I sit on a hard chair at a round table.
The light is filtering through the vinyl blinds and the muffled squeals and commotion from the end-of-school hustle and bustle are filtering through in waves from the nearby playground.
Dave sits at my side and we are surrounded by people who know Lucy well.
And it is evident that they love her.
Her beloved teacher. Her vision teacher. The kindergarten teacher. The school psychologist.
We are going over her IEP and her progress from this year. They smile at her obstinacy they have grown endeared to over the three years most of them have known her. They tell me why she didn’t score overly high on a couple particular evaluations they have done to monitor her progress:
“She was on ‘Lucy time.'” They explain, knowingly nodding in unison. Timed tests are not her forte.
They skip nimbly over that and review her exceptional progress: She can write all her letters. She knows all the letter sounds. She can sound out simple words. She is a little artist. She colors in the lines. She’s kind and sweet to others. She is obedient (on her own timeline).
They tell me she is ready for Kindergarten.
Not some integrated program they had said may be a better placement for her at the beginning of the year. She’s ready for the Real Deal as far as they are concerned.
And part of me is elated at that news. That’s exactly what we have worked toward. We want her to be “mainstream.” We want her to be as “normal” as possible. And here they are telling me they think she’s ready. She’s smart.
But another part of me is uneasy.
What if she regresses with different structure next year? What if she can’t keep up with the other kids? How can one teacher with 25 other kids in the classroom help her with what she will need? How can another teacher love her as these women over the past three years have?
It’s all the unknown scrambled up in my brain.
Part of me panics.
They shift over to “the bad news:” an assessment of Lucy’s vision where the prognosis isn’t as bright.
They tell me how she has started shifting her head to see things in front of her more clearly. They relate that she holds things just a few inches in front of her eyes to inspect them. Her color differentiation is deteriorating.
They tell me she is doing well with learning the “scissors technique” to trace the lines of Braille appropriate to her age level. She is learning to use a video magnifier.
They go into the varying recommendations they have for the teacher next year. How she’ll need extra verbalization of visual materials, preferential seating, strong illumination…the teacher must use dark markers for her white board. We go over the possibility of having a “cane specialist” start teaching her how to use a white cane. No, Lucy would detest that.
It’s all useful information except I’m not really thinking about what they’re saying anymore.
Part of me wants to scream. The back of my eyelids start prickling. The room is closing in on us all. I don’t want this to be happening to my daughter. To us. I want her to be normal. I want her to thrive like I see my other children doing.
But then something sparks in me. The Vision Walk flickers into my mind. Hope for all the research coming up and the thought of all the support Lucy has somehow opens up those walls again and I can breathe.
I don’t know what will happen with Lucy’s eyesight. And surely it will not be the end of the world if it continues to fade. She is smart and her strong will will get her through the rough stuff. She’s not nervous when she can’t see. She is already compensating for low vision when she’s in dim places. She’s a fighter and she’ll be fine.
But as her mother, I’ll hold onto every hope I can.
And I’ll always tear up when I think of the outpouring of love from so many around her. Love that I’m sure will get her through a whole lot in life.
Somehow in that small room, on that hard chair, surrounded by people who love my daughter everything is ok again.
The fact that these ladies love Lucy despite her obstinacy comforts me. Her new teacher will just have to love her this much, keep her confidence growing, keep her on this path of progress.
Because she’s Lucy. And those blue eyes of hers are intoxicating. The way she moves her mouth when she tries to express herself. Her funny sense of humor.
But that doesn’t stop my own vision from becoming blurred with those kind ladies surrounding me who care so much. They have changed Lucy’s life forever. So have her therapists. And so have so many others she doesn’t even know.
My heart swells up, the room comes into view again and I know everything is ok.
Perhaps not the kind of “ok” I had always anticipated, but maybe it’s an even better “ok” than I knew to expect. Because I never knew that hard things could bring so much good.
ahhh! I pray for her sweet eyes and am thankful she is progressing. We are familiar with the tilted head… our Nora does that with her eyes that can't seem to get straight, and I read your story and am reminded that I should be thankful for nora's sight. There is a chance we will lose sight in one of hers but I know our road is not as difficult as Lucy's and you inspire me to travel that road a little more gracefully. I am happy that Lucy gets to experience real kindergarten and feel confident she will succeed because your family lifts her up so well!
Have you read the blog "cruisin with cricket". It is my cousin's blog and she is a therapist who is also blind. It is so uplifting and helpful to any of us who struggle, not just with blindness. What amazing teachers Lucy has–what a true blessing.
Never underestimate the power of Lucy coming from a big family. My little sister is deaf. She is number 11 of 11. It just wasn't possible for our entire family to change our lifestyle to accomodate her. So she changed herself to accomodate us. Most of us tried at one time or another to learn sign language, but she doesn't need it! She reads lips beautifully. She has compensated so much because her expectations for herself are a reflection of what she sees her siblings doing. Last week she won a speech contest! She has also written and performed music. I'm not talking about a family who bends over backwards to accomodate the deaf girl, I'm telling you that my sister has thrived in her life because of the examples of her successful siblings. I have no doubt that Lucy will do the same.
I have a blind friend who has done amazing things using the white cane. She even just ran 1/2 marathon, and is now a mother of two…it can really help with independence later on.
Wow, I am tearing up reading this. Not just at the complete sadness for her sight but at the love you have and the support she will have.
I pray they find a cure. And in the meantime, may God bless you and your family with the strength you all need.
I just started following your blog, and I love your family and your style of writing! I am working on my doctorate in occupational therapy (OT), and one area of specialization for us is low vision. I know you mentioned her therapists, but if she doesn't have an OT on her side, she should! We know compensation techniques, environmental modifications, all sorts of stuff! It's a great advantage for her that she has such a great group of people working with her now, rather than later and an OT has the possibility of helping even more (this it NOT a sales pitch, I promise!) 🙂
Keep up the great work – I think of Lucy often during my coursework since I "found" your family!
This was simply beautiful. Thank you for posting.
Shawni, I would say be in the classroom often- go volunteer, see how she's doing, yes- SPY! Teachers always welcome the help and you can be there to see how she's learning, how she's interacting with the other kids, what kind of relationship she has with her teacher, and you can develop your own relationship with her teacher so the two of you can work together to help Lucy as much as possible. I have a kindergartener and a second-grader and I'm in the school as often as possible. I mostly help the teachers with mundane tasks, but I get the added bonus of knowing the environment where my kids are learning!
Also, remember that YOU are her mother, and you know her best- if things aren't working, there are always other options and nothing should be set in stone as far as her education. Things change, you just roll with it and change with them.
As for Lucy, remember she was prepared for this before she ever came here. Heavenly Father certainly made sure she had what it takes to live the life she was going to live, and knowing the kind of person you are, He probably chose her specifically for this life for the example she can be to others. She seems like an amazing kid.
I don't know why I'm writing all of this. Goodness knows you know it already. 😉
I pray for you always. I pray for Little Lucy. God Bless You.
Thank you for this lovely, raw post. You're right, even if the things that we are most scared of end up happening, it will NOT be the end of the world. Will it be difficult? Yes. Will it make us hit our knees? Probably. But it will not be the end of the world. Love that.
This post made me go into the "ugly cry" because I felt this same way a few weeks ago at my little girl's IEP. My little Alice is deaf and has a syndrome called CHARGE Syndrome.
It was so amazing to see all those people that love and help my Alice every day and hear the progress she is making. Thanks so much for sharing, you put it into words so well.
P.S. I love your blog! I started following you after you presented with my sister, Macy Robison, at TOFW in Logan last year.
Welcome to Holland. I am sure you have read this essay (in fact I may have read it on your blog). I have a son who is having some problems and the diagnosis and outcome may change our lives forever, so this really stuck with me. Thank you.
I can't remember how I found your bog, but I've been reading for quite awhile. We don't share religious beliefs, but we do share many of the same values and I appreciate your perspective on life and parenting. I don't know if you have seen this story before, but I found it encouraging when walking the road of pediatric cancer (and now epilepsy) with my youngest son. I hope it encourages you as well. Blessings from He who loves you like no other. Elizabeth
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability (cancer) 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 are going to have a baby, it's like planning a fabulous trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, Michelangelo's 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 flight
attendant 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 guidebooks. And you must learn a whole new
language. And you will meet a whole new group of people you would have never
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 catch your breath, you
look around and notice that Holland has windmills, 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
The pain of that will never, ever, ever go away, because the loss of that
dream is a 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.
Hey Shawni, I'm a trainee teacher and I'm currently in a class with kids who are four and five years old (I don't know what age Kindergarten usually is – I'm in the UK) and I can tell you that everyone does everything they possibly can for children like Lucy, who need just a little bit of extra help sometimes.
There are plenty of kids who have their own education plans within their classes, so even if she can't keep up with the others in some areas, as you fear, then she can still get a great education, tailored to suit her, within a regular class.
Teachers and the other staff at schools want your sweet little girl to be included in everything just as much as you do, and I have no doubt that she's going to do just great. By the sounds of it, she's really doing well, without even taking her syndrome into account.
And as for her sight, from the sounds of it, she's a fighter. Your family and your faith in the Lord is strong enough to help her through, and I don't doubt it for a second.
This is a beautiful expression of your tender feelings. Tuck away this gem, for it will be treasured by Lucy (and you and your husband) in later years. Thank you for sharing it.
Beautifully written Shawni, you and Lucy are both remarkable.
I teared up reading this post. I could almost feel a near despair creeping in as you think of Lucy not living the life you imagined. But I also loved and definitely felt the hope of having support and realization that different doesn't have to mean less. Thanks for sharing your thoughts.
I had to comment on this post because it sounded exactly like what I am going through right now! I have a son who is Lucy's age who has different challenges (he can't walk yet. everything physical is hard.), but yet like Lucy is super smart, intelligent and lovable. He is so unique and so we are struggling right now also to figure out the best place for him to attend kindergarten next year. We are also lucky to have had so many people who love him and have helped him SO much. I am equally thankful for such wonderful people in his life. It can be really hard and I also find myself tearing up a lot lately as we try to find the best accommodations and fit for him. Its nice to know we aren't the only people dealing with some of these challenges. Even though I don't know you I have felt a connection to you through your blog and with similar experiences. Thank you so much for sharing so many wonderful thoughts and feelings!
Even though we've been together non-stop for a few days and talked all around this momentous thing in your ife, it still made me cry to see this so beautifully written as you express your feelings so poignantly as Lucy's mother! When I saw the picture of her holding up that Iphone 4 inches from her eyes it hit me! There is going to be a real issue with Lucy's eyes! Hoping upon hope doesn't always work and I'm ever more grateful for the research and the scientific trials that are going on to try to figure this out. Whatever happens, Lucy is going to be fine! She is one lucky gril to have such an amazing Mother. Love you!
My heart melts every time I see Lucy! I love that girl! Her strong will and determination will help her with any obstacle she may have in life! It becomes more apparent to me everyday that Heavenly Father is in charge and when we seek for his his guidance he will help direct us on our path no matter how bumpy or how difficult it may be at times! You guys are amazing parents and Lucy is so lucky to have you and Dave. She has made such great strides because of your love and faith. Thank you for your amazing example and sharing your sweet thoughts! Love ya Shawnalee!
I love that you share this with us. You feel comfortable sharing such intimate feelings with us. And I really love and feel for you.
Listening to Ronald A. Rasband speak about his grandson in the April General Conference made me think of you, your family and Lucy. I read of all the hours of work and fund raising you put in collectively to ensure Lucy has the very best life she can have. I am inspired by how honest you are with your pain at any changes that will challenge both your family and especially your little girl but also salute how also how proactive you are. Lucy is in the very best hands with your family and her life will be full and joyful come what may.
I just started following your blog…I have read and reread about Lucy's diagnosis and as a Mom, my heart breaks.
You also show so much genuine perspective.
At around 12, I was diagnosed with PXE (psuedo xanthoma elasticin) My parents were told that I would be blind likely by my mid 20's. Walking would be difficult due to the breakdown of elasticity in the viens…and oh yes, forget about driving, working, having children…because in addition to the blindness there were a multitude of bleeding/hemorraging issues that went along with the prognosis.
Well…I'm 34. My eye sight is still intact, although I do wear contacts and my prescription likely rivals that of a very elderly woman… 😉 I have near daily leg aches but if walking hurts, I've found that walking MORE – helps. 🙂 My biggest pride & joy are my THREE amazing children. I had slight complications with each…and after #3 was especially hard, I was told "No more." But for what I have I am grateful beyond measure.
My diagnosis used to cause me such anxiety and fear. The thought of losing my vision made me physically ill…I would become nearly claustrophobic from the thought of the 'lights going out' on me.
Although I will inevidibly lose my sight some day…I gather around me all the GOOD that has gone on in my life. The odds I've beaten.
I look at my 34 years and the friends I've lost at a moments notice to car wrecks..or friends and their spouses currently dealing with cancer diagnosis and I remind myself that although dim in it's prospects…there is still Light at the end of the tunnel. God is so gracious and never gives us more than we can handle. I believe that. Truly.
I read this blog..and I read about Lucy and I find myself hopeful and clapping a Praise for the Lord that He chose YOU to be her mother!He equipped YOU with the heart to be her biggest cheerleader…her fondest ally…her largest comfort as she champions her way through this beautiful life!!
Thank you for sharing. It was absolutely inspiring.
Wow Shawni, that is so hard. I'm tearing up for you. What a blessing to have all those sweet teachers in her life. Hang in there.
That was beautiful. Love your ending sentence.
It's because of you and your positivity that I now encourage my children and proclaim most days ” we do hard things in this family”. Hard things are important, thank you Shawni, keep loving and living xo
Thank you for sharing this very sweet post! Savannah's IEP meeting will be coming up very soon. Her teacher has said that she will be placed in a small special needs class. I have all kinds of mixed feelings about this. I am comfortable with this dissension because she would just get so lost in a normal kindergarten class, and I know that she needs the special extra 1 on 1 help. It is really hard for me though to realize all that this means.
But, Savannah is also surrounded by teachers, therapist, and family who love her and want the best for her. I am so glad that Lucy has that too! I know that where ever their life roads take them, they will do amazing things!
Tears. I'm so touched by your "perfect brightness of hope" for Lucy and I mourn her hardships with you. xoxo
How grateful I am for the beautiful way you can express your feelings. Loving you and Lucy, I have so many of those feelings but would never be able to express them so beautifully. When I read what you write, the tears flow and my heart connects with yours. I love you both so very much!