We here at www.aperfect.rocks are SUPER excited to have a guest post this month! Let me introduce you to the lovely Nicte Mack, who rocks special needs parenting with not one but *two* kids with challenges (which you immediately forget as soon as you meet them…because they are 67 flavors of AWESOME.)
When she posted her Wall of Memories on Facebook, I knew I had to tell you about it! Read on!
Dear Families,
We are the Mack Family: Marcos, Nicte, Diana and Lourdes, and we live with some very extraordinary circumstances. The day my oldest daughter Diana born, our world was turned upside down: something was very wrong but the only thing doctors could tell us was that she had “developmental delays”. For years we knew there was more, but it wasn’t until she was thirteen that she was finally diagnosed with Cohen Syndrome; a rare genetic condition that affects only about 1000 people worldwide. For Diana, it means she’s got an intellectual disability, neutropenia (a weak immune system), retinitis pigmentosa (a progressive degeneration of the retina eventually causing partial or total blindness), hypotonia (low muscle tone), skeletal system issues, speech delay, and autistic-like behavior. In spite of all that, she’s got a beautifully cheerful disposition, a natural curiosity about science, and humble attitude. When Diana was not quite four, I found out we were expecting again. We were overjoyed, until an ultra sound showed spina bifida (a condition where the spine does not form properly) and hydrocephaly (water on the brain.) In Lourdes’ case, it means she doesn’t have bowel or bladder control, sensation is impaired from the waist down, she uses a wheelchair most of the time, and has endured 9 surgeries. And many times she has literally faced death when the shunt that controls her hydrocephaly has become blocked.
All this sounds very dramatic (and it can be!), but it also makes us realize how lucky we are when we’re not stuck behind hospital walls fretting over an emergency. In spite of all of their challenges (and sometimes because of them), both girls have blossomed into amazing young women: Diana loves her science and nature studies and Lourdes has become a wheelchair athlete, actor, and even won the title of “Little Miss Wheelchair”! They’ve already accomplished so much in their short lives. We also realize that their health can sometimes be fragile, so when they’re feeling good, we go out explore! It’s our way celebrating and being thankful for the healthy times.
The Wall of Memories
Some years ago, Diana had a teacher who had them bring a Weekend Journal in every Monday. It included whatever they’d collected over the previous week. The kids could bring in flyers, pictures, menus or anything else that could tell their story, and Diana loved it! She was able to retell her weekend by making connections with the items she’d found. She enjoyed this so much and was so vitalized by it that we decided to display it on a wall instead of keeping it in a book. From there, it grew into a family affair; a place where all of us could add adventures and review great trips every time we needed a boost. It’s also been great for Lourdes, who has memory loss issues. Once she realized she could reconnect with happy times by using it, she was very motivated to add her own memories. We start a new one every year!
Building Our Wall
Every January, we look for events and plan trips. We like to be explorers! Also, Lourdes is a wheelchair athlete, so every time she goes to an event we find out what’s nearby and start discovering. Diana is all about museums, forests, and nature. I love historic places and my husband likes novelties, so we take turns when choosing adventures. Then, we try to find great deals and pack food (because hey, let’s face it, travel is not cheap!) That way, we don’t break the bank.
A Little Extra Planning
It’s great fun making sure everyone is involved in the planning, but deciding on your destination is only one part of the process. The reality is that it’s different traveling with a person who has a disability and while it’s a challenge to go out with a wheelchair on your right and a walking cane on your left, it’s not impossible. You know your child, so make sure you plan things out as much as you can. Call ahead, ask questions and make sure you have a check list with you so you don’t stress over forgetting something vital. It will lower your aggravation factor and leave more time for fun! And finally: if it’s possible to travel with help, great. BUT…don’t let that stop you from getting out there on your own! I’ve done it many times! I just take extra precautions: I travel in daylight, have lots of supplies in my car, AAA emergency insurance, a fix-a-flat system, and a jumper cable. And, I know some basic car repair stuff (which we should all know!) The longest trip on my own with the girls lasted 10 days, all the way north to Chico, CA, then down to San Francisco and through Napa Valley. I wouldn’t have missed it for the world!
Here are some of the places we’ve been this year:
Bringing It All Home
Once you get your mementos onto your Wall of Memories, you’ll be amazed at how they lift you up when the tough stuff happens. It can transport you as a family (or you on your own) back to those great times. And it’s a great reminder to start planning the next adventure!
Believe me, those memories can be a powerful motivator to keep planning ahead when health challenges arise.
Life is short, health is never guaranteed and this world has so much to offer. Your next adventure is waiting for you, so get out there and explore!
When she posted her Wall of Memories on Facebook, I knew I had to tell you about it! Read on!
Dear Families,
We are the Mack Family: Marcos, Nicte, Diana and Lourdes, and we live with some very extraordinary circumstances. The day my oldest daughter Diana born, our world was turned upside down: something was very wrong but the only thing doctors could tell us was that she had “developmental delays”. For years we knew there was more, but it wasn’t until she was thirteen that she was finally diagnosed with Cohen Syndrome; a rare genetic condition that affects only about 1000 people worldwide. For Diana, it means she’s got an intellectual disability, neutropenia (a weak immune system), retinitis pigmentosa (a progressive degeneration of the retina eventually causing partial or total blindness), hypotonia (low muscle tone), skeletal system issues, speech delay, and autistic-like behavior. In spite of all that, she’s got a beautifully cheerful disposition, a natural curiosity about science, and humble attitude. When Diana was not quite four, I found out we were expecting again. We were overjoyed, until an ultra sound showed spina bifida (a condition where the spine does not form properly) and hydrocephaly (water on the brain.) In Lourdes’ case, it means she doesn’t have bowel or bladder control, sensation is impaired from the waist down, she uses a wheelchair most of the time, and has endured 9 surgeries. And many times she has literally faced death when the shunt that controls her hydrocephaly has become blocked.
All this sounds very dramatic (and it can be!), but it also makes us realize how lucky we are when we’re not stuck behind hospital walls fretting over an emergency. In spite of all of their challenges (and sometimes because of them), both girls have blossomed into amazing young women: Diana loves her science and nature studies and Lourdes has become a wheelchair athlete, actor, and even won the title of “Little Miss Wheelchair”! They’ve already accomplished so much in their short lives. We also realize that their health can sometimes be fragile, so when they’re feeling good, we go out explore! It’s our way celebrating and being thankful for the healthy times.
The Wall of Memories
Some years ago, Diana had a teacher who had them bring a Weekend Journal in every Monday. It included whatever they’d collected over the previous week. The kids could bring in flyers, pictures, menus or anything else that could tell their story, and Diana loved it! She was able to retell her weekend by making connections with the items she’d found. She enjoyed this so much and was so vitalized by it that we decided to display it on a wall instead of keeping it in a book. From there, it grew into a family affair; a place where all of us could add adventures and review great trips every time we needed a boost. It’s also been great for Lourdes, who has memory loss issues. Once she realized she could reconnect with happy times by using it, she was very motivated to add her own memories. We start a new one every year!
Building Our Wall
Every January, we look for events and plan trips. We like to be explorers! Also, Lourdes is a wheelchair athlete, so every time she goes to an event we find out what’s nearby and start discovering. Diana is all about museums, forests, and nature. I love historic places and my husband likes novelties, so we take turns when choosing adventures. Then, we try to find great deals and pack food (because hey, let’s face it, travel is not cheap!) That way, we don’t break the bank.
A Little Extra Planning
It’s great fun making sure everyone is involved in the planning, but deciding on your destination is only one part of the process. The reality is that it’s different traveling with a person who has a disability and while it’s a challenge to go out with a wheelchair on your right and a walking cane on your left, it’s not impossible. You know your child, so make sure you plan things out as much as you can. Call ahead, ask questions and make sure you have a check list with you so you don’t stress over forgetting something vital. It will lower your aggravation factor and leave more time for fun! And finally: if it’s possible to travel with help, great. BUT…don’t let that stop you from getting out there on your own! I’ve done it many times! I just take extra precautions: I travel in daylight, have lots of supplies in my car, AAA emergency insurance, a fix-a-flat system, and a jumper cable. And, I know some basic car repair stuff (which we should all know!) The longest trip on my own with the girls lasted 10 days, all the way north to Chico, CA, then down to San Francisco and through Napa Valley. I wouldn’t have missed it for the world!
Here are some of the places we’ve been this year:
- San Francisco
- Muir Woods
- Sausalito
- Napa Valley
- Calistoga (Petrified Forest and Old Faithful Geyser)
- Rose Parade
- Hearst Castle
- Solvang
- Cambria
- Ragged Point
- San Diego (Old Town, Sea World, San Diego Zafari)
- Wrightwood (Mountain High Ski Resort)
- Disneyland
- Big Bear
- Lake Arrowhead
- Camp Paivika, at Crestline, CA
- The Painted Turtle Camp, at Lake Hughes
- Camp Got Friends, Redondo Beach
- Ability First Wheelchair Sports Camp
- Chico, CA
- Manteca, CA
- Oakland, CA
- Huntington Beach
- Santa Monica Beach
- Venice Beach
- San Juan Capistrano Mission
- Lancaster Air Show
- Medieval Times Show
- Tribute to Kiss concert
- Challenge Air for Kids (aircraft flight experience)
- California Science Center
- Shane’s Inspiration Gala
- Challenged Athletes Foundation Gala honoring Robin Williams
- Infinite Flow Showcase
- Life Rolls On Adaptive Surf and Skate
- Star Wars Convention
- Festival of Tall Ships in Marina del Rey
- Air Show in Lancaster, CA
Bringing It All Home
Once you get your mementos onto your Wall of Memories, you’ll be amazed at how they lift you up when the tough stuff happens. It can transport you as a family (or you on your own) back to those great times. And it’s a great reminder to start planning the next adventure!
Believe me, those memories can be a powerful motivator to keep planning ahead when health challenges arise.
Life is short, health is never guaranteed and this world has so much to offer. Your next adventure is waiting for you, so get out there and explore!
Beautiful Sisters: Lourdes & Diana Love,
Nicte Mack
**************
Didn’t I tell you she was amazing?
And look! The perfect music to listen to while you’re building your Wall!
Nicte Mack
**************
Didn’t I tell you she was amazing?
And look! The perfect music to listen to while you’re building your Wall!
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