Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Tuesday, March 31, 2015

March Updates Part 2 - Walking Together

Despite our disastrous family dinner out, we had a few good things happen this weekend.  As you all know, Meagan finally got her new AFO's a few weeks ago.  They are similar in that they still go to just below her knee, and they are for the most part still rigid - but the one difference is that the PT had the lab make the back of the AFO's with a hinge so Meagan can now flex and point her ankle joint.  Her new AFO's also have no tread on the bottom so she must wear shoes with them.  The shoes that came with her AFO's are, uh... quite large.  They look even bigger since Megs is such a small kid.  We refer to them lovingly as the Frankenshoes.  Since having Frankenshoes makes it a lot harder for Meagan to walk (because of the sheer weight of them!) we are going to get some much lighter more streamlined shoes to squeeze over her braces.  This should help her a bit in picking up her feet.

A few months ago, we were happy Meagan would finally try her walker.  If you remember, before that we spent about 9 months not even being able to go near it or she would scream. "Walker" was pretty much the secret forbidden word around here so we were very happy when Megs finally warmed up to the idea.  Since that time, we have been working with her by holding her up with a scarf around her waist so she really doesn't have to do "that" much work, but could get what it felt like to use the walker.  We are trying to transition out of that now - taking away some of those things so she gains a little more strength and a little more independence.

 Mrs. M, the PT, decided to start with working on some independent standing.  She stood Meagan up in front of her, got her feet planted securely and slowly let go of Megs.  As soon as her hands were leaving Meagan's sides, Meagan lost it - completely freaking out, crying, and asking me to hold her.  The same thing was happening when we were trying to get her to use the walker on her own.  Crying, or just looking scared and asking for her scarf over and over again.  Understandably, she probably likes our arms or the scarf because it gives her that security she can actually feel - but it was time for her to try it without that assistance so we can start building her stamina.

We finally had some success with this on Monday afternoon! Meagan loves rhythm so the girls had gathered in the living room and were telling Meagan "Let's march... march...march..."  Typically she will clap along and then want to try a little bit.  Well the first attempt didn't go quite as planned.  Introducing Meagan's stubborn side:

After some encouragement and a rest, however, she finally decided to give it a go.  Although no scarf, Reilly held under her arms for security - we don't need a face plant on the front of her head where there is no skull.  Not good!  Step by step Megs tried on her own and made it across our living room! If you notice the girls laughing in the video, it's because they are.  One of Meagan's struggles learning with the walker is how to coordinate.  She doesn't always get she has to pull it along with her.  So in the last week, I have been helping her pull it so it hits her bum, and then she knows it's time to "step, step" forward.  Well the girls hadn't seen this yet.  So, because the walker was hitting Meagan's bum over and over again as she inched forward, it was naturally hilarious to my elementary school age children.  Actually we have found anything having to do with their bums is pretty much the funniest thing on earth.  But hey, we roll with it.  I mean, why not?

Meagan's successful run

Later that same day, Meagan's PT and the representative from the mobility company that made Meagan's wheelchair both came over.  Meagan was measure for her own walker.  Woohoo.  When it comes, she will be able to take it to school and try it in the classroom.  Meagan's PT said if we keep working with her, she feels Meagan will be able to be independent in the house and at school with her walker.  She said for regular walking or longer distances (malls, a campus, stroll down the street, etc.. ) Megs will most likely need some sort of motorized device (wheelchair..etc.) but hey, that is just fine with us. 

So, despite the quite disastrous start to our weekend (or so I thought), it ended up pretty darn good.  Maybe one day, the therapists said, Meagan will be walking together with us.  What they don't know is that she already is.  There's just no other way to take this journey! 

Monday, March 30, 2015

March Updates Part 1 - Walking outside....

This weekend was a happy time for the family.  The girls got their third quarter report cards.  All A's and lots of great remarks from their teachers across the board. I was so proud of the girls, as was Brian.  We decided it would be a great opportunity to do what we normally don't do - go out as a family and celebrate their achievements.  It had been a hectic month - things had been stressful, and despite all of it, the girls had been so positive and even better excelled at school.  It was time to celebrate.

We went to a restaurant we have been to before as a family.  Just a local place - family friendly, noisy but not too noisy, affordable, and fun for everyone.  It was going to be a great night of letting the girls order what they would like, family conversation, and hearing the girls giggle and talk on their special night.  Well it didn't exactly turn out that way.

The funny thing about having a child with brain problems that include pressure issues, sensory issues, and many other things, is that you just never know what will set them off, when they will freak out, and if you will be able to help them through it or not.  This weekend, our family dinner was one of those nights for Meagan.  She.  Just.  Flipped.  Crying, screaming, asking for the door, wanting to go, wanting to stay, wanting her wheelchair, wanting us to hold her... the list goes on.  I knew from the first instant she started crying that there was going to be no calming her.  Any special needs parent knows that moment.  When it's just done.

As the dinner went on, she became worse and there was no soothing her.  I still have no clue what set her off - if anything - or if it was just one of those "off" nights she has every so many days.  In any case, I took her out of her wheelchair and walked outside holding her close as she cried and became increasingly upset.  After several minutes, my arms were becoming tired so I went back inside to have Brian take over.  He walked outside with her (where she still screamed), and the food arrived.  As much as my mind was occupied with Meagan's mood, I acted excited when the girls' food came.  I oooh'ed and ahh'ed over the yummy meals they had ordered, helped them get things situated, cut, served, and seasoned as needed, and then gave them happy smiles as they dove into their special meals.  As soon as they were settled, I walked to the front of the restaurant where Brian was still standing with a screaming Meagan and took her so he could go eat.  He insisted I sit down and enjoy with the kids, but, knowing he has less quality time with them during the week, and considering all of his hard working hours as of late, I insisted right back that he go enjoy a hot meal and fun chatter with his daughters.  He handed Meagan to me and went to eat.  I proceeded to ask Meagan "Are you scared?".... "Are you hurting?"  .... "Are you tired?".... "Are you hungry?".... to every question was a repeated answer of what I had just asked ..."yes I ______"  Basically, I had no clue what was bothering her.  And she couldn't help me because she couldn't answer my questions.

After a short while, Brian came out and took Meagan so I could go back in. He pushed Meagan's empty wheelchair, carrying her crying all the way and headed to the car.  I ordered boxes for my portion of the meal, settled the check, and took the girls to the restroom.  We walked outside and made our way to the van.  I was so happy the girls got a special dinner out, but at the same time, it was one of those parenting moments where I also felt helpless and emotional.  I felt so terribly they hadn't enjoyed the time with both Brian and myself, that they hadn't had Meagan engaged and enjoying their joy, and that we had to do our family dinner in shifts among the mayhem.  But then I heard a little voice from the back of the van.... "Thank you mommy and daddy for our dinner!"  It was so joy filled and giggly.  I then heard the other girls chime in with "thank you!" and "we had so much fun!" and "Is Meagan ok?"..............

It was at that moment it was apparent that nothing had been taken from them that night.  Sure, in the "normal" lens of life, their dinner was disjointed, interrupted, and fractured.  One parent was in and out, Meagan was missing as she was having the sensory meltdown of the month, and the dinner was rushed as we boxed some of our meals to go.  What kind of celebration was that for these girls that had been through so much this year, and triumphed with good grades and personal achievement? Apparently, it was a celebration worth thanking us for.... and as the giggles and laughs continued from the back of the car, I realized that for them, it was the perfect celebration.

It is nothing new for us as parents of four other kids to have walked out of the occasional restaurant, or concert, or other events where sometimes our toddler children acted, well, toddler-like.  But now as a parent of a child with brain and sensory issues, this is a much more complex issue.  I remember leaving a restaurant with Reilly when she was a young toddler because she was overtired - but - I knew she was overtired.  The next time would be better.  She would outgrow it.  With Meagan it's different.  One day she can be wonderful.  The next day it seems as though her brain is fighting itself, and there is just no calming her.  Or the light is the wrong way in the window and sets her off.  Or as much as she loves music, a certain sound rings in her ears just the wrong way and makes her scream.  Or someone looks at her in a way she doesn't like.  Or we say something to her that typically can be calming, but the next day sends her into the meltdown of all ages.  The brain is just so complicated.  And so are the consequences of its confusion.

As the kids woke up the next day talking about their fun dinner out, the memories of my face buried in Meagan's neck with tears of frustration erased.  As they chatted about which moment had been their most fun at the restaurant, the frustration of me asking Meagan unanswerable questions calmed. I think the night of me walking outside our family dinner, but still seeing the unending joy on our older girls' faces about their special night out was a reminder that in most ways, they always walk outside.  There was nothing detrimental to them about Meagan's behavior, and the fact that Brian and I had to trade off being at the table didn't ruin their night.

As the weekend subsided we had some pretty amazing things happen in the family.  It was almost completely opposite to our family dinner out.  But one thing did not change - the girls' joy.  They know Meagan and they know our family a lot more than I gave them credit for.  They know that not every celebration has to be perfect, and sometimes family dinners are a little different than what others may be used to.  But that's ok.  Because through all of this, the girls are still joyful.  They are thankful.  And they are selfless little girls with not one complaint.

  I'm not really sure why we have seen these sensory changes in Megs - but a lot has been happening with her in the last few weeks and we have noticed when she does make strides or grow, her ability to handle input seems to be diminished. We are hoping as the new things she is trying settle out, so will her meltdowns.

As much as I carry the guilt of those moments I feel seem lost to the older girls, (which I think is natural if you are a parent,) Reilly, Kaitlin, Anna and Maura show me time and again that God has bigger plans. As Meagan screamed throughout their dinner out, I felt helpless strolling outside the restaurant windows wishing we could just be together as a family. I was concerned the girls felt the disjointedness of the evening that was supposed to be their special celebration.  But then I looked in.  The girls were laughing.  Talking.  Eating.  Enjoying each other and the surroundings of a special night out.  They were frankly almost oblivious that I was outside with their screaming sister worrying about their happiness.  It was then I realized that walking outside, as frustrating as it can be, doesn't mean being marginalized.  It doesn't mean having a barrier from joy. Walking outside just encourages us to go to the window, gently rub away the fog, and find the joy. Looking in and watching the girls have such a fun time together helped me do just that.  Congratulations to the girls on such great report cards and thank you to Brian for always taking the walk outside with me.

**** ... Part 2 will follow this week on the exciting weekend events. :)