Lucy’s vision is declining rapidly.
Sometimes I roll with this realization as it inches more fully into view. I find things to be grateful for and I cherish what vision she still has. I feel like I need to be strong for her and everyone else. But I have been a little bit of an emotional basket-case lately. School work is becoming increasingly difficult. She knows how to do it, but it just takes her so long. She can’t see the words on worksheets and quizzes, but acts like she does and claims she does not need help. One thing her Braille teacher said in our last IEP meeting really rang so true to me and Dave: she just has such a deep hatred for her syndrome that it makes her repel anything related to it. She tries to keep a wide girth from those who may offer her special help. It just makes my heart ache for her because she wants so much to do well, but she just can’t seem to let anyone in to help.
Junior high isn’t the easiest of times for anyone, let alone someone who is suffering to see. She is so social but her friends are passing her up by leaps and bounds. They have babysitting jobs and their own cell phones and soccer tournaments and cheer tryouts, a fully different world from Lucy in so many ways. Oh, they are so good to her, but it is so deflating to hear her call and text (on my phone) friend after friend, each one with a different conflict.
This last weekend my heart was wrapped around hers over and over again. It was a rough one. She came home so sad after getting some horrible grades on some tests she studied so hard for. After she exhausted her list of friends to invite over and no one was available, the two of us worked on putting together her birthday Lego set. I had wondered why she hadn’t finished that project yet since most of the time when she gets Legos she gets right to work. As we worked together I realized she can’t see the instructions any more. Nor can she tell the colors or shapes of the ones she needs to find in those piles. That thing that she has loved for so long and she is losing grasp on being able to do it. Tried to tuck that down so I didn’t break down and bawl, and instead I took her out to dinner and read her book club book for a long time (Dave was out of town so she was a great date).
She gave me the biggest impromptu hug when we finished and snuggled for a minute. Which is like gold when it comes to Lucy.
The rest of the weekend was filled with the same things. Little things like how she accidentally sprayed cooking spray in her hair when she was trying so earnestly to help me with dinner and not being able to see her math paper right in front of her to bigger things. Too many things to go into in a blog post. Things that make the future seem dark and ominous. I had my fair-share of tears over it all with Dave later. And Lucy shed her own.
This is a hard thing.
Sometimes a seemingly impossible thing.
But I know she can do it. We can do it. And we’re learning every day with nudges and prompts as to how.
I love this painting by Caitlin Connolly:
It is called “She Became Herself With Tears.”
And that just speaks to me right now.
Can we become ourselves without them? Maybe not. Maybe that: those stumbling blocks and sorrows, those “seemingly impossibles”…our “tears,” are what makes all the “becoming” happen.
I hope we are learning the things we are supposed to. And that those tears will help make us stronger as we keep soldiering on to find new ways. New alternatives. New hope.
I do know one thing for sure: I am the luckiest to be her mother. Through the tears and the smiles, she makes life beautiful.
This made me cry.
It must be so hard for Lucy to go through this & for you & your family to watch it.
Remembering you all in my prayers. x
Thank you so much for this. I have a child with struggling health issues as well and I’ve been up half the night worrying about it. These words were exactly what I needed to hear this morning. Prayers to all of us who ‘find ourselves through tears.’
Oh Sarah, I somehow missed responding to this the first time I went through, just wanted to send you some love and encouragement as you strive to work on those health issues. May you be guided in the right directions to figure things out.
Hi Shawni! I’m so sorry to read this. Thinking of you, and your family, and especially of Lucy. You may have found this YouTuber before, but maybe she’ll be a source of comfort for Lucy that she can have a normal life. Her name is Molly Burke and she’s legally blind: https://www.youtube.com/channel/UCwf9TcLyS5KDoLRLjke41Hg She vlogs all about makeup and dating (eek!) and all of those types of things.
Lucy may be ready to watch this now, we’ll have to give it a try, thank you for the suggestion!
From one mama to another: I can’t even imagine the pain.
I wanted to mention my children have a school teacher who is blind. He teaches music for the entire elementary and my 5th grader is taking another class from him called “Life Without Sight.”
He doesn’t have an aide to help him. (I was certain he would!) He leads the school band and orchestra (again, unassisted) and learns all the children by recognizing their voices. I have been so amazed by him and the stories he tells my kids are incredible. He is a husband and a father.
My purpose in sharing this is in hopes that it may soothe your soul a tiny bit in knowing there are others who are doing remarkable and “normal” things with their lives.
Thank you for sharing this, what an inspiring man he sounds like he is. I hope Lucy can find a path like this and feel fulfilled as it sounds like this wonderful teacher does. Love hearing this.
Heartbreaking…..sending all of you love and hugs.
I know you have been creating experiences for Lucy to do while she can still see for a long time. Now that the window of opportunity seems to be closing so quickly, I’m wondering what else is still on the “seeing bucket list” that hasn’t been done. I’d be so tempted to pull her out of school and travel and do and go for a few months.
I’ve always thought that Lucy is blessed to be in such a loving, thoughtful, supportive family. XOXO
Oh you know me well…I am always thinking through these scenarios. But it’s so important for her to have her helpers in school here where she feels comfortable so it’s a tricky balance. Feeling so grateful she’s been able to see so much, and love that she references all these things, especially the ones she was hesitant about, with so much love and gratitude.
OH this breaks my heart. Thinking and praying and sending all the love, hugs for your family.
On a semi-related note, I am so very glad you guys took that incredible Africa trip this summer, with her able to enjoy it properly!
I’m so grateful every day for that as well. Thank you for the love.
As a long-term reader I appreciate the honesty and vulnerability you share in your posts.
I’ve never commented before but this struck a chord with me. Recently I’d been struggling with many challenging emotions. On a trip to Utah I connected with an old friend who had been through a similar experience. It was so helpful to spill out all my frustrations with someone who could truly understand. We find strength and comfort in community. Does Lucy have any friends with vision issues? It must feel so isolating for her at times.
Good luck with everything. My heart aches for that sweet girl.
Yes I think it is so isolating in so many ways. She doesn’t have friends with vision issues, right now she is struggling so much to be “normal” and to fit in. She is even hesitant to reach out to others we have met in our BBS community which would be so helpful to her. But I hope at some point she will be able to find friends who share some more similar issues and that they can be a strength to each other.
Just love and support your way. I’m sorry you are all suffering. If any family can turn the ashes to beauty, it’s yours. You got this, and HF has you both.
Sending love. Lots of love. I know I don’t know you or your family but she’s amazing and will become an amazing adult. I have trichotillomania and middle school was so hard for me too. I hated it and hated being so different but I wouldn’t change my experiences for anything. She has exceptional support (even if she doesn’t want it right now) but she knows it’s there and that’s what matters.
Thank you for all the love! I know some day she will be able to look back and be grateful for all her experiences. Sometimes, when she is in a good mood she can already see the blessings. But it’s just a rocky road.
…and really, that rocky road is ok…just a little emotional at times, you know?
This post was so touching. Thanks for sharing and hugs to you ❤️
They have some sets that incorporate Braille as well as some sets that people have translated as well. So sorry.
Yes people have mentioned those before and Lucy is so resistant to anything to do with her syndrome, including Braille right now. She used to embrace it but now it is grouped in with her syndrome and she is repelling it:(. Maybe now is still a good time to try though, as the vision is dwindling so quickly.
Sending so much love and prayer to your family, and particularly to Lucy. I have to imagine that it is the totality of her syndrome that makes her rapidly losing sight even harder to manager. She is lucky to have you and Dave and her wonderful siblings, and all of you are so lucky to have her. Right now though, as a longtime blog reader from the opposite coast, my heart breaks for Lucy.
Thank you Molly. Sometimes things like this sure make you feel so inadequate as a parent, but we are all learning so much in this journey. And you’re right, we are so very lucky to have Lucy, love her and all she is teaching me more than I can say.
In the words of one of Lucy’s favorite musicals…”There is suffering the words don’t reach/There is suffering too terrible to name/You hold your child as tight as you can/and push away the unimaginable”
I think whenever a child is suffering, the parent feels inadequate – no matter how tight you hold she’s still going through this.
(Not to say that Lucy is in some helpless situation or that BBS is the worst sort of suffering, or that people who are blind are any less than people who are sighted. But still…she’s been dealt a hand harder than most).
I’m so sorry Shawni. I love Lucy. She has inspired me with her perseverance and bravery. Just this morning I came across this site http://legofortheblind.com/. If I understand it right this man is blind and has transcribed several Lego set instructions so that each step is precisely listed and you just have a screen reader read the steps to you. I don’t know if that will help Lucy. Tell her she has a lot of fans around the world that love her and are praying for her. You are doing a good job Shawni. Big hugs!
Oh I love that there are things like this, and good people who make them available. We will try that for sure.
What a wonderful thing to do! I’m so glad there are people out there like this.
I used to think Motherhood was a science – If you put all the correct pieces into the equation, BOOM perfect kids, perfect family. But I am learning that motherhood is an art, and there is no equation. I have loved several of the other comments and have been reading a book by Leonard Sax where he talks about how essential it is to be surrounded by good examples, specifically how boys need strong men examples and girls need strong women examples in order to become strong men and women. But I also think that is true with illnesses and disabilities. It is so helpful to personally know someone with the same condition (or at least similar symptoms, like blindness) who has come out stronger on the other side. Anyway, I’m a long-time reader who’s never commented before, but my heart goes out to Lucy! Hope Lucy can find friends old and young who can relate to her. And oh, middle school is just the worst!!
Thank you McKenna. It is interesting we were just talking with a counselor last week and she was telling us all the same thing as you’re explaining from that book. Maybe I need to read it. Sometimes kids look to the adults in their lives and wonder “is this ok?” “am I ok?” and I think it’s so important for us to let Lucy know that it’s more than ok. And I think she really feels that. She is going to go great places in life and do wonderful things because she is strong and good and so very competent. It’s just the journey of figuring it all out that is so tricky along the way.
Crying some tears with you. This is a heavy challenge to bear- for Lucy, for you.
Just loving you from across the country. Becoming ourselves through tears is usually the toughest way, but also might let us see most completely who we are. te pup!
Love you Sydney!
Oh Shawni! I’m a complete stranger but I’ve watched your kids grow up and admired your deliberate and loving parenting (and learned SO much from you!). I also have a daughter Lucy’s age who loves Legos and so that part of your post really struck a chord with me. I know you are fighting fiercely for Lucy’s independence and she is so incredibly lucky to have you and Dave on her team.
Ten years ago I went to a baby shower for a girl who had been one of my MiaMaids and struck up a conversation with the woman next to me, who had her seeing eye dog lying quietly at her feet. She had been the high school honors English teacher for the girl we were celebrating at the shower, and she was just this fascinating woman–so witty and interesting and self-possessed. A few years later she was honored as our state’s teacher of the year and I loved how her blindness was completely incidental to the discussion of her as an exceptional teacher. It was an interesting little tidbit rather than what defined her. Your family is giving that same gift to Lucy.
Oh I love inspiring stories like this one, thank you for sharing. xoxo
I’ve read your blog for years, and have always appreciated your posts. I think what has made me come back over and over, is that you are also facing something really hard with your child, where there is no cure, or sometimes answers. Its painful to watch a disease or sickness take things from your child, and feel helpless to protect them from it. Its definitely a heartbreaking experience as a parent. My daughter is chronically ill, has been for 8 years. She has no friends, (thankfully she has sisters who adore her), but it’s been very hard for her to make friends with low energy and illness. It breaks my heart a lot, I totally understand your suffering. I think crying is important in the process, we have to grieve for our children, it is just the natural thing to do, it is also how we move forward. I would like to recommend Sara Groves music. I love how Sara’s writing taps into that part of us that is universal. I think a few of my favorites by her is, “Why it matters”, and “Floodplain” I hope her music gives you comfort, it does for me. Music, Art, nature, connect with us so much in what it means to be human. So grateful for art, music, and books. They have gotten our whole family through some tough times.
I just told Alexa to play Sara Grove’s music and it is so good, thank you! Sending you lots of love on your own journey, the crying and the joys, all part of the journey. Sending hugs for your sweet daughter.
We listened to this all morning yesterday, SO good. I think it will become part of Lucy’s music repertoire requests for Alexa 🙂
That’s so hard! I hope she eventually learn to love braille and the other assistive technologies that will bring her freedom and independence. When friendships and school are a challenge it’s especially wonderful Lucy has a whole army of cousins, aunts, and uncles who love and support her. There’s no friend like a sibling or a cousin! And that’s true for adults as well as kids!
So true. She (and we) are so lucky to have so many who love so unconditionally.
I am a long time blog reader and have nothing to offer in the way of personal experience or advice. I can only offer sincere empathy to you all. The strength of your immediate and extended families and the love around you all will I hope enable you all to keep going one step at a time to support your darling girl. You are so right though that there are times when tears will be shed, and they need to be. Thinking of you all.
This post really made my heart ache. Please know that there are people out here supporting you and Lucy and your lovely family. We aren’t walking the walk with you but we are cheering you on…and sending good vibes.
Thank you for sharing your heartache with such a large audience. This is a painful burden I think many of us special needs moms can resonate with. The older my autistic son gets, the more I see the gap widening between his peers in a lot of ways you mentioned- filled up social calendars, etc. I do think one positive from my whole experience is being able to be so much more empathetic to those struggling , and I imagine you have developed this as well. It’s easier to have grace and compassion for those families with particularly challenging children. I admire how you continue to advocate and look for ways to connect with her. Love to you!
Becky, sending love to you and your son on your own journey. I so agree with the empathy, I hope our whole family are gaining that empathy to reach out to others who are going through their own struggles. Because we all have them, big and little. And we all need each other.
I’m so sorry this is so painful. It’s so hard to watch our kids struggle. I have a question. Does she have an IEP to provide learning accommodations for her? I have a son with some mental health issues and we have accommodations for him. I’m sure she probably does, just curious why she’s still doing worksheets and things? Not trying to be critical, just curious.
Good question. Yes she has an IEP and teachers and helpers who are all so willing to make any learning accommodations for her. She just doesn’t want them and refuses to use most of them. We are working so hard to help her realize they will help her learn so much more, and they are there to help her but she is so resistant and insists she wants worksheets and quizzes the same as everyone else. 🙁
I get it believe me, they want to just fit in and not be different than anyone else
My heart goes out to you. Mom to Mom. May I suggest an experienced counselor well versed in people dealing with a change in abilities. Hopefully someone outside the school environment. As even the most well meaning school counselor or special ed Teacher is not trained to help in these matters. I would look into summer camps and same age support groups for Lucy that would offer insight, guidance, inspiration and above all friends. I know, my child has an IEP. We have been there, she is an adult now. Wish I would have reached out sooner for her…and for me, as well, as having a parent support group is also needed. It would have helped and would have spared many tears. Think about it. Will keep you in my thoughts and prayers. Lifting you and your family.
We tried a counselor who didn’t work a while ago, but have been led to one who I think is going to be a perfect match. It was not easy to get her to accept an appointment, but we gave ourselves a couple weeks to work to get her ready and she finally agreed to open up and go. She came out so happy. It is a huge step and I am so grateful and anxious to keep her going on this to help her in her journey.
Many times it takes awhile to find the right match with a counselor. Fingers crossed. Teens are fickle about opening up to a “stranger”, as you know (no need to preach to the choir here). Keep positive and looking forward to hearing about an afterschool group and summer camp where Lucy has close friends. It will happen. For now, take a deep breath and feel blessed with all this Mom support being given to you (I know you do). Enjoy the gift of time …many hugs. 💖
My heart goes out to you. Mom to Mom. May I suggest an experienced counselor well versed in people dealing with a change in abilities. Hopefully someone outside the school environment. As even the most well meaning school counselor or special ed Teacher is not trained to help in these matters. I would look into summer camps and same age support groups for Lucy that would offer insight, guidance, inspiration and above all friends. I know, my child has an IEP. We have been there, she is an adult now. Wish I would have reached out sooner for her…and for me, as well, as having a parent support group is also needed. It would have helped and would have spared many tears. Think about it. Will keep you in my thoughts and prayers. Lifting you and your family. Take care.
Thank you for sharing. It was very brave of you. My heart goes out to you. Mom to Mom. May I suggest an experienced counselor well versed in people dealing with a change in abilities. Hopefully someone outside the school environment. As even the most well meaning school counselor or special ed Teacher is not trained to help in these matters. I would look into summer camps and same age support groups for Lucy that would offer insight, guidance, inspiration and above all friends. I know, my child has an IEP. We have been there, she is an adult now. Wish I would have reached out sooner for her…and for me, as well, as having a parent support group is also needed. It would have helped and would have spared many tears. Think about it. Remember what we go through, helps someone else down the road. Will keep you in my thoughts and prayers. Lifting you and your family. Take care.
This breaks my heart. Sending lots of love your way!
When I heard these stories on the news I thought of Lucy but held it in my memory for when the time was right. It looks like other people are also sharing the same information.
Thank you so much for the links, sounds like just what we need!
The community you built is right here, behind you, crying with you but also cheering you on. Lucy can’t ask for a better family. I pray for your pain to lessen and for Lucy’s strength.
Love you Shawni.
Sending lots of love to Lucy and your whole family.
Sending you love and keeping you in my heart. You and your family and so very brave. Thank you for sharing your story.
Thank you for sharing your story. I too have a child with struggles and my heart has felt like it is breaking a lot lately as well. It’s just nice to know we are not alone.
Tears. You share and care and I am just a person viewing from outside and want you to know you are being thought of today with love and comfort. Your beautiful Lucy too! Prayers your way.
Oh gosh,I read through so many of these comments through tears. Kylie, you’re so right, sometimes it just feels good to know you’re not alone. I know there are so many people who go through so many varying struggles in life. Some day I will write about my “finding grace” class I am loving so much. It is filled with so many women who at first glance you would think they don’t have a care in the world, but then we get to talking and people spill out the most heavy burdens they are carrying. I think that is what life is all about in so many ways: learning how to climb the rocky roads that come our way. (And reaching out to help others do the same.) And the road seems almost impossible without others in our “corner.” Thank you for being in my corner and Lucy’s too, and for all the love shared here. Sending out love to your corners too. May we all remember that even when we feel alone, God is always there. And the struggles are part of the design to make us stronger. And to ultimately bring us closer to Him. I think Lucy has a more keen awareness of that than most others I know, and that is a beautiful thing.
Thank you again for the love. It means so much.
Thank you for sharing your journey with us. Sending much love to Lucy. I would bet that she has other senses beyond her eyes that are above what others have. It’s like she’s “Daredevil” a blind superhero who uses his other senses to fight crime and injustice. She is a superhero to me. I know I’m just Abby’s Aunt, but I just want to say..Aunt Lisa loves you Lucy. <3 Shawni, you are amazing. Truly. I feel so grateful I've had this chance to get to know you and your family.
I’ve been following Lucy’s story for quite a while and my heart is with her and your family. The process of loosing sight must be terribly difficult because it’s a continued adaptation with an impending end point. Does Lucy have any blind friends? Maybe, if she spends time with blind children who are otherwise ‘normal’ and are able to engage in fun, adaptive activities, this may help her see that while blindness is a challenge, life and all the fun things in it don’t have to end or become impossible, rather it simply changes.
Yes I am looking into that. She doesn’t have any blind friends, and is so averse to reaching out, but I need to keep helping her try.
I grew up with a good friend who was blind since birth. (Very limited vision actually) She went to a wonderful camp called, “Camp Bloomfield” every summer. (They actually filmed at that camp for the movie “MASK” with Cher. My friend knew Rocky as a camp counselor there.) She could not wait for camp every year. She met so many other visually challenged young people from all over the world. To this day she maintains those friendships. (She and her husband are both visually challenged and had 5 children. They met at camp as kids.) When talking to her she said having a “tribe” of others who were in the same “Boat” was key to her self worth. Unfortunately Camp Bloomfield burned down during the LA fires last year. There are many others you can look on Youtube and see stories about.
Hi Shawni. Please please reach me via email on njerikan@hotmail,com.
I really want to share some information with you on something you may want to try.
Please email me if you can
My one child, my son has special needs.
Why is it we expect or others expect and keep saying to us parents that our different child can be “normal” or they will be exceptional, like Rainman, Hellen Keller or Stevie Wonder.
She needs hobbies that don’t require sight. She needs adaptive technology to take the place of her sight. Instead of reading music she needs to learn to play by ear. She needs the rest of the world to adapt to her for a change Why must the person with the challenge be the one to leap over hurdles to adapt to the ordinary typical people? She needs to be moody cause she is at that age. Parents need to grieve cause it’s just sad and once in a while it needs to come out. She needs routine and a sense of control and some space to be mad. Her world is spinning. At the end of her life all we do to micromanage her environment won’t be enough. At some point it will be up to her.
Her world can’t only be full of other latter day kids, kids from the mainstream class or the occasional play date with a kid who has her exact rare condition. Please google special need youth recreation and your general area.
I think we are all actually encouraging her to be different and to embrace the “not normal” but it’s a difficult time for these preteens and man, they sure don’t want to stick out. She wants that music, she wants to leap the hurdles and she is as stubborn as they come. It’s a tricky balance. I think maybe we’re right in the middle of it and things will start to shift, but this moment right now is a tricky one.
I can’t imagine how difficult this must be for Lucy (and you and your family). As I read your blog post I was reminded of this scripture: JST Heb. 11:40 “God having provided some better things for them through their sufferings, for without sufferings they could not be made perfect.” I am especially struck with the phrase “better things for them through their sufferings”. It will be amazing to be on the other side of this life and understand a little better what our trials in this life were all about. No doubt we see glimpses now, but it will be amazing to see the whole picture some day. I’m cheering you guys on!
Thank you for sharing that scripture, I love it and those thoughts. I agree that it will be interesting to some day look back with more understanding of what these “sufferings” and “tears” are helping us become.
What a post full of so many tender emotions. My heart ached and some tears were shed as I read through such a post. I am sorry. How I wish I could make everything better, but I know who can help carry !Lucy, and your sweet family with this seemingly hard transition. I know there is true peace in Christ, and he will make up the difference. Maybe not now exactly, but one day for sure. I can’t think of a better family, tribe, or situation for Lucy, as I have followed along all these years. There is a reason for everything, even though I may not have all the answers to give. One day all will be well. For now, and always, I am sending extra care, support, and prayers your way with this journey for Lucy, you, your husband, and family. You’ve got this!!
Cheering you on. I know growth will come rising from the ashes to beauty!
Thank you for this post. Such raw emotions. I too have a special needs daughter. She is just one year old. I think about the future a lot and the things that she won’t be able to do. But right now all I want to do is snuggle her with some kisses and worry about tomorrow’s issues when we get there.
Hi Shawni, I have read your blog for ages and never commented, but you have taught me so much about motherhood and I have used you as an example for intentional parenting. Lucy has such a servant heart, maybe setting her up with someone with vision impairment and letting Lucy be the mentor for another may be another approach. She has managed so well on her own figuring out so many things and her guidance, advice, and support may be beneficial to another, at the same time allowing her to connect with others in similar situations and maybe helping to breakdown her resistance to things associated with her syndrome. She seems like such a sweet, caring, loving young girl and I will continue to pray for her and your family as you continue to navigate down this uncharted path.
Shawni, have you heard of Molly Burke? She’s a popular youtuber who is blind. Her videos are positive and fun, and help to normalize living with blindness. Maybe someone Lucy could look up to and feel connected with?
Hi Shawni! Does she have an Alexa? We recently got a few for our home and love them. One is hooked up to our SONOS speaker, which is AMAZING! Rather than searching through our phone for songs, the weather, podcasts, timers, time, math help, etc, we simply ask alexa and she really helps us out! It keeps me from constantly looking at my phone, but I think that Lucy may love the access to the information without having to constantly look things up. Sending so much love and support your way. You are the BEST Momma on the Planet for her!!! She is so fortunate to have a mom like you!
Yes she does and it is the BEST. I often wonder what in the world she would do without it! (Of course, she’d manage, but it’s the best!) I realize I should have added that to my “favorite things” post!
Everyone else, THANK YOU for all the love and thoughts and suggestions and more love. Sending love right back out.
I am asking you again to email me. I want to share with you some information that could potentially be of great benefit to Lucy.
My email is: firstname.lastname@example.org
Hey Mary, I emailed last week, darn it, it sounds like you didn’t get it. I’ll try again, maybe I got the email address wrong. Thank you for reaching out.
I did my MA in France with a blind fellow student. You wouldn’t believe how she navigated the metro, the old buildings, hosting dinners in her tiny Paris flat, the busy street crossings, and her French choir rehearsals. She’s since earned her PhD and is a professor. Lucy is destined for great things. That doesn’t negate the anguish of this transitional time, though.
These stories are so inspiring. I so hope that Lucy will keep this hope and stubbornness going so that she can do great things too. It’s tricky because she has so many syndrome factors mixed in with the vision loss that complicate her progression but I know she’ll find her own way and will shine in her own personal way when she finds it.
I feel your pain in more way’s than one! Daniel struggles socially now that he is out of school and in the working world. I wish it could be a topic at the conference next year – socialization! Are there any school’s for the blind in your area? As her vision diminishes more they close themselves off from that world and then enter another world – hopefully one where there are more like her. It was a real game changer for Daniel as hard as it was for me to let him go – we all grew from it! Praying for all of you!
Hi Julie! So nice to hear from you! We are looking into the local school for the blind. She’s just at a tricky development stage right now but she will figure it out just like Daniel continues to do. He is such an inspiration!
Hi Shawni. I have been thinking about this post & decided it was time to reach out.
My daughter (who is now 42 years old, a mother of two daughters, aged 3 & 1) was diagnosed with Stargardt’s (juvenile form of macular degeneration) at the end of her 9th grade year of high school. Gosh…. it was such a bleak time to be her mom. I felt responsible for her vision loss (which I could not have prevented), and we had to be quick on our feet to figure out how to navigate retinal specialist appointments, how to help our daughter adjust to talking about her vision loss with teachers, friends & family, and the dreaded IEP’s! But, we muddled through, one day at a time.
The rest of high school was challenging…. her friends were all getting their driving permits, she had to lug around large print textbooks, testing (SAT’s & ACT’s) were problematic, her eyes were always fatigued from trying to use the little vision she had left, and she developed chronic headaches.
She didn’t know any other blind people. She didn’t like being different – test accommodations were frustrating because other students thought it was unfair she got more time and could take her tests in a quiet room. They didn’t realize how long it took her to read the materials, then find the spot on the scantron to mark her answer. All they knew about my daughter was that she was a hard worker & smart (she was ranked 13th in her class of 500+ students). Fortunately, she developed a thick skin, figured out strategies for keeping up with her classes (mostly AP classes) & (like Lucy) avoided help from the special ed department. But, it was a physically exhausting time for all of us.
Two events changed her perspective. First she was nominated to attend the California Youth Leadership Forum (a statewide youth conference for “differently abled” students) the summer before her senior year of high school. She flew (by herself) & came home a week later, a different person. She met students who were deaf, had cerebral palsy, were blind or had limited vision, lived with chronic illnesses, diabetics, speech impaired, and she realized she was part of another community…. physically or differently challenged. Eye opening! She learned advocacy skills. How to become a Dept of Rehab client in order to access resources she would need for college and beyond. She met & was mentored by a man who had a similar vision challenge. She got to talk with others about how they managed their lives “differently”. She began to blossom.
The second event required her to actually open up to people about her challenges… she chose to trust her AP English teacher and her high school counselor. They KNEW she wanted to go away to college. She had to figure out what she wanted (& needed) & began to accept their help. Her counselor told her she’d have to transition from reading large print books to becoming an auditory learner in order to take college courses. Her AP teacher worked with her to fine-tune those listening skills in class. He worked with her on her computer skills, which were pretty elementary at the time. By the end of her senior year, she had applied and been accepted at all four of her college choices. She chose Stanford University, a 3.5 hour drive north of our house in San Luis Obispo County. It was the beginning of her next educational journey. Actually, I think she felt some relief at leaving our community & going someplace where she would be a “student who happened to be blind.” Growing up in our community, she was always trying to navigate her world as she had when she had vision. It was just too exhausting, physically, mentally, and socially.
I could share more of her story, but, the point I’m trying to make is that MOST LIKELY Lucy will experience a defining moment & her worldview will broaden. She will understand that it’s ok to DO THINGS DIFFERENTLY. She has a wonderfully supportive family, friends & community. When she has a chance to connect with other differently challenged teens, she will begin to understand how to manage her life differently. Yes, it will be hard! But I have no doubt she will be successful in whatever she puts her mind to.
If you ever want to chat with my daughter, she works for the American Foundation for the Blind in Arlington, VA. She landed her dream job as the Executive Director of Public Policy and Research, just 18 months ago. She completed her JD at UCLA-School of Law (specializing in Public Policy & Advocacy), and decided she just wasn’t interested in corporate law, and took the route of non-profit and advocacy work. She might be a resource for you and Lucy! She’s walked the same path Lucy is navigating right now.
Oh Christine, I read this through tears, thank you so much for sharing all this love and encouragement. It means so much to me. I do so hope Lucy will realize it’s ok to do things differently. Actually, I know she will. But you’re right, it’s a process for sure, especially as we navigate the other syndrome-related delays intermixed. What you said made me realize sometimes it just takes patience and time as we watch it all unfold. Thanks again for reaching out and sharing, I may take you up on contacting your daughter!
There are some things that we cannot change. It was very difficult to accept. I found understanding through art. You showed a picture of Caitlin Connolly. This is one way to share your experiences. I do not have a teacher and I myself find information on painting techniques via the Internet – https://drawingfan.com/best-watercolor-paints/ I have enough perseverance not to give up and draw every day to become better.