lite it up blue

Today is autism awareness day. Throughout the day I’ve pondered what this means. I’ve arrived at the answer: so much! Such an amazing place to be in for kids who are being diagnosed now. There are people that are acknowledging autism. That is huge. 10, 20, 30 years ago this would have never have happened. Yet it is happening today. That deserves its own celebration! I’m constantly taken aback by the strength that those who have carried the sign, ‘my child has autism’ around for awhile now. There was a time not too long ago when the word ‘autism’ was simply not uttered. Definitely not understood. I’ve learned so much from the few who have walked on this path before me. 

As much as I am grateful for today, there is something voracious that has been eating away at every corner of my soul. We are all doing so much, but, it just doesn’t seem like enough sometimes. There are days that the depth of the pain that I feel for my son who has autism is just too much to bear. Not just my own son, but the community of amazing children with autism and their families who have become my community. Some of these children have learned how to adapt and communicate within the various communities in which they exist, yet some are so grossly misunderstood and isolated. Behind each one of these children that the label, ‘autism’ is adhered to, stands a parent, or two, a family, and hopefully their own community of supporters. 

Why is today so inspiring yet so unsettling then? Because, it’s not just about awareness, it’s about acceptance. It’s about us reaching out to the person next to us, regardless of what their diagnosis is, be it autism, cancer, or epilepsy…and just loving them. Being able recognize that each one of us has strengths and weaknesses and being able to eventually see beyond that to see and hear about each other. There is just so much to learn from each other. It’s an amazing feeling knowing that because of today and the next 364 days, that one year from now we will have achieved incredible steps towards more acceptance. 

The gratitude that I have for those around me who continually accept, embrace, and love my family is overwhelming. Especially today, April 2nd, 2013, autism awareness day. And also on traumatic brain injury awareness day, March 13th, 2013. 

my thank you speech

This is the speech that I wrote for J’s 8th grade graduation. I wrote and read this with the intent of saying ‘thank you’ to a community of whom rallied for our son. We are so grateful…
About 4 years ago, J came home and said confidently, ‘I am going to go to Villa’. We said, ‘sure, seems like a nice group of kids, high academic standards, superb teachers, and a good community’.  He started at Villa 3 years ago. He learned some amazing study skills, built some incredible friendships, and his life was truly enhanced by his study of the Cabrini traditions.

But, then November 21st, 2010 happened. Playing the sport that he loved, J suffered a traumatic brain injury. It was an unbelievably scary time. Not knowing if he would come out of it and what he would be like. There was a constant during this time, however, and that was the unwavering love, support, and prayer that this community extended to our family. 

In watching the slideshow yesterday, it was abundantly clear to me just how special each of these kids are. They take care of each other. They put someone else’s needs before their own. When one of theirs is down, they pick them up. It has been a privilege to bear witness to the pure kindness and love that they have poured into their prayers, their cards, their posters, their messages, and the way that they have made J feel appreciated, cherished, and important. 

You would be amazed at how the teachers, staff, and administration put so much careful thought and consideration into to his return. They did everything possible for him to be successful. There is even a sofa in the library that was set aside if he ever got tired, he could rest on.

We feel moments of awkwardness because it is so difficult to articulate the deep appreciation that we have for this community. Each one of you has left an indelible impression upon us. Life will never be the same. Colors are more vivid, flavors more intense, intentions more pure. 

We are humbled by the blessings of God and the true power of prayer. J and our family were guided to your community by the hand of God and were graced in your presence. 

You have inspired us. You have taught us to love whole heartedly, to laugh from of the bottom of our souls, and to see the blessings lurking around every corner…even in the most inconspicuous of places.
Thank you.

yet another acronym

Well, it seems like I can add another acronym to my balancing act…PTSD. We’ve barreled through ADD, ASD, IEPs, OCD, TBI, CT Scans, MRIs, EKG, CBC, CUTE (Crazy-Unpredictable-Toddler-Exhaustion…just made that one up!), ABA, SPD, DRI, PICU, GFCF…

…but coming home from the hospital with J from his last brain surgery, was such a relief that I let down my emotional guard down long enough to take a deep breath of fresh air but it was met with extreme resistance. Shaking, crying, sweating, screaming, and more shaking. These fits passed through me for no apparent reason. Sure, there are some obvious triggers, but it came on like waves. Violent waves met with a strong, sand bagged levy. The first two weeks were miserable. One constant panic attack. Then I thought it was over. I was proven wrong as now it comes and goes intermittently.

I am going with this. If I fight it, I feel like it’s going to be worse. So, I’ve eliminated any outside contaminants…no alcohol, no fingernail biting. I need clarity. Pure, raw thoughts and reactions and feelings.

Resisting my strong desire to numb these emotions and uncontrollable feelings with a delicious glass of chardonnay, I’m left to face the demons on my own. The emotions that I wasn’t able to deal with when I was in survival mode during those first few months. Unable to let down my guard enough to sleep. Holding it together. Barely holding it together yet at the same time wound tight enough to repel any other emotions that might seep into the stature that I was trying to keep. That was necessary to keep.

Now that I’m at the 6 month mark, I’m able to process this. I’m able to finish this post that I started 3 months ago. Fits of panic that rush through me at any given time without warning have diminished some. They still do come in waves. There is no warning. The middle of Costco, playing at the park with the little guys, or making dinner. I am completely powerless to them. I’m thankful that I’ve been able to barrel through this. They will decrease in time. I’m sure of that.

Prior to this change in our world 6 months ago, anxiety was not something that I had experienced. I had some serious anxiety about time. Interestingly, now that has completely disappeared. Time is a whole different concept. Yes, I’d love to get places on time, but the obsession with being on time has been replaced with an anxiety of just being there.

catching on things

All of J’s friends wear their J wristbands. His friends at his school decided upon the saying. It says ‘We Believe’ and on the flip side it says ‘In Julian’.

Since it is made of rubber, it can catch. I was typing away this morning and then moved my hand. It caught. I took it off, mindlessly, and put it next to the computer and found myself staring at it. My heart skipped a beat, I held my breath. I realized how much I loved the fact that it caught on the desk and how I had to stop what I was doing to consider some of blessings that have been bestowed upon us in these past months.

I wear mine all the time. It is a constant physical reminder of the love of a community for one of their members; of how strongly this love can change a person and everyone in their periphery. In this phase of J’s recovery, this feeling of enduring compassion, inspiration, and friendship for a buddy and his family has been a life changing experience for many of us. So, yes, I love the fact that my wristband catches on my desk when I’m typing. The inherent kindness and generosity of everyone in our community is contagious. You might catch a case of it if you are careful!

‘Mama said there’ll be days like this…’

Yep, ‘there’ll be days like this Mama said’…but, she never told me that I’d have 3 such lively boys. Of whom I could have never possibly have imagined such love for. Or never imagined the devastation of the diagnoses of autism of one. Or, have to endure a tragic episode of almost losing another in a traumatic brain injury. Yet, she never told me that with such sorrow, came such incredible joy. I can only barely write about this now, 2+ months later. And, only because we have a positive outcome. Yes, Julian will be okay. He will be different. We all will. How could we not.

Redefining normal seems to be a constant theme in our lives. I could go into great detail how specifically our lives have changed with circumstance. Ebbs and flows. Hills and valleys. Highs and lows. Loves and losses. Disappointments and victories. It’s all life. It’s brutal, but it is beautiful. It is pure.

Yes, my own mother never told me that life as a parent could be this hard. How I would be holding onto my sacred rosary for dear life on the floor of Harborview Medical Center trying to make deals with God. Praying for Him to take me instead of my son. No mother could prepare their child for this. This was a journey that I had to go through on my own. What my mother did tell me is that there is always something good in every situation, in every person, to find. This, I know to be true. Again, I can only believe this because my 3 sons are here with us today. Under our roof. Breathing the same air. Laughing at the same jokes. Eating the same meals. Yes, I can believe that although life will take different turns, and you have to redefine what life may look like, that there is a silver lining and that always seeing the cup as not just half full, but 3/4 full is a blessing. I know that there are many parents whose lives took a different turn, in that very same ER. I wouldn’t know what to say to them. I just know that God had a different path for my son. For me. I’m so grateful. I know that I was given these particular challenges because I can handle it. On days like today, I truly wonder what God sees in me that possibly makes me worthy of such a worldly responsibility. At times I feel empowered by the gift of the responsibility. Today, I would say, that I feel daunted and overtaken by it. Tomorrow, I know that I will feel strength from the lessons that I learned today. Today, though, I feel sorrow. That sorrow will turn into something positive. I’m not sure what yet. But, I know that the song says, ‘Mama said, Hey! Don’t you worry now.’ I will find peace in those words.