Here we are. Little ol' Akron, Ohio.
I hope getting here was the hard part.
Over the last week, Makayla came down with a 102 fever. I was so scared that we would have to cancel the surgery, but just 24 hours before leaving for Akron, she broke her fever, and we were back on!
I knew traveling with a toddler on my own would be a challenge. I certainly know what an amazing help my husband is. and not having him here would be rough. Our first flight from San Francisco to Philadelphia, was better than I expected. Although we didn't arrive without tears, Makayla was mostly happy and cooperative throughout the flight. I was lucky enough to be seating next to two model-skinny German ladies, which left me plenty of room to contort and stretch with Makayla in my lap. Our most embarrassing moments included when she threw a handful of pretzels at the man sitting behind us.
And then we got off our plane.
Once, I was off the plane, I realized that either my plane got in late, or it took the passengers more than a half hour to deboard...and I needed to sprint to our next flight, from Terminal C to Terminal F...which requires taking a an actual bus to get there. People paid no attention to the woman with a baby and a stroller, plowing over us and pushing us right out of their way. Once we were off the buss, I sprinted, with a backpack, a purse, a laptop, and toddler and a stroller from Gate 7 to Gate 37. Everyone one who knows me, knows what a joke that is. I hate running, and I'm definitely not fast!
Dripping sweat, like Dave Matthews in concert, I rushed to my gate, only to find out that there was a delay! Ok, actually that was great news. It was only a short delay, and that meant I have enough time to get Makayla a diaper change, clean myself up, and find some apple juice. No time for lunch though...and we didn't get breakfast either...
As soon as I get back to the gate, we start boarding. I'm happy to find that the person I'm sitting next to on this very teeny tiny plane, is quite possible, the nicest man I've ever met. He is showing me pictures of his two daughters and playing peek-a-boo with Makayla. Things are going great. Just after take off, my new friend heads to the bathroom, and by the time her gets back, Makayla is in full meltdown mode. It must have been her ears. She didn't have a problem on her five previous flights, but that, combined with way to many hours of confinement, and hunger was the perfect recipe for disaster. She kicked and screamed all the way until the pilot announced that we would be starting our final decent, at with point she finally passed out from exhaustion. I was that mom. I cried.
As the passengers exited the plane, I apologized, and every single passenger told me how beautiful Makayla was and that she did great. When I apologized they told me to stop and that they didn't mind a bit. The ones that were near by and heard me telling my seat neighbor the reason for our trip to Ohio, all told me how they wished the very best for his surgery and offered prayers. I burst into big sobby tears right there on the plane.
Ohio-ians are possibly some of the nicest people in the country.
Finally 13 hours into our adventure, we arrived at the Ronald McDonald House of Akron. Before I could even get all the way in the door, another mom here to see Dr. Hertle offered to help me to my room with my things (Another example of why Ohio-ians are the nicest people on the planet!). We talked for a bit, and I learned that her son recently had the same surgery Makayla will be having and I told her how excited I was to meet another mom who has been through what our family has been through. Looking at her son's blue eyes, it was the first time I have ever seen someone else with Nystagmus.
My goal is to keep this blog updated over the next 10 days that we spend in Akron, so you can see how surgery went, and how she is handling recovery. Tomorrow, i want to get a video posted of Makayla's nystagmus, as it is now, prior to surgery.
It's a little after eleven here now, but only 8:20 p.m. at home. I just got the little girl down to sleep, and I think I will be happy to join her.
Surgery is Thursday!
As Makayla Sees It
Tuesday, July 31, 2012
Thursday, July 26, 2012
Nystagmus Walk
If you follow our blog on facebook, you may have heard me mention the upcoming Nystagmus Walk a few times. But, in case you haven't, or if you want more information, here I go again!
In April 2013, the very first Nystagmus Walk will be held in Nashville, Tennessee. The goal of the walk is to raise money for the American Nystagmus Network, as well as raise awareness for what is a fairly common (1 in 1,000) visual impairment.
The Walk's organizer pointed out that "nystagmus" is recognized as a misspelled word in Microvsoft Word and Google. She would like to see that changed and to raise money for research. Some of the things that I hope raising awareness will do are:
The Nystagmus Walk has a facebook page. Please make sure that you visit the page and "like" it to get all the important updates! They are also currently working on a project where they need pictures of eyes. If you or someone in your family has Nystagmus, please take a photo of your eye, and one for each person in your family and email the pictures to nystagmus.eyes@yahoo.com to be included in the project!
In April 2013, the very first Nystagmus Walk will be held in Nashville, Tennessee. The goal of the walk is to raise money for the American Nystagmus Network, as well as raise awareness for what is a fairly common (1 in 1,000) visual impairment.
The Walk's organizer pointed out that "nystagmus" is recognized as a misspelled word in Microvsoft Word and Google. She would like to see that changed and to raise money for research. Some of the things that I hope raising awareness will do are:
- Make all ophthalmologists familiar with the condition, and it's possible causes and treatments.
- I would like for pediatricians to know enough about nystagmus that they never tell another mom nystagmus means that their child is probably blind.
- I want doctors to not assume that because a child is fair and blond, that the nystagmus is because of albinism
- I want people with nystagmus to be able to get treatment in their own community without having to travel.
- I want to know that Makayla will not be made fun of in school, because kids will already know what nystagmus is.
The Nystagmus Walk has a facebook page. Please make sure that you visit the page and "like" it to get all the important updates! They are also currently working on a project where they need pictures of eyes. If you or someone in your family has Nystagmus, please take a photo of your eye, and one for each person in your family and email the pictures to nystagmus.eyes@yahoo.com to be included in the project!
Friday, July 20, 2012
Welcome to Holland
Today, my friend Amy, of Through the Eyes of Liam shared a poem on her mommy blog, The Naptime Memos, which was written by a mom of a child with special needs on what it's like to parent a child with a disability.
I know that we are very lucky that Makayla's "disability" may never actually disable her. But this poem still hit my heart hard, and triggered those big weepy tears. It brought me back to those first few weeks after she was diagnosed with nystagmus, and they told us that she was probably blind. They sent us home to wait for appointments with specialists, and told us to look for her to track items in her visual field to determine if she could see or not.
I went home that afternoon and laid her on the couch and hovered over her. I made faces and waved my hands in front of her. I cried and told her how sorry I was. My tears litterally fell onto her cheeks as I looked at her.
While I waited for my husband to get home from work, I cried and convinced myself she couldn't see anything. I tried to imagine how I could possibly parent a child that would experience the world so differently from me. I wondered if her vision problems would cause Austin to be neglected. I wondered how I would treat my little girl the very same as her brother, if she couldn't see or do the things he did. I worried that she wouldn't be able to share in her father's love of baseball.
For weeks, all those fears raced through our heads over and over. We were convinced that she was entirely blind one hour and partially sighted, the next, until we finally had our meeting with Blind Babies in April 2011 when we finally, at four months old, were able to see Makayla track a red pom pom in front of her, and reach out for it. ...whats the opposite of a heart break? My heart soared and my eyes filled with tears. We didn't know how much she could see, but at least she would know my smile.
Like the poem, I still feel like our flight was rerouted, but I can honestly say, that the pain has gotten better. Sure, a huge part of that is that we now know Makayla sees better than we first expected, but a lot of it has to do with the amount of knowledge I have now, and the amazing connections I have make in the low vision community. I finally have my Holland guide book, and am finding my way around. I know what tools I need and how to get them, and I know some amazing locals. Holland, isn't so bad!
WELCOME TO HOLLAND
by
Emily Perl Kingsley.c1987 by Emily Perl Kingsley. All rights reserved. Borrowed from:
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
I know that we are very lucky that Makayla's "disability" may never actually disable her. But this poem still hit my heart hard, and triggered those big weepy tears. It brought me back to those first few weeks after she was diagnosed with nystagmus, and they told us that she was probably blind. They sent us home to wait for appointments with specialists, and told us to look for her to track items in her visual field to determine if she could see or not.
I went home that afternoon and laid her on the couch and hovered over her. I made faces and waved my hands in front of her. I cried and told her how sorry I was. My tears litterally fell onto her cheeks as I looked at her.
While I waited for my husband to get home from work, I cried and convinced myself she couldn't see anything. I tried to imagine how I could possibly parent a child that would experience the world so differently from me. I wondered if her vision problems would cause Austin to be neglected. I wondered how I would treat my little girl the very same as her brother, if she couldn't see or do the things he did. I worried that she wouldn't be able to share in her father's love of baseball.
For weeks, all those fears raced through our heads over and over. We were convinced that she was entirely blind one hour and partially sighted, the next, until we finally had our meeting with Blind Babies in April 2011 when we finally, at four months old, were able to see Makayla track a red pom pom in front of her, and reach out for it. ...whats the opposite of a heart break? My heart soared and my eyes filled with tears. We didn't know how much she could see, but at least she would know my smile.
Like the poem, I still feel like our flight was rerouted, but I can honestly say, that the pain has gotten better. Sure, a huge part of that is that we now know Makayla sees better than we first expected, but a lot of it has to do with the amount of knowledge I have now, and the amazing connections I have make in the low vision community. I finally have my Holland guide book, and am finding my way around. I know what tools I need and how to get them, and I know some amazing locals. Holland, isn't so bad!
Friday, July 6, 2012
Less Than a Month To Go
Before this month is over, Makayla and I will be on our way to Ohio for her surgery! Our flight is booked, and our room is reserved at the Ronald McDonald House. We'll be in Ohio for 10 days, this time, and Makayla and I will be going on our own.
I feel confident that this surgery will make a huge difference in Makayla's life, but that isn't easing any of the anxiety. Traveling to Ohio with my husband's help, in April, was a huge challenge, so traveling with her on my own (and while she is recovering from surgery) is going to be exhausting. Judging by how hard getting a new set of molars has been for her over the past few weeks, I am anticipating that the recovery from her surgery will be grueling. For that reason, I am glad that we'll be stating for a week post op, rather than jumping on a plan immediately. From what I have read, the pain is much more manageable after the first three days.
Since getting home from Ohio in April, we have been dilating her left eye in lieu of patching, in preparation for her surgery. We have noticed that since we started doing that, she is no longer using the null point we identified months ago and that was confirmed by Dr. Hertle. I am currently waiting on a call back from Dr. Hertle so see if this is normal, or if it's something we should look into further before proceeding with the null point surgery. In the mean time, I spoke to a woman on the American Nystagmus Network's facebook page, who recently had an eye surgery. She said that during the healing process she was forced to use one eye and that she identified a new unique null point for each eye when they were used independently, which was different from the one she uses when her eyes are working together. Regardless of Dr. Hertle's opinion of her null point possibly changing, we are still going forward with planning the surgery since part of the surgery includes fixing or improving her strabismus and slowing her nystagmus, which is not related to her null point.
So much excitement, anxiety, optimism and hope! I can't wait to see what the next year will hold for us!
I feel confident that this surgery will make a huge difference in Makayla's life, but that isn't easing any of the anxiety. Traveling to Ohio with my husband's help, in April, was a huge challenge, so traveling with her on my own (and while she is recovering from surgery) is going to be exhausting. Judging by how hard getting a new set of molars has been for her over the past few weeks, I am anticipating that the recovery from her surgery will be grueling. For that reason, I am glad that we'll be stating for a week post op, rather than jumping on a plan immediately. From what I have read, the pain is much more manageable after the first three days.
Since getting home from Ohio in April, we have been dilating her left eye in lieu of patching, in preparation for her surgery. We have noticed that since we started doing that, she is no longer using the null point we identified months ago and that was confirmed by Dr. Hertle. I am currently waiting on a call back from Dr. Hertle so see if this is normal, or if it's something we should look into further before proceeding with the null point surgery. In the mean time, I spoke to a woman on the American Nystagmus Network's facebook page, who recently had an eye surgery. She said that during the healing process she was forced to use one eye and that she identified a new unique null point for each eye when they were used independently, which was different from the one she uses when her eyes are working together. Regardless of Dr. Hertle's opinion of her null point possibly changing, we are still going forward with planning the surgery since part of the surgery includes fixing or improving her strabismus and slowing her nystagmus, which is not related to her null point.
So much excitement, anxiety, optimism and hope! I can't wait to see what the next year will hold for us!
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