Life in Deep Waters

My work is as part of the national staff of the Evangelical Lutheran Church in America. Recently, a colleague led a devotion from Kelly Fryer’s “Reclaiming the “L” Word” that stuck with me.  It focused on Jesus’ calling of the disciples and his teachings around following him.  In Luke 5, it says Peter and his friends had been out fishing all night and hadn’t caught a thing.  Jesus was on the shore teaching and when he was done, he turned to the fisherman and said something to the effect of “If you want to catch something worthwhile, you have to go into deeper waters.”  I’m sure they were overwhelmed and scared to think about heading out to the unknown, deeper water with their ill-equipped, tiny boat.  But they did, and their nets weren’t big enough for the catch they found.

As we shared as a staff when God has called us into deeper waters, my heart started to swell and my eyes glistened.  Being the parent of a child with special needs is being called into deep waters every day. It is the challenge and opportunity to go into deep, sometimes rough seas. It’s navigating uncharted waters and praying you don’t crash.  It’s feeling overwhelmed and ill-equipped.  It’s trusting that things will be ok.  It’s hoping you are doing the right thing for your family.  Living daily in deep waters means you’re almost always tired – weary from all the unknowns, worn-out by the fight against the waves and the current, drained from the near constant worry, exhausted from caring for the others in your boat.

As a parent, it’s scary and hard to go into deeper waters.  When most people make the choice to become parents there is a certain realization that this parenting thing is going to be difficult, but nothing prepares you for the reality of this journey when it involves a special needs child.

But just like those fishermen who answered Jesus’ call and challenge to take their boat to deeper waters, the rewards and blessings of a life lived in deep waters are unparalleled. Deep waters are where treasurers lie.  Some of the most beautiful, unique and rare creatures in all of creation live in deep waters.  Being a tiny boat among crashing waves makes you realize how small you are and how big the world is…which quickly helps you prioritize what really matters in life.  And maybe it’s because my greatest peace comes from being by or on the ocean, but I don’t think there is anywhere more beautiful than the view from deep waters.

Being the mom of a child with special needs has brought blessings and rewards that parenting a child who is typical simply does not.  My love for my children is equal, but there is undoubtedly something special in raising Connor.  We celebrate more.  We snuggle more.  We forgive more. We marvel more.

Living life in deep water makes me love and appreciate Clara’s joy, abilities, compassion and humor more than I ever thought possible.  More often than I’d like to admit, she is that voice of calm who says, “Do not be afraid.”

This is not where I thought my journey of parenthood would lead me.  I am brought to tears regularly, equally from worry and gratitude. There are many days I am in awe of my special boy, a true unicorn of the deep waters.   There are many days I wish Joubert Syndrome did not exist and yearn for a simple life near the shore.  I am thankful daily for those in the boat with me and for those who cheer from the shallows. 

I am tired, but oh how my nets are overflowing.

Mama Bear Reporting In

Smooches

I often have big mouth.  I have lots of opinions and frequently feel free to share that with others.  When I’m passionate about something, I speak the truth.  When I see injustice or am frustrated by others, I speak up.

I’ve realized in the last few years that perhaps this core piece of my being was created in me so that one day when a therapist looks at me and speaks words that I hear to mean she has lost hope in our little boy, I have it in me to fight for him and demand that others do the same.

As you may have guessed, we had a fairly rough IEP meeting not too long ago.  Connor has been in his new classroom since mid-February and it was time to gather the teacher, aide, therapists, social worker and principal for a conversation.  These meetings consist of a lot of people with a lot of opinions around the table and often it feels like there isn’t enough space or time for all the words flying out of people’s mouths.  This time felt especially that way. 

Figuring out how to walk in a gait trainer

Connor’s physical therapist, who truly adores Connor and recognizes how smart and great he is, told us we really need to get him a power wheelchair because walking with a walker or gait trainer is hard for him, makes him tired and he doesn’t like.  She also said that she thinks he may be made fun of by the other preschoolers because he’s pushed in a wheelchair like a baby instead of being independently mobile.   

My heart sank and fury started to build in me.  I did manage to control myself enough not to swear or scream at her, but rather calmly told her that we haven’t given up hope that Connor will walk (even if it is with assistance) and that we believe in him.  I told her I don’t care if he enjoys using the gait trainer – that’s not the point right now.  And perhaps if they have him practice every day like we told them to do when he started in January, his tolerance and strength will build and it won’t be so hard or tiring for him.  But well played, therapist lady, with “the other kids will make fun of him” line.  This mama’s heart isn’t that squishy.  I came to terms a long time ago that someday, maybe even today, my child would be teased for his disabilities.  I know he’ll be judged by others because of what he seemingly can’t do.  I just didn’t think it would be by his own therapists.  So I declined her recommendation of the power wheelchair (three times in the one conversation) and asked her to continue working with standing and with the gait trainer.

Then a seemingly clueless Occupational Therapist tried to share, but really that just felt like Brent and I telling her what we do at home and in our private therapy to help with fine motor.  Sigh.  I get that funding is being cut and everyone has a full case load, but when you’re supposed to be the expert I expect you to be one. Sometimes I wonder if I expect too much from people. 

Connor’s vision therapist gets him, believes in him and challenges him.  Thank heaven for small miracles.

And then the speech therapist started.  This was the first time we had met her.  Connor has 45 minutes of Speech Therapy each week, at least half of which is in a group session.  So this woman after five weeks of seeing Connor, mostly with other children who are verbal, had the nerve to say not once but several times that she doesn’t think Connor will ever speak and basically we should focus all our attention on finding the right augmentative communication device for him to use.  I wanted to cry and scream – HE’S FOUR YEAR OLD!  DON’T GIVE UP ON HIM!  Instead I held it together and after thanking her for finding the current communication device he’s using, firmly told her we were not giving up on Connor and that we’d like her to keep working on verbal language skills with him.  She seemed baffled and a little pissed.  Later, when she was going over his new speech goals, I insisted that she keep a verbal language goal in there.  She said “You really want to keep one in there?  I don’t think this is possible for him.”  I looked right at her and said, “Keep it in.  I know that if it’s not in there, you won’t work on it.”  It’s the only way I can hold her even remotely accountable for doing what’s best for my son.

SUPER excited about his new shoes

So needless to say, I am looking into private physical and speech therapy now.  Connor’s at a critical age and we need people on our team who believe in him and push him to be all that he can be.  I’m not confident he will get that at school, so we’ll pay someone to do it.

There was a time in my motherhood journey when I thought my mama bear mode would be needed when I had to confront the neighbor kid for hitting my kid or demanding the principal take action against a bully.  I didn’t think I would have to do it when he was only four years old.  I didn’t think it would hurt my heart as much as it does.   I didn’t think it would be with people who are supposed to have his best interest in mind.

That’s a really long way of saying we are pushing through.  And that I’m thankful for my big mouth and the gumption to speak up when need be.  I’m also quite aware that all of this pushing might be more for me than it is for him and I pray every day it’s not.  It’s a chance I have to take.

Crazy, Wonderful, Stressful Months

Well hello, blog reading friends.  It’s been a while.  Life has felt like a whirlwind since the fall, so I will try to catch you up!

Getting on the bus for the first time!

September
Brent starts his new job, so Connor gets to start riding the bus to school!  He loves it and his bus driver, Mr. Randy, is so kind and awesome.  In order to comply with the district’s safety rules, Connor must be in a wheelchair in order to ride the bus.  Luckily, we find this great organization not too far away that gives away second hand wheelchairs.  We are so thankful as getting a new one probably would have taken months and cost hundreds of dollars!

Connor starts day care and does splendidly.  He really enjoys being around “typical” kids and his presence doesn’t seem to be too much of an extra hassle for the teachers.

We put an offer on a great home in Bartlett, IL.  The offer is accepted and we start thinking about the final stage of our move.

October
Connor loves preschool in Mrs. C’s class.

We meet the new orthotist who adjusts Connor’s DAFOs (ankle braces).  Everything looks great and he encourages us to keep Connor standing and walking every day.

We sign Connor up for additional therapies through Easter Seals because his service times were cut when we moved to Illinois.  He now gets a hour of OT and a hour of feeding therapy there every week.

Connor turns four!

Selfie with mommy

November

Work takes me on the road a lot this month.

Connor has his first ophthalmology appointment in Illinois.  Time for a new glasses prescription.

Brent is laid off from his job and starts another stint as stay at home dad.

November 30^th we close on our new home.  Yippee!

December

Clara turns 10!

Connor starts using a gate trainer a little bit each day at school.

Both kids participate in St. Paul’s Christmas program.  They are behind adorable.  Clara loved playing bells and singing in the choir. 

The kids say goodbye to beloved teachers and friends. Three days before Christmas and we do the move from Villa Park to Bartlett.

January

Clara and Connor start new schools to mixed reviews.

Feeding Connor has been rough the last few months.  He often refuses food and we end up reading a book, singing or telling a story to get him to eat.  We’re right back to where we were before all this transition started.  I’ve reached out to therapists and doctors for some tips on how to curb this behavior issue and I’m hoping that we can get it figured out in the next month or so.  The good news with feeding is that Connor is now eating almost 100% “regular” food – no more purees!

Connor changes classrooms three weeks into his time at the new school and things are going great.  His therapists are really challenging him.  Most notably, they have found a communication system that seems to be working.  We have been asking speech therapists to help him communicate for 15 months and no one has been able to find a system that works.  Now Connor has a board with 20 buttons that he can use to communicate what he wants and needs.  He got the hang of it really quickly and we are hoping to add more words soon!  I can’t tell you how amazing it feels to see him point to the pictures to make a sentence.  He is so proud of himself and we are filled with hope that this just might be the answer.

So it’s been a crazy few months. Wonderful, busy, hard, joyful, stressful months.  We are so thankful to finally have this move behind us and look forward to all that 2016 will bring!