of way though. Shannon had an appt. for a wound check on her surgical incisions which turned in to a major event. Not the actual appt., but getting everyone on the same page about what this appt. was about. Her surgeon was unavailable and we were told her pediatrician could just check it and then we’d see the surgeon in another 3 weeks for X-rays and such. Well, nothing is that easy. Today between the two of us we made or answered no less than 14 phone calls. It was ridiculous. The pediatric office was freaked out about checking on a hip replacement wound, apparently they don’t see those like ever, but a surgical wound should be a surgical wound I would think.

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Happy Birthday to Shannon!

She has two incisions. One for the hip and the one inside her leg right at the top for her adductor tenotomy. That one has given us concern as it lost it’s steri strips, which hold it together, only about a week after surgery. We’ve watched it closely and called and described it. Today the pediatrician took a sample to check for potential infection. The last two phone calls of the day came simultaneously with Mark on one phone and myself on the other about the exact same appointment which we will have tomorrow AM with one of the surgeons associates. Everyone is now sufficiently freaked out about follow-up that we have to drive quite a distance to double-check on everything.

Part of the craziness this morning was the constant back and forth between the pediatrics office trying to decide if they could handle it or not. The last call was only 45 min. before her appt. and Mark informed them that we can’t just run out the door with her, it’s quite the process.

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First this vest has to go on and it zips in the back. This is to attach her to the chair itself as it only has a seatbelt. Her usual wheelchair has all the straps for traveling that are constantly in place.

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There are then two straps that go between her legs and anchor her to her chair.

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Next the wheelchair and bed are placed side to side and the bed is lowered so she can slide from the bed to her chair.

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Next the transfer board is slid partially under her body.

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Then she slides right over on to her chair. The set up is a bear, but the actual move is simple.

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On Sunday we will have a little open house to celebrate with friends and family another year with our girl. We have great hopes for this next year. A new wheelchair will be coming this summer and this new hip will be tried out. So, happy birthday sweet girl. You inspire us every day to keep life in perspective and never, never take life’s little pleasures for granted. Every day is a gift.

Play Date at the Mall

It’s happened. My 11 yr. old – I don’t like the term tween, because she’s still a kid, maybe when she turns 12 she can be a tween – had a “play date” at the mall with a couple friends.  This is surprising for one very specific reason.  My daughter HATES to shop.  Apparently, spending time with friends trumps her great distaste for all things shopping.  She had earned $15 by doing chores and they were going to have lunch together.  

We had worked it out that we would meet every hour or so and check in.  My kid doesn’t have a phone – not in the family budget – but both the friends had a phone with them.  Two times I ran into my girl she was sitting at a table watching the friends’ bags and purses while they shopped.  She was completely content just hanging out. When Ella left the mall, she had no bags, just an empty wallet in her pocket.  The other girls both had a couple items they had purchased.

When I queried Ella on where her $15 went she said lunch and the arcade.  That seemed about right.  It does, however, blow my mind that she spent $15 with absolutely nothing specifically to show for it.  Her older siblings will, no doubt, once again rail about how much more privilege these younger kids have than they did.  They would be right.  Our pennies couldn’t possibly be pinched any tighter when they were growing up.  We didn’t have a cent to spare just to feed and secondhand clothe those kids.

Walking around the mall for 4 hours – not ready just yet to drop 11 and 12 yr. olds off at a mall by themselves – I had plenty of time to shop.  I went into many stores and even picked up some items, but then put them back realizing I really didn’t need them.  I did end up buying a few $2 and $3 shirts and some Easter clothes, but the best thing I bought was  lunch – for myself – by myself.  It was a lovely hour long lunch with just me and my computer and I thoroughly enjoyed myself.  

What I said about my girl having absolutely nothing to show for her $15 was incorrect – she got a fun afternoon filled with memories of hanging with friends.  All too soon having so much free time that you can just hang around a mall for four hours with friends and no time frame will come to an end.  So, yes she got plenty for $15 and it was definitely worth it.