My Family

My Family

Wednesday, November 25, 2015

Finding the Thanks

It's easy to be thankful when things go well.  When Festus pulls all A's, is in honors, and is in the top of everything it's great.  When Gloria makes the cheer team, majors in law and is in line for the Nobel Peace Prize it's even better.

When you are a mom to two kids with dynamic needs it can be harder.  Thankfulness can be elusive.

We made it back from Dr. Roman's visit a few weeks ago.  I had hoped for some amazing and dynamic breakthrough with Cary Lynn's CVI.  What we got was just more questions and confusion on the topic of her vision.

Cary Lynn has made some modest progress.  But not what we had hoped for.  It turns out she may have another visual diagnosis in addition to CVI.  Optic nerve hypoplasia occurs when the optic nerve is underdeveloped.  The visual loss can range from mild to severe.  So even if we correct the CVI Cary Lynn may never have a great amount of functional vision.

I held it together in front of the kids but I got back to the hotel and cried.  I worked so hard to help her vision and it seems like what I did may or may not have mattered.

We also had a visit with her GI dr and found out in an x-ray that she has a subluxation in her hip.  I was hoping for great things from the GI doctor and had high expectations.  But finding a gi doctor who is able to work with medically complex kids out here is like finding a needle in a haystack.  He sat and watched my child scream and bite herself in pain until she bled in the office and all he could say is she does not weigh enough.   Seriously?  I wouldn't take my pet rock back to him at this point!!
Then there is my son.  I found out that he needs speech therapy.  I know those of you who know my very verbal child find this incredibly difficult to comprehend.  I know I did.  His OT started noticing things and referred him.  It turns out he has processing and delay issues.  Speech feels that she can help him with this.  Marvin was not pleased that he needed more help.

He also gets another session of OT in the evenings.  This is a group session with other kids.  He's a little more excited about this one but for me it's just another therapeutic activity that I wish he didn't need.

As if my life isn't exciting and glamorous enough right now Marvin managed to get bronchitis.  I took him in today.  Yay, the party never stops for us.

Soooooo, since we have had so much happen to us all at once, which is kind of how it rolls around here, it can be hard to find thanks.

Yet despite it all, I am thankful.  Today my phone has rang all day.  I've had lots of people check in and offer support. I have an amazing network of friends.  I've also got new ideas to help Cary Lynn deal with her ever increasing pain levels.  I have a wonderful palliative care team who's sole purpose is helping our family find a great plan for Cary Lynn.    

I'm also thankful that we got to the Dr. today.  Marvin is starting some meds and hopefully he will get some much needed rest.  I'm also thankful that I was smart enough to purchase things for our own Thanksgiving meal since my children religiously seem to enjoy getting ill over the holidays.  Due to Marvin and my food allergies I decided it would be smart to make a meal we could eat and maybe puree some for Cary Lynn.  I'm thankful we will have a nice meal to sit down to.

Marvin is also making progress homeschooling.  He has gone from a first grade level to a second grade level.  For us that is a big deal.  He still struggles but he is trying so hard and now that he doesn't feel stressed or pressured his learning is starting to take off.  I'm thankful that he feels safe and that learning has become enjoyable once again.
Most of all I'm thankful for these two.  These kids are amazing.  They have lived through so much and yet find reasons to smile every single day.  They are brave, strong, and proof that you can overcome just about anything that life throws your way.  And for that I am thankful. 

Sunday, November 1, 2015

The Dying of the Light

I wake up, rub my eye, grope around my nightstand, and find my glasses.  When I put them on the world falls into focus.

It's also one of my favorite seasons.  I spend hours looking outside and enjoying beautiful drives as the leaves blaze and put on a spectacular show.  Marvin brings me "leaf bouquets" a tradition we started many years ago.  We talk about trees and the seasons.  I taught him how to make leaf houses like my sister and I used to do.  Heaven knows we have enough leaves around here! I hear my grandpa's voice in my head describing the trees.  It brings back memories of our walks in Arkansas together.  My husband and I talk about nature and the pretty things we see and enjoy.  He also expresses worry over deer.  When you live out here deer and bears (yes we have bears) can be a problem.

But one member of our family never participates in fall discussions.  One member remains mysteriously silent.

When we brought home Cary Lynn I was introduced to CVI or Cortical Vision Impairment.  I was told that there was nothing much I could do.  Plus we had so many other health issues on our plate I wasn't worried about it frankly.  When you have to fight for your child's life piddly things like sight take a back seat.

When I came up for air I started learning about CVI.  I took courses.  I became educated because where I live there is a sad lack of education with disabilities.  I learned.  I made connections with the top dogs in the CVI world because I needed their knowledge and support.  I became very excited the more I learned.  The brain and its functions became very time consuming and all absorbing.

We worked hard.  Very hard.  We also saw Dr. Roman for the first time.  She pioneered the CVI movement.  She took two hours with us and we left with lots of useful tips and helpful information.  I was ready to conquer the world!

The years passed.   In two weeks we will go up to Pittsburgh again.  But this time I'm not looking forward to it.  In fact, I'm really dreading it.  Not all of it.  I am excited to take my children and go to the amazing aviary and museums they have.   To enjoy a mini vacation of sorts.  I even get to visit with some of my husband's co-workers in Pittsburgh branch.  Those things will be enjoyable.

What I won't enjoy is the heart of the reason we are going there.  We go back to Dr. Roman.  Don't get me wrong, I enjoy Dr. Roman.  She is a wealth of knowledge.  What I won't enjoy is when she looks into my child's eyes.  Instinctively I know things haven't gone the way we hoped.

I hoped that she would climb the CVI scale.  That she would just shoot ahead.  That when we went back she would have amazing sight gains.

But it hasn't happened.  For all purposes her world remains cloaked in shadows.  In mystery.  Her little blue eyes that seem to look into forever have never seen the faces of those that love her the most.  Her little pupils barely react to a flashlight being shone on them.  One eye does nothing at all. It used to, but about several months ago it just gave up.

The changes didn't happen suddenly.  They have come slowly and gradually.  Like a thief in the night.  So I have a feeling that when we sit down with the good Dr Roman it may not be the meeting I had so longed for.  It isn't an easy pill to swallow.  Of all of her disabilities this is the one that I grieve the most over.  I will be fine in time and we will adapt to it, but I hate the fact that she has lost one more thing in a body that has already lived through war.

At the middle of it all is the little warrior who stole my heart.

Adorable, quirky, feisty, and a fighter.  Whatever the outcome of the appointment is I'm still proud of the progress we have made and the hurdles she has overcome.  With or without vision she takes the world by storm.  And that is good enough for me.