No Room at the Inn

Three weeks ago, Brent was hired for some full time, contract work at a local engineering company.  They wanted him to start a few days later and while this was great news it left us in a bit of a lurch since we didn’t have any child care arranged for the kids.  We decided Clara would go to the After-School program the YMCA hosts at her school.  A couple of phone calls, one day on a wait list and three single-sided forms later she was registered and began a few days later.

Connor, on the other hand, was not so easy.  We checked around with people we knew to see if anyone they knew would be willing to watch Connor after preschool.  No luck.  We called several day care centers, but the bus from his preschool wouldn’t transport there.  Finally we found one that the bus would take him to and while they had room for him, because of his special needs they had to get approval from their corporate office.  So we filled out a pack of forms, did a site visit with Connor, got them a copy of his IEP and then waited.  More than a week later we received a call saying that the center could take Connor, but only if WE provided a one-on-one aide for him.  IF WE HAD SOMEONE WHO COULD WATCH HIM DON’T YOU THINK WE WOULD JUST HAVE THAT PERSON WATCH HIM AT OUR HOUSE?!  So because we couldn’t do that, they couldn’t or wouldn't accept Connor into the center. 

We were now down to the last possibility on the list and gave them a call.  They had room for Connor and asked if we could come to the center and talk things through.  We went an hour later and while the director was very nice, the whole time we were talking about Connor’s needs he just had this “o.m.g.” look on his face.  We toured the facility, saw what would be his room and then when we went out to the playground I asked the director if the center had ever had a child with special needs like Connor’s.  He shook his head.  No, never a child in a wheelchair or who wasn’t mobile.  Never a child who couldn’t feed himself or had zero language skills.  I could tell he felt bad about this confession.  I gave him a little smile and said, “Neither had we until Connor.  There’s a first time for everything.”  To which he smiled back and said, “We really want to work with you and see if this is possible for him.”  After the tour he said he needed to talk to his corporate office and get approval.  This time, however, we got a call the next day!  He said that if we were willing to give it a try that they were, too.  So on Monday Connor will start a trial period at this center.  They aren’t providing an aide, but there are two teachers and 11 kids with a floating teacher who will sometimes be in the room.  We are just grateful for a place that is willing to give Connor a chance.  We realize that having Connor in the room changes the dynamic for the teachers and the other kids.  We realize that having Connor there is a lot more work for the adults.  We realize that Connor won’t be fully engaged in everything, but for now we just need a safe place for him to go after preschool.  We are thankful and hopeful, but also realistic that this may not work out.

And while we have been thinking about what place will take Connor in after school, we’ve also been doing a lot of thinking about our forever home here in Illinois.  We are still renting a wonderful home from the church and while it’s working out great we are definitely feeling the need to settle into a house and be done with transition!  The process of finding a house has been complicated.  Not only is the housing market difficult in the area we need to be in, Brent and I have been agonizing over the layout of the home.  We are trying to see into the future and forecast what Connor’s mobility and independence will be.  We’re trying to imagine if it would be better, easier, fairer to have his room on main floor even if the rest of us are upstairs.  We’re trying not to let go of our and Clara’s desires and needs for this next home.  It just feels really complicated right now and we are wondering when or even if we will find a home that work for us, whatever that means. 

Connor was evaluated and approved for additional Occupational Therapy and Feeding Therapy at the Easter Seals and now we are on a wait list for both of those.  I’m especially looking forward to getting back into Feeding Therapy as meals have been frightful.  Every breakfast and about half of his lunches and dinners are spent screaming, crying and thrashing around.  Sometimes we can get him to settle down and eat and sometimes after 20 or so minutes of either trying to calm him or trying to jam food into his mouth, we just give up.  I’m worried if we don’t get this under control he will have lost weight by his birthday well visit and they will want to talk about either doing more bottles again or something more invasive.  Both would feel like huge steps backward after all we’ve been through with feeding and how far he has come.

Ready for the first day of Sunday School 2015!

It hasn’t been all hard the last few weeks.  The kids both love their schools and teachers.  I have had virtually no travel for work since the end of July, so we have enjoyed more family dinners, nights and weekends together in the last two months than we probably did in the year before I moved to Illinois! Brent is excited about this new work he will be doing.  The neighbor kids are hilarious. We are becoming familiar with and fond of an extremely hospitable congregation.  So we just take one day at a time.

Prayers and good vibes for peace and patience in the midst of all of this are appreciated!

Taking selfies on mom's phone

New Beginnings

The lack of blog posts in the last few months is certainly not a reflection of nothing going on in the life of Connor.

Final night at the JS Conference

Certainly the biggest development is that the entire family is now in Illinois.  We are temporarily living in Villa Park, a western suburb of Chicago, as we wait for our house in PA to sell and for Brent to find a job.  It’s good to be together again even when we know the transition isn’t over.

And of course, coming to Illinois meant leaving Pennsylvania and everyone we love there.  “See you laters” were said to Brent’s family, dear friends and our Advent faith community.  As part of his farewell at Carrie his babysitter’s home, Connor added his handprint to their family’s wall of hands.  We can tell he misses her a lot!

In July our family attended the family medical conference hosted by the Joubert Syndrome & Related Disorders Foundation as it was held in Chicago.  With everything going on, there was no way we would have been able to travel to the conference so having it local was a true blessing!  While there wasn’t much new information or research, it was great to connect with families we met two years ago and meet new ones.  The conference had twice as many attendees as last time (from all over the world!) which is so awesome as it means more parents are getting the word that the foundation is out there to support them.

Potty chair session with Elmo

This month has two major new starts for Connor.  A couple of weeks ago we decided to try to tackle potty training.  He enjoys sitting on the potty chair.  I mean, who wouldn’t?  We read books about going to the bathroom, sing songs and watch Elmo Goes to the Potty DVD.  So while potty training has been enjoyable there has yet to be any success. We’ll just keep on trying!

On August 24, Connor had his first day of preschool!  It’s hard to believe he is old enough to be in that world.  He is in a multi-disabilities classroom through our local school district for 2.5 hours a day, Monday – Friday. He has a great teacher and there are several aides in the room.   Connor receives his physical, occupational, speech and vision therapies at school.  Because his direct service time for therapy was cut when we moved from PA to IL, we are seeking additional therapy at a local agency.  Hopefully everything will be set up in the next week or so.

First day of school!

With all the craziness and transition in the last few weeks, we haven’t seen Connor take huge leaps forward in many areas.  He is doing better with chewing though and about half of his food is now “real” food and half puree.  Meals are still often a fight though and we are trying to find the balance between pushing through the crying and entertaining him enough for him to eat peacefully.

Current requests for prayers and good thoughts are for a continued positive experience at preschool and with new therapists and for our family’s continued transition to life in Illinois.

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!