I’m not even sure what to call this post but here we go anyway…

So… a lot has happened. William turned 7th, Mother’s Day, the annual end of the school year madness has commenced…

A year ago I was throwing away and packing up a life I’d lived in a house I’d lived in for 11 1/2 years. Things were changing and I was rushing and I NEEDED people. I NEEDED sharing.

Twelve short months later, I’m still madly in love with the place we live and the lives we are living, but something is different. Like, I’m outlining a book I haven’t sold different and also internally different.

For me, time is always an issue. If I do this, I can’t do that and I really need to do both of those things. As a result, a lot of things in my life have suffered at various times: relationships, prayer life, the cleanliness of my home, my sanity, my health… We serve a wonderful God who truly gives us the exact right amount of time we need and that’s no small thing. It is an incredible gift that we far too often take for granted. Moreover we tend not to ask God in manners of how we use our time in every day things. We specifically do not tend to ask the third Person of the Holy Trinity, for guidance in this area (or any area for that matter..).

This seed started sprouting for me the weekend of Joseph’s First Holy Communion when I went to Confession and the priest told me I needed to stop doing (or trying to do) everything by myself. I needed to ask for God’s help in everything. I needed to stop thinking of myself as a superwoman and acknowledge my weakness and reliance on God.

As the weeks have gone by…I’ve actually struggled with this. I’ve prayed before the tough stuff, “God, I need your help, I can’t do this alone.” Sometimes I have felt like it was easier than others or helped more. Still, I struggled. I began to realize the Holy Spirit was nudging me to make some changes in my life not just in regards to prayer but also in areas of health and relationships and other areas.

Last week I decided that for Faith Formation class I would have my students learn about Pentecost followed by a tour of our parish’s memorial garden. It was a very vibrant discussion of who the person of the Holy Spirit is and how the Holy Spirit works in our lives. As a child I remember a lot of attention being paid to God the Father and God the Son in the various Faith Formation programs I was part of and I know for sure we mentioned the Holy Spirit in the Sign of the Cross but as far as an explanation of this Third Person, well, there was the image of a dove and that was about it.

Thursday morning it all came to a head. The “a-ha moment” came when I first logged into facebook and saw headlines about a certain man selling a certain gun and deaconesses. It hit me: I’m out. I spent the following two days off facebook fasting and briefly logged in a couple of times over the weekend.

The problem isn’t facebook. The problem is me. I wasn’t listening to the Holy Spirit. I wasn’t praying and asking the Third Person of the Holy Trinity to help guide me. Sunday morning, at Mass, I listened as our pastor described a family with three children where the parents only spoke to the youngest child once a year of his/her birthday. This. This is why I wasn’t catechized, nor were my parents, about the Holy Spirit, because it just gets pushed aside. As an adult, I’ve come to see the beauty that happens when the Holy Spirit forces itself in through whatever small opening I’ve given and how that grace shatters me and breaks me open to the possibility of how it is to truly live God’s will and walk in His light. But do I ask for the Holy Spirit’s guidance and advocacy in my life and decisions? No. Not like I should.

But that’s all changing. As I’ve read the first readings over the past few weeks, the story of the early church told in the Acts of the Apostles, I have been touched dramatically at what these men lived through. They were born as Jews, God’s chosen people, but that alone, they learned could not win them salvation. Distressing, for sure. They made the unpopular and non-sensical decision to follow this man named Jesus who just called out “Follow me!” to them as they went about their normal daily routines. They spent three years listening, learning, and teaching. Then He was arrested and crucified (only the worst punishment EVER) and placed in a tomb. If ever there was a time for a crisis in one’s soul, that HAD to be it. Then the body was gone and He began appearing to them. He spent 40 more days with them continuing to teach them but He was honest and told them He would leave them again and when that happened, He would send an advocate. Jesus said a lot to the disciples that didn’t make a lot of sense to them, I’m sure this was one of those things because although their faith had grown wider and fuller than they ever could have imagined, they were still human. That moment, the moment in the Upper Room when they heard the wind, it must have been terrifying. But the thing that strikes me most now, it wasn’t their birthright, nor their proximity to Jesus and hearing His word and seeing Him perform miracles that enabled them to start the Church…it was those plus the Holy Spirit that made it all happen. Without all three Persons, those of us who are Christians today, would not be. We understand Jesus’ teachings now because of the Holy Spirit.

For me, the Holy Spirit will not just hang there at the end of the Sign of the Cross and the Creed. I will seek the Holy Spirit the way it has sought me over the past few years. I will actively pursue it in prayer. I will realize that no, I cannot do it all alone, and that means asking God, Father, Son AND Holy Spirit to help me. To guide me. To carry me. The Holy Spirit chose me again and again when I allowed myself to be broken open by grace. Now I choose it along with the Father and the Son and trust it to lead me to this better use of my time and talents. To help me become the person God intended me to be.

Come Holy Spirit, fill up my life, guide me to the paths that are true.

 

Entitlement and Charity

So, I’m sure most everyone has seen and used the facebook feature “on this day” as well as “timehop.” Somedays I remember what will come up, like my kids’ birthdays, my anniversary and even some secular stuff.

Today I saw a link where I commented:

I get that this is the wish her son had, but I totally think Make-a-Wish has a valid point. They don’t want their name associated with just anything. At this point, I think her best option is to contact Comedy Central and see if they’d be willing to facilitate anything. And have her kid pick a different wish!

The story here is what I was referencing. In short, the woman’s sixteen-year-old son was selected by the Make-a-Wish foundation and his wish to meet the creator’s of Comedy Central’s show South Park, Matt Stone and Trey Parker. His wish was denied by the organization because of the content of the show in question.

The comments on the thread mostly said, hey, I get that he’s disappointed but Make-a-Wish is within its rights in restricting wishes in this way. Many also advise her to contact Comedy Central or to start a petition or use social media to attempt to contact the men in question themselves. The mom shot back at one commenter who was supportive of MAW’s decision saying that they granted wishes for adults, so why couldn’t they grant this? The granting of wishes for adults is actually not a practice of MAW. I want to believe this woman is confused because the website states that the age limit for the organization is 18. Regardless, there were many alternatives given and several people (including one whose child was denied for being too young and then tragically died days after her birthday) who urged her not to launch a campaign against what is a good organization.

A few brave souls also dared to ask the mother why she felt her son was entitled to any wish, even if he did have cancer? After all, deserving kids are denied wishes all the time and some die before they can receive their wish and a few the organization cannot make come true for various reasons.

As part of the special needs community, I’ve witnessed this form of entitlement vs gratitude with parents when dealing with charitable organizations. “Well my child has [insert syndrome or disorder] so he deserves this!?” This even happens with things denied children without special needs routinely. It is disgustingly competitive, especially when dealing with autism, because there are so many children and so little time and funding.

An organization near and dear to our hearts, Surfers Healing, recently announced a huge change to their camp sign-ups. Before the method was, as Edna Mode from The Incredibles would say, a, “Luck favors the prepared” method. Meaning sign-ups took place on a certain date at a certain time and parents would set multiple alarms and be refreshing the website for an hour before sign on time and then once the link opened type as fast as their fingers would go. Camps were filled in less than 10 minutes. For the past several years, we have gotten in every time.

This year the method is by lottery. Parents have a full week to get their child’s information in online and then a computer system selects randomly the required number of participants (with a certain percentage being first-timers) and puts the rest of the registrants on wait-list. And registration for multiple camps “just in case” the child gets into one is no longer highly discouraged but outright banned. Parents of kids who have never participated are in high praise of this system. Those who have in the past admit it is fair but there is a rumble of anxiety and upset as some of them fear telling their child with autism that this year they won’t get to surf. We’ve decided we won’t attend if we don’t get in as Shelby will not understand why we are there if she is not surfing. It’s no ill will, it’s just making life easier for her.

I am waiting more anxiously to see how parents react to the lottery system. In all honesty, fair is fair and this is the way it probably should have been done from the beginning. I am curious, however, to see the reactions not only of parents of old-timers, like me, whose children do not get in but also of parents who could not get their child in previous years and for whom the lottery doesn’t work first time out of the gate. Will they still feel it’s a fair system when, in the ends, it treats them the same way the old one does? Statisically, it’s going to happen, someone stymied by the old system will still get left out of the new one. And this overwhelming, “our kid has autism too! he/she deserves this” entitlement will rear it’s head again no matter what for so many kids unable to participate. And that’s not even counting the people who will miss the entire week sign up altogether for whatever reason. The pleas of “can’t an exception be made” will be deafening.

The common factor in all “charity entitlement” cases is that people cannot see beyond their own situation. Returning parents cannot see past their son or daughter’s disappointment and their own warm and fuzzy feelings on that day the same way parents of kids never chosen cannot get past their kid being “rejected” once again by what they see as an organization they see as there to serve them.

Charity is not the same as services provided by the private sector or the government and this is where a lot of people get thrown way off course. In the private sector, you are paying for a service. So, for example, if a company is offering to take your child horseback riding, you pay a certain amount for the lessons, you sign contracts, you expect service and you rail if services are not provided. With government services, you apply, you go through an approval process and if you are denied, you can request reviews and hearings to plead your case. Parents, in particular, of children with special needs are used to fighting with insurance and government to get their children services they are entitled to like therapies and education. Parents often bring that same fight to charities hoping for a similar result. This is not the right approach. Charities exist because of the kindness of others and their donations which determine where and how much they can contribute. Special needs parents often don’t see an organizations limitations or fully comprehend them because they view them in the same way as a for-profit company or governmental department. Moreover most of these special needs parents are not engaged in any form of fundraising or publicity that would help grow the charity they are asking for something from. Some legitimately do not have the time because of their child’s disability. Then there are those who simply feel they shouldn’t have to do it because. We need to stop viewing charitable organizations in this way if they are to continue being successful for our kids. When a homeless shelter is out of beds, they turn people away. When a food pantry’s shelves are empty, they stop giving out food. Why is it different for a Surfers Healing? When camp is full, no more names can be added (each camp is required to have permits from the local municipality that state an exact number of children who will be taken out into the water which is 99% why the limits). Most grant organizations require a detailed accounting of how monies will be used in a project. Why can’t Make-a-Wish put reasonable limitations on wishes?

I live the life of having a child of special needs. I know well the rewards and the heartbreaks. But I also know when I’m being a reasonable mama-bear with a therapist or teacher whose job it is to provide my child with a needed service and how not to be an asshole to an unpaid volunteer at a non-profit is doing their best to be fair in providing a non-essential extra for my kid.

Free Range Parenting and When Chickens Come to Roost

I am actually a big fan of free range parenting. I let my kids walk to the end of the units and throw trash away. I let them play outside with an adult not physically present both in our gated postage stamp back and out front and on the side yard. I even allow my boys (8 and almost 7) to use public restrooms alone. In our old neighborhood they roamed unsupervised for hours at a time riding bikes, taking walks, playing games with friends…(there aren’t many kids here their ages).

But I did all this with a wary eye. See, I had a police officer come to my front door once. The boys were playing in the median in our cul-de-sac. The officer was doing patrol and saw them. They were six and four and while there were no adults around, we could see them from inside our house. The officer didn’t exactly take them by the collar, but he might as well have. He informed my husband that according to state law, the kids were being neglected. State law says they both had to be 8 or one of them over 18 to be out and about like they were. An adult had to be physically present,  not just watching from inside the house or even the front porch. My husband had been in our front yard just feet away a few minutes before and had gone inside to use the bathroom and get something to drink. Thankfully, we were let off with a warning.

Like all great parents, I was incensed that my parenting was being questioned and undermined. But at the end of the day, the law was the law. And until we moved, we were subject to multiple law enforcement drive-bys. The kids weren’t allowed out of our front yard if we weren’t outside (unless they were in a friend’s house). It wasn’t safe enough to risk the cops taking them.

I get that parents feel like I do, we want our kids to have freedom and explore and learn for themselves in an unstructured way. I’m not naive, I know Tina Fey’s face was slashed when she was a kindergartener by a mentally ill stranger while she was playing in the alley behind her house. I’m aware kids get grabbed out of shopping carts and lured into vans while playing all the time. But I also know there is a very fine line between free-range and irresponsible parenting.

A former co-worker posted about an eight-month-old left in a running car at a grocery store. No older children in with the baby, mom just didn’t want to wake the baby (who was on a tight schedule), so she left the car running (so the AC would be on), locked it, and went into the store. Here’s the thing, the car didn’t actually lock. Her car could not lock with the key in the ignition remotely. She had no idea and threatened to sue the store when she was paged to the front because other patrons had noticed a running car with no one but a baby in it and that it was unlocked. Seriously, someone could have gotten a free car and a baby that day. This woman was irresponsible, plain and simple. This case is clear.

But what about those not so cut and dry cases. The favorite one I hear frequently is the young children left in the care of the older children in the car while mom runs in “just for a minute” to grab something or get a child from a dance rehearsal or something similar. We are trusting our children to care for other children and they do it all the time at home…

I live in an area where children are frequently left in hot cars and some of them die. In a few cases it’s a change in routine (Dad is supposed to drop the kid, who is sleeping, off at daycare which he hasn’t done in a few months and forgets and drives to work) but in more, it’s that the sleeping child was taking their regularly scheduled nap and mom or dad needed to make a stop and was only going to be a minute and then they get distracted, or the line is really long…the line is a little bit gray here. I say a little because most of us wouldn’t leave a baby completely alone, that’s why we have a nine-year-old who is capable of calming the baby and rolling down windows, right? He or she is allowed to ride his or her bike around the neighborhood alone, so sitting in a car with a baby is no big deal.

But what happens if the nine-year-old suddenly decides to get out of the car, and then locks the baby in alone, accidentally? What if she or he leaves to find mom and can’t find mom…

The fact, in that case, is that nine-year-olds don’t have the judgment capabilities of an adult. And they are not culpable. But the parent who entrusted the nine-year-old? Legally, they are responsible.

I’ve known moms who’ve let big kids (10, 9,8) take the little kids out to play in the snow and forget to bring all the little kids in resulting in frost bite for the one who didn’t get brought in.  I was at the beach in college where parents had a big group of kids together while they were socializing nearby. Suddenly they realized one little boy wasn’t there. He had wandered over a mile down the beach when ocean patrol finally found him. He was five, the parents assumed he was safe because they were in the vicinity (although not keeping the most watchful eye) and he was under the care of his 11-year-old older sister. Last year when Abby Johnson tried to give helpful hints to not forgetting a child in the backseat, she was met with hostile opposition and hateful comments about forgetful parents for the most part but she also got responses like one from a mom of nine who relied on her teenagers (fifteen and up) to get the littles out of the van one day and the sleeping six-month-old got missed. This happened somewhere in AZ and thank God her husband figured out the baby wasn’t in the house within a couple of minutes.

In the end, in all of these cases, had the ending been tragedy, the parents would have been held responsible for the death or serious injury. Even if charges were not filed, in the court of public opinion the verdict would be guilty.

And so between letting our kids play unsupervised because of the limited risk of anything happening that is “bad” and making judgment calls about how old is old enough to be responsible in a very, very real sense for younger children we have this story out of Florida: the story of Perry Cohen and Austin Stephanos; two teenage friends described by family as “experienced watermen” who went missing months ago in the ocean and whose craft was recently found. The boys had been allowed on the boat multiple times before unsupervised. They were given very clear instructions and boundaries. The parents had no reason to expect anything different would happen. But Perry and Austin decided that day to leave the perimeter set by their parents. Who knows if they’d done it before without getting caught so they figured it was no big deal or decided that fateful day to take a chance. They made the immature and inexperienced decision that day, however, to sail on rough seas and into stormy weather. They were, in fact, only fourteen-years-old. Not old enough to vote, smoke or even drive a car yet. And at the center of the storm swirling about iPhones and electronic devices are four parents grieving the choice to trust boys, not men.

My parenting methods will not change because of this but I am always careful not to put adult responsibilites on the shoulders of children who do not have the experience nor maturity nor even the reasoning to handle them. Kids make poor decisions when they do not have guidance in new, unfamiliar situations. They are not miniature adults and therefore we should not expect them to behave as such. It’s not fair to them and sometimes has disastrous consequences. Free range parenting should never mean “anything goes” and no one can expect that there will never be consequences. Like all parenting, it should be done with careful thought and consideration and part of that should be understanding that no matter how mature they behave, children are still children and parents, are still in charge and bear the brunt of responsibility.

Mercy from this side of the Altar

This is the Year of Mercy, which if you are Catholic, you should already know. And much debate rages on about how the faithful should celebrate and what constitutes “mercy.” Because apparently the Spiritual and Corporal Works of Mercy the Church sets out aren’t good enough.

A week ago, my son received his First Holy Communion and debate again started up. Do we receive on the hand or the tongue? Well, my kid is, thus far, the only new First Communicant at our parish who received (and continues to receive) on his tongue. His reasoning has nothing to do with Catechesis (as he has been taught that receiving on the tongue and on one’s hand are both valid) but the fact that he’s a lefty and the whole right-over-left-lift-with-your-left-then-Cross-with-your-right is really confusing to him. Also, I receive on my tongue. Bottom line: he’s not doing it because he feels it is more valid to receive this way, it just happens to be easier for him. He’s eight, if you want to pick on an eight-year-old for his reasoning, well bully on you because he believes in the True Presence, he knows what transubstantiation means and exactly when it happens during Mass. Your average adult Catholic does not. But…I digress…

This debate of validity often leads to great disparagement of priests and dioceses. For an example, remember when this happened a year ago at the funeral of Katrina Fernandez’s grandmother? The original post tells the tale of a truly awful event and one that should be avoided whenever possible by all clergy. The follow-up post makes some clarifications and Fernandez is careful to point out that this was not intended to be a N.O. vs M.E.F. debate (because inevitably that’s what happens with these kinds of stories). She also regrets airing the problem before speaking to the priest in question. She states in the follow-up that she got a satisfactory response when she did contact the priest. 

What happened to Katrina happened because a priest and parish “did things a certain way.” Had she been to a parish I know and the pastor emeritus was presiding, it would have been a different story. (This is where mercy comes in…)

Father B. at St M’s  is retired from active ministry with a cancer diagnosis. He is also the priest who baptized Joseph as an infant. This past New Years, for the Solemnity of Mary, we attended this parish and while I had known about his diagnosis and decline, I was shocked to see how frail he appeared. At Communion, only Extraordinary Ministers of the Eucharist gave the faithful the Body and Precious Blood. After Mass, I made sure to bring Joseph over and tell Father B. that Joseph would be making his First Communion later this year. He was very happy to hear this and see that baby he baptized 8 years previous.

Last weekend I found out why Father B. rarely distributes the Body of Christ at Mass. His arthritis has become so bad that he can no longer safely place the Eucharist on the tongues of the faithful. And the faithful, in response, behave poorly. As in, stomping out of Mass like a two-year-old poorly. And frankly, if that’s your attitude, you might not be in a state of grace to receive…

If this was the situation I found myself in, I would simply receive in my hand. This is a small parish, they are truly blessed that they have a retired priest in the vicinity who loves Jesus and the sacraments enough to still take part and fill in for the parish priest. There is no parochial vicar here. Jesus in the Blessed Sacrament is still Jesus regardless of how we receive Him. Yes, from the perspective of not having Jesus fully consumed because particles remain on one’s hands, it is best to receive on the tongue, but in a situation like this one, our mercy should outweigh our sense of piety.

But this whole “Communion in the hand vs on the tongue” debate brings about a larger idea. Do we show mercy to our shepherds? Really, seriously, are we merciful in our assessments of them? Do we pray for the priests we have that aren’t our favorites?

A few years ago I watched, in horror, as various former parishoners of a particular parish ripped apart the pastor on a facebook forum. They denounced his every move and his every motivation from his homilies to how he ran the parish outreach. And nowhere did I see anyone saying that, while he may have upset them by his words or actions, that they were praying for him. Maybe some of them did, but it’s hard to believe by the viritol spewed that any of them thought about him except to disparage him. There was definitely no mercy extended in those comments.

I agree, priests that are committing liturgical abuse shouldn’t be excused but should our immediate reaction be burning at the stake? Because it wasn’t a far leap in that conversation for people to start calling for it. And where I live, with a shortage of priests and vocations, people seem to forget that they don’t have as much choice as they did in the northeast or midwest or California. There’s a better chance of getting a dud who has bad homilies than a brilliant, holy mind who does everything right, that’s just the state of things.

Then I run into the people who are angry at the state of things and take it out on the immigrant priest who left his homeland and learned English to serve in this tiny diocese. Really? The African and Latin American priests we have are acclimating to a different culture and language so that you have a chance to receive the Eucharist and your response is to be angry that sometimes they are difficult to understand?

And let’s not forget our priests are human too. They are subject to the same temptations and sins we all are. Which is why they need our mercy even more at times. Instead of complaining, offer to help. If that is rebuffed, instead of skewering someone in the virtual world, pray for them. Ask St John Vianney and the Blessed Mother to pray for them. Let’s not forget, not every priest is ecstatic about being assigned to their particular parish either. As our pastor said in a homily once, there was comparison even amongst the priests in the diocese about who got which assignment and not all of it happy. They serve out of obedience and they deserve a flock who, at the very least, is willing to pray for them.

The Spiritual Works of Mercy, as outlined by the USCCB here do not include bashing someone or slandering them. They do include bearing wrongs patiently and instructing the ignorant and admonishing the sinner in a certain way. It’s not enough to simply be angry at your priest or any priest. And as we continue on in this year of mercy, perhaps we can consider how to utilize these Spiritual Works of Mercy when encountering our priests and not reacting simply on our emotions and our own fallen state.

 

 

Confession, Adoration, First Communion…oh my!

I’ll say the weekend began on Friday because Jeff took the day off in part because Shelby was sick and also because he wasn’t feeling great but figured he could help clean in anticipation of my parents’ arrival that afternoon.

After cleaning and lunch (and a run to make a payment for me) my parents arrived shortly before the boys got home from school. My dad stayed with Jeff and Shelby as my mom and I walked to meet the boys at the bus. They were really excited their grandparents were waiting for them when they got home.

That evening we went to Sears Landing for dinner and enjoyed a nice seafood meal. We’d never tried the restaurant before as it’s small and usually very crowded in season (which we’re on the cusp of) but we were able to get a table and enjoy a view inside (it was too chilly to sit in the outside area, even with the plastic siding pulled down!).

The next day Joseph and I had hair appointments and my parents took William to the grocery store to pick up lunch items. I didn’t do before and after of me but I did of Joseph.

This is what we were going for and I think she did a great job:

After our haircuts, we went home and had lunch. Joseph and the adults had subs. Shelby ate Doritos. William ate a peanut butter sandwich and mac and cheese.

After lunch we watched Home which my parents had never seen before and enjoyed. Since it is William’s favorite movie, he really enjoyed sharing it with them.

Movie time over, my mom, Joseph and I headed over to Infant of Prague for Confession since it was closer and had an earlier time. Infant of Prague also has a Perpetual Eucharistic Adoration chapel which was perfect for our Penance. It also gave Joseph some time with the Blessed Sacrament before he made his First Communion the next day.

We headed back home and went out to Rick’s which is a sports bar/restaurant dedicated to Pittsburgh sports, in particular the Steelers. We decided to go with meatier meals than our Friday fare (bonus points as it wasn’t completely intentional to go to a seafood restaurant on Friday).

We came back home to rest up for Sunday.

Sunday morning, Joseph came downstairs at 6:30 AM (according to my parents) in his suit, ready for his big day. Nevermind that 6:30 was five hours before the start of Mass! We had breakfast and got the other kids and ourselves (all the adults ready) for Mass.

When we got to the Church, (30 minutes early, as we were instructed) the kids were excited but Joseph had a much more muted excitement. You could tell he was taking all of this very seriously. I sat with Jeff and Joseph’s Godmother, her husband and son on the first row. My parents had Shelby and William and sat with Jeff’s parents. Also in attendance was Shelby’s very first ever occupational therapist and her husband who are members at our parish. This was also their regular Mass but she’s known Joseph since he was a year old and was very excited to share the day with us. I had originally thought that our associate pastor would be celebrating this Mass (we love both our priests) so I was surprised to see our Pastor (also Shelby’s Godfather)  was the celebrant.

Shelby did exceptionally well, she needed to get up just before the start of Mass and so my dad took her out. She proceeded to take him on a tour of the entire Church/School campus. They made it back just after the Offertory and she made it through the remainder of Mass in the pew and got to see Joseph make his First Communion.

The parish has a no photography policy during Mass but these were some of the highlights of the day.

If you look closely you’ll see almost all the grandparents (my dad was taking these pics), all three kids, Joseph and his Godmother, his Godmother’s son, his catechists and his class.

Following the Mass, the parish had a reception for the children with cake and lemonade and gifts for the children from the Knights of Columbus and Ancient order of Hibernians. Joseph got a First Communion Candle, a St Joseph Missal and prayer card for before Communion, a Rosary and his official certificate.

We wanted to celebrate some more so we all went to a downtown Wilmington pizza place called Slice of Life. Joseph had wanted pizza for his celebration and they had other menu items as well. We enjoyed a great meal and friendship.  But what happened at the end of the meal was one of the highlights of my day.

The waitress came up and knew we were celebrating something and said, “I’m not sure whose birthday it is but happy birthday!” When I told her it was Joseph’s First Communion her face lit up and she said, “EVEN BETTER! That’s awesome, congratulations buddy!” and high fived him. She was young (in her 20s) with a nose ring and not the first person you’d expect that reaction from based solely on physical appearance and age.

We are all exhausted, blessed and grateful after this whirlwind weekend. It was an especially rough Monday morning to get up but we managed it! Thanks to everyone who prayed for Joseph and our family on this very holy celebration.

These last few days…

This post is dedicated in loving memory of St Courtney Lenaburg, St Rebecca Irene, and St V.G.W.

and in honor of Shelby, G.E., the mothers mentioned (R., A., Beth), my mentor in being a mother of a special girl, Mary Lenaburg, the Blessed Virgin and mothers everywhere.

…have been difficult. And not because we’re in week two of a long stretch with no break until Memorial Day. Not because I’m sick either. Not even because Joseph’s First Communion is coming up this weekend.

Back in October, a dear friend and former co-worker’s three-year-old daughter died. She was in a car accident with my friend driving and her older sister when the SUV they were in hit water on the road and flipped three times. All the safety restraints failed and threw both girls out of the back. Understandably, my friend is not having the easiest time living through the nightmare of losing one of her children, nearly losing the other (who has lasting neurological, physical and psychological issues from the accident, although just looking at her you may not see all of it), recovering from her own injuries, oh, and caring for her other two children who both have special needs. And helping her husband cope as well.

My friend is a convert to Catholicism from the LDS church (aka Mormons). She’s lived through some pretty hellacious things in her life before the accident. Watching her break, shatter, put back together, shatter again these last few months has been heartbreaking. All I can do is pray.

But I’ve seen the way others react. Some try to build her up and tell her what an awesome mom she is and how blessed her kids are etc. They sometimes acknowledge the loss but try to keep it very, very positive. Mostly, they are helpful. Another mom who lost a daughter as a young child constantly a shoulder to cry on and a voice of reason. In a very practical sense, she is THE best friend ever.

Then there are those, when my friend asks God why and rails at Him in anger admonish her lack of faith or throw out the platitudes “God knows why,” etc. I can’t imagine how she feels reading those comments because I want to grab them by the shoulders and stand nose to nose and yell, “NOT HELPFUL!”

In the midst of this, I hear the story of an acquaintance’s daughter. This acquaintance also has a son with cystic fibrosis. This little boy has endured so much in his body in eight years and continues. I met him when he was in a class with my son a few years ago and his courage and dignity and refusal to complain and to embrace all that God has given him stand out to this day. The acquaintance’s daughter had an incident where she was talking about her brother to a friend who cut her off because she didn’t want to talk about someone dying. This shook the little girl to her core because she needs friends who will stand with her as she lives with the uncertainty and constant procedures and surgeries associated with her brother’s life and eventual death.

My heart has been so heavy thinking of two mothers dealing with losing a child (one already, one a matter of time undetermined but most likely before her own death). With the stories of the siblings left behind.

These are both Christian women and both have admitted to feeling swallowed by grief and loss and not dealing well over the past year.

Then today I realize we are upon a sad anniversary. The passing of St Rebecca Irene. I’ve been re-reading posts that Beth posted regarding the first anniversary of Rebecca’s death last year and the posts surrounding her death, her brief life, and going back to diagnosis. I could see in them the same emotions as I had heard from the acquaintance in my dealings with her. I could feel the loss my friend is currently mourning. I first heard of St Rebecca Irene shortly before her birth thanks to Mary, mother of St Courtney, who knows a thing or two about losing a child.

My friend attended Mass last weekend and she said she barely made it through. I encouraged her to keep going. It’s the one thing I’ve not seen or heard anyone do thus far. I shared with her something our DRE said last week at a parent meeting. He was speaking of Eucharistic adoration but the same applies to Mass. He talked about being sunburned on an overcast or cold day. He talked about how we couldn’t hear or feel the sun but were changed by it anyway and how the same is true in Adoration. I know well her anger at God at losing her baby. I understand it well. It makes sense. And she hasn’t stopped talking to Him, even if in anger. I’ve told her many times that is good. He is big enough to carry her hurt, pain and even anger. She’s told me I’m the only one who’s encouraged her specifically. It was advice a priest gave me in confession once.

There is a reason God has given me insight into all this grief and I’ve thought about it a lot in the last 24 hours. I believe it is in large part to help my friends.

I was planning my lesson plans for tonight and since we’ve completed the text book, I have had to think long and hard about what to talk about. Finally, I settled on World Youth Day and Polish saints as we just had a talk before Masses on Sunday from teens making the pilgrimage this year and Monday was the feast of St Stanislaus (we also have a parish in our town in his name). The suffering of so many of the Polish saints struck me. The deaths of St Stanislaus, St Edith Stein and St Maximilian Kolbe alone are so indescribably awful and while we remember them as brave and wonderful, I am sure they had their moments of doubt and fear. And as I wondered about all these saints co-mingled with wondering about these mothers suffering now, I thought of something. Many of the Polish saints had and spread devotion to the Blessed Mother. St John Paul II, St Maximilian Kolbe, St Hedwig…they all turned to the blessed mother and relied on her intercession. Then I remembered that on Good Friday, my friend decided she would fast despite the many medications she takes, some as a result of the accident, that say to take them with food. She even publicly said she was focusing on Mary and trying to unite in the suffering of the loss of her child. Beth, a convert to Catholicism, during her pregnancy with St Rebecca Irene received her first ever set of Rosary beads. She had prayed it before but never owned her own Rosary and the story of that Rosary is a story only the Blessed Mother could inspire. My acquaintance is Christian but not Catholic. She is a prayerful woman and I have heard her mention Mary and I pray that she finds comfort in our Blessed Mother even if she believes she cannot ask for her intercession.

Mary, motherhood, suffering, loss…even the Polish saints. It’s all so intertwined that it is impossible for our hearts and minds of those who believe to untangle them. Wait, Mary, she’s also the undoer of knots…

Two years ago as I watched friends put veils on their little girls, my heart ached that I couldn’t have that, might never have that with Shelby. I’ve always believed she gives God her best and God knows that but still, this special moment, like many others, wasn’t to be for my girl. Even her Godfather, our priest, desperately wants her to receive but is caught in the conundrum of her physical age not matching her mental age and her inability to receive properly as a result prevent her from doing so. I leaned hard on Mary and came to see the things she did not experience with her Son still hurt her mother’s heart, even if she knew what was to be. That’s when I read Beth’s story for the first time. My heart broke for her and I offered up Shelby not making her First Communion and the heartbreak for little St Rebecca Irene, a little saint who would not receive the sacrament in her lifetime. I offer it now for my friend’s three-year-old who will always be three and never reach the age of reason and therefore did not make her First Communion before returning to the Father. And for my acquaintance’s child who will miss many things “normal kids do.” But as I prepare for my son’s First Communion this weekend, I am reminded of these mothers, their children, the Blessed Mother, her child and I realize that for all us mere mortal moms out there who deal with the sometimes unbearable pain of living in a state of loss either of our child’s life or what we thought might be our child’s life, we truly can lay that pain at the foot of the Cross. And if we cannot bear the weight of carrying it ourselves, the Blessed Mother, our Mother, Mary will bring it there for us.

Why Autism Acceptance is a Pro-Life Issue

Shelby Wedding pic monkey

Light it up Blue! You see all over facebook and twitter. It’s April which means it’s also Autism “Awareness” month. So to make you “aware,” “Hi, my name is Kristen and I have a daughter diagnosed with Autism Spectrum Disorder.” And my job for “awareness” is done.

If you’re paying close attention though, you’re starting to see various individuals and groups talking about Autism “Awareness”/Acceptance Month. And a few dropping “awareness” from it altogether.

A few years ago, I began to realize that “awareness” was never going to cut it. As Welsh mum Martine O’Callaghan writes in her post Splatter It White-ish:

Awareness is passive. How many times have you been “made aware” of a situation without being expected to do a single thing about it? “I’m just making you aware…” does not compel action or a change in behaviour. It does not, in real terms,impact the lives of Autistic people for the better.

Awareness is never enough.

So you know my kid has autism, so what?

Guess what, she’s also funny, silly, amazingly skilled at jigsaw puzzles, sneaky, and opinionated. But unless you accept her, you’ll never, ever know that.

And a lot of people out there are counting on you not to get to know her so that they can spread misinformation that states that autism is a disease to be feared like Zika or Ebola and that autistics should be eliminated. These are the people who link autism to mass shootings and spread mis-information that life with a child with autism is a life full of cleaning up feces off walls and violent rampages attacking parents, siblings and care-givers.

Some of the people preaching are from organizations like Autism $peaks. And more than a few are parents sharing the intimate stories of their own children.

After the Newtown shootings when it was revealed that Adam Lanza had Asperger’s Syndrome,  Joe Scarborough of MSNBC made erroneous claims about violence in individuals with Asperger’s. He is the father of a son diagosed with Asperger’s. In addition, an article was published online entitled, “My Son is Adam Lanza” by a mother who initially put her name and all her information on it, thus exposing her son’s identity in the process.

And let’s not even get started on the parents who murder their autistic children and then are routinely praised by the media and considered “courageous” for killing an innocent human being because they had “suffered” so greatly.

Are some autistics violent? Yes. Do some smear feces and never make a human connection? Yes. But to exclusively focus on every single negative regarding autism is to discount the many, many wonderful things many of these children and adults contribute to this world.

And to further discount the joy of a child like mine living with, not suffering from, autism we have groups like A$, who have the lion-share of funds, further degrading their humanity through genetic research which they intend to use the way M@rch of Dime$ uses genetic research to prevent birth defects: aborting unborn individuals with genetic markers.

And guess what other human abomination is rearing its ugly head. Eugenics! As this article from The Spectator points out, it’s not just for Nazis. Wonder how European nations are “curing autism” that’s right: it’s euthanasia!

If you want to know why this is happening, well we’ve spent so much time make people “aware” of autism and particularly the nasty, ugly parts of it that they refuse to accept individuals with it and believe their lives are no value! Think we are so much better than Europe or countries where these children are institutionalized, well, then, aside from glamorizing parents who murder autistic children whose statistics are we always touting? That’s right, the Center for Disease Control. We’ve villianized the neurology of individuals with autism to the point that we consider their neurology something to be rid of like cancer.

To be sure, an individual diagnosed with ASD will face challenges in life. Some similar to those without ASD and some unique and owing to that neurology. Just as some neuro-typical individuals have lives they hate so will some with ASD. And for bullying? Why are we saying that the ASD individual must want to die and therefore should be euthanized but not the obese individual? Nor the acne-ridden one? Nor the one with scars from a fire? Why are their lives worth saving but the ASD invidual’s should be “mercifully” ended? Trick question: all their lives are worth saving and there is no mercy in euthanasia.

We need to stop “being aware” of autism and start accepting the human beings born with this neurology. We need to stop funding endless studies into causation and begin using those funds to help with education, therapy, housing and job  placement for those already here living and navigating a world that was not designed with them in mind. We need to develop policies that help these individuals succeed in life. And we need to hear the ALL the autistic voices, not exclusively the ones who hate their lives but the ones who love their lives and wouldn’t change them.

Currently, people are “aware” of autism and autistics. And the majority of their awareness leads them to believe that autistics are less than second class citizens and not worthy of love, acceptance, and even life.

Well, to help you accept and love my child with autism here are some awesome things going on her life this week:

  1. Every day, like any other nine-year-old, we are having epic struggles about wardrobe choice.
  2. Tomorrow she will participate in Special Olympics in our new county for the first time.
  3. In the last few weeks, she has started learning and using “praying hands” during grace before meals. This week she has started praying The Sign of the Cross as well before grace with visual cues and almost no hand over hand.
  4. She recognizes the sign for “bus.”

She also laughed hysterically with her brothers at “The Amazing World of Gumball” and had the easiest transition back to school after Spring Break.

She is not a statistic. She is not someone to be avoided. She is worthy of love. Her life matters. And protecting her life and the lives of others with autism spectrum disorder is a pro-life issue of moving beyond awareness to acceptance.