Wednesday, April 27, 2011

doctors and experts

This is how Lucy colors lately:When I see things like this it makes my heart clinch up tight.

It makes me sick to my stomach when harsh reality hits that she needs to be that close to her coloring book to see the details of what she's doing. It makes the idea of vision loss loom too close and realistic for comfort.

It makes my heart sink that the doctors she visits are never-ending, and that she needs glasses (a tell-tale sign of the vision loss that seems to be inevitable with her syndrome).

I usually make the things surrounding Lucy seem lighthearted and fine here on this blog because mostly they are. Yes, we have a daughter with some serious health issues that have and will affect her and our family forever after. But we realize that these things are really an amazing blessing to us. Sure, they're tough. But we have already learned and grown by leaps and bounds having Lucy around. We all adore her with all our hearts.

But I've had a tough time being the eternal optimist with all that goes on around Lucy lately.

It all started with trying a new doctor to help make sure she was getting every nutrient and vitamin possible to help her growth and development. You see, we have a friend with a child with the same syndrome who is doing phenomenally well. She is not overweight and she is calm as a summer's morning. Her parents felt that the reason she was doing so well was because they had her on these supplements that have made a big difference.

Lucy was doing fine at the time, in fact, actually progressing quite well. But Dave and I don't want to leave any stone unturned of possibilities to help Lucy reach her highest potential. So although it took us a year searching for the "right fit," we found a doctor who could test her "levels" and make sure she was on track with what her body needs. After some testing we found that indeed, Lucy's body is not on track (duh, we already knew that), but we started her on some supplements hoping to further help her already great progress.

Instead of helping Lucy progress more though, the supplements drastically changed her moods and disposition. She regressed back to her constant tantrums and non-communication. At first we didn't put the equation together that it could be the supplements causing the problems. I mean, who would have thought that vitamins and herbal supplements could make that big of a difference? But finally we matched together the timing of all the regression and the introduction of the supplements and found out that Lucy was going through what they call a "detox" period.

Now, who knows how long "detox" lasts...I'm sure it's different for every child. But the problem is that now we can't seem to differentiate between what is "detox," what is normal four-year-old behavior, what is just part of feisty "Lucy"-ness, and what is part of her syndrome. We can't make heads or tails of what is working and what isn't. And it's thrown us into a tail-spin.

We are still doing the supplements (we want to give them a good, valiant effort), but sometimes I wish we would have never gone down this road.

Of course, if we didn't come down here, we'd always be wondering "what if" when we looked back.

I want to clarify that in no way am I saying the supplements are bad, or the doctor is bad, or that we are sad we tried something that has caused such an upheaval. This turn in our "help" for Lucy may prove to be the best thing yet. But right now in the midst of it all it just seems dark and dreary. We don't know which way to turn. What works for another child even within the same rare syndrome category may not be the right answer for Lucy's needs. Each case is so completely different.

We went to one eye doctor while Lu was in the midst of the the worst of her "detox." He told us she needed glasses but I was skeptical for a couple reasons: 1) I didn't want to believe it, and 2) how in the world could he have known that she needs glasses when he only got the chance to look into her eyes for less than a fraction of a second in between her crazy tantrum antics?? So I took her to another doctor for a second opinion. He also recommended glasses but a different type and at a completely different prescription.
It makes me wish I were an eye specialist.

In the meantime we have found another doctor who is of completely different realm of thinking who's bluntness and theories I have fallen in love with. The good news is that in the little interaction we've had with him he has given us a boost. It's like a little pat on the back to validate all that we are doing, and that feels good. The bad news is that he and his practice are dissolving because of all the health-care cuts. It just seems that there are dead-ends everywhere we turn.

But what Dave and I discussed on our way home from our last doctor appointment is this: It's time to buckle down and take all this information we have gathered from the myriad of different doctors we have visited and experiences we have had, and become the experts we must become. Sure, we have already utilized our own sweat and tears to get this far already, but we realize we have a long way to go.

A lifetime in fact.

And all that seems so daunting.

Sometimes I just feel like I want to be done with the fight. I want to take a rest. I'm sick of insurance calls. I'm sick of doctor's waiting rooms. I'm sick of filling out endless doctor forms. But as Lucy's parents we are the only ones who know how to fight the fight in the first place. We are the only ones with the right pieces (that we've gathered from far and wide) to put together Lucy's puzzle because we adore this girl with all our hearts. The truth is that no one is going to miraculously come put things together for us. It's the same with our other children. They all have their own puzzles. But Lucy's looms largest in front of us on a day-to-day basis.

The reason I'm writing this is not to say "woe is me" nor to compare what we deal with to things others do that seem so much tougher in comparison. Everyone has their own things they go through whether they be on the surface or deep down inside. I guess what I'm trying to get at is that we all need to become experts in the individual issues that comprise our own unique circumstances to come out triumphantly from the tough things that come our way.

I'm writing this because I want to be able to come back here in the future and remember the struggles. Maybe it will all be more smooth-sailing some day. Maybe we will wonder what all the fuss was about. I want to remember that although we fail on a regular basis, we are struggling and trying our very, very best to help this girl of ours. We don't have all the skills to help her, but we're trying to surround ourselves with people who do.

After the motherhood retreat I went to last week two moms came up to me who both have children with special needs. One asked me with tears streaming down her cheeks when the pain and sadness would go away. When will she ever be able to just go to the grocery store or the park or the school without some little inanimate thing reminding her of her son and making her cry? I stood there in the swell of women around us laughing and talking in their own corners of the world and my mind was blank.

Because I don't know the answer.

We've known about Lucy's syndrome for over two years and I still cry on a regular basis. A friend won't want to play with her and it'll rip my heart in two. I'll try a new dress on her that makes her look bigger and the prick behind my eyelids will start again. I'll try to lug her 52 pounds of kicking-ness to the pool for her swim lesson and want to bawl that she's just so different.

But I don't. I go right on doing what needs to be done. Because no one else is coming along to do it for me and I have to be strong for her. For my other kids. For Dave.

To those sweet, good-hearted mothers dealing with some of the same issues as we are, I'm sorry I don't have an answer. I assume it will be like this forever. There will probably be something almost every day to remind us of what our children don't get to have, or don't get to do, or don't get to understand. There will probably be little reminders just as often of things that have changed and will change in our family because of the unique issues we face. Our children will be different. Our husbands will be different. We will be different. There will be lots of bad, dark, sorrow in our future.

But I am convinced that the light will win and will drown out the darkness. The good things will outweigh the bad. The things we have learned from Lucy have changed us all in ways I would never, ever trade. No, I think we'd all agree that we'd take her and her bundle of issues again any day of the week, even with all the heartbreak. Because she has taught us things we could have never learned any other way. She has taught us to appreciate things we may have never noticed without her. And she has made us stronger and more compassionate in so very many ways.

Even through the sadness that comes along with the job, she has given our eyes a unique twinkle. I've seen it in each of my children and in my husband. And I've felt it in myself.

Most of all I've seen it in her.

And that twinkle that lights up the room when she smiles makes it all worth it.

53 comments:

MemeGRL said...

What a great post...I have a jumble of thoughts...the first two are:
1) we have a beloved nephew with a triple diagnosis of Asperger's, pervasive developmental delay, and low IQ (borderline MR). And it is a fascinating dance to try to figure out which issues he faces on any given day are attributable to any of these diagnoses, or are they just "him?" We can get so caught up in the special needs that we forget--beyond the labels he is his own unique self too. It's a trap we all fall in to. You do such a nice job avoiding that, seeing through the diagnosis to the jewel that Lucy is, just as you do for your others at other (perhaps challenging) stages. Hang in there and keep going, because it can be hard to do.
2) A friend with a child who is autistic likes to say, "When you've met one kid with autism, you've met one kid with autism"--meaning, same diagnosis = very different kids. And it sounds like maybe Lucy & her syndrome are the same way, and her constitution is uniquely her own as well. Good luck as your family works on finding out what will keep her healthiest and reaching her fullest potentials!
Thank you for your blog--you are such an encouragement to me with my family. You are kind to share yourselves in this way. Wishing continued blessings to you all!

Momza said...

I'm the Mom of a special-needs son. He's 25 now, but I remember when he was just a little guy--we went to Phoenix Children's Hospital every day for three years M-F. As I sat in the waiting rooms with a dozen other parents and their special-needs children--some of them walking with walkers, others in wheelchairs, others with needs too obscure for me to really figure out why they were there--I'd look down into my son's beautiful light blue eyes and wonder what category his needs would eventually fall into? Would he walk with a walker? Alone?
Ever? Or would he be in wheelchair? My young mother's heart would well up with tears wondering what the future held.
I didn't listen to the neurologist or the physical therapists who tried to define my son's future.
I let my son do that. I supported his efforts in any direction, celebrating every tiny success, and learned more from his presence in my life than any other person in the world. He has led me--thru low valleys of despair and grand vistas of joy. His beautiful blue eyes see much more than I could have hoped. His needs exceed my abilities right now, and I have to trust that this too, is part of Heavenly Father's plan for him, and me, and our family. There is no "one right way" to deal with special-needs children. But there is great hope and assistance available to all parents who love their children. That hope comes from our Savior who loves us all so much.
"Do not be weary in well-doing."

MollyE said...

Thank you for this post, it was beautiful and inspiring.

Sydney said...

Such hard and painful things seem to turn us inside-out and leave us hanging upside- down. Then, magically, out of no where, we have those precious moments of reflection and insight,and those hard and painful things give back to us some of the puriest and sweetest joys.
Continued prayers for Lucy and all those involved in her life and her health.

Christina said...

So beautiful, Shawni. I love what you said towards the end about learning lessons through Lucy that you couldn't learn any other way. That is the most amazing part about any trial. We have a Heavenly Father who tailors those experiences just for us to teach us the things we can't learn any other way. And as hard as they are, they became treasures to us because of our growth.
Prayers continue for your amazing family. Thank you for your example of committed parenting. It's truly inspiring!

Sonya said...

Thank you so much for sharing so much of your family--both trials and triumphs. Before this post I had not realized how much work was involved in Lucy's health condition. I am amazed at all of the work you do, not knowing the outcome. You are an inspiration, and I hope that things improve with Lucy's condition.

Caroline Green said...

Thanks Shawni once again for sharing the realness of your situation even though it's so hard. You can always lay it out honestly yet still be uplifting and positive. It is those traits that are blessing Lucy. She is such a magical girl, so amazing!

Amy said...

You are such an inspiration to me! When I think of what others are going through, my own problems seem so small and insignificant. You and your darling family are in my prayers! Lucy is so blessed to have you as a mother! And what a blessing little Lucy is for you! Stay strong.

dresselfamily.blogspot.com said...

I agree what a great post. One thing that immediatly sprung to my mind was, wow, is Lucy ever inthe best of hands with you been her mom. She couldn't be in better hands. Your love and dedication is so inspiring. I have a daughter with OCD. It took me along time of fighting for her, for someone to take it seriously, that she wasn't just going through a phase, or that is was normal. I would not stop until i found out how i could help her. We found an amazing doctor, who blessed us all, Especially Grace, and the child she is today, might not have been the child she would have been if i had not fought. You go girl! Lucy is soo so sweet. I can't imagine the heart break that you go through, but i can imagine the melting of your heart when she does something oh so sweet. my prayers are with you!

sarahandmatt said...

Thanks for this post. We have been trying for years to become "experts" on a few seemingly undiagnosable behavioral issues with our son. Sometimes we feel like they are so minor, we should just let him fly under the radar and see if he outgrows them. Sometimes they are so obvious we are determined to find a doctor somewhere who can tell us what to do. I guess the bottom line for us has been the spirit and our parental instincts telling us when to let things slide and when to jump in and get aggressive. When to let him just live life and when to put life aside to focus on the real issues. At this point, we have been to tons of doctors and still haven't gotten to the bottom of it. But we'll keep on trying. He's worth it.

seven smiles said...

i'm sorry.

i just had a little breakdown last week, longing for and mourning for a future that probably isn't possible for one of my children.

i give way to the breakdowns every so often. but then i buckle down because 1) all in all, i'm very lucky and 2) i have to. like you said, "no one else is coming along to do it for me and i have to be strong for [my child, my other children, my husband]."

Michelle said...

I needed this. I've been struggling with different things concerning my 19 month old who also has an eye/chromosomal disorder. Somedays (like today) I want to throw in the towel and be done. Thank you for reminding me of the blessing he is and the things I can learn....and most of all that it's ok to be frustrated and disheartened but to keep on going. I love your blog, good luck with Lucy, she's a doll, as are all of your children.

Shari Goodman said...

Beautiful and I am so there with you. I realized a year into Dr.s with Tate that I also was the expert, not them. This is a hard thing to put on your shoulder's. But, we get inspiration that no Dr. can get. You are exactly right. We need their information but we have to research it all ourselves. It is always the "what if's" that gets me. I want to make sure I did everything I could and then whatever comes is fine. You can have peace in knowing that that is what you are doing for Lucy and that she is in Heavenly Father's care for whatever he has in store. That is the only peace I have when I think of the challenges we will face.

Thanks for always sharing words that uplift and teach. You are just what Lucy needs.

Heather said...

Shawni,
I am in awe of your eloquent posts. Thank you for letting us readers in on your journey. My heart breaks right along with you sometimes and please know that your family is in my prayers often. Little Lu is just the sweetest and I always see a little twinkle in her!

Alexa Grant said...
This comment has been removed by the author.
bailey grant said...

my dad can help lucy get some nutrition. he has created miracles with his supplements. if you want to see his website it is DivineNature.com we actually live in Mesa so this might help you as well.

if you have any questions, just email me at bailey.grant@live.com

hope this helps!

Sarah said...

Shawni I sometimes forget what struggles and doubts and worries you face with sweet Lucy, because you are ALWAYS so positive. That first picture just makes me cry for you because as a mother I know what panic and sadness it would induce in me also.
There is no doubt in my mind that whatever Lucy's potential is, she will go above and beyond it, with you as her mother, Dave as her father, and her loving supportive siblings helping her along the way.

Barb @ getupandplay said...

I have a lot of compassion and love for your family!! This is such a great post- I hope it comforts you in writing it and in the future- but I know it will be a comfort and inspiration to many parents! It inspires me as a mother and my challenges are not nearly as unique or difficult, but I really need the reminder that I can be the best advocate, expert and help for my child.

Ruth H. said...

Oh, Shawni, thanks for sharing your feelings. I think there are a lot of other mothers out there who can mirror similar concerns and feelings about their own children who don't fit into the pattern the world declares normal.

It's okay to spend some time mourning the loss of normal. It's even okay to do that more than once. Mourning does not mean you don't love Lucy, or that you aren't strong, or that you don't have faith. It just means that you need a little time to adjust and put some balm on the wound. You're a mother--a good mother--and no good mother sees her child struggle without having her heart break. Acknowledging that is part of the healing process.

I can relate. For every moment that I think, "I've got this. I can handle it," there is another in which the enormity of a looming, unknown future hits me and knocks me for a loop. But somehow, I get up a little stronger. I just try to keep remembering that beautiful painting by Greg Olsen, the one with the Savior helping the little children over the boulders.

Deanna said...

thank you for sharing your struggles. It's never easy when you have a child that is different, but oh what a blessing they are!! Will lift your family up in prayer as your journey continues!

P.S. My special girl has Sturge-Weber Syndrome.

Jill said...

You truly are a mother with great hope. I believe that will get you through your darkest days. That, and the immense love your family continues to encircle Lucy with. You are so strong and I admire you for that.

melissa said...

I am praying for you & Dave...that God leads you to the right doctor & that you both have peace about what needs to be done!

Amber said...

I read this with tears in my eyes. My son was diagnosed with autism just over two months ago, so reading your words was like reading everything that's on my heart and my mind right now. Thank you for writing this.

Marci said...

Thank you for this post...I don't have a special needs child, but I loved what you wrote about moving forward and appreciating the changes that come with trials you are given. It is just what I needed to hear today, so thank you for listening to the prompting to write...I feel like it was just for me!

Brooke said...

You are inspiring! I love reading about your beautiful family and how you are able to cope with such a demanding trial. Lucy is perfect and even she inspires me. My prayers are with you.

Sherri said...

With my 3-yr. old diabetic daughter, I often feel like I was tricked or trapped into this, just like you said, you want life to stop or be normal again(whatever that is).

It is a lot of hard work. For mom, especially; I give the shots, test her, figure out the right dose for such a little person. It scares me, though, to think she'll be going off to school someday, doing it all by herself.

And I'm not so good at not looking at others and comparing trials. Ugh. So hard but, yes, I do know that someday we will all look back and see what we learned and how far we've come.

Brooke said...

OH! Also, I was wondering if you had ever thought about looking into doTERRA essential oils for Lucy. If you can find a knowledgable person in your area, or do some research yourself, I bet you might find some oils that would help. My family is in love with them! There's something for every ailment, physical and emotional.

Christa Johnson said...

I just wanted to say how close to home this post hit for me. And our thoughts are so similar. The breast cancer I have been battling has spread to my lungs, stomach, around my heart and now into my brain. Part of me wants to just give up because I am so tired emotionally and physically. But then I see my young family and I know I have to fight. I have to fight for myself. And fighting means seeking out a lot of help... nutrician, medical, etc. You have to do it for yourself and it is hard and you have to fight against everything. But you are the best person to know Lucy and you will be guided as her mother.
My husband gave me a blessing recently saying that Christ is closer to our family now that he has ever been and that we are growing so much because of this hardship. And I see that soooo much. My children are closer to us. We just concentrate on family, etc. So we feel sooo blessed!!
Just keep up your good work and thank you for feeling comfortable enough to share it with us!
Love, Christa Johnson

Julie said...

What a beautiful post Shawni. Lucy is so lucky to have you and Dave as founders of "Team Lucy." You can handle this and her twinkle that you described is proof of how you are exactly the mom she needs you to be!

-Julie

S said...

what a beautiful, albeit heartbreaking, post. I am so sorry for your struggles - Lucy is lucky to have all of you in her corner. And it is sad that families coping with illnesses and special needs have to be their own advocates. If you have worked with your insurance company and not gotten anywhere, I would keep trying - sometimes you will find a nurse advocate that will make a huge difference so don't give up on that route.

all I can think of when reading this that I'm not faced with even a fraction of what you are facing and I fail my children every day in meeting their individual needs. kudos to you. and the other word that strikes me is something on another blog that really resonated with me yesterday - Fortitude - that is what we as moms need.

Rachel said...

I just needed to say thank you for this post! It has helped me realize that I am so not alone in facing these types of challenges. Your feelings are almost an exact mirror of mine but you put them so eloquently! I have a son who is about Lucy's age who also has a rare diagnosis - meaning doctors know nothing. We definitely have to be the experts of our children. No one else knows them like us! Thanks again - love your blog!

Elizabeth said...

You may have seen this before, or maybe not. It was written regarding parenting a child of special needs, but when my son had cancer, I found it uplifting. I hope that you do as well.

Welcome to Holland

I am often asked to describe the experience of raising a child with a
disability (special need,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
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 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
planned."
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.

****Author Unknown****

Nichole said...

Thanks for the sweet heartfelt post! You are Lucy's biggest cheerleader and she is so lucky to have you as as a mom!
It is amazing all that we can learn in the most trying times! I guess that is why we are here right?? Lucy is such a blessing to your family and those that know her! My heart melts every time I see her!

KYLIA said...

Wow! You are such an amazingly tough and tender woman...I shall dub you "TNT!" I think sometimes we are given these tests and trials (there's the 'ole TNT again!) because the Lord knew that we could handle it. He has a lot of faith in you...and thankfully you have a lot of faith in him, and at the end of the day, that's really what is gonna get you through it all! Hang in the Sister TNT!

Eyrealm said...

Oh Shawni, this made me cry and then smile. I'm so glad we'll have some time together next week. You are simply amazing!

Alexis Kaye said...

this is so sweet. From a strangers perspective (and I totally mean this) Lucy could absolutely not have asked for better parents. Even if all you're doing doesn't have the results you're doing, at least you can find comfort in knowing you did all you could and all you could think of to do. You can do this!

Cortney Chambers said...

I was that mom that came and talked to you---and this was a wonderful post that mirrored a lot of my feelings. I think there are just ups and downs through this process and the foundations of faith keep us going.
Like you said in the post that when the harsh realities hit you, that's when you feel the sadness well up. That's exactly the timing of when I talked to you---some harsh realities were/are coming to light. However, I've realized that those realities are always changing, evolving, etc.
I think the hardest part is not being able to take the pain or hardship away, but in that lies the greatest lessons of the Atonement.
I think it's always easier/helpful to take a step out of the trees and look at the forrest, but being in the trees is sure tough some days!

I don't know that the sadness is ever meant to fully go away and I think that it may come back at random moments in everyday life, like I explained to you. And I think that the sadness is just a natural part of being a mother, no one wants to see their child go through difficult things.

But, I completely agree with you that the joy and the blessings can outweigh the sadness, not just for us as the mom or the dad or the sibling, but most importantly for that child! That child can have joy and happiness too & that's what I needed to finally reconcile in my mind and heart---his life doesn't have to be just like mine or anyone else's to have joy, fulfillment and happiness.

Thanks for the post!
Cortney
www.achambersstory.blogspot.com

Lindsey said...

Just keep swimming. I have a son with Autism, and it is so hard to wade through all of that. I too agree that you need to exercise all options, and you will find what works, and what doesn't, and you are right to give things a "valiant" effort, but if you don't mind, I would be interested in hearing who you are using for your supplements and vitamins. There are many docs that go these routes, some better than others. Maybe you should try another? Or are you using the same ones as the other people who are doing it. Just a thought. . . just like the eye doc, you may find a better fit with the other doc and a vitamin regimine. Just a though. Also, do you read the enlightened homemaker? She would have some EXCELLENT recommendations for you for peeps here in AZ. Really, I call her the GURU. Love her.

Lindsey said...

Oh, haha. She already left a comment. :)

Joelle said...

Shawni, you are an awesome mom and Lucy is very blessed that she was born into your family and not another's. If I ever become a mother, I hope that I will have a fraction of your strength, dedication, and love. Lucy and your family will be in my prayers.

Rebecca said...

Wow. That was so beautiful. I especially loved this that you said:

"we all need to become experts in the individual issues that comprise our own unique circumstances to come out triumphantly from the tough things that come our way."

That really hit home for me.

Are you going to be at the Power of Moms retreat next month? I just registered for it...Saren is my sister's new neighbor and I am excited to learn more about Power of Moms.

Blossom inch said...

oh well, hanging there and may God bless Lucy and your family. Everything happened has a reason and I am wishing continued blessing to all of you in your family.

Hugs

Rebecca @ Unexplained X2 said...

This has got to be so hard. You probably have no idea how many people you'll help by just being honest...no one ever wants to talk about how hard it is, but it's the reality. Thank you so much for sharing your stories. I hope you find some good answers and a path that makes you feel like you're doing something other than just waiting in doctor's waiting rooms...

Lindsay said...

I am a stay at home mom (of two tiny ones) in Colorado and brand new reader to your blog.

How uplifting, thank you for your thoughts.

Yesterday I was feeling similar, that I am the only true expert for my recently diagnosed 3 year old who has high functioning autism and is also gifted (reading and writing before the age 2).

Labeled by other mom's in his gymnastic class as the bully (because of his lack of people skills.) I actually know he is the sweetest, smartest 3 year old around.

Even his new ABA therapist, his first therapist, who is quite sure she has all the right answers. Told me his behavior is because of my parental faults.

I too, am grateful for my little guy and will always be his number one expert.

Lucy is blessed to have such a wonderful mother.

pakosta said...

She seems like such a special radiant and loving girl! I think she is just what the world needs, full of spunk and delight!
keep fighting for her! you are doing a GREAT job!!!
tara

Camille said...

I also have children with special needs, we deal with mental illness and behavioral disorders. I can relate so well, to the endless search for answers and specialists and filling out the same forms over and over, fighting with the insurance companies (for some reason, they don't see the desperate need for mental health).

Anyway, just wanted you to know as I am sure you are becoming more aware everyday, that you are not alone! You are an inspiration to me. Thanks for reminding me that I am my child's best advocate and I have to keep fighting to help them!

Stay strong!

P.S. I met you at the retreat and it was just amazing!

Charles and Kelly said...

I Will pray for Lucy and her eyesight!!

Terese said...

Great post. I think Lucy will find out what you wrote here someday and be so greatful for these words and for your fight. So much love in you family. You are an inspiration. Good luck with everything. You're (and Lucy!) in our prayers.

Jules said...

As a mother of 6 and mother to a daughter with Turner Syndrome and all 3 of the serious heart complications that come along with that diagnosis, I so appreciated this post. Your words so beautifully describe how every mother with a special needs child feels. I don't even have the strength or words to say them myself right now, so thank you for saying them for me! Blessings to you!

sevenalstons said...

Thank you for so eloquently voicing what I feel a lot of the time. Most days I go through life doing what I need to do for my family, but sometimes there are just those days or those moments where something happens to remind me of the difficulties we face and it makes me so sad. I have an 18 year old (I can't believe it - where did the years go?) with special needs and let me tell you... the search for answers may end (we were told years ago to stop searching for the cause - she has no formal diagnosis - and to ramp up addressing the needs... and this really made sense since we had ruled out just about every formal medical diagnosis), but the search for making her life "better" never ends. We've tried supplements over the years, but I'm curious as to what you are using? Please post about this soon or send me an e-mail if you have time - haha! I'm open to trying new things and am really, really interested in what you are doing with Lucy. I look forward to hearing more - you never know where the next breakthrough is going to come from! Until then, God bless and thank you for sharing your heart with us.
~Jennifer from Upstate NY

russandkatie said...

if you're in Arizona we go to an AMAZING eye specialist for our 2 children that have a really rare disorder...

russandkatie said...

so funny, I just went to another one of my favorite blogs after leaving yours and her post was about you and it said that you do live in AZ. So here is the info if you want it. Her name is Dr. Amy Leverant and she is with AZ Pediatric Eye Specialists. She is in the West Valley. Also if she does end up needing glasses, Eyemagination at 1450 W Southern Ave in Mesa is the absolute BEST place to go! Believe me I have been to many places with my 2 kids' very high prescriptions. The owners name is Maureen and she is VERY knowledgable!

Julie said...

One week ago today we got crushing news about our son's "issues.". After waiting for 7 months to see a particular dr that we thought would help him and us, we were basically told its too late. Our window for helping him has passed. I cried myself to sleep, then woke up and knew I must "fight the fight." I know I was inspired to read this tonight-- I don't even know how I stumbled across it. A tender mercy for sure. Thank you for being brave and sharing.

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