and then he turned 7!

Happy Mother’s Day to all the women out there – those with children, those who wish for children, those who “mother” other’s children, those who have lost a child, or welcomed a lost child into their family. Mothers come in so many shapes and sizes – each bestowed the honor in so many different ways – I wish for each of you a happy life! I know Carl Jung was not talking about mothers when he said this, but I think it applies to our lives in many ways.

“…even a happy life cannot be without a measure of darkness, and the word happy would lose its meaning if it were not balanced by sadness. It is far better to take things as they come along with patience and equanimity.” 

I have been blessed to be a mom six times over at this stage in my life. And the above quote fits it beautifully.

This last Friday we celebrated Peter’s birthday! Little Mr. Peter Bear turned 7 years old….and what a ride it has been!

Happy 7th Birthday Peter Bear! - May 9th 2014

Happy 7th Birthday Peter Bear! – May 9th 2014

 

7 years + 7 months ago I found out that the little baby inside me “was not developing normally”. Shortly thereafter we found out he had Down syndrome and cardiac issues.

7 years ago Peter rushed into the world 10 days early – he looked big and healthy like his siblings, but it was not long before he was whisked off to the NICU. He was sicker than we had anticipated.

In the NICU @ Penrose Community - Colorado Springs - May 2007

In the NICU @ Penrose Community – Colorado Springs – May 2007

7 years – 7 days ago I woke to the words “Peter took the turn for the worse last night, we don’t know if he will make it through the day”. He was baptized in the hospital as we prepared for the Flight for Life to Denver – and that day was the first day I got to hold him in my arms – tubes and all!

Peter's baptism before going to Denver - Fr. Steve Parlet - Penrose Community, May 16th 2007 (I felt worse than I look....and that was bad!)

Peter’s baptism before going to Denver – Fr. Steve Parlet – Penrose Community, May 16th 2007
(I felt worse than I look….and that was bad!)

Finally in my arms! I spent hours, days, weeks in that chair thankful to have Peter in my arms! - May 2007 @ Children's Hospital

Finally in my arms! I spent hours, days, weeks in that chair thankful to have Peter in my arms! – May 2007 @ Children’s Hospital

"....let me ponder the meaning of life...." - June 2007 @ Children's Hospital

“….let me ponder the meaning of life….” – June 2007 @ Children’s Hospital

7 years – 7 weeks ago, Peter had open heart surgery. It was sooner than we had anticipated. Peter’s pulmonary pressures were the highest his cardiologist had ever seen in a neonate – he needed his heart repaired to have a fighting chance. As the doctor put it “….otherwise you will spend then next 12-18 months watching your son die in your arms”. As tiny as he was, we gave him a little green mohawk and handed him over to the nurses. I still choke up when I think of the nurse walking away, down the hallway, with Peter in her arms as the doors closed behind her.

Ever felt like a science experiment? - July 2007

Ever felt like a science experiment? – July 2007

Then Peter came home – tubes, tanks and monitors – our master bedroom was converted into a mini hospital room as we were too afraid to have him any more than a few feet away from us.

6 years ago we found out he was a silent aspirator, and had severe lung damage.

5 years ago Peter was down to oxygen at night only – we were so excited!

4 years + 7 weeks ago Peter finally began to walk…….he got up and walked right across the park. It seemed the challenges were behind us and we were excited for what the future would hold.

"I am walking!!" - March 2010

“I am walking!!” – March 2010

3 years + 7 months ago we finally knew why Peter had not been himself – he was diagnosed with Leukemia. Once again we were rushed off to Denver to start treatment and give him a fighting chance. He was gone for over a month before we brought him home. Little did we know how many times we would be in and out of the hospital. Many of them included “We will know in the next 24-48 hours if he will make it or not”. We never said anything – we knew how overwhelming this was to those who loved and supported us – as we were overwhelmed ourselves.

We found out Peter has Leukemia - October 14th, 2010

We found out Peter has Leukemia – October 14th, 2010

2 years + 7 months ago Peter took another serious turn for the worse. He was holding on to his life by a thread – little did we realize just how hard he was fighting to stay alive. Within minutes of arriving to the hospital, he was on a ventilator in the PICU and would be there for another 7+ weeks. This time we did hear “You need to make end of life plans”. He was down to the last treatment option – but holding on despite the odds. His recovery was nothing short of a miracle!

On life support - November 2011

On life support – November 2011

1 year + 7 months ago we found out that my mother – Peter’s Granny – also had cancer. Less than two months later she left us, leaving behind a void in our lives.

Peter & Granny - January 2009

Peter & Granny – January 2009

7 months ago we honored the three year anniversary of his cancer diagnosis. Finally done with chemo, his body was still adjusting to life post-chemo……blood counts up and down, liver counts all over the place, unexpected symptoms that chilled us to the core thinking the cancer was back – but in true Peter form, he pulled through.

7 days ago Peter started off my week with “Mama….Mama…..Mama”. No matter how many times you say “What Peter?” he will keep calling your name until you’ve established satisfactory eye contact and disengaged any potential distractions. This is usually followed by “iPad?” or “Bo?” (for Bo on the Go – his all time favorite show) or “TV?”. Less words, but the requests of a typical 7 year old. I have spent the last seven days on a complete emotional roller coaster. God bless those who have crossed my path with my emotions on overdrive!

The last seven years have been a contradiction in so many ways. The longest seven years, yet each day flies by. The hardest of emotional blows, yet the immense joy that comes from a simple hug. Days of feeling alone in our journey, yet blessed with friends who just find a way to help. Moments where you feel speechless, but thankful for the friend that just listens as you babble for hours about your fears and anxieties. In many ways the last seven years have been the hardest, yet the easiest.

We have learned to never take anything for granted – not a first step, not a first word, not a healthy breath or the promise of tomorrow. Yet it is because of this that each breath, each first, each tomorrow is met with a joy beyond measure.

Yes the last seven years have been trying, and at times down right exhausting, filled with too many days of feeling like you just aren’t doing enough. And, the last seven years have been filled with so much joy, simplicity, pleasure, happiness and love! We celebrate each time any one of our children achieved anything we may have previously taken for granted.

It is normal to assume that with all these challenges, Peter would have his own reservations about each day. He does not! He meets every day with excitement and joy. It often starts with waking up way too early just to climb into bed with us and go back to sleep…..every day is better when you wake up wrapped in the arms of someone you love!

So here are my seven celebrations of the last year  –

  1. Peter is in his second year of Kindergarten….and what a difference a year can make. Last year he couldn’t make it through a morning of school without collapsing half way through and sleeping in the middle of the classroom. This year he rides the bus to school like a big boy, and comes home after a full day of school with more energy than should be legal!
  2. Peter knows his colors, ABC’s (upper case, lower case and phonetically), his numbers, and is starting to read. With a bit of support he can say the letters of his name and try writing them. First grade here we come!
  3. Peter has been invited to birthday parties! This is one of those you things you assume…..you assume your child will be invited to every birthday party because the school rules are if the invitations are handed out in class, every child must get one. Come on – the rules are on our side! Well, we found out last year what it is like to have the child that is not invited to parties. This year he has probably gone to seven – and loves them!
  4. Peter’s vocabulary has exploded! While still not stringing many together into sentences or conversations – each day I am amazed at a new word coming out of his mouth. His articulation is so much clearer! He is on his way to joining the family of motor mouths!
  5. Peter has attitude. Huh?! Dispel those rumors that kids with Down syndrome are always loving and happy……this Little Bear has attitude…..which includes teasing G into chasing him with a “nah nah nah nah boo boo”, screaming at or wrestling his brothers if they take the iPad or turn off Bo On The Go. It also includes the almost teenager worthy tone of “uhh, mama!” with the roll of the eyes and desperation that comes with interacting with someone who just doesn’t get it! Then there is the order barking “GO GO GO” when we are in a hurry, or the cow bell call of “EEEEEAAAAAATTTTT” to announce dinner. We can’t forget the “you go get it” (mark that down for his first 4 word sentence)  when he asks for his milk and your answer indicates that it is anywhere more than 7 steps in walking distance. My favorite of course comes when we are at church and we have Fr. Joe……in the solemnity of starting Mass, you hear “Hey Joe!” called out from the pews. We pretend it is not Peter.
  6. Peter is potty trained!
  7. My son is the king of the world! Yes….he really is the king of the world – his world that is! No matter where he goes – everyone knows his name! And yes….you can say that to the tune of Cheers. Grocery store, Starbucks, school, doctors office, pool, library, church…..you name it!  And this also includes a devout following of women. He understand that to rule his world means bestowing his followers with hugs, kisses, smiles, a gentle hand holding, and of course knowing them by name. You should hear these ladies squeal when Peter says their name. Another upside of being speech delayed…..when you say someone’s name they celebrate big time!
Yes - he takes selfies with his ladies! - April 2014

Yes – he takes selfies with his ladies! – April 2014

Hand-over-hand support - but looks a lot like "Peter"! - May 2014

Hand-over-hand support – but looks a lot like “Peter”! – May 2014

So there you go it……lucky for those of you that made it this far in the post, I decided to go with the top 7. Originally I was going to go with 7 x 7, or better yet 77 things about Peter to celebrate. And don’t challenge me – I could probably come up with 7’777,777 things to celebrate!

Through the challenges I have learned that there is always something to celebrate, something to be thankful for, something that makes the hard days easier. As I read recently, not every day is a good day, but there is good in every day……or something like that!

I don’t know what life will bring in the next seven days, seven months or seven years – I take none of it for granted – and just pray that each day we LOVE like there really is not a tomorrow.

xoxo

catherine

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