legobraille

LEGO + Braille

The initial set of LEGO Braille tack tiles is done! I still need to add a little label to the bottom of each so that even someone without knowledge of Braille can help, as well as for a reference for Mackenzie to know which side is down. I made the vowels in red and the consonants in green, again so that anyone without a knowledge of Braille, including Kaelen, have a quick reference. The tops were made of single celled flat pieces in a dark red and single celled yellow bumpy pieces, because hey who knows if contrast might be a help. Yellow is the first colour our eyes are able to distinguish. I’m thinking of doing some tiles with contractions down the road (ing, ed, etc.).

On The Road Again

Well, we are off to Michigan again for an evaluation under anesthesia which may be a surgery depending on how Mackenzie’s right retina is settling. I’ve been meaning to write this post for a while now, but have been having difficulty knowing how to word things because I don’t want to be negative. We’ve been so incredibly blessed through all of this, but part of the purpose of starting this group was to be of help to others who might be struggling as well.

So many people have made comments to me in the past months like “You’re such a strong woman!” Or “You’re such a woman of faith!” When people say these things I try to be kind and polite and say “Oh thank you,” or something along those lines. The truth is, Matt and I are just doing the best we can. We cling to our faith because when you’ve been where we have, there’s nothing else that you can do. I would be lying to suggest that we don’t struggle sometimes.

Understanding the reality of Mackenzie’s world is a strange combination of grieving and amazement everyday. We grieve because our vision of our son’s life is not what we dreamed of for him and that the obstacles in life for him will be many. However, watching him grow and learn is amazing because he is such a testament of how resilient a little person can be.

I’ll admit I struggle with my anger towards others sometimes. When people notice him pushing on his eyes and innocently comment “Ohhhh he’s tired,” as if it’s so cute. Early on I would actually respond in a perky voice and say “Nope! He’s not tired, just blind,” to which people’s faces would fall and make some apologetic or sympathetic comment. I knew it was awful to do, but I think a part of me was just so angry and sad all at once that I needed someone else to verify how bad it really was. I wanted them to know that I wished they were right, but that the truth was that it was oh so wrong. People still comment, but I’m getting better at keeping quiet and letting them assume he’s just a cute little kid in shades. It still bugs me, almost as if its making light of what we’ve been through.

One man in Walmart the other day saw Mackie and just started laughing. I’m sure it was a response to him thinking that they were little sunglasses that he was wearing, but I got so close to going up an asking him what was so funny. It’s so unpredictable what can set you off sometimes.

Another mom on a PFVS support group that I’m a member of on Facebook was venting one day and was upset because someone had said to her “Well at least your daughter has one good eye.” She was so angry that someone would say such a thing. While I realized she was grieving her own situation, her comments caused a welling of self pity in me that was so overwhelming. In my mind, at the time, she had a lot of nerve saying what she had as my child sat next to me with two affected eyes, never able to do things that her daughter would take for granted. It’s funny because people always say “Kids can be so cruel,” but the truth is its the adults whose actions and comments hurt more because they should know better. Kids ask questions or comments out of curiosity, without understanding the impact of what they’re saying.

Knowing that helps.

I’m learning slowly but surely though that hurt is hurt. There will always be someone else out there that has a bigger hurt than you, but that doesn’t make yours any less painful for you.

I’ve been talking to a therapist through my employee assistance program through work. There’s something very relieving about being able to vent or talk unfiltered with someone. I’m the person who has probably already psychoanalysed every corner of my own brain, but it’s still comforting to be able to let things out there and have my feelings validated. It’s also nice as a mom (who like most women feels like I have to be taking care of everyone else) to have someone insist that I advocate for my own health and wellness. There’s something about a professional telling you to go out that just gives it a justification that a friend or family member can’t top.

So, these are just a tip of the emotional iceberg that I’ve been experiencing. I could write a novel about this stuff I’m sure. For now, I think it’s enough, but please know that if you are a parent of a special needs child or if you are going through a tough circumstance right now, you aren’t alone. Your anger, frustrations, guilt, sadness are a beginning, but not the destination. Learning that they are normal and dealing with them can make you a better parent and a better person.

Check Up Update

Since Heather is off getting some retail therapy, I guess I’ll update y’all on today’s evaluation under anesthetic (EUA). The Coles Notes: good progress.

The full version: Mackie’s eyes are doing well. There is still progress happening with Mackie’s processes taking care of some of the lipids and gunk from behind the retinas. In Dr. Capone’s estimation, he is seeing blobs in contrasted conditions. Which, frankly, is much more than he had before we started.

Dr. Capone is pretty happy with how things are progressing, but he had us schedule for another surgery in November. He may not use the time for it, however, we need to be ready for it.

Heather and I both agree that this visit is so much different than the ones in the last six months. We don’t have to worry about funding anymore. The Ontario government is actually doing its job! Whodathunkit?

I’m sure Heather will have more to add later.

VICTORY!

That shoud get you in the right mood for the news you’re about to get: in the last 24 hours, Christina Blizzard of Sun Media wrote an article about Mackenzie, calling out the government on their misspending and giving medical coverage to a person ineligible for healthcare coverage, but not to an eligible person; and pointing to the other Whitby boy who was covered with the same condition. Mackenzie’s story was picked up by various Sun affiliates around Ontario, and news aggregators Michigan, Taiwan and India. Yeah. We have a famous little man; as if he wasn’t before.

Since that article went public at about 10pm last night, we effectively doubled our petition count, got the attention of the Ontario Ombudsman’s Office, and the attention of the Health Minister’s Office.

While I was on the phone with the Ombudsman, the Minister’s office called to tell us that we would be funded going forward. My guess why it happened so fast: it was a matter of bad PR for the Liberal party of Ontario (which the Liberal Party have in spades). That’s just my guess; being a political junkie I would have loved to see the process involved to get to this decision, but I digress.

The thing that Heather and I were just discussing is that the funding from OHIP allows us to:

  • Rest. Despite my stress leave, I still feel like I need to be going full tilt to get people talking and engaging in Mackie’s story. I know Heather feels the same.
  • Have normal finances. Savings are just savings for a rainy day or retirement, not savings for a surgery or check-up contingency plan (in case fundraising dries up) that we’ve already paid for in taxes.
  • Be a family. Though we’ll still post updates about Mackie’s progress, we won’t be tweeting/facebooking our (and your) faces off, planning fundraising, delivering flyers, and engaging media all trying to get Mackie’s story out there so that we can raise funds; upon the altar of family’s mental, social and physical health.

Thank you to Christina Blizzard by lighting the fire under the Health Ministry to get this done so fast. Thank YOU, the petitioners, the donors, the volunteers, the concert goers for all your help. For lighting up the inboxes of the Minister of Health and our Premier. For giving or coming to the concerts; giving up your spare change or beer bottles; or helped organize those undertakings. Thank you all for your support!

To bring out my inner geek and modify a quote from Star Trek: “Persistence brings victory; and victory is life.”

Except maybe that life part.

Surgery #3

Mackenzie’s surgery went well. Dr. Capone was able to get quite a lot of scar tissue out of Mackenzie’s right eye. He didn’t get it all, but it’s impossible to get it all. He believes there is about an 80% chance that we won’t have to have anymore surgery on that eye. It depends on how well the retina settles with that little bit of stalk tissue left behind and whether the tissue still in there causes any traction on the retina or not.

I think he was wise in not going any further. He said where it was attached could have caused a lot of bleeding and he didn’t want to risk losing the progress already made.

Mackie had a bit of a fever after surgery again, but the ibuprofen seemed to take care of it. We have a checkup tomorrow and then we are headed home.

Mackie and I return next week for a one week checkup.

A Post I Never Wanted to Make

It seems that every time I go to make a post, that I have so much to say and don’t know where to start. I am going to do what I always do and start off with what I see as bad news so that I can end with the good. It’s always nicer to end off with the good.

Yesterday we got a report back from the genetics testing done in the States that Mackenzie had tested positive for one of the mutations of Norrie’s Disease. All along this journey of ours, Norrie’s disease has been on my radar as something that was a possibility, but I had convinced myself that it wasn’t applicable to Mackenzie. We don’t see any other issues with Mackie that could be attributed to Norrie’s with the exception of his ocular condition. Unfortunately, many of the symptoms do not appear until later on.

Other than the eye condition that Mackenzie has, Norrie’s disease often presents with gradual hearing loss that has a median onset of age 12 (no earlier than 5 years). Other possible issues are possibly autistic like developmental delays (if you can believe it, some sites actually used the term mental retardation. Seriously??? Are we living in 1955?), behavioural issues, seizures, circulation issues, etc. Only 15% of those with Norrie’s will exhibit a majority of the symptoms according to what I’ve read, but the ocular condition is universal and the hearing loss is pretty common. Thankfully, the type of hearing loss that is involved can be treated with hearing aids and cochlear implants. Clearly though, it’s not at all what we wanted to hear.

Those of you who know me will laugh because I already have written to one of the board of directors for a Norrie’s Disease foundation in the States who himself has Norrie’s disease. It was encouraging to read his story and understand that it is possible for a man with this disease to live a full and purposeful life. He himself has one university degree and is working on his second.

He was very encouraging when he wrote back. His cousin also has Norrie’s and just got married, which almost made me cry. As a mom, I worry about Mackie. I love him to pieces, and can tell by his little personality already that he is going to be an amazing person; but I worry about the prejudice of the world around him. As far as we’ve come, I have learned that we also have a long way to go in regards to how we accept and integrate people with special needs into our society.

So, how are we?

Well, Matt is frustrated I think. He, more than ever is of the opinion that the province needs to step up for Mackenzie. Now that we know he has a high chance of having hearing loss as well as being legally blind, it makes it that much more necessary for his sight to be handled by experts in the field to maximize his accessibility to the world around him!

I am as well as I can be, I suppose. I have down moments, I have moments where I think we can handle it; but I’ll be frank, I’m drained. I feel like a balloon that has had the air deflated from it.

Today, my mom and dad both showed up on my doorstep. Mom came first and was talking genetics with me at the kitchen table when dad showed up unannounced. He had driven all the way to Whitby from Bowmanville to bring me a bag of chocolate almonds that I had asked them to pick up from World’s Finest Chocolate Factory in Campbellford. I guess he thought I needed them today. SO, if you wonder when you see us next why we might be a bit quieter than usual, we are processing. We will be alright, and we are confident still that there is a purpose and plan in this, whatever “this” is or will be. We just might need a while to adjust I think.

It is interesting because when our vision consultant Sal was over the last time, she was amazed by Mackenzie and his understanding and determination. She gave him a great big hug and said “You are going to change lives, my boy!” I’ve truly felt that way from day one with Mackenzie even before he was born.

The Sunday before he was born, during worship, we sang a hymn that we hadn’t sung in a long time. I felt so stirred when I heard it. It felt like I was being told that this is Mackenzie’s song and I will end this post with the lyrics. I love the whole song, but the first and last verses are Mackie’s. They even ran through my head as he was being born. I’m holding onto these as a promise.

In Christ Alone

In Christ alone my hope is found
He is my light, my strength, my song
This Cornerstone, this solid ground
Firm through the fiercest drought and storm
What heights of love, what depths of peace
When fears are stilled, when strivings cease
My Comforter, my All in All
Here in the love of Christ I stand

In Christ alone, who took on flesh
Fullness of God in helpless babe
This gift of love and righteousness
Scorned by the ones He came to save
‘Till on that cross as Jesus died
The wrath of God was satisfied
For every sin on Him was laid
Here in the death of Christ I live

There in the ground His body lay
Light of the world by darkness slain
Then bursting forth in glorious Day
Up from the grave He rose again
And as He stands in victory
Sin’s curse has lost its grip on me
For I am His and He is mine
Bought with the precious blood of Christ

No guilt in life, no fear in death
This is the power of Christ in me
From life’s first cry to final breath
Jesus commands my destiny
No power of hell, no scheme of man
Can ever pluck me from His hand
‘Till He returns or calls me home
Here in the power of Christ I’ll stand

Here in the power of Christ we’ll stand.

The Day We’ve All Been Waiting For

Today we returned to William Beaumont Hospital in a significantly less worried frame of mind.

Thankfully there was no surgery to be done today, only an evaluation under anesthesia to see how Mackenzie’s eyes are doing post surgery. We were the first appointment of the day with a six o’clock check-in time, not my favourite time of the day, but thankfully it means less waiting.

Dr. Capone came out to discuss the findings and we even got some cool pictures of Mackenzie’s retinas to keep. It reminded me of those little ultrasound pictures you get. As I expected, Dr. Capone wants to do another surgery on Mackenzie’s right eye. That eye still has more scar tissue and he thinks more can be done. Due to the fine detail type work that this surgery will be, it is high risk. However, the terrific news is that he feels he can take that risk because the left eye is doing so well.

As you know, we’d been seeing changes in Mackenzie’s light perception, but we’ve also at times thought he might be responding to shadow and movement. When we described some of our observations, Dr. Capone was cautiously kind of excited (as much as a very calm, collected guy can be) because there have been times when Mackenzie has actually reached for a light in someone’s hand. What we didn’t know is that apparently that to reach or make a grasping motion usually indicates some awareness of form, not just light and motion.

So though he can’t give us guarantees and Mackenzie’s full visual potential might not be reached for at least a couple of years (it’s a growing process), things are looking very good at this point for the left eye! The truly ironic thing is that the doctors at Sick Kids had been very cynical about the prognosis of Mackenzie’s left eye. Hopefully, with a second surgery, that right eye will do just as well!

When we come home, I just need to finish up our paperwork for our funding appeal and we will be having to make an appointment to get a prescription for glasses as Dr.Capone thinks that Mackenzie is at a point that he would benefit from them. We’re sorry we can’t make it to Mackenzie’s “Legends of Love” benefit tonight, but we hope that everyone has a terrific time and knows how very much their efforts to help Mackenzie continue to get treatment for this very rare condition with the best possible doctors truly means to us.