Thursday, December 17, 2015

Cry Baby

So, we've had kind of a tough week.  Ronan's behavior has been off.  He hasn't wanted to cooperate.  That lack of cooperation plus those behaviors have turned into frustration.  That frustration carries over to me.  How I handle things can make or break the next few minutes that we're together and how the rest of the day goes.  If I handle things well, Ronan has the chance to bounce back.  I can too.  If I don't handle things well, though,...well, it won't help either one of us.  

I don't always handle things well.  Some days, I want to retreat.  I want to retreat from the situation, from the frustration, and from the thoughts that sometimes weigh me down.  When things get really, really tough, or later, when I cannot shake my own sadness or frustration, I do retreat.  I will never walk away completely, but I know that I need to take a minute, or two (or five) to stop, to walk away, and to breathe.  

That kind of retreat can be healthy.  It can work in other situations and for other people, too.  For me, when I'm trying to diffuse a situation or prevent Ronan from having a meltdown, after I have stopped, or walked away, or taken a minute, or two (or five) to breathe, I can jump back in with clearer thoughts.  I'm careful how I return because my reaction, my response, and my presence needs to be calm and collected.  Ronan, like many other children - typical and special needs - can pick up on a parents' emotions.  He needs my support, respect, and love at all times but most especially during and after he's had a massive meltdown like has happened four times this week.  

This week, with as many meltdowns and frustrating moments as both Ronan and I have had, I have not cried.  I'm not saying that I'm a big 'ol cry baby, but there are times when the only response I can offer during an overwhelming event is to break down and cry.  

That's happened when a typically birthday went terribly wrong.  

That's happened when Ronan wandered from our home one cold, winter night.  

That's happened after wondering what I'd do differently even though I know that I can't change anything from the past.    

The last few days have been less than stellar, but I didn't crumble into a ball of emotions as has happened before.  I think having our new therapists close by has helped.  I have an extra set of eyes watching.  I have an extra pair of hands helping.  I have an extra thought or two to consider that I'd never thought to consider before.  That helps when we go over what just happened and come up with a plan to prevent it next time.  

Next time.  


I'd love to not have to prevent a next time.  The next meltdown.  The next frustrating event.   The next trying situation.  The next emotional breakdown, mine not Ronan's.  

I believe that some emotional releases are healthy.  I've tried bottling up my feelings before, but that hasn't worked out very well.  Expressing emotions has helped.  If that includes crying, well, I let the tears flow freely.  I don't just feel the emotions, I can process through them.   


The cure for anything is salt water, sweat, tears or the sea. 

We happened to be by the sea when I saw that quote for the first time.  It was fitting.  I recall this quote on tough days.  I actually recall it not just on tough days but on days that I've cried tears of joy as well.  Tears can help - ones that are cried in frustration can cleanse.  Ones that are cried during moments of joy also cleanse and can usher hope, too.  

Credit: Isak Dinesen
Of course, I'd love to only cry tears of happiness and of hope.  But if I ever find myself crying tears of sadness, of frustration or even of anger, once that ugly cry is over, like I've done in the past, I'll wipe those tears from my cheeks.  

I'll stop.  

I'll walk away. 

I'll take a minute, or two (or five).
  
I'll breathe.  

And I'll jump back in ready to try, try again.  

xo, Cat



Tuesday, December 15, 2015

Carried Away

I shared some major gains that Ronan's been making in my Sunday post last weekend.  I might've jinxed myself for sharing all that awesome though.  Monday was not so awesome.  

As we left the Big Box store that Ronan's been able to navigate like a boss lately, he melted.  Oh, how that child melted down.  Maybe it was because he didn't fall asleep until after 10:30 pm the night before.  Maybe it was because I had to wake him up early on a day that he normally gets to sleep in.  Maybe it was because I had to race him and his little sisters to the girls' school because I'd overslept and the girls missed the carpool.  Maybe it was because I later took him to a store he had no interest in going.  Maybe it was because we left the store through a different door.  Maybe it was because he didn't get the special treat he's been offered during other recent shopping trips.  Maybe it was because of of all of those reasons.  Maybe it was because of none of those reasons.  

Whatever the reason, Ronan had a meltdown that lasted for 33 minutes - ten of which were in the parking lot in front of a lot of other shoppers.  The other 23 minutes were in the car.  Those 23 minutes were not any easier.  That's when things got a little carried away.  

Ronan was still not cooperating once he was in the car, so we continued to wait things out.  After several failed attempts at getting Ronan to communicate, I brainstormed with our therapist.   At this point, I was in the backseat trying to encourage and to redirect Ronan to sit safely in his car seat.  Since Ronan loves his movies so much, I thought if we could get him to request a movie, we could turn his behavior around.  But then I thought of something better.  Maybe if I turned on some music first, he'd asked for me to change it.  Before I changed the song, I'd ask for Ronan to sit in his car seat.  If I could get him in the car seat, I could buckle him up.  If I could buckle him up, we could get going.  That sounded simple enough, but because the situation had already gone south, and quickly, I wasn't sure my plan would work. 

It didn't.  

I turned on a CD.  A favorite of mine, I thought for sure that Ronan would immediately sign "change".  

He didn't.  

Instead of signing change or asking for a movie, Ronan relaxed.  Still firmly planted on the floor of the car, he quieted down, leaned into me, and enjoyed the music.  

As much as I loved that Ronan was enjoying my favorite music and was finally not in fight mode, that song choice wasn't working.  So, I switched to another CD.  I picked a song that I knew Ronan did not enjoy.  Within seconds of The Sound of Music's The Lonely Goatherd started, Ronan indicated that he was just about ready to get back to his happy little self.  

That's when he made eye contact. 

That's when he signed change.

That's when he responded politely.

That's when he climbed into his car seat appropriately.  

That's when a 33-minute meltdown ended.  

That's when all was once again right with the world. 

That's when it was time for us to drive away from the Big Box store and get on our way.  Once we were a safe distance away, a peace and calm fell over all of us.  

Autism meltdowns are never fun.  We work so hard to avoid them.  But they happen.  And some of them last a long, long time.  I'll sit down with our therapists later to come up with a new plan for these types of shopping trips.  We can't avoid stores, the public, and the world entirely, so we'll brainstorm new strategies.  
I hate that we lost some of the momentum Ronan was gaining, but I'm so grateful that we have support to try, try, try again.  We will always try, try, try again.  

xo, Cat

  

Sunday, December 13, 2015

All Rise!


See that photo above?  I took it at Church today.  I know, I know.  I probably should've waited until after Mass to take a photo.  But if I'd waited until after Mass, I wouldn't have been able to capture Ronan holding my hand while sitting perfectly in the pew next to me.  Let me repeat that.  

Holding my hand.  

Sitting perfectly.  

In the pew.  

Next to me. 

Ronan's had other successful Church days, but he hasn't been able to go to Mass in quite some time.  In fact, it's been several months since he went.  It's been even longer since he really wanted to go.  None of us are happy about that, but we understand that taking a child with special needs to Church can be a challenge.  As much as we've tried to make it easier, it has not been easy.  

I've written before about Ronan's lack of enthusiasm when it comes to going to Mass.  I've written about what happens when we Ronan won't budge.  It isn't the best solution, but it is a solution.  I don't like it when we have to resort to Plan B and watch Mass online because that usually means Ronan has adamantly refused to get out of the car, but completely skipping Mass is not an option. 

I'm not sure what made today so super awesome, but it was so super awesome!  I walked into Church with Ronan riding piggy back on my back.  He stayed on my back until it was time to sit for the First Reading.  Then, he sat comfortably on my lap, face-to-face, resting his head on my shoulder.

Looking around, Ronan pointed to the stained glass window next to us.  He looked at the the ceiling, the altar, and then he fixed his eyes on something behind the altar.  During the Second Reading, Ronan raised his arm, pointed to the Crucifix, and tried to say something.  

Did he?  No!  Did he just try to tell me that he knows that that is Jesus?  

I wouldn't know unless I asked.  Ronan has a crucifix in his room, given to him by a dear friend who we've known for-ev-ah.  We point to the crucifix when we say prayers, "Ronan, look!  It's Jesus.  You can ask Him to pray for you."  

When Ronan kept pointing and trying to say something today, I leaned over and whispered, "Jesus?  Do you see Jesus on the cross?"  

Yes.  

Satisfied that he heard the word he was trying to say, Ronan put his arm down and sat peacefully in the pew.  That's when I reached for his hand and held it.  We held hands for a few minutes until Ronan remembered that I'd brought a snack for him.  Having the snack helped because Ronan continued to sit happily sandwiched between me and Izzy for at least another ten minutes.  Then, Ronan indicated that he was ready to go.  

Pushing his fingers into his palm, and then slowly raising his hand and arm high above his head, his sign for "stand up", Ronan looked at me and waited.  I asked him to sign again.  He did.  

"Stand up."

So I did.  

Ronan, Izzy and I snuck to the back of the Church.  Hoping that he'd want to sit in the narthex, we walked out of the pew as the Offertory Hymn began.  Finding a comfy spot for the remaining few minutes, Ronan finished his snack, quietly watched a video on my phone, and then joined me as I received Communion.  As he's done in the past, after I receive, he says, "Yum," very clearly.  I hid a smile when I heard his sweet voice and prayed a thousand thankful prayers.  

Ronan made it through 3/4th of the way through Mass today. You better believe that we'll try to go to Mass with Ronan again next week.  

xo, Cat


Tuesday, December 8, 2015

A Favorite Prayer

Today is the Solemnity of the Immaculate Conception.  Celebrated December 8th, it is a holy day of obligation for Catholics.  With hubby out of town and Ronan still not able to join us at Church, I wasn't sure which Mass I'd be able to attend.  Our parish offered 5 Mass opportunities, and thankfully, I was able to go to the Vigil Mass last night.  Not only did I get to go, but I got to go alone.  And oh, how peaceful it was!  

Usually surrounded by my children, I, of course, missed them dearly, but a sitter had them safe at home and would have them in bed before Mass was even over.  Being able to go to Mass alone, after flying solo for several days, at the start of another very busy week, and at the end of a jam-packed Monday would be an over-tired, over-worried, super busy mom's dream.  

It was.  

In that hour that it was just me, I had time to really listen, to prayerfully reflect, and to actually pray without any immediate distractions.  Sure, there were other families present, some with young children, but their busyness and their noises did not distract me as sometimes happens.  
Depending on who is with me, I can easily get distracted by my own children at Church.  Trying to shush them, trying to get them to sit still, trying to get them to stop fidgeting and to pay attention, I know that it's sometimes tough for a kid to sit and attend at Mass.  With gentle redirection, and sometimes with 'the look', I can get mine to focus better.  Last night, I didn't have to do any of that.   

As much as I missed them last night, I was thankful for the one hour that I was away.  Keeping my children and my family close in my thoughts, I prayed for them.  I asked Mary to pray for them, too.  

Today, my children woke up so excited.  It's Mary's feast day! they squealed.   She's never far from my thoughts, but I'll remember Mary all day today.  My children will as well.  They will go to Mass today and will celebrate this holy feast day with their classmates.  They will sing, pray, and honor Mother Mary.  They will enjoy special activities and each other's company on this special day and will tell me all about it when they come home.  I'll be ready to listen to their stories.  I'll be ready to look at what they made.  I'll be ready to smile at their excitement and soak in their joy as they tell me just how special Mother Mary is.  She's pretty neat, that Mary, and I'm so glad to call her Mother.  

xo, Cat 

--


My oldest took another amazing picture yesterday.  She edited it and then added a layer of awesome to it.  Then she said that I could use the photo for whatever I wanted!  After going to the Vigil Mass last night, I knew that I'd use the photo as a backdrop for my favorite Mary prayer, The Memorare.  

Thank you, Fin, and thank you, Mother Mary!





Sunday, December 6, 2015

Madness

The kids got a free book from one of the restaurants we frequent.  Seeing it made me smile.  

I used to play Mad Libs with my siblings when I was a child. It shouldn't surprise you that I still have one of the ones we wrote in from the mid 80s.  A few years ago, I found a jumbo-size Mad Libs book and bought it for my children.  We had lots of fun filling in the blanks.  We had even more fun reading the stories aloud to each other.  

I hadn't thought about it in awhile, but I wrote a piece a few years ago using a Mad Libs-styled theme.  I know it's not the case yet for everyone, but now, especially with how many are being recommended, when I took a step back and look at what parents are being asked to have injected into their child, it's maddening. 


I'm glad I know a little bit more about the vaccine program.  I've been able to make better decisions about vaccines now that I know what I know.  Of course, I wished I'd know more about them when my children were younger.  Maybe then I might not be so mad sometimes when I think about what happened post-vaccination.  

Since I can't go back in time and change what did happen, I can and will continue share that I think about the vaccine program.  For those new to reading what I share on the topic...I think that the program really, really ________. 

xo, Cat

  

Sunday, November 22, 2015

ACTS of Prayer

When I remembered to check out those other blogs I'd written years ago, I reread each one of them.  Some were reruns of already published posts, but a few were brand new.  ACTS was one of those brand new ones.  I wanted to share it here (with a few edits) today.  

Sunday is such an important day for me - it's a family day, it's a relaxing day, and it's usually a Church day.  I feel so at home when I go to Church, and today, with the help from a friend, we got to go to Church as a family.  Well, almost a family.  

While the rest of us go, Ronan will be at home.  He will be safe, he will be happy, and will be comfortable.  He won't join us yet, but instead of having to split up and go to different Masses, my husband and I will get to sit together at Church with most of our happy crew.  The last time we were able to do that was almost six months ago.  

We're still working on getting all 7 of us to Mass.  But until Ronan can handle it, we'll leave him in capable hands for the hour that we are away.  I'm praying that he'll be able to with us soon.  As I pray, I will remember the types of prayers I'd written about a few years ago...

--

ACTS, originally posted on the AO blog February 2010:
I joined a faith-based mom's group just a few weeks ago. I needed too. I had been moving like a robot for some time trying to keep up with my family's full calendar. I hated that. I started to show emotions that would pop up at the worst times. Like when I was being the cranky, yelling, hurry up get your shoes on because we have to leave NOW stressed out Mom. I was also the weepy can't get anything done right Mom while crying in the car in between appointments as I anticipate another busy day with no chance to rest. That hasn't happened more than a few times, but when I started to get completely overwhelmed with life in general, I noticed one aspect of life was being pushed aside almost completely: praying.
In order to get a grip on life, I needed to learn how to let go of, or at least learn how to handle, some of the daily stresses. I needed to not live in my four walls that were quickly caving in but instead go out and find something specific for me. It's not a selfish 'must have' but a desperate 'need to' survive. I stumbled upon the mom's group at a parish I pass on the way to my son's school. I barely have a chance to do more than attend Mass at my own parish on Sundays, so I welcomed being a part of a like-minded group of moms looking for religious enrichment. It helped that they offered day care at a very nominal fee, so I signed me and the kids up for a few-months long study of praying. While Ronan is doing his best with his instructors at school, I get to stop, listen and believe again.
We're studying a book about prayer. Don't get me wrong, I know how to pray. I do it all the time and sometimes over and over and over again all day long, God, puh-leeeze help me. Lord, why is this so hard? I haven't shaken my fist up toward Heaven but I do raise my eyes in absolute amazement that I have been handed all that I have been handed. I look down at the utter chaos that is my home and shake my head wondering why I can't put it all back together. I was hoping to breathe a more joyous breath of prayer instead of the woeful words I have been using. Luckily this last week's chapter talked about four specific types of prayer, and I knew it was perfect for what I needed.
I have a dream of one day being able to do some public speaking about our journey with Ronan. I have helped a lot of people along the way but it's usually in the comfort of my home and in my jammies at my computer. Many people in return have helped me with encouraging emails, helpful websites and even a handful of phone calls that adds a personal, human touch.
If I could stand up and say thank you to all of those people in this community who have touched my life, these four types of prayers (using the acronym ACTS) would help me with my speech. I would speak from the heart while scanning the crowd as I shared the following. Even though my words would be specifically directed to God, I have a feeling many parents of children with autism or other special needs would echo the same thoughts. So, here goes. This is for you and for you, and you, and you and You:
Adoration: Dear God, I adore You for all that I have been given. On my worst days, when things are at the lowest, lowest, low, I know that things can only improve. For that, I am amazed and so totally grateful. How did you know that I would learn to be so strong to do and deal and overcome? Even if I doubt myself for a second, You show me how much You love me when You entrusted me with this child. My past may have lead me on a path yet unknown to me but You have provided direction for the future just when I need it. I am humbled to be here.
Confession: Dear God, I'm scared to death! I am so afraid of the future! I see other children make their leaps and bounds, their gains and their recoveries, but I am terrified that my own child will regress or become aggressive, and worse, even die from this! I fall short when I give up. I feel weak when I don't believe. I am sorry for the despair I feel, and I promise to do better and to try to keep more hopeful instead.
Thanksgiving: Dear God, Where do I begin? I am surrounded my many parents and providers who believe in Ronan. They even believe in me! These people happen to walk into my life at a point when I may have been on my knees begging You for help. You knew that I needed that. These people have helped me form the hero who is my son. Thank You for this chance to be a better person and to be a loving Mom to this child, Your creation...Ronan!
Supplication: Dear God, I know that Your plan for our lives is already written. You know what my future will be. You know how Ronan will fare in this life and in the next. I ask for continued guidance, for patience and for resources to learn, to grow, and to help. For Ronan, I ask for clear speech, cognition, and healing from whatever pain he is in. I ask for continued blessings for our family as we all learn to work and help Ronan with his special needs. His siblings are growing up with more compassion than most other children their age. I pray they will only have compassion for Ronan and for other children like him. Please, God, bless the other families who are walking this same journey and give them hope as You have given mine. Together, we will believe.
Amen. Amen. Amen. Amen.
---
I pray daily.  Some days, it feels like I pray non-stop.  You know my prayer: for Ronan, for his healing and recovery.  If you have specific intentions for your child, let me know.  I would love to add them to our family's daily prayers.  
xo, Cat


Tuesday, November 10, 2015

Listen to Your Heart


"Sometimes you wonder if this fight is worthwhile..."

While that lyric comes from more of a romantic-y 80s song, think of that particular line in the form of a message from Ronan to me.  I heard it yesterday being blasted from someone else's car in the Walmart parking lot.  It played as Ronan was desperately sending a message:  he was communicating to me that he did NOT want to go into Walmart.   

It was supposed to be a fun shopping trip.  I didn't need to get anything, but we were going so Ronan could practice shopping.  We haven't had much luck shopping at Walmart lately.  He can go in and out of other stores with no problem, but I'm not sure why he struggles with Walmart.  I don't know if it's the bright lights, the high ceiling, the constant noise, the many shoppers, or if his legs hurt or if he doesn't think he'll have the energy, but it's become quite difficult for Ronan to even get out of the car let alone walk into the place successfully.  Whatever the struggle, we were face-to-face with it again yesterday.  

Every time I tried to unbuckle Ronan, he blocked my hands.

Every time I tried to softly encourage Ronan to go with me, he signed no.

Every time I tried to think of something positive to say, Ronan looked at me with sadness.  

When he began to vocalize his responses, and when he welled up (which he never, ever does) I knew that the trip was a bust.   

"And there are voices that want to be heard..."

Ronan was voicing his response.  He was definitely trying to get me to hear them.  But was I listening?  No, I wasn't.

I'll give him credit, though.  Ronan communicated well - he vocalized, signed, and typed his request to not go in.  And yet, what did I do?  I tried one more time to convince him to go in the store with me.  Even with the promise of french fries for his troubles, he said NO.

"Listen to your heart when he's calling for you..." 

What was I to do?  Force Ronan to go in?  I've tried that before.  Forcing a non-verbal child with autism to go into a store he doesn't want to go into doesn't work. 

So instead, I listened.

I got back in the car.  I buckled up.  And we drove away.  We didn't go straight home though.  We went to another store.  I'm so glad that we did.  There, Ronan successfully browsed, picked out an item, stood in line (behind two customers and in front of a screaming toddler), and bought a new-to-him Wii game.

Did he get his way?  No.  I don't think that he did.  In rerouting our day, we found success elsewhere.  Ronan went out.  He followed directions.  He made others aware of his disability.  More importantly, he made others aware of his ability.  Ronan shopped, he waited (mostly) patiently, and he made a purchase.  That's a whole bunch of progress if you ask me!

Instead of letting a potential incident in the Walmart parking lot rule or ruin the day, we found another solution.  That solution allowed us to skip Ronan's frustration, to skip my frustration, and to skip an epic meltdown.  

We skipped a quick trip to Walmart yesterday, and that's okay.  
I don't like shopping there so much either.

xo, Cat



Monday, November 9, 2015

The More Things Change

Right before I went into Church yesterday I remembered that I wrote a couple of blog posts for another group several years ago.  I'm not sure what triggered the memory, but I made a mental note to look for those posts when I went back home.  That would have to wait.  Instead of sitting down to read, we all piled in the car and went to the park to play.  

After things settled down late Sunday evening, I finally had a chance to look for those old blogs.  Some were re-runs of my AofA posts, but a few were brand new.  I had hoped to write more for AO, but lack of time, my family's growing needs, and other commitments kept me from adding any more.  

While walking down memory lane, I reread the few entries that I have on the site.  I wanted to share one of them today here.  I obviously needed to get a few thoughts out of my head when I wrote it. I don't remember writing it, but the title I chose certainly got my attention!   

Here it is again (and edited just a tad).  

--  


This Blows 
While I try to be upbeat and hopeful, there are days that I just can't keep smiling. Ronan looks so normal at first glance. Strangers don't understand why he behaves the way he does when they first meet him. It's painful in those moments to either try to explain things to them or to choose to move faster and farther away from them.
I struggle to envision Ronan as typically-abled on my own bad days. Sometimes I just want to blow off my responsibilities as a Mom, but I know that I could never do that. I have five kids, and they all need me in some special way. Ronan is my most needy on most days as he has many medical issues.  Those include mito disease, autism and cognitive delays. As I try to manage his needs, as well as my other children's, my life includes weeks that are tornado-like.  Those weeks should have high alert statuses to warn others what to expect.
Ronan walks through his life waiting for directions as he's told to do many of tasks each day. My other children dance around their brother as he moves at a slower pace. He tries to get out of their way while they do their chores or finish their school work they do on their own. Ronan looks for activities that keep himself happy and occupied (and away from me as I'm constantly redirecting him). My children thrive on heartfelt encouragement and their excitement for life has struck a new interest in Ronan. He has started to look for approval at certain parts of his day which is so rewarding. He seeks more eye contact when he signs a request for snack. He's even trying to fingerspell some of his words! He waits for verbal praise when he is able to say a word since it has required so much oral-motor planning on his part. Ronan's patience level is much lower than my other children's, but he works oh, so hard at that when he really, really, really, really wants his movie on right now and please, please, please he lets me know as he signs for me to turn it on quickly.
Ronan has also had a new surge of awareness to our world and in his own family. He's seeking me out more even though I'm the one that makes him do so much work like his ABA and speech therapy homework and activities. I don't mind this seeking Ronan is doing since it includes hugs and cuddle time. I cherish these affectionate moments when Ronan puts down a toy that he's become attached to, walks directly to where I am, and puts his arms up for a hug. I immediately embrace him because for years any type of hug that I attempted to give him would result in him pushing me away. The sensory issues were far too severe to allow for proper hugs. These hugs that I'm greeted by now are treasures.  The hug isn't a 'quick thankyouverymuch; hug; now, he won't let go of me. All of a sudden, the quick hug I'm expecting turns into a crouched down, sitting on the floor still holding Ronan in my arms and now nesting in my lap hug. While he sits, we rock slowly back and forth in silence and let the world wait for us.
Another surge of awareness is happening too. We increased some of the therapy and educational opportunities for Ronan. Just today, after years of hoping and wondering and waiting, another new skill emerged. Ronan's private speech therapist has been working with Ronan for only 3 months and has done more in those few months than other specialists have done ever. Our new therapist got Ronan to blow through a straw! I witnessed that magical moment today as my child sat and waited patiently and willingly to do just what Miss Erin was showing him to do. For Ronan to accomplish this major speech goal of blowing through a straw in order to make something else move (a cotton ball) will certainly open more doors for him. His vocabulary of 4 words last month also grew today at therapy when Ronan identified a ball by saying ball for Miss Erin. He now have five words!
While most of Ronan's days are full of struggle just to do the simple things like getting in his chair without falling over, or scooping his food without it spilling out of the spoon, Ronan is victorious in some manner. Each day he faces more challenges than I will ever know. Each day he teaches me and gives me a chance to learn more and do better than yesterday. He is helping me to overcome the pain of what if things had been different, why did this happen to you and why did it happen to me too. I may just want to blow things off but that little hero wrapped up in a seven year old's body keeps pushing me along. I can't wait to find out what we'll learn together tomorrow.

--  


What's that expression?  The more things change, the more they stay the same.  Yeah, that one.  After reading that entry, I can see that some things are exactly the same - Ronan is still in therapy, he still requires loads of redirection, and he still has a very limited verbal vocabulary.  As much as I'd love to be able to share that Ronan is now eons ahead of where he was when I wrote that piece in 2010, he's not.  

His delayed speech is still delayed.  

His attention span is still short.  

His needs are still great.  

Those needs.  The intensity of them.  The struggles he faces.  The strain of helping him through the struggles.  That's all still here.  But so is my dedication to Ronan.  

Despite the lows, we do experience some highs.  Like at the park today, Ronan spent a few minutes kicking a soccer ball.  When he'd usually rather sit on a park bench and count down the minutes until we leave, he got up and played.  It lasted only a few minutes, but he was active and engaged, and we were delighted to witness it. 

Sometimes life does blow.  But other times, like yesterday, when the day was good and when we watched things come together, we saw moments of determination, of clarity, and of hope.  I love those kinds of moments.  They can be few and far between, but they are always a good reminder to never, ever give up.  

xo, Cat


Friday, October 16, 2015

Saved

Happy one year anniversary to my blog!  Today's post is dedicated to my parents. 
I got to talk to my parents a few days ago.  I love it when we can chat.  It is rare to get a full conversation in when all my kids are home, but twice this week, I've been able to talk to my Mom and Dad.  

While on the phone we talked about all sorts of things - the kids, school, the upcoming holidays, and Ronan's health. Those are "the usual" topics we try to catch up on in phone calls, but we talked about something else this week: the fact that what happened to Ronan helped save his little sister's life.  

Izzy brings that up every now and then.  She remembers that fact usually after Ronan's had a major struggle.  When the struggle is over and Ronan is okay again, Izzy looks at her big brother longingly.  Some days when I see her staring at him, I know not to interrupt.  I know that she's worried.  I can see that she's sad.  I understand that she wishes that things could be different for him.  But I don't cloud her thoughts with my input, and I wait for her to come to me.  She comes to me for comfort and for a big hug. 

Ronan saved his little sisters.  He didn't volunteer to do it. He didn't get any reward for his heroism. And he went through hell to do it, and Izzy realized that a few years ago: 

“Seizures?  Mommy, why?  Why does he have to have seizures?” 

I gave her the G-rated version of what happened to Ronan because I didn’t want to fill her head with too much doom and gloom.  She’s heard so much medical talk about Ronan in the past, but I didn’t know how much she truly understood about the science behind Ronan’s problems.  Since she’s the kid sister and arrived into the family after Ronan’s vaccine injury she has only known his signs, symptoms and the talk of seizures, mito disease, blood work and more.  To her this part of his life is his “normal.”  She missed seeing first-hand what happened, [and how typical  he was before he got sick] but I didn’t give her enough credit.  Izzy understood the explanation I gave about Ronan, his brain, the seizures and examples of what his body can’t do.  She looked at me and said, “So, Ronan got his shots, then he got seizures and now he can’t talk and play like me.”  

Bingo.

Because of what we learned about Ronan's health and how vaccines caused him more harm than good, and because they also negatively affected Ronan's younger brother, we knew to be carefully when it was time to consider medical interventions we would be offered when Izzy was born.  Her health depended on it!  

When she arrived, we were armed with much more information and were confident about accepting (or declining) what others deemed standard medical care and safe and effective than we had been with her older siblings. 

Izzy knows this now as do our other children.  None of them likes that we had to learn the hard way, me included.  My parents don't like what we've gone through either.  They understand that this hasn't been easy for any of us and are supportive of what I've had to do to protect my children.  I hear their support in the conversations that we have over the phone and see the love they have for all of my kids when they visit us.  

It's no surprise with all that's happened that my children are mini-activist and advocates in the making, Izzy being one of the best in the bunch.  She is one of the biggest blessings in Ronan's life (and mine, too!).  Just last night as we were getting settled for bed, I was helping Ronan finish up on some exercises.  Izzy saw me setting some things up and was curious what I was doing.  She asked if she could watch Ronan.  I told her better than that, she could be my assistant.  She quickly jumped right in.  

I showed her the material we'd be using and then walked her through what we were doing and why.  It wasn't easy for her, but the commitment Izzy has for her brother helped her stay focused.  Ronan liked the extra attention and tried to get some belly zerberts from little sister before he was done.  With a giggle and gentle redirection, as we do with other tasks, Izzy and I finished helping Ronan with his exercises as a team.

If you'd asked me to predict what my children would be exposed to before I had kids, I would never expect that my children would have seen or heard or experienced a fraction of what they have seen, heard and experienced.  No child should be subjected to the struggles, the stress, nor the sadness that they have.  But it's through those struggles, stresses, and sadness that has shaped them into who they are right now.  

They are hard working.  

They are passionate.  

They are kind, considerate, amazing little humans. 

And they have been saved from further harm because of what happened to their brother.  
xo, Cat



Wednesday, October 14, 2015

Rearranged

Every few months I get an overwhelming urge to rearrange the furniture.  Usually, it's my kids' rooms that get a quick makeover, but sometimes it's one of the common rooms in the house that I tackle.  The last time I decided to rearrange a room it was the office, a.k.a. my hidey hole.  

I love our home office.  I get lots of writing and thinking done in that room.  It's the size of a small bedroom and rather cozy.  But lately, it's been referred to as the ROD (Room Of Death--thanks to my Sacred Sister for that name!) as it is the dumping ground for any and all receipts, important paperwork, medical notes, insurance Explanation of Benefits, pesky bills waiting to be paid, and anything that whatever else that I'm trying to ignore.  

I had ignored some paperwork that was sitting in front of the file cabinet in the office for way too many weeks.  I knew I had to sort through it, but I was starting to dread it.  There are reminders in that pile - of medication mishaps, of costly mistakes, and of frustration.  I dreaded having to go through the pile, and soon, I had started to dread walking into the room that was quietly housing that pile.  Instead of facing the frustrations, I let them stack up around me and take over a room that our entire family needs to use.  

The day I finally decided to attack that pile, I looked around and saw that it wasn't just the pile making me feel overwhelmed.  The flow of the room was off, too.  The cozy feel that this room usually offers was no where to be found.  I glanced at the piano bench and the small end table and saw why.  The coziness had been replaced with clutter--and not just mine this time!  

The kids had been pig piling into the office a lot more and have been leaving traces of themselves behind--a headband, a food wrapper, a pair of mix-matched socks, flip flops, and some dirt that had been tracked in.  Ugh.  I couldn't blame them for the mess though.  I haven't been the perfect role model cleaning up after myself!  It was time to motivate myself, to clean up, and to get reorganized.

Sometimes motivation is hard to come by.  With distractions all around, it's easier to get (and to stay) sidetracked with those distractions than to focus.  I know that when I remember to clean up, though, the flow of a room, our house, and even my thoughts, become positive again and lots more can get done.   

I don't know if I'll ever catch up on everything around here, but I've finally gotten (most of) that unruly pile sorted.  With that challenge behind me, the office was getting its cozy feel back.  After reducing the stress and the clutter that I'd allowed in, I did some minor rearranging of the furniture and like what I saw.  

The room looks nice again.  

It feels cozy again.  

It's inviting.  

It's welcoming.  

And it now has a spot where, when I have time, I can snuggle up and read.  

I read a lot--magazines, newspapers, articles on the web--but never books.  My attention span is ridiculously short, partly because of the demands being demanded of me all.day.long but also partly because my attention span is just ridiculously short!  When I found one of my favorite books of all time late this summer, I thought I'd work through that short attention span and read the book in one sitting.  

Ha!  

It's taken me forever to get through the book - not just because of daily demands and that I'm a slow reader, but also because of how rearranged life gets.  Just when I think I have enough time to relax, my family needs me.  Just as soon as I get one thing done, something else immediately requires my attention.  Just when I think everything is finally in order, our schedule changes.  Just when we get used to a routine, I get tugged in one direction and then in another.  The book has gone with me to doctor's appointments, to volleyball games, and accompanied me in the car ride line as I wait for the kids' dismissal bell.  I bring it with me in the hopes that I can finish it.  But I have yet to finish it.  

I know I will soon.  And I know just where I will sit down to do that - in a quiet corner in our cozy home office.  That'll happen on a day when I feel like I am caught up with life.  

Some days I feel like I can't catch up.  But I do my best.  I do my best to be positive, to stay organized, to focus on what's important, to appreciate the little things, and to always inch forward.

xo, Cat