Tuesday, July 1, 2014

Pandora's Box (And Why the SCOTUS/Hobby Lobby Decision Affects Us Special Needs Families)

I'm Catholic. Im a Mass-going, Eucharist-taking, Confession-attending Catholic. I go to Mass on Sundays and Holy Days of Obligation. I teach Religious Education to preschoolers in my parish. I'm pretty much the poster child for someone who should be thrilled about the decision by the Supreme Court to allow for-profit companies to opt out of health care regulations that they find to be in conflict with their religious beliefs. 

Except I'm not. I don't agree with SCOTUS at all. 

I've never had a problem with unwanted, unplanned pregnancy. On the contrary, my pregnancies had to be heavily planned. I would personally never chose abortion for myself; I couldn't do it. I consider myself pro-life in that way. 

However, I've always believed that my religious freedom should not trump your right to determine for yourself what is or is not right for your body. I may not agree with you choice and I may long for some alternatives, but I agree with your right to choose it. 

I also recognize that some alternatives - like birth control - prevent abortions from needing to occur. I wish that my fellow Catholics would get on board with this idea as a means of preventing a much greater harm, in the church's view. 

But ultimately your choices are your own. This is why is believe that SCOTUS's decision to side with Hobby Lobby has opened a Pandora's Box that will allow companies to opt out of paying for treatments under the veil of "religious freedom". Here is my concern...

Now, it's contraception. That may seem like no big deal to some, but that's because our own narrow-minded view is that the Christian ideals are the right ones. 

As a special needs parent, my kid takes anti-anxiety medication. Other SN kids take varieties and cocktails of other drugs that allow them to focus, remain calm and regulated, and generally feel better by mitigating some psychiatric symptoms like depression or anxiety. Let's say that The Hubs' law firm was suddenly acquired by Scientologists. Scientologists do not agree with the use of psychiatric drugs. What if they decided that they no longer wanted to cover those drugs, leaving Jack in the lurch for his much-needed medication?

Now, SCOTUS didn't say anything about any treatments or drugs other than contraceptives, so that is like arguing apples and oranges...

Maybe, but the reality of the SCOTUS is that their rulings are used to establish legal precedent. When the Scientologist-run law firm decides to sue the state saying that state insurance mental health mandates infringe on their freedom to practice their religion as they see fit, they will use this Hobby Lobby case to establish rationale for why the SCOTUS should side with them. Basically, they 'll be saying, "You did it before, why not do it again?"

But they didn't outlaw anything. If you want a treatment that your company opts out of, then pay for it yourself!

Have you actually looked at the Explanation of Benefits pages that your insurer mails you? If not, you should. Health care isn't cheap. The amount billed to your insurance company is significantly more than you will ever see in a bill. If your insurance company denies a claim outright because it's not covered, you are responsible for that cost. Often, it is out of the financial reach of most families. Telling someone to pay full price for their medical care puts a huge strain on families. These drugs aren't cheap and - as such - can force parents to choose between paying rent or buying food and getting their kids' medications. 

It's convenient to impose that on others when it does not affect you. Once it does, you'll fight harder against such rulings. 

Okay, so just get another job! Go with a company that will cover your treatment!

It's funny that this would even be a consideration given that the Recession left so many out of work. Getting another job isn't always the answer and - in some cases can't come soon enough to cause not disruption in treatment. For some conditions, any disruption in treatment could have disastrous consequences. 

I have the religious freedom to go be the Catholic I want to be. That freedom does not give me the liberty to force my choices upon others. And if we do not want the choices of others thrust upon us, our families, and our children, we should think long and hard about whether or not SCOTUS's decision means that much that we would be willing to sacrifice any number of treatments - blood transfusions, vaccines, and porcine heart valves are among those that are against the religious beliefs of some - for the ability to stop a woman from using contraception. 

More importantly, would you be willing for your children to forgo those treatments? Something to think about, friends. 

Monday, June 23, 2014

Balancing Acts

No one quite tells you just how difficult it is to make the leap from one child to two. With two children, you run out of things easily. You don't have enough hands to hold or carry everyone. You don't have enough mental capacity to process multiple requests. You don't have enough time.

It helps to remember that everyone goes through growing pains when they have a second child, whether or not their first has special needs. However, it doesn't diminish the fact that many of the "extra" things we as special needs must do for our kids aren't optional; therapy, strange school schedules, IEP meetings, and extended self-care tasks are more common for special needs parents. As much as I would have loved to just stay home with Andrew in the initial weeks, you don't get maternity leave as an autism mom. Andrew was accompanying us to therapy appointments - of which Jack has 5-6 weekly - from the time he was 2 weeks old. He had to come along, because The Hubs couldn't take months off work and Jack's world could not stop. 

As a result, I've gotten many questions about how we manage, if I am pulling my hair out yet, and is it possible to raise a newborn and a young autistic child simultaneously. 

I say that you could, if it is what you truly wanted. Just as all of us looked at what our child's diagnosis would entail for our lives and thought, How will I do this?, so you will with the addition of a baby to your special needs family. 

And just as you figured it out with your special needs child, so you will with your newly expanded family. 

We special needs mamas are a resourceful lot. We figure out what to do and how to manage. We plan and have backups upon our backups. We adapt and learn how to shape our environment to suit our children. And you'll do the same with a newborn. 

So, how do I survive? Here are a few tips I can give from my limited (8 weeks worth) experience being a mom of a newborn and an autistic Kindergartener...

1. Plan ahead. It seems obvious, but doing things in advance as I have time has saved my sanity. I set out clothes for everyone the night before. I prepare Jack me lunch for therapy and set it on the counter alongside Andrew's car seat and the diaper bag hours before we have to leave for therapy. When I get a spare moment, I do things in advance to keep me from being crunched for time later. 

So how do I manage to do that? Well...

2. Get a good carrier and babywear. Seriously. I had a Baby Bjorn with Jack that I hated. As a result, I used it twice. This time, I recognized that I needed a hands-free way to carry Andrew. He is a baby that wants to be with me - preferably held - at all times. At the same time, Jack requires a lot of assistance still at this point, so I needed to be able to move with him rather than make his world stay still. 



I can't overemphasize the worth of a good carrier. For the record, I bought an Ergo, which I've found very easy to put on. It's been worth it's weight in gold thus far. If you're in the market, I'd highly recommend it.

 3. Ask for help. This may be obvious, but don't go it alone. If you don't have family nearby, at least have your spouse or partner pick up the slack. The Hubs has been making it a point to get home in time to help out with bathtime. This has been a huge help, as I haven't quite figured out how to get both kids bathed and ready for bed on my own. 

4. Cut back on your schedule (where you can). Consolidate therapy sessions so that all of your driving is done 1 or 2 days a week. Take a week off of therapy (it won't make or break your kid, I promise!). When you are still recovering from delivery, try to make your life as simple as possible. If that means a week or two without therapy, so be it.  

5. Remember this...it's okay for your special needs child to not be the focus for a few weeks. I love Jack with all my heart, but having Andrew has taught me this...our house cannot be a dictatorship. Jack is important, but so is Andrew. Andrew cannot - and should not - come second to Jack's needs. At any given point, one or the other might take precedent over the other, but overall they are equals. Sometimes, Jack has to wait, and that's okay. It's an important lesson to learn that the world doesn't stop for our special needs children. 

Andrew will be two months old tomorrow and I have survived. Granted, it's been on survival mode, but survival mode is okay, too. I would say this to you, it gets easier. The waking every 2 hours to feed around the clock turns into waking once or twice a night. You come out of that hazy zombie mode and start to figure out how to do the dishes, start some laundry, get both kids out the door, and - miracle of miracles - write a blog post. 

And you'll see glimmers of connection between your special needs child and their baby sibling. It may be just repeating their name or pointing, but eventually you might get this...


And then, my friends, is when you sigh a breath of relief and know that you made the right decision, and that everything will be okay. 

Sunday, May 18, 2014

About a Boy

I never believed in miracles. A person strongly founded in my belief in science and reason, I have a tendency to mute my own faith with the knowledge that most aspects of life are explainable. 

I felt that way until I lost a baby last summer in my second trimester. At a point where babies aren't supposed to pass away in the womb, mine did. After so long of wishing and hoping and praying for a second baby, my beloved baby girl passed away without me ever meeting or seeing her, except on an ultrasound screen. 

At the moment where I felt I was at my lowest point - yes, lower than when I first heard the word "autism" associated with my sweet Jack - there he was. Not even a month after losing his sister, there he was. 

After 9 long months of carrying him and praying each day for his health, all the while watching my health decline and knowing that at any point it might be too much for someone so vulnerable, here he was. My baby boy. My miracle baby. 


I never imagined I could love someone as much as I love Jack. I love Jack with this all-encompassing, overwhelming love...how could I have the capacity to love someone else just that much?

I underestimated my capacity for love. 

As I laid on that operating room table, as my baby was delivered I heard a noise that I never heard with Jack - crying. His lungs screamed out to let me know he was okay. When they placed him next to my head and I could speak to him, he settled. My voice...he responded to my voice. It gave him comfort, as did he give me comfort in return. 


I try not to compare my boys, but parenting Andrew is a different experience, one for which I'm finding that I have not been prepared. After all, parenting an autistic child is all I know; in many ways, I'm a first time parent all over again. Andrew is more responsive. He wants affection and contact. He loves skin-to-skin time. He nurses like a champ (Jack never did, thanks to his feeding problems he could not breastfeed). He doesn't want to be alone. He actually communicates in the way newborns communicate - crying. 

And Jack? The fears by some were unfounded. Jack is aware of Andrew's presence, but he does not seem disturbed by the occasional cry or other stimuli that a baby can produce. Jack has discovered that baby brothers produce a menagerie of bodily functions that are incredibly loud. He has found that throwing diapers in the diaper pail is fun, because they seem to "disappear" with a turn of the handle. Baby brothers also watch Jeopardy (sort of), so Jack learned quickly that a bit of pre-bedtime TV time might occur if Jack is willing to sit with his brother. 


And as for us parents? We're exhausted in the way that only a newborn can induce, but our hearts are full. Our family is - finally - complete. 

Andrew's birth changes everything. It changes the dynamic of how our family will operate forever. And in a wonderfully beautiful and messy and gloriously exhausting way, I don't care that so much has changed. I've fallen in love again. This boy has reminded me of my capacity for goodness and love and the fierce way that I love my children. 

Children...I have two children. I never thought I'd be able to say that. 

And I couldn't be happier. 


Sunday, February 23, 2014

That Boy in Your Child's PSR Class


As He passed by, He saw a man blind from birth.  And His disciples asked Him, "Rabbi, who sinned, this man or his parents, that he was born blind?"  Jesus answered, "It was not that this man sinned, or his parents, but that the works of God might be displayed in him."  (John 9:1-3)

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You may have seen him when you drop your child off or pick your child up from PSR.  He's the little boy (or girl, the child could easily be a girl) that catches your eye.  Perhaps the child is moving differently than the other children, with his pacing and flapping hands.  Perhaps this child looks different.  Perhaps he isn't talking.  Perhaps there is something that just gives you pause.

You might notice the other children not playing with this child.  He or she might be off by themselves.  Perhaps there might be a helper nearby.  You can't quite put your finger on it, but this child seems...different.


That child could be mine.

The road to get my son into Mass or PSR at all was a long one.  You see, from birth my child has lagged behind the others.  First, it was in his motor skills; he was late to do everything from crawling to pulling up to walking.  He could not eat the way other children could and he would gag on anything and everything.  Then, the handful of words he had slipped away around the age of 20 months.  Soon, he was non-verbal.

When our son was just past his 2nd birthday, we heard the words from our child's developmental pediatrician that both gave us answers and shook us to our core - "Your son has autism."  We immersed ourselves in the world of therapy, special education, and programming designed to help our son learn the everyday concepts that other children simply picked up without being taught. 

At that moment, God was the furthest thing from my mind.  We were not giving much thought to our son's Sacraments.  After all, if he could not swallow anything beyond a puree without choking, how was he going to celebrate his First Communion?  It seemed so far beyond what we could hope to accomplish.

We were slowly becoming isolated.  The gym class that I had taken Jack to since he was 6 months old had become a harsh reminder of just how far behind Jack really was.  After a parent in that class referred to my son using the "r-word", I scooped my son up crying and never went back.  I began to fear that there was no place for my son in the mainstream world.

It was around that time that I was introduced to Ms. J here at our parish and to the special needs music program - a music class for kids of all abilities.  Jack loves music - music therapy is his favorite part of school and his first words regained came at 32 months old after watching Baby Signing Time - so we decided to give the program a try.  Not long after, Ms. J offered to watch Jack - along with a couple of additional special needs children - during one of the Sunday morning Masses.  We had not been to Mass since before Jack was born.  At first, it was due to his constant vomiting.  Then, it was his sensory issues; he could not sit still or go into a crowded room without screaming.  We gave it a try and - with the help of a wonderful teenage helper to assist Jack - we returned to Mass.

As the end of the summer approached, Ms. J asked us about enrolling Jack in the preschool PSR program.  We were more than skeptical; Jack currently attended preschool in a public preschool special education class, so we weren't sure how much he could learn in PSR or how much of a disruption to the other children he might be.  Ms. J - of course - was not as concerned as I.  She firmly believed in including Jack in his faith and the parish community, and Jack's teenage helper from the summer would join him in PSR to assist him each day.

Slowly, I began to believe that Jack had a place within the parish despite any disabilities or challenges he faced.  He - like all of us - was a child of God.

Jack is now almost 5 years old.  Very slowly, Jack is growing in all of his developmental milestones, but also in his faith.  He knows the word "Rosary" and will lift my Rosary out of my purse to gingerly touch each bead in his hands.  Ms. J made Jack his own Rosary out of fidgets and sensory materials.  This past summer, we have sat with Ms. J and other special needs families in a "Sensory Cry Room", complete with picture schedules and room to move so that Jack can begin to experience the celebration of the Mass.  Each Sunday, when the bells ring three times, Ms. J will announce "Jesus is here!"  To see my child, to hear him try to speak, or to watch the way he seems to move without noticing what is happening, you might think that he is not taking any of the Mass in, but he is.  Now, when he hears the bells, Jack says - "Jesus is here!"

In the wonder that is my autistic little boy, I can certainly agree.  Jesus is here.  The Holy Spirit fills this place.  It is because of what the parish has done for my family - for welcoming my son in particular - that I felt called to serve as a Catechist.  I wanted to give back to the community that opened their arms to my child in spite of his differences.

So, as you look over at my child - the one who looks a little different - take a lesson from one parent to another...my son is a child of God, too.  Have a discussion with your children about how God gives all of us strengths and weaknesses and how God made each of us special.  Encourage your children to reach out to children might seem different and play with them.  Tell your children that just because a child struggles to speak or acts differently it does not mean that they cannot be a great friend.  Remind your children that just as Jesus opened his arms and was accepting to all, so should we be accepting of everyone who might seem a little different.

Tuesday, February 18, 2014

State of Emergency

If you have access to American news at all, you are probably aware of one thing about my beloved Atlanta...we have been in the midst of some wild Winter weather patterns. 

While Atlanta is no stranger to yo-yoing temperatures and whatnot, we are not accustomed to snow and ice. While we look wholly unprepared to the rest of the country, people in other cities need to understand that Atlanta doesn't prepare for winter weather because three years out of every four, we don't have anything for which to prepare. Even in that one year, we will have one major snow event. Certainly not two. 

And certainly not two in two weeks. 

It's just not economical that Atlanta put too much money into Winter weather prep when it isn't needed so often. To show you how Winters can be, the past two weeks have also included temperatures in the 60s and 70s, as well as two minor earthquakes. After all, why not throw a couple of earthquakes into the mix, right?

"SnowJam 2014" - which stranded Jack and I in our car for almost 5 hours with almost no food, almost no water, and no iPad - gave way to what has been called "Clusterflake 2014" just a couple of weeks later. Each storm rained an apocalypse of snow, but mostly ice, on my city. As a result of ice layers so thick and perfect that a Zamboni couldn't have done better - coupled with the rolling hills of Atlanta - created a situation in which we weren't going anywhere for three days. Twice. 

Yeah, whoever is praying for snow out there can stop now. 

There was some fun to be had. Jack - who has never wanted to even come close to snow in the past - was willing to interact with it with mittens on. This was a triumph on two fronts: he both wore his absolutely dreaded gloves and held some snow with his mittened hands. 


We do sensory integration here, folks. All the time. 

And while we were at it - and while Jack's PT is out after having surgery - we incorporated some gross motor target practice with throwing snowballs at the fence. 


Brian tried to get Jack to beam me with a snowball. Jack refused.

Good boy, Jack. You look out for your mama. 

I even found a sled at a local Costco (a rare find in Atlanta!) and tried to introduce it. Jack wasn't interested. 


I got Brian back for his suggestion about the snowball by implying that if he were to try the sled Jack might be more receptive. He tried, but Jack's sled isn't designed for adults. Brian simply flopped when he tried to slide. 

I did not get a picture of that. Darn. 

During our indoor downtime, Jack was also willing to play with Play Doh - a texture that has always been offensive to him. However, he wanted to try it, so we did. 


He may have eaten some of the Play Doh in the process, which surprised me as I can't get him to eat a cookie, but he'll voluntarily eat Play Doh. 


Go figure. 

Though - as you can imagine - having six snow days in two weeks brought its own set of challenges in addition to the triumphs. We went for two weeks with a spotty - if not non-existent - routine and therapy schedule. While this school year has been a challenge and Jack clearly was happy not to go to school each day, he also seemed to suffer for the unpredictability and lack of structure for such a long duration of time. 

Of course, us parents struggled, too. Cabin fever set in for us as we tried to fight boredom and getting on each other's nerves, as all people are wont to do while being trapped indoors for an extended period of time. 

And through this, I had some of my worst blood pressure days yet. The dehydration I suffered from my and Jack's extended stay in our car during SnowJam caused me to spend a day having some decent contractions...and no real way to take care of them. Travel to the hospital would have been dangerous, so I spent the day rehydrating and tracking the contractions, praying that baby Andrew would stay put and that the contractions wouldn't get into the preterm labor stage. They got under control after about a day. 

As with all things, we survived. We never lost power (Thank God!) and we managed to have enough Cheezits to last through the waves of Winter weather. 

And certainly, we learned a little something and will better prepare for the future. I know to trust my gut and not go to therapy or school if the forecast is for bad weather, even if it means that we may just stay home for no real reason. 

Because if this winter has taught me anything, it is this - always be prepared.

And never run out of Cheezits. 

Monday, February 17, 2014

Why Jack - and Georgia - Need Ava's Law

Today we had our quarterly visit with our developmental pediatrician, Dr. DP.  I feel like a broken record sometimes when we see him, not because he asks repeated irrelevant questions, but because I am forced to give the same senseless answers.  Here's what I mean...

Ever since Jack was diagnosed, his "ideal" therapy package would include the following: speech, occupational, and physical therapies, plus a DIR/Floortime home program.  ABA was discussed, then finally pushed as Jack began to have some behavioral challenges that perhaps could benefit from this type of treatment.  Then as Jack's needs increased, we also added a cocktail of different medications into the mix, not as a means of fundamentally changing Jack, but to give him some tools in his toolbox and calm his body down enough to help him learn and feel comfortable.  We weren't going for anything radical; we just want Jack to be the best Jack he can be.

Every time we go to Dr. DP, I get asked if Jack is getting all of the therapy he needs.  Is he getting twice-weekly feeding?  Well, no.  Is he getting twice-weekly speech?  Nope.  Is Jack getting ABA?  Not at all.

Why not?

My answer never changes, and Dr. DP knows exactly why.  It's because even with our primary insurance and Jack's Katie Beckett Deeming Waiver - plus what the school system offers - combined, we don't have insurance coverage for all of Jack's therapy.

Instead, we have to medicate Jack, or try to do therapy ourselves, to fill in the gaps where our insurance company and the state of Georgia feel like it is too expensive to provide my child the care he needs and the care that his physician is ordering as medically necessary. 

And while I don't like to compare autism to cancer or any kind of illness, indulge me for just a second as I make a comparison to any other neurological condition or medical condition that a child might have.  Again, I'm not saying that autism is like any of these things, but just imagine if you - as a parent of a child with diabetes, or cancer, or asthma - were told that the treatment your child needed was not covered by insurance?  Imagine if your insurance company told you that your child's treatment was not their responsibility?  Imagine if your insurer told you that it was the school system's responsibility to deal with your child's needs.  

Imagine calling your insurer because they are about to cut off your child's treatment and crying over the phone, begging them to reconsider.  Now imagine them saying, "There's nothing we can do for your child."

I've been there.  I've been that parent crying into the phone because our insurance company decided to cut off my son's feeding therapy.  I've been the one begging them not to take away something vital to his health - as feeding therapy is - and I've heard them say that they would rather pay for hospitalization and care to treat my son following a choking or aspiration incident.  

They would rather pay at the last minute to keep my son alive rather than give him the skills to eat safely.

Autism parents throughout Georgia have been there, too.

When confronted with the economics of our situation - that providing early intervention and treatment now may lessen Jack's need for intensive therapies and medical services later - the insurers would rather take the chance that they won't be paying for Jack's care at that point anyway.

Why?  Because they are counting on you - as the taxpayers - to foot the bill for all of Jack's care.  You see, since Jack's level of care needs are so great and our insurance would rather not pay for home and community-based services (you will not convince me that hospitalizing my baby boy is better than the care he can get in his parents' home), Jack is dependent on a Katie Beckett Deeming Waiver - or Medicaid - and school therapy to pick up where private insurance denies coverage. You, as taxpayers, fund these programs. I pay an insurance premium for my son, but his coverage is funded by you simply because my insurance company continues to deny treatment. 

Adding ABA and private feeding into the mix - and the out-of-pocket cost - would add several thousand dollars monthly to Jack's care needs that we would have to just write a check for each month.  

We live in a state that won't compel insurers to pay for autism treatment...and my child is autistic.  Just because my child is autistic, he can't get the care he needs.  In a state so concerned with the costs to the individual taxpayer's premium, we would rather pay for Jack - and many, many other autistic children in Georgia - to be on Medicaid than the less than $0.50/month/member (which is what autism insurance reform is expected to cost Georgians) to compel our insurance company to just cover him and his treatment like they would for any other child with any other medical need.  Being disabled and needing therapy should not exclude our children from getting the care they need.

Can you imagine hearing your neighbor say that they do not want to help cover the treatment your children needs simply because of their diagnosis? All because they feel like it is too expensive and not their responsibility? We would be horrified if our neighbors said the same about any other medically covered condition, so why not autism?

This doesn't just affect us. Out of the many, many Georgia families I've met in the past 3 years who are raising a child on the spectrum, how many have I met that have any insurance coverage at all for ABA? Two. Just two. 

That's why Jack - and Georgia - so desperately need Ava's Law.

Ava's Law would require state-regulated health plans to provide coverage for behavioral health treatment - ABA - up to $50,000/year, among other things like therapeutic care. 

And why, Georgia, is it worth your while to see to it that there is an autism insurance mandate - Ava's Law - in Georgia?

Well, ultimately you get the bill for Jack's care in one way or another. You pay for an increased need for Jack to access therapy and special education services in Georgia. You pay for his Medicaid which he needs to cover the gaps in coverage within our private insurance policy. 

Now, wouldn't it be better if the bill was lower? What if access to ABA and the speech/feeding therapy Jack needs now meant that he had a decreased need for those services later? What if that meant that Jack didn't need the same level of special education services in the future, meaning that his education was cheaper for the taxpayers?

And then, what if that therapy early on meant that Jack had the tools to better hold down a job as an adult? That would mean both a decreased dependence on social services, but also that he would be contributing to the community that helped him so...as a taxpayer himself. 

What if?

For Georgia's autistic children, that choice should be available. Families should have the option to provide the care that they and their children's doctors  feel is medically necessary and best for their development.

Insurers are passing the bill on to you, Georgia, more than autism families are. Insurers want you to fear that extra $0.50/month in your premium because they know that they don't want to step up to the plate and be part of the solutions. 

Georgia, don't let them! Every year, Ava's Law gets stuck in a committee while politicians allow misinformation and lobbyists to cloud their good judgment on what is good for Georgia's autistic children. 

We need our voices to be so loud that they cannot help but hear us. 

So please, fellow Georgians, contact your state Senators or Representatives and tell them your stories. Have your family and friends do the same; yes, even grandparents can share their stories about their amazing grandchildren! We need to do this for our kids. 

And if you don't live in Georgia, please share this so that maybe - just maybe - the couple of people you may know who live in Georgia can help spread the word about the need for this legislation. 

Because I would love nothing more than to go to our next appointment and tell Dr. DP for the first time ever, "Yes, Jack is getting the ABA and therapy he needs."


Trust me, Georgia...he's worth every penny of your less than $0.50/month. I promise. He can do anything. 

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Want to learn more about Ava's Law, what it means, and what it actually does - and doesn't - do to insurance coverage and premiums in Georgia, please go check out the Autism Votes state initiatives page (click here) for current news on Ava's Law, or visit Ava's Law's Facebook page (by clicking here)! 

We need your help!

Sunday, February 16, 2014

The Pink Balloon

It was a day like any other. No one really knew just how much that day hurt. I just couldn't share it, not then. But now, maybe I have the strength. 

Jack went to school. Brian went to work. Buses came and went. I had a meeting about adaptive programs through our local parks and recreation department. I needed to run to Costco. 

In the midst of all that, I released a pink balloon. I did it silently, with little fanfare. No pictures. No support. No one but me and my baby girl. 

My due date with Maggie had come and gone. Even as I could feel Andrew squirming in my belly - a little reminder of the good that was to come - my heart couldn't help but ache for the little life lost too soon. The one that should have been there that day in my arms, not in Heaven. 

For a brief moment, I let myself feel whatever. I was sad for my loss - and it was okay that at the moment it was my loss. I was sad for the moments she would miss in life and that I would miss sharing with her. 

And - briefly - I was mad at God...again. I was mad that He took her from us. I was mad that He had brought that pain into our lives. I was mad that He did that to my little girl. 

And - briefly - I was mad at the world. I was mad at the people who said that there had to be a reason for her loss. That her loss was okay because we were now expecting Andrew. Andrew is a blessing, but why could I not have all three of my children?

Her loss was never okay. I loved - and still love - her as much as my living children. It is from a place of love that my emotions get so strong when thinking of her loss. 

As I went about my day, I came back to Jack and to some of these same emotions that I felt acutely around the time of his diagnosis. I remember the anger I felt that God would make my son's life more challenging. I remember the anger I felt anytime I was told that God doesn't give us more than we can handle. Or that Jack was here for a reason, when - my goodness - aren't we all?

And I felt - I had been told - that thinking these thoughts meant that I didn't love my child. 

So, I suppressed them and moved forward, as we all do after getting a diagnosis for our children. I am glad that I did; my life is indeed happier because I let go of that sadness and anger, but it creeps back in from time-to-time. 

It creeps back in when my son paces the bleachers instead of participating during adaptive basketball. It creeps back in when he screams because he doesn't have words or ways to communicate what is troubling him. And it creeps back in when he loses control of himself and I see the pain in his face as he fights a body that he cannot control. 

Does this mean I don't love my son?

Maggie - sweet Maggie who I only hold in my heart and held in my body for a short few months -  has taught me that the answer is no; I ask these questions because I love Jack with every ounce of my soul, just as I ask the same questions for my love for Maggie. Ironically, no one questions if my love for my little girl exists when I ask the hard and emotional questions, but my love for my autistic son is questioned if I do. 

No more. I love my children. My days are filled with more happiness than I could ever imagine, but occasionally the darkness creeps in. Why do I feel angry sometimes? Why do I feel sad? Why do I feel like life has dealt an unfair card? It's not because I want pity or feel cheated, but it is because I love my children so much that I hurt for the hurt they have experienced...whether they feel it that way or not. Sure, Jack knows nothing different than the life he leads, but when I see him struggle, my mother's heart can't help but hurt for his hurt and his struggle. Sure, Maggie is in Heaven, but that doesn't mean that I can't feel so angry and sad that she wasn't given a chance at life with her brothers. 

I just don't let it consume me, but don't fault me for feeling that way, in that brief moment, then releasing a pink balloon or engaging in a moment of just being with my boy - and moving on. 

So, I went to the store and bought a single pink helium balloon and sent it skyward for the birthday that my baby girl never got to experience. As with so many times that I feel sad or angry or feel that life is unfair for any of my children, I did so silently. And I moved forward - silently - and in my own way. 

So I do every time I am blowing bubbles for Jack and I send one up for Maggie to catch. Or when I feel the tears welling up for my boy's struggle and I stop and sit by him and just...be. Each of these moments is a way of recentering myself and moving on. 

And that's okay. Having these thoughts simply defines us as parents. Mothers. Fathers. Family. It is what we do with our thoughts - how we live our lives afterwards, and we must continue living life well for our children - that determines the measure of who we are. 

For a little person who never breathed a single breath, she has taught me so much. 

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While it was weeks ago, I finally can say it here...Happy Birthday, baby girl. Mommy, Daddy, and your big and little brothers miss you so. 

I hope you enjoyed the balloon. As you can see, your brother thinks they're pretty awesome.