the story of the happy turtle…

We’ve all heard the story of the turtle and the hare. The hare is very confident of winning, so it stops during the race and falls asleep. The turtle continues to move very slowly but without stopping and finally it wins the race. The moral lesson of the story is that you can be more successful by doing things slowly and steadily than by acting quickly and carelessly.

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In the case of my happy turtle (aka Peter), it isn’t a race, it is just a way of life. Having, myself, lived life more like the hare, I have to keep learning from my little turtle. Lessons that are not always easy, but necessary.

My happy turtle is slow, even by turtle standards. Peter is taking the slow and joyful path through life. A path slower than most of his peers with Down syndrome. A path he enjoys. I don’t know a kid that can laugh and smile as much he does in a single day, let alone day after day. Peace and love my friends, peace and love!

But as happy turtle’s mom, learning the lessons is hard. While I am a task oriented with some degree of analytical thinking and enjoy the ability discuss complex topics, I have found that when it comes to Peter I am first mama bear, second caregiver. This means that when given information regarding Peter, I react first emotionally and then mentally. This has been true at every appointment, every school meeting, every therapist evaluation, every clinic visit, and so on. This week was no exception, and in the area that hurts the most. Speech.

Yes, most individuals with Down syndrome have some degree of speech delay and/or issues with intelligibility of speech. However, Peter’s speech issues are broader and deeper than most. A doctor once broke it down as 10% of kids with Down syndrome have speech disorder #1, and 10% of those have speech disorder #2, and then less than 10% of those have speech disorder #3, and so on. Peter tips the scales with at least 4 and maybe growing. Following the percentage logic, Peter truly is one in a million!

After three weeks of re-assessment, Peter demonstrates a motor planning disorder, a motor speech disorder, a phonological processing disorder, immature language skills, limited receptive language skills, and very limited expressive language skills. The test used was a pre-school test because his speech is so far behind that a chronological aged test would have been a waste of time. At nearly 9 years old, Peter actually “failed” pre-school language test, and falls in the 0-2 year old range for speech.

Cue a broken heart.

Here is where the mama bear vs. caregiver comes in. My caregiver mind already knew all of this, continues to work with therapists to best expand Peter’s speech opportunities, celebrates the successes, and focuses on potential. My mama mode reacts with a broken heart, and quiet tears alone in the safety of my van. Sometimes I transition rapidly from emotion to brain, but other times I need space and time to grieve. Space and time to grieve the loss, digest the situation again, and allow myself to face my own fears about what this means to Peter’s life.

Why does it hurt so much? Maybe too many younger years taking magazine quizzes with friends so that we could identify what bucket we fell into. Some crazy need to “know who we are” and to “find ourselves” is now coming back to bite me in the rear. Forget that, it is not biting me in the rear, it is stomping on my heart over and over again.

On one hand I want to know. I can’t live life on an “as need to know” basis. I want it all! Give me all the data, all the info, all the buckets. More the more better. Let me put the pieces together, create a big picture, and solution my way through the maze to a happy end. The project manager in me must find a solution.

My happy turtle is teaching me that I can’t brain my way through the hard parts. That sometimes all the pieces don’t come together to form a big picture. That sometimes there just isn’t a big picture, but a series of smaller pictures that may or may not tell the same story. He is teaching me, over and over again, that sometimes there just isn’t a solution. Sometimes all the quizzes put us into buckets we don’t like, our only choice is how we react to being in these buckets.

I don’t know that Peter has reached the cognitive level to understand that he is different and struggles in ways that those around him don’t, or if he has realized that and just doesn’t care because the good stuff is just way too good to be detracted from by the struggles. Either way, he choses to wake up every day and love his life, to love those around him, to embrace the excitement of life – even with the mundane daily tasks. How can one truly celebrate the school bus coming, every day, as if it were the first day it ever showed up? The bus has come every school day for three years…..yet the excitement is still there every morning. “Wo-hoooo! I get to ride the bus today!!” Every morning he turns to hug me goodbye and say “I la-la-la you” (Peter speak for “I love you”). And when my mama heart bursts with joy, my arms want to hug for just a bit longer, and my “I love you” back becomes “I love you too, I love you sooooo much! Oh my goodness Peter, I just love you soooooo much!!” Then I get it. At that moment I get a small glimpse of the beauty in which Peter sees life in every moment. It doesn’t matter that my head knows the bus will come again tomorrow, and I get to say goodbye again. My mama heart lives that moment as it if were the first and last time, and I want to hold on to that love and joy.

All this comes back to the words of wisdom from a nurse when Peter was a mere tiny little newborn with more tubes and monitors that I thought a tiny body could handle. As I lamented that in his few weeks of life Peter had already gone through so much, and it seemed so unfair, she responded with, “This isn’t hard on Peter, this is only hard on you, he knows no life different than the one he is living and he is happy.”

Some of us mamas of kiddos with special needs feel the pressure to be strong, pulled together, and emphasize the joy our kids bring us. Lest we be judged as unhappy, unable to handle it, or an example of why life is better without kids with special needs. The reality is that having a kiddo with special needs is in many ways no different than being a mama to a typical kid – there are ups and downs, joys and frustrations, mistakes and moments of grandeur. There is life. Simply put – there is life. Gloriously messy, and uniquely ours.

So yes, right now I grieve for what I believe Peter has lost – again. I face my darkest fears of what this might mean in his life. I let the tears fall. But when the bus comes back this afternoon, and he jumps off the top step and into my arms, I must let my heart be in that moment. That moment when he jumps at me like it is the first and last time he will do that, and with full confidence that I will catch him. That moment of joy at the sense of flying. That moment where he is simply happy to see me, will chase the bus up the road to the next mailbox, and then saunter back down to our driveway assured that all is well in this world. Why? Because sometimes getting to experience the same joys each day isn’t boring, it is reassuring that no matter the struggles, we know what joys await us tomorrow.

xoxo

Catherine

….from the blur of ordinary comes extraordinary….

Where did summer go? This was my first summer off since I was in school. Yeah, that was a long time ago! I know I felt so relaxed, I enjoyed the weather, I actually have tan lines (the best ones on my feet – but that counts!). I had big ideas – most seem to have fallen to the “One-Day-Some-Day” list. It really did feel like it slipped right by in a blur.

In that blur, some things stand out. Alexandra got her own place, and moved out, to get ready to tackle college again. Michael got his first job as a host, and looks so spiffy in all black with a fun tie. Jack wound down the intensity and just chilled out….he found a new appreciation for Latin, and went into this school year a different young man. Tommy has now read every Calvin and Hobbes book twelve times. Peter went to summer day camp – on his own – and loved it! Figuring out that certain things only happen on a given day of the week has been the impetus he needed to work on “days”. Going to the gym on Friday is anticipated with much joy, and has taught him that he can’t move the days of the week around no matter how hard he tries. Gretchen became a fish. While the other kiddos in her swim class refused to put their heads under water, G found pleasure in making it to the bottom of the pool and then slowly floating up. Yes, she looks like a corpse. And better yet, Peter does the same thing. I don’t know what people think when I am dazing at two face-down floating bodies in the little kids pool.

Life is more fun with goggles?!

Life is more fun with goggles?!

Yep.....into 1ft 6in of water.....stressed me out every time but the "don't jump" wasn't getting through.....

Yep…..into 1ft 6in of water…..stressed me out every time but the “don’t jump” wasn’t getting through…..

So handsome!

So handsome!

Many of the extraordinary activities never came to fruition, but the sum of the ordinary events made this summer extraordinary. And I experienced the season I’ve heard of so often, but didn’t get to witness in my basement office with no windows. Yes, Catherine, there is a summer!

Relaxing in Pagosa Springs.

Relaxing in Pagosa Springs.

Enjoying shakes and malts in Pagosa Springs CO

Enjoying shakes and malts in Pagosa Springs CO

....getting in more s'mores during the last days of summer....

….getting in more s’mores during the last days of summer….

The school year is bringing on a new normal for us. Alexandra is started back up in college, with a long term plan to become a nurse. She is thinking seriously about pediatric oncology, and I think she would be an amazing gift to the kids and families that must go down that path. We know from experience that nurses are THE BOMB – they make the unbearable bearable, and are capable of so much compassion. They inspire me!

....not only did she get her own place, but she went dark with the do too!

….not only did she get her own place, but she went dark with the do too!

Michael is now a Senior in HS. He has received one college offer, and we are expecting two more in the upcoming weeks. No top choice for schools yet, so much more to come there. Jack is a 7th grader now, and gets driven to school by his big brother. May not be a big deal to him, but it is a monumental event in my book. Hmmm….maybe Michael needs to stay in town so he can continue his duty to family and school?!

Peter started 2nd grade. His enthusiasm for school is still strong, and he can run down the driveway shouting “da bus, da bus” in a way that invokes confusing flash backs to “Fantasy Island”. Bless you, young folks, that have no clue what I am referencing. My traditionally angelic child, has let his little devil come out at school a few times. That sweet spot under the play set that no normal sized adult can reach, is a great place to sit and laugh at the world. Lucky for Peter, he has some peers in his 2nd grade class that have his back, and coaxed him out before there was big trouble. He is still really struggling with handwriting, and he is being given opportunity to practice some keyboarding, as we may need to move in that direction sooner rather than later. Peter has however mastered lowering people’s expectations of him. Sigh. He can count well past 10 when necessary, but has figured out that if he counts 1-2-3-5, you will stop and reinforce 1 through 5 over and over again to ensure he nails down that 4. See what he just did? Low cognitive skills…..I think NOT!

Life is better with the cream on top!

Life is better with the cream on top!

The biggest change has been for Tommy and Gretchen, that are homeschooling this year. Monday – Thursday they are with me at home (or where ever we decide to take the class that day). On Fridays they participate in a STEM program offered by our school district. We are still finding our rhythm, but so far I’m loving it! Tommy struggled with losing the opportunity to be with his friends on a daily basis, but has found the upsides of homeschooling. He must whisper them to Jack. First Jack said, “You need to stop doing so many fun things with Tommy, it is hard for those of us that have to go to school.” Followed by, “I’ve been thinking, I believe it would be better for me if you homeschooled me too.” Tommy’s Math was beyond the curriculum we have, so we have moved him up a grade level there. However, his punctuation needs working and I am so not the right person – I enjoy using punctuation for my own selfish purpose void of rules! Gretchen is working on reading and telling time, but her favorite event is the weekly playdate she has had with our neighbor’s grandson. She loves the crafts! Clearly I need to spend more time on Pinterest……. it intimidates the heck out of me!

Learning at home....and loving it!

Learning at home….and loving it!

Teaching PSL time!

Teaching PSL time!

Fall is in the air. My 5:30am emergency run to the grocery store last week actually felt more like winter! I have a love-hate relationship with this time of the year. I love the crisp mornings and colorful leaves. I love snuggling up in the evening and feeling the end of each day. However, every year for as many years back that I can remember, something big and hard, has happened during this time of the year. Peter’s multiple diagnosis/illnesses and his time on the ventilator, my mom’s death, my father-in-laws death, and so much more. I am at the time of the year when I brace myself for the other shoe to drop. And I pray there are no more shoes to drop!

Someone asked me recently about how I got through all that we have with Peter. I think I disappointed. The truth is, there is nothing amazing that I’ve got figured out and my prayer life leaves a lot to be desired. I am far from the poster child of any way to handle challenges. But what I did share is that from the moment of Peter’s pre-natal diagnosis, I have held on to the belief that we all have a God given purpose, a higher purpose. That purpose may be met in a day, a week, a year, or a century – that is not up to me to understand or decide. Believing in that purpose, that greater good, is what makes the journey possible. I have no magical answer, but what I did add was that every day I work to make sure my faith is bigger than my fear. Just that simple, I keep my faith bigger than my fear. I think “believe the purpose is bigger than the shoe” would have made me sound crazier than I already sound!

So here we are, on the cusp of a new season. Time to look back and reflect. Our ordinary lives have given us many extraordinary memories. The truth is that we have much to be thankful for as a family. We have SO much to be thankful for as a family! It is so easy to get wrapped up in the day to day, to believe we do not have enough. Or, more likely, to believe that we are not enough. The endless spiral that so easily distracts us from our reality. Regardless of the challenges that lay before us, the truth is that we have so much more than we ever need. Knowing that, may we all reflect on the dignity of every human life. May we find ways to protect and support those robbed of their human dignity in any and all stages of life. May we put aside color, religion, gender, political affiliation, and all other ways of sub-segmenting humanity, and truly respect all lives. All lives matter.

Happy Pumpkin Spice Latte season to you all!

xoxo
Catherine

…just too busy…

Today I turn 45…..yikes! I get for some of you this sounds old, for some this feels young, and for others it might be right around where you are too.  To me it feels like such a big number…..at the wise old age of 7, I had a plan for what life should look like – by 15 I should know exactly what I am doing with my life and a solid plan for execution, by 22 I better have my act together with a good job, great husband and maybe kids. And well, I better have knocked off everything from my life-to-do list by 40 because it was all downhill after that. I was at the time in my life when my parents’ friends were turning 40 and there were a lot of “Over the Hill” themed parties, clearly I was impressionable.

Well, things on this wild journey did not go as planned! At 15 I was convinced I wanted to be a banker or international business woman racing across the world. By 22 I figured out that I was really bored by accounting, and rather do something else with my life. I was in an entry level job, a great boyfriend (now my husband) and no kids. When I turned 40 I had a job I loved, a great husband and 6 beautiful kids – including one just a few months old that reminded me I better not be over the hill because I had a lot I still wanted to do! Five years later I reflect on just how much has happened in that window of time – the kids grew up, Peter beat cancer (just barely), we lost my mother and John’s father to cancer, I worked hard – really hard – and we are five years wiser, seasoned, and slightly weathered.

Pagosa Springs - "Just Too Busy"

Pagosa Springs – “Just Too Busy”

A few weeks back I was on Spring Break in Pagosa Springs with 5 of the kiddos. I posted a picture of my view from the condo’s deck – overlooking the water with majestic mountains on the horizon and clear blue skies. My mug of hot chocolate and a good book as my companions. The kids were too busy loving cable TV which we don’t have at home. A friend replied to my FaceBook post asking me what I was reading – I replied with “Just Too Busy” by Joanne Kraft. She looked it up, and replied with “…well, I am not sure you can take a sabbatical year but you can always do mini version of that….”. I chuckled. Just a few days earlier, as John and I drove to our local Starbucks (I know…not a surprise), I just looked over at him and said “I just can’t do this anymore….I am exhausted, I go to bed at night accumulating more and more regrets of time lost where I should be doing more with the kids…I can’t keep trying to do it all…..you and the kids are the most important thing to me, yet you get the least and worst part of me at the end of the day”. Following a quizzical look I blurted out “I’m quitting! I’m done, I need a break, I want to be a better mom and wife…..I don’t know what it is going to take but I need to do this”.  Silence. Then in my charming way said “Dave Ramsey said that if you need to work three jobs to support us, you can do that – I need to be home….”. When in doubt – quote Dave! Silence. And then all that came out was “OK”.  Not quite what I was expecting from my highly analytical thinker that often conflicts with my quick decision making by instinct and gut sense.

So there you go – last night I turned in my written resignation. One of the easiest yet hardest things I have done. I love my job. I love my co-workers. Many of them were the long distance, reliable, cheerleading team that sent me words of encouragement during the darkest times of Peter’s cancer treatment. And sometimes they were the non-sugarcoated and honest words that needed to be said –  “Remember today that Peter needs you to stay strong”,    “…this is not about you, this is about Peter, and you need to fight for him today…”. Co-workers that became friends and grew into ‘brothers and sisters’  that called it like they saw it and still embraced me in those dark moments. Those dark moments when I needed to scream at endless barrage of Peter’s medical struggles, my frustration when I felt there was nothing I could do to fix things, and my anxious moments when I feared I was not strong enough to cope with losing him. I have been so blessed to have a job that challenged me while at the same time generously providing for my family and empowering me to make the decisions that were best for them at the time. And it was with that empowerment that I have made this change. I have worked in some capacity for 30 of the last 32 years – flash back to the 80’s and I started off working at a video rental club at 13 – yeah, this is a crazy change into unchartered territory!

Peter's angel...Michelle Wyeno

Peter’s angel…Michelle Wyeno

Last month we lost Peter’s Special Education teacher to cancer. Not only was it a hard loss for us who relied on her wisdom, caring, and encouragement – but it is a huge loss for this world. Michelle was truly an angel that slipped down from heaven to bring grace to those around her. Michelle’s funeral was amazing – and it was the impetus to stop and assess my life. I was, after all, over the hill and rapidly sliding to FORTY-FIVE!  To those closest to me, I have said that the last ten years have been hard, and I am tired. Life has peaks and valleys, but I feel like we’ve been on a never ending rollercoaster, and I want off – give me ”It’s a Small World” gentle ride for a while! This last school year has, in all honesty, been brutal. Stressful, heartbreaking, hurtful, yet a time of needing to fight for our family day in and day out in ways I never thought we would ever have to do. I’m tired, and our family needs a change. Time to course correct.

Peter prepped for open heart surgery at 7 weeks, after 5 weeks in the NICU and a few close calls.

Peter prepped for open heart surgery at 7 weeks, after 5 weeks in the NICU and a few close calls.

Most of my blog entries, when I was actually doing them, were about the ups and downs of Peter’s medical journey. But I want to be sure to state that all my kids are wonderful and amazing and complex and interesting and fun …..I don’t want anyone to think I love and admire one more than another. They all teach me different things and are unique. But let’s face it, Peter has been the one to carry the brunt of life challenges, and we have been in support roles. But, through it all, he led us with a big smile, bear hugs, and lots of ‘thank you’. Thank you?! Yep – little man is grateful for so much every day!  “Hey lady – thank you for accessing my port right the first time” – fist bump!   Or “You checked my genitals one more time to make sure they are still healthy – thank you for the gentle squeeze doc!” – double fist bump on that!   “Dude – that flashlight in my face at 1am tells me you are here to party with me in the Peds Unit – thank you for keeping it fun!” – I’d fist bump if you hadn’t woken me from slumber, but my coordination lacks right now.   “Yo man – thank you for giving me a ride home on the big yellow school bus yet again!” – salute you from my driveway!

"I make bald beautiful!"

“I make bald beautiful!”

So here is what I figured out on my self-imposed life reassessment period – Peter has his sh*t pulled together no matter what the experts say (excuse my French to those that figured out the * is really an “I”). The rest of us whine about being tired and stressed (yes, even my youngest ones have uttered those words and I know they get it from me – “I am soooo streeeesssed ooooout!!”). The rest of us self-pity when we hit a rough patch, or feel that we have been treated unfairly when cosmically all should balance in our favor. I am still waiting for my cosmic reward for birthing 6 kids, and all the extra weight should ‘poof’ disappear.  I’m not saying Peter doesn’t get totally ticked off – he does. When his sister convinces him to let her hold his iPad, only to take over what is being watched/played or better yet outrun him to where he has no say at all on the iPad – little man is really ticked off. Cut the man some slack – he is human…..super human, but human none the less.

"Dude - do I rock these hospital gowns or what?!"

“Dude – do I rock these hospital gowns or what?!”

What is Peter’s secret sauce to life? He has his priorities in the right place. At work we call those super important things “blue chips” – poker players won’t have the “huh?!” I had the first time I heard that term. Guess what – I think I have 297 blue chips to balance every day. Yep…that is me ….no white chips, no red chips, my plate of life is full of blue chips. God may not give you more than you can handle, but someone else is slipping their blue chips onto my plate! A couple of years ago I tried to do a mini-sabbatical. I stepped down from almost all my volunteer/extra-curricular activities. It helped, but it was not enough. I still had too many “blue chips” – I didn’t step far enough away to see how much I piled on my plate.  Peter has three blue chips – to show gratitude, to love and forgive fully, and to enjoy the ride. Smile at the world, and it will smile back – right? Don’t tell Peter if you disagree – it is working for him. At some heart and soul level, Peter knows what the rest of take a lifetime to learn – when we start in a place of love and gratitude, how can you not live by what truly matters?

At the end of our lives, we will not regret time spent with those we love.

At the end of our lives, we will not regret time spent with those we love.

If tomorrow were my last day on earth, I would have so much to be thankful for….but I would want to change what I’ve been doing, and live my last day with those I love the most. I don’t know when my last day is – but it is time for me to take myself down to three blue chips, catch my breath, and create more of those crazy memories I get to laugh about on my final day.

I'm sorry for the drop in stock price....mea culpa!

I’m sorry for the drop in stock price….mea culpa!

This is not going to be easy. There will be good days and bad days. Some may want to worry about the effect on the economy of my significantly reduced Starbucks expenditure. I am thankful, so thankful, to have the opportunity now to focus on my family.  I vacillated on whether to go here next – but I have decided to…..to all you mama’s out there – this is just my story and my place in the world today. This is not about leaning in vs. opting out. This is not about staying at home or working. I’ve been cruelly judged – and it hurts – and I don’t want to do the same to you. For many years my heart yearned to be home, but I wasn’t. My soul trusted that I was where I needed to be. Trust that where ever you are now, this is where you are meant to be, and I will meet you right there – no judgment.

The blue chip in life....

My blue chip.

A friend once told me that people come into our life for a reason, a season or a lifetime. I think too that where we are is for a reason, a season, or a lifetime. Only God truly knows. I don’t know what decisions we will be making a year from now, but I am thankful that today I get to take this huge leap, and I am so looking forward to all the new and crazy memories our family will be making.  More to come!

xoxo

Catherine

Worry-Mommy Update

Thank you to all for your words – words of comfort, words of friendship, words of wisdom, and words of advice. I appreciate them all. This will be a short update as I feel compelled to answer but at the same time, work calls tomorrow, and I stayed up later than planned building lego towers with Peter. Amazing how some one-on-one time with out distractions can remind you just how in love you are with someone!

…and when I could stretch no more, I knocked it down and started again….

My worry, as does that of many of the moms who reached out to me, comes from a place of caring – a fine line separates them! Because we care, we worry we are not doing enough. Six years ago someone told me I was a bad mother for working. Not a day goes by that I don’t think of those words and they haunt me. I know some of you have talked me through this too many times – but the hurt is still there. So when I love my family with the intensity that I do, and I worry that I am not giving them enough of me, words such as those sting extra hard. At the end of the day I am like everyone else – I want to reach the end of my life and feel like I was a good person who did the right things. What is a good person? Easier said than truly defined as that is where I often hiccup myself. I trust that God will fill me with the grace that I need if I open myself up to him and as he has during many of the difficult parts of our journey with Peter, but I struggle with the no worrying. Worry comes from caring, and caring is what I am called to do. I am thankful every time Peter pulls through a health crisis, but yes, I worry every time he gets sick again. We have spent months in the hospital since he was born – it is the caring and the worry that motivate me into advocating and celebrating. Today I worry about things never imagined, and yesterdays I worried about things that are nothing to me today. I hope to continue to grow, learn, and be more purposeful in every way.
In the event it has not been clear since I started blogging –  I love my son beyond belief!!  I love him with an intensity I did not know possible. I love all my children, but Peter is there is a difference – a vulnerability and openness that the world can’t rob him of as he grows, but which also makes him an easy target. Browsing the internet alone shares disturbing images of disrespect towards individuals with Down syndrome in the name of humor. So yes, I know my son is disabled and looks different, and that alone brings attention to him. I also know that for every person who judges negatively there are others who embrace him with a smile. I am not embarrassed by Peter, nor do I try to hide and pretend he is not disabled. I am proud of Peter and wish everyone was as blessed as I feel with him in my life.  I would have talked to the girl had the time presented itself – I was looking for the right words. Peter had different plans and for anyone with a “runner” in the family, you know when he says he is leaving you catch up or you find him in the road. Which Peter has already done this week! He said he wanted a walk, I said I needed to go potty first, a few minutes later he had already disabled the 3 locks on the back door and had made it to the street behind us. So when Peter says we are done, I follow!
I have talked to many kids in the right setting about Peter, answered questions about his eyes, his floppy ear, why he walks funny, and so on. I have had to explain why he doesn’t learn as fast when kids playing with him get frustrated. I actually prefer to be asked than to be avoided. I have presented on Down syndrome and people first language at two of my kids’ schools. I have answered questions from adults and grinned through some hurtful comments to find a learning opportunity. Comments like “I guess you were too old to have kids and got stuck with a retard”. Yes, they happen. And yes, I have done my best to educate – even when the conversation starts from a place of judgement. This time, time did not allow for that. And I hope if nothing else she knows that in a parents’ eyes their children are beautiful and will remember that at a meaningful time for her.
There was concern I had judged the girl. I’d like to apologize because at some level I did. For the record though, I don’t believe any pretty girl is a Queen Bee – I like to think I have two beautiful girls and know many others that are gorgeous inside and out who aren’t Queen Bees or wanna-be’s. I don’t know this girl but I have been around girls long enough to discern some behaviors, tones and attitudes – and have comforted my beautiful daughter from words of judgement and not curiosity.  I believe our children can learn, but adults have the responsibility to model the right behavior. And this is a do as I say, and not as I do moment! When my daughter exclaims that speeding is a rush, or my son yells out from the back of the car “HELLO! GREEN MEANS GO!!” I know I have some work to do on the behavior I model. We all do! None of us are perfect.
Off to give Peter another breathing treatment and hope for some sleep tonight – he gave me one good night of solid sleep and has since been up every night uncomfortable. I think he rolls over onto his accessed port and it pokes him. He is naturally a tummy sleeper with the rear up in the air – so trying to get him to sleep on his side is not easy!
Good night friends!
xoxo
Catherine

Confessions of a Worry-Mom

I left McDonald’s, I got in the car, and I cried…..

The emotions have been mounting. For so many months they are there ….right on the edge….poke their head out and just as fast hide again because it never feels like there is enough time or energy or strength to deal with them all coming out.

A week ago Peter was in the hospital, again. The times are a mixed blessing of being forced to slow down and just be with Peter, and a stark reminder that he is fragile – very fragile. Sometimes when he sleeps I just stare at him. I am thankful for each breath he takes. I think of what we need to do. I think of what we haven’t done. I think of what I wish we could do. Then I stare at Peter again and I am just thankful.

John and the kids left for Montana. Peter and I are at home. I worry about Peter getting sick. I check his breathing in the middle of the night. I worry when he goes for long stretches of not wanting to eat. I worry about G forgetting who I am in the days they are gone. I worry about their safety on the road. I worry about Tommy and Jack and Michael and Alexandra. I worry about John. Yes – I worry! And through it all I often worry that I am just not doing enough – or at least enough of the right thing – and I feel alone. I have heard it before – give it up and trust – I can’t fully and fairly and unemotionally answer that today.

Last week a FB friend posted that her 7yo daughter tested as a 2yo in certain areas. She declared that she felt like she had let her daughter down. My instinct was to write words of comfort – but I stopped myself. At some level it felt hollow – a “do as I say, and not as I do” moment. I worry about letting down all my kids every day! Who am I to deny her those feelings when I feel them every day?  I wish I could take them away. I know at many levels I am not alone. We are not alone. When Alexandra was a baby I muttered something like “I can’t wait until she is a little older and I don’t worry as much”. My mother chuckled one of those full of wisdom chuckles. Simply told me the worrying never goes away – even when your child has left home you will worry. It is what mothers do.

With Peter I worry extra. I worry about what I should teach him. I worry about what he will be able to learn. I worry about his health – a lot. I worry about his future. Sometimes he stands a certain way, says a certain word, or makes a certain movement and I get a glimpse of what he may be one day – and I worry I am not doing enough by any stretch of the imagination to allow him to make his dreams come true. But through all the worry I see Peter as this gorgeous little boy who knows just when to give me a hug.

Inclusion:  the act of including or the state of being included. For parents of children with special needs inclusion is a big word filled with many rules and guidelines. It tells us that by law our children should receive the least restrictive education. Our children can be included. Today was a lesson for me on inclusion – a tough lesson. All the rules and guidelines and laws in the world will not teach including. There is inclusion, and there is including.

Many years ago children like Peter were locked away and forgotten. In parts of our world they still are, sadly. Here, today, children like Peter come home, are loved, are educated, have opportunities. They have “inclusion”. I see Peter through my eyes and I hear about Peter through the words of those close to him who care for him – family, friends, nurses, doctors, therapists, co-workers. I feel like Peter is included. I had a false sense of security that others see Peter as I do.

Peter is on a diet again. I can’t think of the last time I have gone to McDonalds but for a late night chocolate chip cookie run. I decided to give it a try today – maybe fries, chicken nuggets and milkshake would get some calories into Peter and fuel his eating. As I walked into the play area with Peter I saw other parents stare. I smiled. No smiles back. Some were chatting as they walked around tracking their kids. I walked around. No words. No smiles. A few glances but mostly the avoid-eye-contact movement. No success with the eating but Peter bravely took off into the play structure. Not always graceful but I was proud of him for going in and out and exploring – way to go Peter!

Then came the Queen Bee – you know who I am talking about. The young pretty girl who will not grow up to be a wanna-be. She spoke to me a couple of times with words of wisdom about the play set and kids. Then the words “Peter looks…hmmm….funny”. The awkward moment of finding a word other than “weird”. “Really?” I said, “I think he is very handsome! He does have that bruise on the side of his nose – but I still think he is very good looking!” Peter looked at me and I saw this short, stocky, awkward kid with one eye that likes to roll towards his nose and a floppy ear smile up at me. She gave me that look that said ‘You are an adult and I have to tell you!’, then she said “He looks funny, there is something wrong with him and his eyes”. Sigh. As I was mustering some words of wisdom, Peter looked at me again and said “Done!” and started to walk out.

We left McDonalds, we got in the car, I cried…….for just a few seconds, but it hurt!

Inclusion – an act or a state? I would argue today that an act or a state is not complete with out the true intent. I don’t fault the girl for noticing that Peter is different. I don’t blame the parents for being uncomfortable – I am sure before Peter I was one of them, uncertain on what to say or do for fear of being offensive. But now I see it through the eyes of Peter’s mom. I don’t know what he thinks when he waves at people and gets ignored, I don’t know how he feels when he tries to include a child in a game and they say NO and push him away. I don’t know. But I know how I feel, and it hurts.

I am used to seeing Peter surrounded by those who know him at some level and who care for him. Inclusion starts at home. Peter is surrounded by parents, siblings, family and friends who include him. Today I saw Peter through the eyes of children – like those in his class this Fall – who may avoid him. Through the eyes of parents – like those of his future classmates – who rather not make eye contact. All my worries from the years before the cancer are back. Will he make friends? Will he get invited to birthday parties? Will he have sleep overs with a best friends? Will he be included as much as he tries to embrace those around him?

Inclusion started at home when families embraced their children with special needs and brought them home. Inclusion spread when families advocated for their children and law makers created rules. Inclusion grew as teachers learned what it means to teach children with different abilities. Today I learned that to truly include someone – that act of including – is as much action as it is attitude. We’ve come along way from buses with seating areas based on color. Many get on buses today and don’t think about the color of those around them. I pray that in my lifetime we go from the action of inclusion to the attitude of inclusion.

So what was next? I drove around feeling very lonely and not sure of who to call as I just needed a shoulder to lean on. Everyone has issues and it felt a bit like a pity party. Instead I took Peter to get a much needed haircut and then to the park he has been pointing at during our evening walks. Yes, he is awkward, looks different, somewhat uncoordinated but his a killer smile and great hugs. As he “ran” towards the play area there was a family sitting there. They smiled. And when Peter stopped long enough to look over his shoulder to say “Mama, come on!” they smiled even bigger.

Yes Peter, as long as you invite me to come along, I will! Thank you for holding my hand when I need guidance, giving me a hug when I feel lonely, including me in your adventures!

Mama says I look like TinTin now…..I’m just happy the iPad didn’t go to Montana!

xoxo

Catherine

Something new, something used, something special….

How many of you have read the chain e-mails that go around telling of stories of people who were “saving” things for just the right time – and that time never came before they passed? I have received many of them – it was an ah-ha moment when I read them, but not sure I ever really changed my ways. I said I would. I thought about what I might be saving – always landed on the idea that I was doing just fine, and kept going on my merry way.

Peter has tested that reality from the moment he was born! We never knew if we would have another day. But, when it seemed we overcame all thrown at us, we fell back into our “normal” routine.

Many years ago my family gave me a beautiful set of dishes. Each birthday and Christmas they added to the set. A thick, heavy set of white ceramic dishes with blue and yellow flowers. I was ready to change my kitchen around these dishes – I loved them so much! I cherished them and kept them safe – bringing them out for only the “really” special occasions. Instead of enjoying the them, I fretted about a little one dropping and breaking a cherished dish. And we’ve had a steady string of little ones. I would not have anything to pass down if the dishes were all broken! So safely they stayed put in the buffet.

Then came the Leukemia and weeks of Peter on the ventilator. I pulled out my “nice dishes”. Every Sunday we use them – our reserved “family day” – when we enjoy an extra nice meal together. I was throwing caution to the wind and enjoying right?! Well, yesterday G challenged me to think even further outside of my comfort zone.

Those who have been following our CarePages for some time remember the shoe shopping experience with G where the only thing she would even try on were the bright pink party shoes with the bows. “OK G, we can make these your church shoes”. Yeah – right! G has a mind of her own. Like Jack several years back and the cowboy boots he even wore into the bath tub – G wore the shoes all the time! ALL THE TIME! Even after baths and putting on clean PJ’s, the dirty pink shoes went back on. Yesterday she played in the sand and her shoes filled up. As I took them off to brush away the sand stuck between her toes, I stared at her shoes.

Something new….became something used – very used! …..because they are something special. G didn’t try to extend the life of her shoes by wearing them only on Sundays. She didn’t keep them safely away from others. She loved them, enjoyed them, and used them every day. As they become scuffed, the bow started to come lose, and they were no longer shiny new shoes – she loved them even more – they were hers and she saw the beauty in the shoes that were part of so many fun memories. Like her dirty but well loved doll, these shoes enjoyed a full life – albeit likely short – they have experienced life to the fullest!

We never know how long or short life will be – and sometimes we can be like Peter and defy the odds while confounding those around us. If you are anything like me – you save, your protect, you keep your eye on the future to define the purpose of today. I won’t stop being me – I know I will always have my eye on my goals to define the purpose of today…..but I want today to be full of something special being really enjoyed before it is too late.

I talked to a counselor last week who shared with me her zip lining experience. Petrified to take the leap, someone told her to stare at the platform she was to land on. As she zipped through the air, the platform became larger and larger until her feet were firmly planted on it. “I had a goal – and I made it!!” she thought to herself. Then as those behind her joined the platform they excitedly talked about the mountain range on one side, the flock of birds in the sky, the size of the trees below them, the view of the water to the other side. She had a goal, she made it, but she didn’t enjoy the journey getting there because she was too scared.

She was scared of the journey, I was scared of “using up” that something special – so in our own ways we didn’t enjoy what we were blessed with. At the end of my life – when ever that may be – I want lots of “worn, scuffed, pink party shoes” that hold memories of fun had on the journey to the other side.

G’s well loved, well worn, pink party shoes full of wonderful memories.

What “something special” are you saving for that right moment? is that moment today?

xoxoxo

catherine

the perfect mom – i saw her!

Many years ago I read one of my favorite books – The Perfect World Inside My Minivan, by Marybeth Hicks. It is a compilation of her articles. With her I laughed, I cried, and I laughed again – I no longer felt quite as alone in the world of motherly self-doubt and distorted image of other’s perfection. I remember sitting in my bed laughing, crying and choking as I read to John her chapter titled “Imagining Life as the Worlds Best Mom” – as Marybeth shares her experience “…crept slowly towards her back bumper…..I was (sort of) in the presence of greatness. Its red letters were outlined in gold: ‘World’s Best Mom’. There she was. I couldn’t believe it. The world’s best mom was driving the van right in front of me. She had just dropped her children at school, and now she must be headed home for a day of world-class motherhood.”  She goes on to speculate about the world’s best mom – orderly home, laundry caught up, heart warming errands, organized and productive days.

Well, then it happened to me. It was an early morning football game for Jack. Everyone else warmly tucked in bed, we headed out into the chilly spring morning and headed down to the park. I wasn’t even in the minivan! At first we talked and laughed, and then got lost in thought – mine went something like “can’t believe I have to go on a business trip on a Sunday….ugh…..better get everything done today….yep – all today….seriously – another trip! focus Catherine!! don’t forget anything before you can put it in your phone….menu, grocery shopping, cleaning, laundry – lots of laundry, present for party, party invitations…..seriously – a trip on a Sunday! ….FOCUS…..when should we go to church? FOCUS! …..menu, grocery, shopping, cleaning, laundry, school folders, laundry again, packing, e-mails, shucks! forgot about the newsletter to write – ugh! ….” and then I did see her! She was there in front of me in a minivan! Just like I had read she would be. Her hair was perfectly cut, colored and styled. Her smile big and her face glowed. She turned up the music a little as she broke out in dance and song – inviting the kids in the car to join. Their heads bopped and she smiled big. There she was – the perfect mom! – beautiful, smiling and having fun on this chilly early Saturday morning. WOW! And I bet her van was perfectly orderly and clean too! I looked over at Jack as he stared out the window lost in thought. Should I apologize for not being her? Should I suggest he jump out of the car and run to her van while the light was still red? Oh goodness! I bet her son is on Jack’s team – and probably a star quarterback and she has the perfect home-made snacks to share. There she was – shining, glowing, smiling – the perfect mom so close and I did not know what to do!

I tailed her to the park……by default, and not intention! Yes her son was on the team. Having not left the house in time to get my morning addiction of Starbucks – I dropped Jack off for warm up and nipped over. This of all mornings I was going to need my liquid gold to keep me going for the next couple of hours. I parked around the corner from Starbucks and jumped out of the car. As I scurried I saw her park across the road. Seriously??!! Do you have to stalk me with your perfection? Two girls with her, she held their hands as they laughed and ran across the road. When was the last time I did that? Hmmm…..back in “Never”? I think I’m usually counting them all before we cross, screaming RUUUUUUUN!!!! as we race across, and then counting them again to make sure no kid was left behind.

Scurrying some more I made it into Starbucks before her. She stood behind me in line as she would kneel down to whisper to the girls gently and kindly eye-to-eye……I do that sometimes! Yep – sometimes….mental note – do it more often! The girls debated what they wanted and turned to her for direction. Then I heard her sweetly say “Oh, I don’t know”. What??!! You don’t know?? You are the perfect mom – you know it all! Then that chattering started as they went back and forth trying to decide what they could or could not have. This mom of little patience and fast decision making was a tad less than impressed. Surely I was just being snarky! I grabbed my drink and hustled to my car. Raced back to the park and paced the field – freezing cold – watching Jack warm up, run around, be goofy and tackle the coach to the ground way too many times.

There she was – sitting on the sidelines in her cute outfit (ugh – if only I could carry that off!), with the girls in matching cute outfits, and all snuggled up in some great looking blankets sipping their drinks and giggling as they watched the boys. I continued to pace in my old jeans, not warm enough sweatshirt and hair in a messy pony tail. She looked over and smiled at me. Me? I looked over my shoulder – maybe a friend? Oh my goodness! The almost perfect mom was smiling at me! After pacing the field a few more times we finally made contact. A hello, how are you, geez it is chilly followed by which is your son. We compared notes and smiled – it felt like we were sizing each other up – sizing each other up? No way! We moms don’t do that right??!!

Lets face it – we were – it happens. We chatted some more and compared those statically significant get-to-know-you’s …..where do you live, how many kids, what school, what do you do? She was nice. Very pleasant. I could cut her some slack for not being decisive in the Starbucks line since after all she was behind me. Then she said it ….the words I don’t ever expect from the perfect mom…..”Wow! You are amazing!” followed by “I don’t know how you do it all plus have six kids and work full time – you are amazing!”. Huh??!! say that again! Then she adds on “I have half the kids and don’t work and I can’t keep up – you really are amazing!”. The almost perfect mom thought I was amazing!

So after the game Jack and I loaded back up in our little cold car. We smiled and laughed and re-played the best plays of the game. I may not have the perfect hair, big smile, or cleanest van in town – but – I have six wonderful kids who love me and that makes me the most blessed mom! On Mother’s Day Jack lovingly said “I think you are the best mom in the world! You are the best mom ever!! As a matter of fact I think you are right up there with [the virgin] Mary as most amazing mom ever ever ever!” ……to which I responded “Oh buddy, that is so sweet – I can only try to be a bit as wonderful as Our Mother”. Michael chimes in with “Well, how hard could it be to raise the perfect son who could do no wrong? I mean – HE WAS JESUS – so I think your job is at least ten times harder….should be six but Jack counts as more!”.

Now when I am out in the car with the kids I do still stare into the distance making my mental to-do lists before I forget….but then I catch myself grateful for the blessed moment with my kids in the car….and sometimes I just turn up the music and with my awkward smile, straggly mom pony-tail and messy car, I break out into song and get the kids dance with me. Who knows what the car behind me is thinking….

Here is to every perfectly imperfect and blessed mom – know that to someone else you are amazing!

catherine …..xoxoxo