Tuesday, August 23, 2016

First Day

Someday I will accept that getting my kids to look at the camera at the same time and smile is impossible. 

Today is not that day. 

I tried.  I really did. 

I had this perfect first day of school picture in my head.  All the kids were in it when I imagined it, but Maggie sprinted to the car and wanted nothing to do with my picture taking.  So I convinced these two to pause on their rush to get to the car.  Kind of. 

Smile guys.


Okay can you both look at the camera.


Okay good.  Real smiles!  Happy smiles!  We're going to school!


Over here!  Look at the camera!  Could you stand a tiny bit closer to each other?  Maybe hold hands?


Or maybe not.


Seriously guys.  Just one picture.


Not bad.  But could you maybe scoot a little bit closer?


Almost. 


They had  great first day and can't wait for tomorrow. 

And the only person who cried about dropping these two off?

If you guessed James you would be correct. 

Two more years buddy.  Two more years.


Monday, August 22, 2016

Jamsey

This child.  It's been a whirlwind of a summer. 

Somehow he's spent the last few months collecting new doctors and therapists the way that some people collect Pok√©mon. 


To be honest, while he definitely has a gross motor delay, I find myself not overly worried about whatever it is that's going on. 

Since I haven't blogged much lately, and to have my thoughts gathered all in one place, so that at some future date I can look back and chuckle that we were worried at all,I'll give a little bit of background. 

Between the ages of three and five months old we noticed that James seemed kind of floppy for his age.  He wouldn't hold his head up.  We needed to support it like he was a newborn (right now Tessie has better head control at seven weeks than he had at six months).  We were introduced to words like hypotonia and hyperflexible by his pediatrician, who kept a close watch on him. He spent an enormous amount of time on his tummy, but it made not difference. 

When he still wasn't sitting up unsupported at ten months, his pediatrician decided it was time to be a little more proactive in making sure nothing else was going on.  He was bombing just about every category on the ASQ (ages and stage questionnaire) by then and as I watched my ten month old, who couldn't sit up in a high chair by himself, I was starting to worry.

His doctor referred him to the same neurologist that Maggie sees and also referred him to our state's early intervention program, where he was assessed and found to have a more than 20% delay, which qualified him for physical therapy.  The neurologist ran a few tests and said to come back in a few months. 

At physical therapy we found that he strongly preferred his left side over his right.  If there was a way that he could avoid using his right arm and leg, he'd find it.  Having a preference of one side over the other isn't a big deal with someone who's older, but it isn't supposed to happen with someone who's teeny tiny. 

After watching the left side preference and low tone for almost a year, James' neurologist sent him for an MRI.  And after one very long day and a weeks wait, I got a call from an assistant at the neurology department telling me that everything looked fine except... (the next few seconds were some of the longest in my life) he had a sinus infection (sigh of relief) and I should call his regular pediatrician so that we could see if she thought it needed to be treated (by then it didn't). 

A few months ago his physical therapist and neurologist decided he needed orthotics.  He'd started walking a little after eighteen months, but his feet turned in and his ankles rolled in wildly, making him trip every few steps.  In the beginning his entire right side would give in, causing even more falls, but that's improved drastically in the last couple months, although he still falls every minute or so. 

A few months ago his neurologist and pediatrician both decided separately that they would be writing referrals for genetic testing and in September he'll finally get in to see the same geneticist that Maggie saw in April (we're still waiting on test results to process for her). His neurologist doesn't want to do anything until the genetic results are back.  After spending five minutes trying to get a single reflex response from James knees and ankles and getting absolutely no movement he mentioned a test involving sticking needles in muscles to see how they're working, but we're avoiding that at all costs, since he said it'd be pretty unpleasant. 

This week he'll be seeing a orthopedic specialist to make sure there's nothing else that needs to be done about his toes insisting on pointing in.  He's also been seeing an early interventionist (kind of a general therapist who works on gross motor and fine motor and speech and social skills with him) and will meet his new physical therapist this week.  And most recently there have been suggestions of adding OT to the list, which I'm hoping he doesn't need... but will go along with since I know that therapies at this age can mean far less therapy later on. 

In a lot of ways it's odd because he's the polar opposite of Maggie, who took her first steps at ten months and was climbing up on top of Sadie's giant bouncy horse and riding it when she was barely one. 


Still, as I watch the determination with which James has faced these challenges that seem just a little tougher for him than they are for everybody else, like rolling over or sitting up or walking, I can't help but feel like it's all going to be okay.

Although if you want to throw up a prayer that maybe he stops adding new doctor's appointments to the schedule, and keeps growing healthy and strong, I would most definitely appreciate it. 

Sunday, August 21, 2016

A Big Deal

There was a little moment today that is imprinted on my mind.   It only lasted a few seconds, and I doubt anyone else realized what was going on, but I did and for the rest of the day I've thought about it.


Today was a barbeque at our new parish and for the first time in a very long time we decided to go.  Without the food allergies it was an actual possibility.

There was a tent with tables set up under it a short distance away from the school's playground.  We walked the kids halfway to the playground, which is fenced in, and told them to go play while we walked back to grab plates and food. 

We thought that the easiest thing to do would be to get the food and a table and then call them over, letting them get their wiggles out after Mass before we sat down to eat. 

Patch noticed immediately that we weren't over by the playground and came sprinting over to stand in line next to me. 

I had my eyes glued to Maggie while I waited and suddenly I saw her stop and look around and realize that we weren't right there watching her. 

And she turned around and ran back towards the tent.  I watched for a few seconds as she got closer and her eyes swept back and forth through the faces of the people already at the tables, searching for us. I said "Maggie!" and she saw us and Paul walked over and she held his hand and walked to a table and sat down. 

This is huge.  Since Maggie was a tiny baby she would take off and not look back.  When she was ten months old I watched her as she crawled off across a field, to see how far she would go, and she simply kept crawling, totally oblivious to the fact that she was leaving me behind.  When she eloped last summer she didn't seem concerned with being out in the forest on her own. 



She has always seemed to be totally unconcerned with whether the rest of us were coming with her when she was attempting to go out on her own. 

So noticing that we aren't right there with her and coming to look for us is a milestone that felt incredibly far off, not all that long ago. 

I won't be throwing out her GPS anytime soon but still... baby steps!

Saturday, August 20, 2016

Goodbye to Allergies?

Earlier this week I realized that the apple sticks I'd been buying had wheat in them.  I couldn't believe I'd made that mistake.  I check labels compulsively.  I recheck labels that I've already checked a dozen times, because time has taught me that labels can change and that just because something was dairy free last month doesn't necessarily mean it's dairy free this month. 

This wasn't a mistake like that though.  I've been buying veggies sticks at Aldi for months now and they're gluten free.  The apple sticks were in the same sort of packaging and for some reason my brain just assumed they were okay. 

In the last month both Sadie and Patch have outgrown their allergies.  It's been amazing.  When the allergist called and said the retest for Sadie showed no allergies at all, and that we could start gradually reintroducing foods and see what happened, I was ecstatic.  And Patch will still get sick if he has regular cow's milk (which he despises) but all the other dairy products he's tested out have been fine. 

Still, I was afraid to even try gluten or casein with Maggie.  You see, she never tested as having allergies like the other two.  She would just get really, really sick every time she ate even the tiniest amount of either food.  The first three times it happened I was still skeptical.  But then it happened like clockwork after every exposure, and I realized that she really, really couldn't have almost all of her favorite foods. 

There were times when she managed to sneak a tiny bite of something with wheat in it, and I'd forget to mention it to her therapists and would get a call a few hours later asking if she'd had gluten because they could tell.  It happened over and over again (as she'd usually manage to sneak something every three months or so) over the course of the last three years, at more than one office. 

So I was stunned when I realized that she'd been eating apple sticks, made primarily from wheat, for a week and a half and hadn't had a reaction.  I quickly texted her main therapist and asked if they'd noticed anything in the last week.  She said that they hadn't, that Maggie was doing better than ever. 

And so we decided to see if she'd outgrown her allergy and that night I let her have three graham crackers. 

I waited.  Would she be up all night sobbing because her stomach hurt?  Would she lose all the words that she has and cry non stop for the next two weeks? 

The answer, for the first time in three years, was no.  She was fine.  When I tucked her in she ran through the names of the Bubble Guppies on her backpack, pointed out and labeled all the colors on it, and then asked if we could go to the "swimming beach."  When I said no we couldn't, it was night, but maybe we could ask Daddy if we can go soon, she asked to go to Daddy's office.  She hasn't even seen his office yet, which added to the general shock I was feeling having just had the longest back and forth conversation (by far) we'd ever had in her entire life.  So we called Paul and asked if she could come see his office soon and she repeated "Daddy's office?" a half dozen times before drifting off to sleep. 

Since then I've let her have a tiny bit of cheese.  He therapy tech said she had another great day, with a huge amount of language, and that she'd been trying to  run her own therapy program, but that she had been a little emotional.  Since emotional days happen now and then anyways, the jury is still out on dairy, but we had another rather long back and forth conversation at bedtime, and so I'm cautiously optimistic. 

I'll admit that this has brought up some questions though. 

Before we moved to Michigan, into an old house built in the 1920s, no one in the family had food allergies.  After living there for a year, all three of our kids had food allergies.  And we were all sick constantly. 

Over the course of the time that we lived there the basement would flood every year (not a huge flood, but a steam going from one side of the basement, through a wall, to the other), along with the yearly backing up of the sewer when the tree roots would grow into the clay pipes, which meant another flood.  I was constantly battling mold with bleach after the floods.  I wouldn't be able to see any mold after I was done cleaning, and everything would look fine, but I wondered.  And worried. 

We've been out of the house for four months now and the three kids who had allergies while we lived there all seem to be allergy free.  No one has been sick since we've moved.  In fact, I feel ten times better than I've felt in years.  And I can't help but wonder if somehow it's related.

I asked Maggie's neurologist at her appointment last week and he said we probably would never really know.  But I can't help but wonder.

Now to make a new meal plan and a new shopping list (that will be spectacularly less expensive).  I'm pretty giddy.  This means we can do things like church picnics and doughnuts after Mass and all the things that were little family traditions that were so hard to give up.

Friday, August 19, 2016

7 Quick Takes Friday: Mini Update Edition

-1-

Things have been busy around here.  I'm eleven pages out from finishing the third proof read of the book, which happens to be the last one I'm doing before sending it out to agents.  I've been working on query letters, which for some reason is more intimidating than actually spending a year and a half writing the book and proof reading it (and if anyone knows an agent who represents fantasy authors...). 

-2-

Tessie continues to try to prove that she's the most laid back baby we've ever welcomed into our family.  She first shocked us by sleeping nine hours at three weeks and has continued to do so, while growing like a weed, for the last four weeks.  She's wearing six month clothes now and I packed up the teeny tiny clothes last night while lamenting that she can't fit into them for a bit longer. 

I should probably mention that a certain eight year old woke up basically every hour for the first eighteen months of her life... so I like to pretend that a baby that sleeps like this is a reward for surviving the colic/reflux sleeplessness that was 2008-2009.  I think anyone who has another child after surviving a high maintenance baby should be awarded a good sleeper the next time around. 


-3-

Paul is in the process of opening his own law firm, has started working doing sub contracting for another lawyer, and is fitting all this in while continuing to work at his other job.  Which has made the schedule a little extra crazy lately. 

I really, really wanted to post a picture of his office, which looks great, but he's in the car driving from one thing to another right now so I can't ask him if that's okay... so I guess it will have to wait for now.

-4-

When he's not around I'll admit I do kind of feel like I deserve some sort of a medal when I load or unload all five kids in and out of the car together. 

A couple weeks ago I took all of them into a store together, by myself, and it was kind of like putting a circus on top of a shopping cart and pushing it around a store.  At least it was if the looks we got were any indication. 

Although I can't really blame anyone who starred, considering the fact that us walking around anywhere (or driving, or sitting, or breathing...) is basically always accompanied by a play by play commentary by Patch, who is a pretty hilarious little kid. 

An example of this would be when we're walking through the super market and I hear Patch say (in that loud voice that just doesn't get any quieter despite multiple "indoor voice" reminders):  "You need go pee pee in the potty Mommy?  Pee pee in the potty?  You have go pee pee in the potty if you want to go to school Mommy!" 


-5-

Patch got to visit his preschool this past week and James cried all the way home (although Patch was in the car with us) when we had to leave.  He even told me "bye bye" while settling down to play with a toy.  I don't think he's going to be thrilled when the first day of school arrives and it's just me and him and Tessie on our own. 

-6-

I think I'm almost halfway through unpacking the boxes in the garage.  I've realized as I've unpacked that roughly half the boxes in there are filled with books. 

And after seriously searching at thrift stores and garage sales I finally found two chairs that I love that make the living room look a little less empty.  Here's what it looks like at the moment:

video

James thinks that this chair is his:


-7-

 Sometimes, when the newness of a new baby has worn off a bit for the older siblings, I forget how carrying a brand new baby through the house is a bit like walking around with a celebrity.  Right now we're still in the thick of things: 


Patch is especially smitten. 

And even James is pretty fond of her.

I knew both girls would be crazy about her, but I didn't quite anticipate how sweet the boys would be:


video

For more Quick Takes head over to This Ain't the Lyceum

Tuesday, August 9, 2016

6 Weeks and a Smile

She'll be six weeks old tomorrow and I'm finally getting about 10% of her smiles. 

Previously 100% of her smiles were directed at the ceiling fan, which let's face it, is still the recipient of 9 out of 10 smiles around here.  Babies love ceiling fans.  What can I say? 

I do totally use it to my advantage though, when I'm folding laundry and she wakes up and is about to cry . If the ceiling fan isn't already on I quickly flip the switch and it immediately catches her attention and most of the time it makes her one happy baby.



All the kids love her but Patrick and James were especially enchanted this morning since she was wearing a Minnie Mouse dress and they think that all things related to Mickey Mouse are wonderful. 


And I realized that Maggie allowed me to start putting her hair up and started wearing a bow the same week I started putting a little bow in Tessie's hair.


Tessie is quite the trend setter around here. 

Saturday, July 30, 2016

Tessie's Newborn Photos

As I was sitting down to write last night's post I realized that I never shared Tessie's newborn photos from the little hospital photo shoot here. 

These were snapped our third day in the hospital.  She was already trying to win the prize for most laid back, easy going baby of all time. 









Friday, July 29, 2016

One Month with Tessie

Can you believe that it's already been a month since Tessie was born? 

I can't. 

So far she is the quietest baby that we've welcomed into our home. 

At three weeks old she slept for nine hours.  And then she woke up and nursed for half an hour before going back to sleep for another four hours.  I was shocked when I realized how much time had passed. 

And she's continued doing that regularly for the past week.  She's also continued to grow and hit the top of the growth curve like her big sisters both did at her age.  I've sadly packed away the newborn clothes already... and in a very short while the 0-3 month clothes will have to follow them into the plastic bin:


Maybe her laid back nature is the reward for surviving a particularly high needs baby who woke up hourly every night for the first eighteen months of her life.  I'm still a little shocked by her easy going nature at this point... and keep waiting for it to wear off and for the suddenly decide that she wants to stay up and party all night!


She already has more neck control and strength than James had at five months.  I didn't realize just how wobbly he was until I began to compare his gross motor milestones with Tessie's and started thinking about how hard it was to hold him when he was five months old and still so wobbly. 


And these last few days (after being cleared by the OB early since my OB's practice is closing down in the next couple of weeks) I've thrown myself into unpacking, setting a goal of being able to break down a few empty boxes a day. 

Our house is still looking rather bare, both because it's bigger than the old house and because the garage is still full of boxes waiting to be unpacked. 

My goal is to be unpacked before school starts next month. 


Patch still thinks Tessie is the greatest baby ever.

He's also asked me twice if there's another baby in my tummy yet.  And if there is, can we name this baby Jesus? 

When I told him there wasn't he asked me to open my mouth and tried to peer down my throat to see if he could see another baby... and the two times that I didn't wear a C-section girdle (they really, really help with pain when the incision is healing) he pointed out that it looks like there's a baby in there so maybe I'm wrong. 

Three year olds are not the greatest self esteem builders in the world.




And that is the latest in Tessie news! 

I can't believe how fast the last thirty days have flown by! 

Saturday, July 16, 2016

On Disabilities, Educational Decisions, and My Crisis of Faith

I've written and rewritten this post, both typing out the words and forming them in my mind over and over again and then pushing them away, resolving not to share them with the world, and then feeling them bubble up again as I wonder how many others have felt this way, and if my writing might help someone else out there feel a little less alone.  And then I wonder if I can tie the ends together of the many subjects that lead together to my ultimate point, and if anyone else would even see the point buried under all the moments that led up to it. 

So maybe I should begin with a question? 

Can we really expect our children to be for life, that is to support life in all it's stages and forms, when all they ever see is people who are exactly like they are? 

I've written those words down as a special needs mom, because that's one of the things that I am, but in this current moment as the world swings round, through events that are crushing and sorrowful, I realize that it can be read in more than one way. 

I'll write from my own experience though, and let whoever ends up reading this whole thing take from it what they will, mostly because right now in this moment, I'm too exhausted to do much more than untangle the threads before me and see where they lead. 

Or maybe I should have begun with a statement? 

I realize that these past months have led me through a crisis of faith of sorts, although not the kind I ever expected, because it wasn't a crisis of believing that Christ died for our sins, or of believing that the Eucharist is the body and blood of Christ, or of believing that our Pope is the successor of Saint Peter, or of anything of that sort. 

It was a crisis that came from the realization that there seemed to be absolutely no place for my family within the everyday life of the Church as people come together and form communities to worship God.    

And if I'm honest, if I hadn't clung with every ounce of strength to that belief in the True Presence, I have no idea where I would have ended up. 

This is how I've arrived at this place... and how I've been slowly moving past it.

This past year has been a crush of appointments. 

Every time I think I've gotten one thing worked out, that I'm sure that at this appointment the specialist will say that maybe we just need to go to yearly appointments, the opposite happens and suddenly he needs to see us in four weeks (which, thank goodness, is really more like six or eight since he'll be booked solid that far out) and oh, I need to refer you over the see (insert name of another specialist) and I'm going to advise that we order this particular test (that of course requires sedation, which is always kind of traumatic) because we've been taking things very slowly and monitoring the delay, but after a year I think we need to do some more in depth testing to eliminate physical causes for what's going on

We generally have somewhere around 50 appointments a month.  I stopped counting a while ago.  Most of them are therapy appointments.  A lot are doctors appointments.  I think we had around 90 doctors appointments this last year.  Give or take a dozen.

There are the ABA appointments (which Maggie begs to go to even on weekends, and where she tells her therapists that she loves them), and speech appointments and OT appointments. 

There are James' PT appointments and his bi-monthly appointments where an early interventionist comes out the house and works with him on speech and fine motor skills and gross motor skills and asks if he's been pointing at all, and has he lined up cars again? and where Patch laments the grave injustice that he only has speech during the school year, which he probably doesn't even need anymore, and that no one brings out a giant bag of toys for him to play with every two weeks.  Oh and had I gone in to get James fitted for orthotics yet?

There are allergist appointments where the doctor orders more blood tests too further investigate how allergic Sadie is to certain things, and looks at her results and then looks shocked when I say they haven't given me an epi pen for her yet, and there are the various other appointments with our developmental pediatrician who has been keeping a close eye on things because she senses there is a theme of some sort in the delays that she sees and she, like the geneticist and neurologist, is waiting to see where the test results that our insurance finally approved (chromosomal and DNA testing) lead. 

And of course there were the OB appointments and the hospitalization for the flu and then for the hospitalization for the kidney infection and all the other scares that this last pregnancy, which I consider my only really hard pregnancy, entailed. 

In a way this year has knocked me off my feet.  I find myself thinking "just keep swimming, just keep swimming" because if I stopped I knew the exhaustion would catch up to me. 

Which is why when Sadie asked me if she could go to school at our parish school I stopped and really, really thought about it. 

Because while I'd made a point to get her involved in as many activities as I could squeeze in, from ballet, to Little Flowers, to a couple playgroups, and I'd just bought a brand new boxed curriculum because I wasn't quite up for piecing my own together anymore, I also knew that I was getting to the point where I was stretched so thin that she needed more. 

So Paul and I talked.  And prayed.  And talked some more. 

And I told her that yes, I would set up an appointment and we would go and take a tour of the school. 

She had made her first communion the week before, and she had made friends, both through Little Flowers and at the retreat.  She was thrilled to walk around the school with an administrator. 

And as we walked I mentioned that she did have ADHD, but she that she works really hard to focus.  It mostly was seen in the way she flaps her hands when she gets really excited.  And that she was going to be tested to see if she was on the Aspie end of the spectrum, because her pediatrician had a hunch that she might be on it, but that that mostly was seen in her passionate interest in various subjects, like how she walked around reciting the names of the planets when she was three, or how she can recite word for word answers to questions about our faith from the catechism. 

The conversation turned quickly to his own experience with people on the spectrum being violent.  I assured him that she isn't violent.  She's never been violent.  Not at all.  He nodded and continued to tell me about the school but at the end of the tour he told me that they would need to see her test results before they would even consider admitting her. 

Fine, I thought, still rather disturbed at the conversation that seemed to indicate that he thought all people on the spectrum were violent.  Then I received an email saying that she was welcome to come and try being a student for a day at the school.

She was over the moon. 

I coached her on standing in line and raising her hand to ask or answer a question.  And I walked her into the cafeteria, where three little girls squealed her name and ran over to hug her and my heart just about burst. 

She had friends there.  The parish is orthodox and I knew she'd receive an amazing education there.  It was really all I could ask for. 

And so she went to school and came home and told me about how much fun she had and I received an email from the special ed teacher about how well it had gone and asking me to come in for a meeting on the following Wednesday. 

I relaxed.  They'd seen how well she would do.  I'd go in and sign the papers and we'd be set. 

As you may have guessed, that wasn't how things went. 

I went into the meeting and heard that at the first communion retreat she'd had an "incident."  The "incident," was that there was a game being played where kids were chosen and she hadn't been chosen.  So she'd started to cry. 

That was it.  No yelling.  No screaming.  No tantrum of violence.  Just tears

But it didn't really matter.  I suddenly had the distinct impression that the "student for a day" day had been granted so that he could look for an excuse.  A few times, I was told, she was confused about what she was supposed to be doing in class and looked around the room instead of watching the teacher.

Was this real? 

Then the administrator began to explain to me "what autism is."  It doesn't matter how smart they are, he said, kids with this disorder.  And as he spoke I began to realize that my explanations and the ample education I've received in the last three years since Mae's diagnosis wasn't going to get me anywhere when speaking to this man.  The stigma and his own misconceptions were far too entrenched. 

The classes I'd taken, the trainings I've received, the books and studies I've poured over, the thousands of hours of therapy sessions I've sat in on, weren't going to change his mind. 

Similarly when Paul, who has ADHD, spoke with him he received a lecture about "what ADHD is."

Why wouldn't I drug her?  We'd tried ADHD meds, I explained.  They were a nightmare.  They made her incredibly anxious and depressed.  She could focus far better on them, could sit perfectly still for hours at a time solving math problems for fun, but she was miserable and sad and not the little girl I knew. 

So it wasn't an option?

"I'm not going to allow her into this school," he said, "unless I am one hundred percent certain that she will succeed."  I stared at him.  How can you ever be one hundred percent certain that any child will succeed?  But I couldn't get out the words.  I was completely blindsided.  It was absurd. 

"We would love for you to be a (insert name of parish) family... but..." 

I thanked him for his time and hoped that the papers from the test results could convince him that she would do fine in school.

I called a social worker who told me that I would probably have trouble with the parochial schools but who put together every evaluation they had including an extensive report by a psychologist that said that she was extremely good at math but had poor gross motor skills and could benefit from OT (which she'd been discharged from because she made such great improvements) and speech (which she'd been attending and which the school offered). 

The social worker highlighted the suggestions, making it clear that she shouldn't need any special exceptions at the school.  Everyone from her developmental pediatrician to the psychologist thought she would do well. 

I brought the stack of papers straight over and handed them in and waited for a call. 

And I thought.  And thought.  The statement about only allowing in kids that they were 100% certain would succeed went through my head over and over again. 

And the doubt crept in. 

Did I want her going to a school where an administrator had such a skewed view of kids with disabilities?  Where he was only willing to take on those that he saw as a sure thing?  100 percent?

I thought of my own education at a Lasallian college and the motto, "Enter to learn, leave to serve."  I thought of the kids I'd gone to school with who had gone into the teaching program and gone out to teach in inner city schools.  Were they only taking on kids that were a "sure thing?"  Somehow I doubted it. 

I thought of my own father who was a superintendent for decades, and who also taught educational leadership at the same Catholic college I attended.  I thought about how he'd often said that anyone could catch a kid making a mistake.  The truly great educators caught them doing something right. 

And I couldn't help but feel that if she went to this school everyone would be waiting for her to make a mistake.  She'd already been criticized for crying when she didn't get picked during a game.  It had now been brought up three times by two different people as Paul began to have conversations to try to clarify that she was entirely capable of attending the school.  Could I really expect that she would have a fair chance?

Every day she asked me if they'd said she could go to school yet, and every day the pressure grew.  Why weren't they saying yes, she asked, what could she do to help?

My heart was breaking.  At nine months pregnant I cried many, many tears.  And the words "we really wish you could be a ______ family" went through my mind over and over again until I felt sick. 

As a special needs mom I've felt how hard it is to find any place for my family within the Church.  There are young family events at our parish, but they always involve, and in fact revolve around, food (and Maggie just doesn't understand yet why she can't have the same thing that everyone else is having).

We used to try to go to things, but inevitably she would somehow get her hands on a doughnut and be sick for two weeks and if I have to pick between not almost going to the hospital and going to a parish social event I have to pick not being sent my our pediatrician to the pediatric emergency room for gastro problems. 

Mass is hard.  Sometimes it's impossible.  Sometimes I leave halfway through in tears. 

I hadn't sat down during Mass in years, living perpetually in the vestibule, but that didn't stop the people who were really disgusted by those with disabilities (or small children who don't sit perfectly still) from shaking their heads or glaring when we'd come forward for communion (although I should note that most people are not like that... it's just those who are stand out in a very special way...). 

And in the moment when all these thoughts broke upon me I felt done.  I was angry. I felt like I'd tried to find a place for my family and that that place just didn't exist.  And someone had finally said it out loud. 

And it made me think hard about how we welcome those who are different from us into the Church.  Do we welcome them?  Or do we glare, or ignore them?

If our children only ever see people who are exactly like them how can we expect them to be unafraid of those who are different?  If we've banned all children with disabilities from our parish schools, and made it nearly impossible for their families to be part of parish life, can we really expect those same children, or their families to warmly welcome a child with disabilities into their hearts if that is the path that their life takes them down? 

Being around the differently abled can teach us how wonderful the different gifts we're given can be.  Banning those who are different from sight only increases the fear of what we don't know. 

We can preach about being open to life and accepting children who aren't what the world sees as perfect as a gift, but do we welcome them into our parishes on a practical level once they're in this world?  Or do we need to be 100% certain that they'll be successful as the world measures success? 

On day after picking up Maggie I felt inspired and drove over, across town, to another parish and pulled into the parking lot.  I drove slow past the playground and pointed it out to her.  "Look at this school!" I said enthusiastically.  "Look at how big it is.  And look at the church.  It's beautiful!  Oh and the playground is huge!" 

On Sunday we went back to that parish.  We asked if they had a cry room and were told that they did, but they would love for our children to be there in the main room with everyone, and if they had a hard time with that there was a beautiful glass walled chapel off to the side where we could still see everyone.  If that didn't work there was a cry room available.

For the next month we spent Mass in that side room, sitting together as a family for the first time in years.  Two weeks ago Tessie was baptized there.  Sadie's test came back totally normal and we applied and she was accepted into the new school. 

She's got her uniform and her book bag and she's practiced reading just about every night.  She's gone to drama camp and vacation bible school and zoo camp to help "practice" a bit for school.  And she hasn't asked me in weeks why the other school wouldn't let her go there with her friends.  She's been won over by the impressive playground and went on a tour of the school and met the new priest that's just arrived and the principal. 

This last Sunday Maggie was having a harder time than she has since we'd made the change.  She kept making little squeal sounds, and giggling.  The room was almost empty, but an elderly woman sat on the other side of the room, and I saw her glance over at us.  I was nervous and self conscious as I held Maggie and hushed her and tried to keep her from disturbing anyone. 

At the sign of peace the woman walked over to me from the other side of the room.  I smiled nervously, the baby on my chest, holding tightly to Maggie, as she smiled and told me that she loved hearing my daughter's beautiful voice and that she should really be the children's choir and that both girls were simply beautiful.

As she walked away I almost started to cry.  It was the first time someone had said something kind about the struggles that we've had at Mass, in a very, very long time, outside of when we've visited the parish where we were married and the girls were baptized in California. 

I hadn't thought I'd needed those words, that sort of acceptance, but as I struggle to hold back tears even at the memory I realize that it was a sort of gift she gave me,  that I desperately needed after this past year, and especially after the last few months of feeling very much like we didn't belong. 

I'm not sure how to end this.  This next year we will have on child in parochial school, one in public school (I think), and one who's homeschooled, plus a baby and a toddler.  I guess all that is enough for another post. 

I'm looking forward to the changes that I didn't think I'd ever want and a short while ago didn't expect.  All of this should make the cascade of appointments more manageable. 

And we'll move forward to see what the next year has in store for us, hopeful that these changes are the right ones and excited to see how life will change with this new change of plans.

And I'll be praying that we can all accept those who we feel are so very different than we are, and that we can welcome them into our lives and realize that perhaps the differences aren't as great as we imagined, remembering that Christ died for their sins as well as our own and that he must see the division in this world with great sadness.

Thursday, July 14, 2016

Annery's Handmade Rosary Roses

When I first saw that Annie of Annery at Home was making rosary roses at her shop Annery's Handmade, I knew that they would be perfect for any of kids in our house. 

In case you've never heard of rosary roses, they're soft roses that can be held in a child's hand, often while they're learning to pray the rosary.  The one's that Annie makes are made of soft, beautiful cotton and they were a hit the moment the kids laid eyes on them. 

When I was given the chance to review a complementary set I jumped at the chance and when they were arrived they were every bit as soft and perfect for little hands as I'd imagined they would be:


I gave them to Sadie, who had just made her first communion and who has loved the rosary since she was small.  I knew that she would love the idea of rosary roses and that she would benefit from having something to hold in her hand while she was praying the rosary. 


The second she opened the package she had to use them: 


And while she was focused on praying I was snapping pictures so that I could share what a hit they were here.


However the pictures I really should have snapped were the ones of Patch trying, for weeks after they arrived, to steal the roses from Sadie.  He found them every bit as wonderful as Sadie did and made a point of sneaking into my room (where Sadie kept them to try to keep them out of little rosary rose swiping hands) so he could have rosary rose time. 

These roses are such a good idea for any little (and not so little) kid, but I would also especially recommend them for kids with sensory issues.  They're made with 100% cotton yarn, so they're soft, and they just have a nice weight for holding and squeezing.  They also give small hands that might not be ready for little tiny beads something more solid to hold onto. 

So if you're looking for a wonderful gift for a child in your life I highly recommend these (and Annie's shop!).  They definitely have the seal of approval from the kids in our house!