Smart Cookie

This week I received emails from two of Connor's therapists and they brought tears of joy to my eyes so I had to share them.  His Vision Therapist emailed to say:

"Today I went to see Connor at Carrie's house and using flashcards he identified numbers 1-10 and common letters.  He could identify them randomly when given a choice of three in front of him through eye gaze and reaching.  He could easily do this with numbers when in order 1-10.  He also knew some of the teen numbers.  I really think Connor is a VERY smart little boy."

And then his Special Education Teacher, who was copied on the email, replied:

"He has done really well with sorting and patterning and lots of age appropriate tasks :)...I will brainstorm on how we can continue to challenge him.  He is a smart cookie!"

So proud of our little man!  He continues to amaze me in so many ways.  Whether it's your kid with special needs or your typical kid or yourself, it feels so good to have others recognize and affirm what you have thought to be true. We have believed Connor was smart, funny and compassionate for quite a while, but having professionals say it means so much.  Continued prayers and hope for further learning and breakthroughs!

Easter 2015

Trying on headbands with sissy

Grief & Hope

It’s a strange thing to be heartbroken and thankful at the same time. 

Recently, I was talking with a loved one about this state that I find myself living in.  They couldn’t understand the grief I feel over Connor’s diagnosis.  That this grief isn’t the same as disappointment or the hope for a different child.  This grief accompanies the unconditional love I have for him yet grinds against it in ways almost too deep to express.  I can’t blame this person for not understanding.  I don’t think I could have fully until I was living it for myself.  When I learned that my child has severe disabilities – disabilities that will alter how he functions in the world and may limit the goals he will achieve – there was an immediate sense of loss.  This loss didn’t diminish my joy or love over this little baby, it just changed things. 

When you’re a parent, especially a new parent, you can’t help but think about and hope for all the wonderful and exciting things the future will hold for your child (and all the scary things, but mostly you try to think about and hope for the good ones).  You think about their first words and selfishly hope it’s your name they will squeak out. You think about their first day of school and how adorable they will look with their very special backpack on as they scurry to the bus ,stopping only to give you a final wave and “love you, mom!” as they board.  You think about birthday parties and play dates with little friends from school and hope your child finds friends who encourage their sweet nature, creative soul and adventurous spirit. You think about the tense hours spent sitting in the passenger seat of a car as your teenager learns to drive and the pride you will feel when they pass their driver’s test after only one try.  As a new parent holding your baby, you think about the day they will leave you to continue on their journey of college or work.  You hope for love in their life and for them to find a special someone to spend their life with and you hope for grandchildren that will live nearby who can spoil with love and treats.  You even think about the days when this tiny child will take care of you when you can no longer take care of yourself and you hope that he will do so with the love, patience and faith that you have dedicated yourself to in raising him.  All these thoughts and hopes plus so many more fly through your brain and instantly this little person’s present and future become your life’s mission.

And so, when you’re told that your baby has a condition that will limit the possibilities or at least make them much, much harder to achieve you are heartbroken.  You grieve for the little things that will be lost and for the big things that may be out of reach. 

The strangest part though of this journey as the parent of a special needs child is that while you may be grieving the things that will never be, you rejoice in the beautiful creation that is your child and you honestly can’t imagine them any other way.  Clara has said to me, “You know sometimes I wish that Connor didn’t have all these challenges and problems because then things sure would be easier, but then he wouldn’t be my brother and I love him.”  And so it is.  Stuck in this weird place of wishing things were different and thankful that they aren’t because then you wouldn’t have this love in your life.

As reality sets in you start to think about and hope for different things for this child you hold fiercely close to your heart.  Some of these new things seem like mere adjustments to previous thoughts and well within reach, while others are distant hopes, but hopes nonetheless.   As we work through therapies with Connor, I hope that he can say words that strangers can understand (and I still want him to say “mama” with clarity and excitement!).  I hope that Connor will go to public school on the little yellow bus and wear the confident smile his sister did as he waves good-bye to us.  I hope Connor has friends.  Friends who find delight in him and his interests. Friends who do not pity him, but who gladly meet him where he’s at on his journey.  I hope for Connor to be independently mobile and to experience the freedom that movement brings.  I hope for Connor to be self-sufficient enough to leave home one day and make his mark on the world, to find joy in serving others and to do something with his life that brings him joy and contributes to his community.  I hope for long lasting love in his life.  I hope he cares for others in his life – family, friends, pets, colleagues, strangers – with kindness, openness, patience and love.  I hope from these first days of his life to the very last, he knows, trusts and loves the God that created and sustains him.

I am so thankful for the gift Connor is to my life, to our family’s life together.  I am heartbroken that his life will be harder than most and I grieve the things he will not be able to do. But that is the rollercoaster of parenthood, of life, really.  On the good days you cling to progress and hope.  On the bad days…well, you pray for tomorrow to be a good day.

Clara made this adorable playdough art of she and Connor.
It says "Sibs Forever" on the top.

Connor gives Clara the "GO!" signal

So much fun on a snow day!

The Struggle is Real

It’s my first time back in PA after 20 days away settling into my new job and house in Chicagoland.  I’ve missed my family terribly.  In conversations with Brent and Carrie over the last three weeks I’ve heard that Connor’s new feeding protocol isn’t going well.  I can now give personal testimony to the fact that the struggle is real.  Both breakfast and lunch were pretty much a disaster on Friday.  He screamed, thrashed, cried and then he bit me.  It was 8:30 a.m. on my first day home and I was not expecting or prepared for my sweet boy to do such a thing.  I screamed “Ouch!  NO BITING!” at which point he started crying harder.   I just sat there looking at him and then myself turned into a puddle of tears.  He stopped screaming and watched me cry.  Maybe feeling sorry for what he had done? Maybe puzzled over why mama was acting like this?  Who knows – but he certainly responded to this emotional scene he was witnessing.

We both regrouped in about ten minutes and while the rest of breakfast wasn’t great, I managed to get some food in him.  The same with lunch – I dodged his attempts to bite me, comforted him when he whacked his head on the chair and miraculously got food and a little bit of Pediasure from the drinking cup in his belly.

Some meals are like this and some are more ok.  We’re working with the feeding therapy center to try to figure out why this is such a rollercoaster still and to make some adjustments to the protocol, but I must give total props to Brent and Carrie for their resilience, patience and love.

Kick the ball!

There are some not so hard things to share, too.  Connor has a new love of sitting on a stool and kicking a big ball.  He is also doing really well with taking steps.  We have to hold him up, but he’s initiating more movement and really starting to connect that he must move his feet to get to where he wants to go.  It’s so fun to watch him move his feet so purposefully!

Vision wise both his Vision Therapist and his Ophthalmologist think his vision is developing well all things considered.  His glasses prescription is being increased in both eyes this winter and we continue to patch two hours a day, but we are so thankful for progress and no surgeries planned on his eyes this year.

While we are still waiting for an augmentative communication plan to be put in place for Connor, he is really trying to repeat sounds and words.  You can see the wheels in his head spinning as he tries to will his mouth to do what he’s thinking.  So while he may not be saying many words still, he is making more purposeful noises and will often babble an entire sentence or two during an activity.

Current requests for prayers and good thoughts include an easier time adjusting to the new feeding protocol, continued strength and patience for Brent as he parents the house solo most of these next five months and for a helpful communication plan to be created soon.

Our two little cuties

New Year - New Adventures

Connor loves wearing his fox hat!

It’s been a wild few months for our family.  The biggest news is, of course, that we are moving to the Chicago area.  I took a new call with the Evangelical Lutheran Church in America to serve as the Director of the Youth Gathering (www.elca.org/youthgathering).  I move to Illinois and begin this new job in a couple of weeks.  Brent and the kids will follow after the school year is done.  Such a rollercoaster of emotions as we say goodbye to people and ministry we’ve loved here and look forward to the new adventures that await us!  One of the most agonizing parts of making this decision was wondering how and if we would find a new day to day caregiver for Connor.  There’s no replacing Carrie, but is it possible that her clone lives in the Chicago suburbs?!?!  Brent and I finally decided to take the leap and trust that we will find someone to take care of our little guy.  As much as we try to believe that who we need will be provided, it continues to be worrisome and scary.

The newest development with Connor is that this week we began a feeding therapy program through West Chester University’s graduate school.  Every weekday for three weeks Connor goes for a feeding session to learn new skills and behaviors and hopefully cancel out a few of the bad ones.  After this “intensive phase” their therapist will do an in-home meal with Carrie and a meal with Brent each week to help make things stick.  I’m excited we finally have someone paying attention to his feeding issues and am trying to remain optimistic and hopeful about what they can do for Connor.

Vince and Connor after the concert

The fundraising concert was a success beyond our wildest imaginations!  Over $10,000 was raised for the Joubert Syndrome Foundation!!  We’re so thankful to Vince for all his efforts and for all of those who donated and came to the concert.

We had a lovely Christmas season.  Connor really enjoyed opening presents this year.  We knew he liked to pull the tissue paper out of gift bags, but didn’t expect him to enjoy ripping the paper as much as he did.  He did such a good job and stuck with it when his little fingers didn’t do what he wanted them to right away.

Opening a Christmas present!

Current prayer and happy thoughts requests include: for

 Connor to make continued progress with all his therapies, especially feeding and speech and for strength for our family as we prepare to live apart for the next few months.

In their Christmas jammies!

Connor is 3!!

Connor sitting with his legs in a bow!

It’s been a while since I’ve given an update on our little guy, so here it goes...

• Connor is 3 years old!  We celebrated with a little party with Brent’s family, Carrie’s family and some of his therapists.  He loved being the center of attention that night and tried a little bit of his cake.  As his birthday present, we took him and Clara to Sesame Place for the Halloween bash.  He loved the sights and sounds and even got to go on a few rides!
  
• His three year old pediatrician visit went very well.  He has gained 8 pounds and grown 3 inches since his last check up.  For the first time in his life he’s at the 50^th percentile for weight instead of hanging out at the low end of things. The doctor prescribed a few routine, annual Joubert Syndrome tests (blood work, renal ultrasound, GI check up) and recommended putting Connor on the little potty chair a few times a day.  I laughed, but she was serious about it so we’ll see how it goes!
  
• We said good-bye to the women we dubbed "Connor's Council of Ladies" - the four therapists who have journeyed with him and us for two and a half years.  There were many tears and hugs.  We hope to stay connected with them and share the awesome things Connor does in the months to come thanks to the strong foundation they helped to lay for him.  Thank you to Beth, Sandy, Deirdre and Katie!!
  
• Connor has taken great strides with his walking.  While he still needs maximum support, he is moving his feet independently and seems to understand that it’s a way to get from where he is to where he wants to be.  We practice a lot and he is fussing less and less about it.  So proud of him!
  
• Transition with the new line up of therapists is going ok.  We’re still getting used to each other and trying to figure out the schedule.   He has seven therapy appointments each week!  I’m also trying to get him into a feeding program and hoping the insurance company gives us the nod soon so we can keep working hard on that.
  
• This Sunday is the fundraising concert our church’s Director of Music (and Carrie’s husband!) is putting on.  He’s raising thousands of dollars for the Joubert Syndrome Foundation and we are so humbled and honored by his efforts.  We are looking forward to a fun afternoon with lots of good music and sharing about Joubert Syndrome.

Current prayer and happy thoughts requests include: for continued progression with standing, walking and feeding, positive outcomes for his blood work and ultrasound and for patience and wisdom for all his new therapists.

Connor was Rajah for Halloween and
Clara was Princess Jasmine

We visited the National Aviary and
Connor LOVED watching the penguins!

I Can't Believe I'm Still Doing This

There have been a few times recently that I've been doing something with Connor and caught myself thinking, “I can’t believe I’m still doing this with/for my almost 3 year old.”  You see, I hadn't planned on having a child with multiple disabilities. I don’t know that too many people do.  So there are lots of things that surprise, disappoint and confuse me.  I think it’s worth documenting some of those everyday tasks that I didn't think I would still be doing…

Washing and using bottles daily

Pureeing food

Spoon feeding my son

Using bumper pads on his crib

Having one sided conversations

Guarding him against face licking dogs

Fearing he’ll fall over and hurt himself while sitting

Laughing at the idea of starting potty training

Carrying him.  All. The. Time.

Looking for new toys or books in the infant/early toddler section

Speaking for him when people talk to him

Taking him to a private sitter

Making almost all choices for him

I could go on, but those are the highlights.  It’s amazing how different our routines and roles are with Connor than they were with Clara.  I know you’re never supposed to compare your kids, no matter the situation, but man...it’s hard sometimes not to remember back to when she was almost three and all the things she and we were either not doing or doing.

It’s my prayer every day that one day soon we’ll be able to take some of these things off the list.  One day soon.

Happy Connor - September 2014

Sad Connor - September 2014

Whirlwind Summer

It’s hard to believe that the school and program year begins again in just two short weeks.  It’s been a whirlwind of a summer.  I’ve been traveling a lot for work and it feels like (since getting home on Wednesday night from the latest trip) I’m just getting my feet on the ground for summer vacation.

The kids have also been travelers this summer.  They journeyed to North Dakota to spend two weeks with my mom.  Clara reported there were a lot of “stay in your pajamas days”, board game playing, play dates with Aunt Emily, dance parties, badminton and swinging in the back yard and way more fun than we’ll ever know!  My dad was up in ND for a gig and drove over to see us when I went to pick the kids up. I’m so thankful the kids got to spend time with my family over the summer.

Practicing on his Amtryke!

Other than that, Connor’s summer has been spent with Carrie, doing therapies and breaking in a few new teenage babysitters.  I’m trying not to get down about it, but we haven’t seen a breakthrough like I was hoping for this summer.  I REALLY wanted to see significant progress in feeding or communication, but there really hasn’t been any.  So we just keep plugging away and hoping that one of these days he will turn a corner.

One exciting milestone is that Connor can now sit up from lying on his back.  He can do it no problem if there is a little pillow behind him and has done it three times from the ground all the way up.  You can tell he’s very proud of himself!

He is starting to enjoy riding his Amtryke and is keeping his hands on the handlebars more.  Carrie took him to Vacation Bible School at our church and he was pushed up and down the hallway on his little bike.  I’m sure he was quite adorable!

Doing some standing in his new shoes that
go over his DAFO leg braces

We continue with the transition to the Intermediate Unit.  I found out last week that Connor was approved for services (shocking, I know).  Our first IEP meeting is in two weeks and we will make the plan of action then with our case manager.  None of our therapists will be able to continue on with Connor and I’m quite nervous about how he will handle this change.  The IU people are really encouraging us to put Connor in some kind of preschool.  While I would love for Connor to socialize with other kids, I think it would be too many changes at once to start him this fall and I don’t think his therapies would be most effective in a classroom setting.  We’ll see – maybe we can work out a happy medium where he would go a couple of half days each week.

Finally, for those of you who are local, we’d like to invite you to a fundraiser the Minister of Music at our church is doing for the Joubert Syndrome & Related Disorders Foundation.  Vince is performing a solo piano recital on Sunday, November 9 at 3:00 p.m. at Advent Lutheran Church in Harleysville, PA.  We’d love to have lots of folks there to hear Vince’s amazing music and donate to JSRDF!