Sunday, December 29, 2013

Step by Step

A year ago today, I nervously hit the publish button for the first time. I don't know if my writing here has helped anyone else out there, but being able to organize the events of the past year and sharing them here has helped me. At the very least, I hope that some of you out there have been able to glimpse into our chaos from time to time and maybe feel like you're not the only ones!

I honestly did not expect things to be this hard this year. I expected lots of challenges. But a year ago, I felt invigorated, ready to work for my children and my family. I still work. Very hard for them. But the events and stresses of this year truly have drained me of every sort of energy. I feel like my fire has snuffed to a barely glowing ember. It's still there, but it's harder to get it sparking again.

It has been literally an avalanche of stress. With the hits getting heavier and harder as the year progressed, and my ability to block the punches, weaker and weaker. Yet, life presses on. The sun rises, my children wake up, there is still meals to be made and laundry to be washed. There is no rest. No vacation from life simply because you are in way over your head, or because your heart has been mashed and kicked and broken. I just have to keep putting one foot in front of the other.

I did not foresee being where we are a year ago. I really did think things would be brighter, running smoother, with a lot more knowledge and help for my children's challenges. Their challenges seemed so obvious to me since I was here in the trenches with them everyday, and I thought others would be better able to see them too. But that hasn't always been the case. And with little exception we are very nearly as much on our own winding down this year as we were last. Well, I do have A LOT more knowledge, but I still have several libraries worth to learn. And "professionally" I do have some help, some has been only marginally helpful, some might have actually caused more problems than it solved, but some has really been insightful and helped provide a much clearer direction.

One of the most important lessons I've learned is that while there are many professionals who can at times provide answers and ideas, we will always know our children, their abilities, their strengths and weaknesses best. Outside input is very valuable, but we as their parents have to decide the best way to use this input to best help our children grow and continue to develop.

One of the best resources I have found is other parents with similar struggles. I think we learn more form each other in general than we do from all the various professionals who see our kids on only an occasional basis. And the professionals who really care have an enormous impact on far more than just the children they personally work with. One great tip to one family can make a huge difference for dozens, or even hundreds, when that family shares what they have learned.  So please keep sharing!

I do not know where I will find our family a year from now. Wherever it is, it's guaranteed to be an interesting journey. I hope I have learned enough lessons from this year to help us continue to navigate the next. And the truth is I still think things are going to be brighter, running smoother, and that I will gain even more knowledge and help for my children's challenges. For all of ours, really.

I am a realist, I see and expect challenges. But I am also an optimist, I can keep on trying to find the bright spots of each day and be thankful for them! Even now in one of the darkest times of our whole lives, we get warmed by rays of sunshine. Rays that keep emanating from the smiles and eyes and hugs of all the little people that I love so much it hurts.

Their sunshine through my tears keeps on making rainbows. And rainbows represent promise. Promise that we are not in this alone.

I'm determined to hang onto the One who gives "power beyond what is normal". 2 Corinthians 4:7

Friday, December 27, 2013

Reflections

There are times when tragedy strikes and swift action is needed. We surge forward driven by adrenaline and instinct in order to prevent, aide, or repair.

But then there are the kind which strip us of all power. We are helpless to change, prevent, aide, or repair. We can only grieve. And continue the constant march forward. There is no stopping. No pause. And the most important thing to do is simply to love. Love more. Love hard.

In the wake of such, I am drawing my children a little closer. Studying their faces longer. Extra hugs, more kisses. And more remembering.

I reflect on who I was when they were born. And who they were. Each one was so distinct in their personalities from even before they were born. They are each so incredibly powerful and rich in love, passion, and spirit!

I have been reading some of my earlier letters to them that I hope to give them when they are older. With each year I have allowed life to keep me busy enough to sort of let this drift to the wayside, but I really wish to catch up with it again. The letters take a different path with each child, as well they should. And my hope is to allow my children in the future to gain a window, a peek, at me from the past. To encourage their future selves to get acquainted with the present me. And maybe even their past selves.

Until I gift these letters to them however, I treasure re-reading them over and over myself. At the very start they were very factual, first time Zak rolled over, weights, etc. But somewhere in Zak's second year of life I found my voice. My voice to him and for my writing. I found our conversation, even though for the time being it's one-sided.

I thought that I might periodically share bits and pieces from these letters here. Perhaps it will inspire you to start your own little traditions, and future conversations with your sweet babies. Or to reinstate ones that time may have let drift. But no matter what little rituals you have, tell your babies how much you love them, hold them close, breathe them in.

***

(This was written after a particularly exhausting mid-week Bible Meeting, the majority of which I spent thwarting escape attempts, and pulling him back from the water dripping off the eves countless times, which of course rendered his pants wet and my skirt subsequently ruined after having sat him on my lap. We pick up right about here...)

An excerpt from a letter to Zak, written May 11, 2004:

...I pull you once again onto my lap and wrap you in your blanket and hand you your cup (you are already sipping from your bottle).

I actually get to hear quite a bit of the closing talk thanks to your drowsiness. You drift as you hold on to your red truck, moving it back and forth occasionally, trying to stay awake.

As the talk comes to a close, your eyes are still barely, but nonetheless, open. I transfer you to your chair and begin to pack up our meeting bag. I hand you the songbook to hold and as I am finishing up, the song number is announced. Sitting up, I see you have the songbook open. You slide off your chair once more and stand attentively in the row. The music begins and you very seriously look at your book, and then, very sweetly and ever so adorably, you begin to sing.

I sit in silent awe for just a moment watching my son, my little boy, no longer a baby, standing, singing. All on your own and without any prompting from me, you participated from your innocent little heart. I pull out the other songbook and turn to song #18, quietly, so as not to interrupt. I join you. You turn your face to me, I smile, you smile, look back at your songbook and sing some more...

I don't remember much from the closing prayer. I must confess I was distracted, holding my boy close in a hug. A boy I underestimated, thinking you don't notice the little things we do in our daily lives, just because you don't actually participate yet. Today, I realized you were just waiting for me to hand you the songbook. You know what it is for and need no instruction, for you observed, and through observation have learned so much.

...I anticipated a long evening with a tired baby. I discovered...a boy with a song.

I love you.

Love,
Mom

Tuesday, December 24, 2013

Because Family Matters...


Over the years I have seen my family grow and change. I am number four out of five siblings. Our Mom is blessedly still a big and important part of all of our lives. We have gained, and sometimes lost, spouses, in laws, grandparents, friends and children. Life has taken us all in many directions, and not always in the ones we anticipated, or even wanted to go in. We have more hilarious memories than we can count. But we have some very sad and painful ones too.

Every one of us is very independent and sometimes ridiculously stubborn. This shared attribute can be an invaluable strength, but sometimes our own enemy. We've helped each other, annoyed each other, and sadly, hurt each other too. I don't know if that is ever completely avoidable. Pain, like change, in this life seems guaranteed.

And right now our family is experiencing pain. Deep pain. Each in different ways at different depths and dimensions. But it is a hurt without a vocabulary. And we all need more hugs.

I pulled out one of my journals the other day. I don't do it regularly, or even in the same journals. But when I need to I pull out the one I feel like, and scribble, usually in circles and nonsensically until I feel more organized. When I opened this one, I saw an entry I made eight and a half years ago. All of our lives were very different from the ones we have now. So much has happened. So much is the same. Family can be the ultimate paradox.

I'm not sure exactly why I feel compelled to share this now. I've never shown it to anyone, not even my husband. Not because it contains anything secretive, but I suppose because I was uncomfortable feeling vulnerable. I'm still vulnerable, and I'm still uncomfortable with it. But there are a lot of families out there that struggle...with life, with each other, with themselves. And I believe the sentiments are true for many families. It's not new or profound, but I needed hear it again.

So I'm going to share what I observed and surmised back then. I have copied it directly, and except for spelling, have not changed a word.

***
 
May 26, 2005
1:30 am
 
Families are amazing things. Huge conglomerates of such vastly different, yet intriguingly similar personalities, all mashed together into a unit. They are the people we treasure, and the people we torture. They know everything about us and yet at the same time can somehow be strangers.
 
In the same family there are those so kindred they feel what the other feels, and then ones whose distance emotionally is equal to the span of continents. It is in this unit that we relax, get angry, allow ourselves to be foolish and goofy.
 
They are the people who see us as we are, as the individual the public misses. Our raw emotions come pouring out. They are the ones whose opinions we rebuff, but secretly cherish. Whose approval we most desire to gain. Whose goals and dreams for us we strive for and wish to attain. We want to make them proud and happy, or envious and jealous, sometimes all at once.
 
Sadly though, they are also the ones we hurt most deeply. And whose faces we look upon after and feel pain driven through our insides because words can't be withdrawn or actions undone. We wield an amazing amount of power, most times without ever realizing it.
 
We often don't realize that while the members of our families are the ones we most want to please, the reverse is very often the case as well. Someone in our family wants to please us, wants us to be proud of them, to dream for them. What we say and do means everything to them. Most often we never realize this until we have wounded our admirer. And some will never regain their status.
 
A fortunate few will realize their situation and will become faithful stewards of their loved ones cherished valuables. They will encourage and notice more than before, and they will be kind with their criticism, and tread carefully upon dreams. This is the family member we all want to be.
 
Families are funny things. Nowhere else will you find such a mix and contrast with such unity and spirit.
 
***
 
I wish I could say that I have had great success in applying my own advise, but I can't. I have let opportunities slip by that could have led to greater unity or healing. I have caused pain to those I love, sometimes in ways that could have been avoided or minimalized. I have made many mistakes. We all have.
 
I love each and every one of you in my family. I love the things we have in common, but enjoy our unique differences as well. We will often disagree, and make different decisions. But that is to be expected with interests and passions as diverse as ours. But no matter which directions life pulls us, I carry pieces of all of you in my heart, in my children, in myself. And I hope and believe, that all of you do the same.

 
 


Saturday, December 21, 2013

I'll Be Seeing You...

 
 
 
"He saw the world in pencil."
 
 

 
 
That is what my son said as he admired his cousin's drawings.
 
I've been srtuggling to write something since that awful day two weeks ago. But nothing I put down can say everything that needs to be said. Nor can it give credit, and, dignity, and depth to the feelings of everyone who cared for him. So I'm not even going to try. I'll just show a glimpse.
 
In a way, it's fitting that art, his art, is really the best way to say goodbye. He was't just about his art, there was much more to him. But it was where he and I had our best connection, I felt.
 
He didn't talk to me about his feelings or big ambitions in life. We didn't always see eye to eye, and even sometimes went head to head. But, from time to time, he showed me his art. And it was these times, that I could best see his heart.
 
It was here that he could fold and bend time and space and color and shadow and give the rest of us a glimpse at how he saw the world. It was here I could best see his attention to detail, his calm, and his tenderness. His pulse of sorts.  He didnt do it to gain approval. He did it because enjoyed it, he loved it.
 
And indeed. In many ways, he saw the world in pencil. Simple. Powerful. Beautiful. And sometimes, intense. 
 
 
 

 
I'm no expert, but I have no doubt he was gifted. He was a true artist. So I'm glad he did it a lot.
 
 
 

 
For a while now, several months in fact, I was planning to ask him to draw a portrait of each of my children. Now I'm going to have to wait.
 
I am still in shock. And then the sadness creeps up. And then the ache.
 
A like a painting only partially done, you could see what was coming and you anticipated with excitement and hope to see the final result. Then suddenly and without warning the canvas is just gone.
 
Only this stabs much deeper.
 
But I have hope. And I am comforted. I am so grateful to serve and know our loving God, Jehovah. Who is pained the same way we are when these tragedies happen. And now, more than ever, I deeply appreciate His promise to reunite loved ones, right here on our home that he created with such love, that we love so much, but without the pains of this system.
 
 
Christian, I think this is a tiny corner of Paradise. And I eagerly await the time that we might sit together on this bench, and you can teach me to draw.
 
 
 
***
 
  
I always have, and always will, my nephew, love you. 
 
 
Revelation 21:3,4 ; John 5:28,29 ; Psalms 37:10,11,29 ; Job 14: 14,15

Thursday, December 5, 2013

Keys

Tonight I played the piano for a little while. It has been several months since I have been able to play. I wasn't sure if Kit would let me, but I sat down to do it anyway.

She did let me. She didn't cry.

And when she came up beside me, she didn't make me stop.

And when she climbed onto the bench next to me, she didn't take my hands off the keys.

She just sat next to me, playing on my phone.

Content.

Happy.

That's a big deal.

She went through a period last year where she would cry if I played, and would pull on me, my arms until I stopped and picked her up. Or until Daddy came and took her into another room.

At first I thought it was just that she wanted to play with me. So I would put her on my lap and play. But she would get mad and take my hands off the keys.

So I thought that she just wanted to play. Sometimes she would plunk on the keys. But mostly she would just try to turn the pages of my music.

Soon it just wasn't worth the drama. I play to relax, and there is nothing relaxing about having a weepy toddler climb oneself when one is trying to chill out. So I haven't tried it in a long while.

After I was done I was thinking about how similar her reaction to my playing was to Zak's, ten years ago.

He was even worse though. He didn't just cry, he screamed! He would hit the paino, and throw things, and try to push me off the bench. He hated it when I played the piano.

I never could figure out why back then. I chalked it up to jealousy. He did like banging on the keys, so I just assumed that he was a bit territorial about it. Didn't want me on his turf. And didn't want me giving my full attention to anything else.

I don't think so any more. I think both Kit and Zak experienced the same thing when I played the piano.

Pain.

Yes, I think they cried because it hurt. When they tinker, even loudly, they are in control of the rhythm and volume. They can stop any time, get louder when they want, and play the rhythm of their choosing.

But when I play, I'm choosing all of those things. At a time that is good for me, not necessarily them. The sound changes when I use the sustain pedal. Or when the dynamics change suddenly from soft to loud. Or the rhythm from slow to fast.

Also I tend to play songs that are pretty emotional. Broadway, and slow country. Both Zak and Kit are very responsive to music, and can easily be overwhelmed by the emotion of a piece.

Zak used to especially scream and cry when I played the theme music to "Phantom of the Opera". It was so intense that he was really scared. Of course I didn't know that was what he was feeling until he was about three and had enough words to say it. I felt bad that I didn't know sooner.

And one day not too long ago, Victor had his Broadway music playlist on in the living room. When "Don't Cry for Me Argentina" came on, Kit started crying. She climbed into my lap, buried her head in my chest and heaved. When I pulled her up, her cheeks were soaked with tears, her eyes so sad! I asked Victor to skip it, and he did, but it took her a little while to regain her composure. She started up again when another Evita song came on. (Maybe she just doesn't like Madonna!)

Anyway, I think perhaps their response to my playing was partly sensory overload and partly emotional overload. Which makes sense, now that I know these tender hearted babies of mine even better.

So, I'm glad that she seems to be able to manage it better. Because I love getting to play agian, with a warm little baby body suggled on the bench next to me!

And no tears.

It's the best!

Wednesday, December 4, 2013

Conversation Vacation

Scene: Victor and I are getting ready for bed.
 
Victor: "Wow! It's nice to see the floor in the bedroom again. Thanks for working in there today."
 
Me: "Your welcome. See...I can get lots of things done. I'm just running on man time, that's all."
 
Victor: "Ohhhh...that's what happened. I rubbed off on you, huh?"
 
Me: "Guess so."
 
Long pause.
 
Victor: "Well, I spent all day in my biking clothes."
 
Me: "Did you ride?"
 
Victor: "Nope."
 
Me: "Ohhhh...so you wore mom clothes today."
 
He looks puzzled.
 
Me: "I wear yoga pants every day. Have you ever seen me do yoga?"
 
We smile. :)
 
Good night friends.

Tuesday, December 3, 2013

Dance Practice

Classic pink, long legs in white.
She glides into position.
Chocolate hair, all braided tight.
Calm, her disposition.
 
First a leap, and spin she may.
Fingers in the middle.
A dainty skip, and soft sashay.
She nearly flys a little.
 
The kitchen soon becomes her stage.
Her spotlight, rays of sun.
Imagines dreams beyond her age.
And stories that are spun.
 
Her music only she can hear.
The lovely lilt of flutes.
As dancing shoes, her feet will wear.
A pair, of puddle boots!
 

Monday, December 2, 2013

Busy Morning

 
Kit was full of surprises this morning.
 
1.) She brought me the hair box and picked out two pony tails asking me to put them in her hair! This is awesome. Last week was the first time ever that she tolerated her hair done for more than just a few minutes. But she kept them in for about four hours Tuesday night, through two car rides, and our entire weekly Bible Meeting. I actually has the great pleasure of asking her if I could take them out as we put on her jammies. That was a huge big deal! So today was equally exciting to have her requesting to have her hair done again. And she again wore it all morning, all the way to, during, and home from ABA therapy, playing outside, and I think she even fell asleep for her nap with them in! 
 
 
 

She looks so crazy adorable that I left them in even after she got toothpaste in her hair. Which leads me to...
 
2.) When I came out of the bathroom after getting home from ABA, I hear her sweet little voice from another room say, "I'm playing, Mommy." It took me a minute to figure out which room she was in. I found her in the kids room. Painting the bunk bed ladder with toothpaste. Nice. She was just as happy to help clean it as she had been to paint it, thankfully.  
 
 
 
 
 
 
But while I finished cleaning the rest, she decided she was in the mood for something else...
 
3.) She "volunteered" to feed the birds, all by herself. The birds seemed less than enthused.
 
 
 
 
So it was a welcome change when she asked to go swing. The weather was perfect.
 
 
Thank goodness for naptime. It's the only chance I've had all day to finally eat!
 
 


A Little Alphabitty

For several months now Kit has been passionate about the alphabet. And by passionate, I mean obsessed. I've actually seen her sign in her sleep!
 
At first it was just a few letter signs, over and over.
 
Then it expanded to obsessively watching the episode of Signing Time that teaches the alphabet. (Though she is obsessed with almost all of them, she does have intense favorites that she insists on for certain periods.)
 
Then she wanted me to sign it to her repeatedly. I wasn't allowed to speak at first, just sign. I guess she found my voice distracting as she was diligently concentrating on signing it with me.
 
Gradually, I was permitted to speak and sign.
 
When her speech started to reemerge in August, saying the letters as she signed was one of the only things she would consistently vocalize. I would say and sign the  letter, then she would say and sign it.
 
After only about three tries, she could say most of the letters on her own as I signed them.
This week, she has finally mastered the art of isolating her pinky in order for it to stand up on it's own. She is extremely excited about this and shows off her new skill by repeatedly forming the letters i and j, the words yellow, cow, and best if all the hand sign for I love you!  It is so adorable.
 
But this advancement in skill has also added new fuel to her zeal for speed-saying the alphabet! She now says and signs (mostly) the ABCs so rapidly that I can hardly sign fast enough to keep up with her! She has the entire thing memorized and can sign any letter upon request! She also sings the song, but thankfully at a much more leisurely pace.
 
A while ago I wrote about the different learning styles of my other two kiddos. And I concluded with this:
 
" And now, after knowing Kitty Kat for 18 months, I have come to be sure with no doubt that she will shock and awe us just like the others, but certainly with her own vibrant flare! She already does every day. Bring it on Baby, I'm ready for anything now!"
 
 
Ha! Truer words have scarcely been typed!
 
Yes, at the tender age of 26 months, my Kitty Bitty knows, signs and says ALL of her letters. And like her brother and sister, she's really done it almost entirely on her own, I really haven't "taught" her anything. That is pretty stinkin' cool!

 


Sorry, the face blur ended up blocking out most of her signing, but the sound is good. You can hear how much she loves LMNOP! :)

 


Shorter and you can see her signs better, and she says her colors too!

Sunday, December 1, 2013

The Best Therapy Starts at Home...And Sometimes, With a Cat

Long before we finally started "real" therapy with Kit we created our own home therapy remedies of sorts. These activities and games have had a big impact on all our kiddos. And most of the time it never even feels like "therapy".

While Kit has technically only been observed twice by a speech therapist, she has had her own mini-ST for months in the form of Grace. Grace is a master at making Kit use her words for EVERYTHING! Grace won't give an inch either, if Kit wants it, then she's just going to have to ask for it. With real words. And Grace will even correct her pronunciation should she slip up.

In fact for a period of time, Kit probably said more words with Grace than any other time or situation. She gladly accepted Grace's challenge, even while choosing to stay silent for Victor and I, not that we weren't attempting the same prompts.

Physical and Occupational Therapy primarily fell under Zak's jurisdiction. He, not at all surprisingly, seems to intuitively know what her body needs. Everything from hanging upside down, to giggle fests, to crawling like doggies to hugs and snuggling, he's amazingly in tune with her.

Not that he doesn't sometimes make her crazy. But he knows how to draw her into play and she is most times a willing follower. He "gets" her love of stacking, and lining things up. He loves to play spinning games with her. And he loves to make her laugh. And NO ONE can make these girls laugh like their big brother can.

And then there's Victor. Daddy is the deep pressure king! He doesn't even have to try. His are the cuddles and touch she can best tolerate. None of the wispy girly twirling of her curls. No way! Instead it's super squeezes, baby sandwiches, and whisker rubs! I love hearing her squeal "AGAIN" even as she's still trying to catch her breath.

I serve as her jungle gym. I'm the one that can hold her upside down the longest, bounce her on the ball to her satisfaction, and in general my mommy arms just seem to have more stamina for extended periods of holding a wiggly mini-contortionist. But I'm also the one that can brush her hair just right, and pick out the least irritating outfit, and hold my arm in just the right position for her to push her feet against when she is tired.

I believe all of this has made a big difference in her progress over the last year. But in the last two months we have seen Kit in many ways simply transform!

After many unsuccessful attempts in the past, we again tried to move Kit's bedtime to an earlier hour upon the suggestion of her OT during her first visit. Quite honestly we were scared that it would undo all the months of tiny steps that had added up to the huge progress of her being able to fall asleep after her routine without having to be held, or even touched! That in itself felt like such a mountain had been traversed to get there. And messing that up in any way was extremely undesirable. But this time, it worked!

Kit has been going to bed around 8-8:30 for nearly two months now. She got so good at it we were finally able to move her back into her bed, in our room! And to add miraculous to the phenomenal, Victor can now, on the really good nights, actually leave the room with Kit awake, and she will fall asleep entirely on her own! I honestly had my doubts about that becoming a reality for another year at least.

And that's not the only major change. Her speech has literally exploded! In the same two months, she went from being delayed still (18-19 month level at 24 months) to screaming ahead with some skills well into in the 31-35 month range. And the speech therapist hasn't ever actually worked with her.

She has suddenly started to express (I mean verbalize about) feelings and some abstract concepts that she never could seem to understand like "and" and "later", or self regulate, such as calming herself after initially getting upset (read: screaming rage or miserable tears) in an attempt to "behave" her way into getting a privilege like playing the phone. These are huge milestones for her. While she still is far from mastering these, her awareness was the crucial hinge that was missing in many places and now we are seeing that emerge.

Another huge Woo-hoo came when she pulled out the play tea set and she started to pretend to bring me food and drink! There are at least four huge breakthroughs in just that tiny typical toddler behavior.

1)The fact that it was typical toddler play is one of them!

2)That she was attending to toys is another. 

3)That she independently engaged in multi-faceted pretend play both by her self and with me is amazing because she struggles with pretending.

4) And that she choose the activity spontaneously, without it having been in easy visual range, is also a big deal for her since this has never been a preferred activity. 

She can keep all the dishes upside down everytime if she wants (the tea pots and several others absolutely had to be upside down), as long as she keeps progressing like this!

The light bulb finally went off in my discussion with the speech therapist, and as I said it it really dawned on me. "It all started happening around the time we found the cat..."

She just looked at me with a knowing smile and nodded. "I don't have to tell you how very often these 'miraculous' things happen when anyone with special needs befriends an animal. They can have an amazing affect on people, which is what makes service animals so special. I think she found her therapy cat. "

I think I agree. I won't say that the cat made everything happen. We've worked exhaustively with Kit over the last year to help her communicate, and calm her body, and feed her mind. But I've never seen her progress so fast, especially with so many changes happening and new people entering her comfort zone and asking her to engage with them. I think the cat has given her a great focus, and motivation. She wants to talk about him, to him, and near him. She introduces him to anyone that comes over, where before she would have run away, much less talk to them! And that is truly awesome.

We are so happy to hear her literally tripping over her own words because she has so many she wants to say!

It is a blessing that is beyond words.

It's more like a purr...