"Livy's Hope"

Please visit our new website for Olivia titled "Livy's Hope" at the following link:

www.livyshope.com

All updates will be made to the new site moving forward. Thank you for visiting!

Wise Words To Remember

I was getting ready this morning in the bathroom and I heard Hailey talking to Livy in our bedroom, "Do you want to do some art with me today? You do? OK, let's do some sand art!". I walked out and saw her hugging Livy and they were just smiling at each other. They looked so happy, just smiling away as sisters do. I smiled too as I walked back into the bathroom.

It's been a difficult week and a half here. Livy's seizures had increased and we weren't really sure why. It's been one of those roller coaster rides that I don't like to go on. But the sun is out and it is a beautiful day. My girls are happy and I am reveling. I was remembering very clearly what someone once told me, "I wish for a happy child and not necessarily a healthy child. I have seen many very healthy but very unhappy children." We have been blessed with a very happy child...two to be exact. And today I, too, will be happy.

Search For Meaning

We are all on a quest in life to find the meaning of things. Why are we here, why do bad things happen, what is my purpose...? This is something I have been struggling with for some time. Someone recommended the book "Man's Search For Meaning" and as difficult as it is to read, I have found it very inspiring. The three most important things in life are to love and be loved, finding purpose through work whatever that may be, and struggle. With this combination we are given the best of life and can appreciate and find purpose.

Olivia has provided all of these to me whether or not at times I can see it. She is my unconditional love, both given and returned. Her smile alone has all the love in the world. Just one look and I know she loves and feels loved. As difficult as it is sometimes to care for her physically and mentally, I have purpose in being her mom, her caregiver, and she puts all her trust in me. And lastly, struggle. I am so familiar with this...I have faced it time and time again. I am still learning that without it I will never know how precious and amazing this little girl is. As deep in struggle I have been, I have also been lifted up, to heights not everyone can experience. For that, I have purpose.

One Week To Go

Well it has been almost three weeks with Livy's cast. She is doing much better and has seemed to adjust. It is still a challenge moving her around and it really takes two people to get her in and out of the car. Next Tuesday can't come soon enough. We are still waiting to get an update from the investigators. It has been a tough road not knowing what the next steps will be. I'm trying to take this all one day at a time.

My mom and dad were here last week to help and Jon's mom and step dad have been helping out with picking up Hailey from school. Can't imagine how we would do this alone.

Let's pray her leg has healed so we can move forward...it's time we get our lives back on track.

Another Difficult Road

Who would have know that last Monday after that great dentist visit, life would take such a bad turn. For those of you who have not yet heard, Olivia broke her leg at school last Monday the 1st. I went to pick her up and she was crying and in a lot of pain. We took her to the orthopedic doctor and come to be, she had a broken left femur. She is in a full leg cast for a month. There is an investigation taking place at the school and the Department of Children and Families is involved as well.

As of now, we do not have any answers and are obviously very upset. We know that she was picked up to be changed and then put down onto the floor. It has been a very difficult week especially for Livy. She has been having an increase in seizures due to the stress and pain. It is especially hard not knowing how she if feeling and that she can't tell us what happened.

Her cast is to be taken off on March 2nd. We're just praying she improves with each day and heals quickly. This is one of the LAST things Livy needed in her life. And she had been doing so well up to this point. Knowing her, she will come through this being the fighter that she is.

I will be taking some time off from posting to "Views From Our Shoes" but will update soon on how Olivia is doing.

Fitting Right In

I felt it important to write about a great experience we had today. It was Olivia's 6 month dentist cleaning appointment this morning and for someone who HATES going to the dentist (that's me!) I really love going to our girls' dentist office. For one, they are just terrific people. All very cheerful and sweet. I especially love how wonderfully they treat Olivia. When she first started going there years ago, she had a very high sensitivity to her mouth. We could barely get in there ourselves to brush her teeth. She was very vocal and would clearly be upset. They scheduled her first visit at a time we would be alone in the office. They were so accommodating and professional and took such good care of us.

When we walk in the door, I feel like we just fit in. It is such a great feeling seeing Livy in the "big" chair getting her teeth cleaned. I always leave there happy...they are all contagious! For moms like me, it is pretty cool having a "unique" girl like Livy but sometimes we just want them to be "typical". Who would have thought it would be with the dentist?

One Of My Favorite Poems

To those who have not read it and to those who have read it many, many times...

"Welcome to Holland"

By Emily Perl Kingsley, 1987. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Turn The Light Back On

Our family spent time on New Year's Eve writing a resolution list for this year. One for Jon, Hailey, Olivia, me and one for the family. They included the usual things like learning something new, working harder at something, and one of my favorites for Hailey, helping Livy to walk and talk. I am adding a new resolution to my list, to "turn the light back on in my life".

Last night I read an entry from one of the blogs I follow: Calm Amongst the Chaos

The author speaks about how she learned to turn her light back on after having a child with special needs. It amazes me how much in common I have with these other moms. It is as though she is speaking my words, my story. I told Jon that was what was missing from my life. That light that once shined so bright. Yes, there are times when there is a sparkle, a ray of light that comes from within but not that complete, whole, honest and true light.

My journey begins now to find ways to come out of this cave I sometimes find myself in. It includes fully learning to accept Livy the way she is and find comfort in what she is not. Five years into this journey and still I struggle. It is especially difficult when our children get sick and regress. It is during those times I need the most strength.

So I ask, what has your journey been to bring the light back in? Have you turned it back on or do you continue to search? Hoping this new year will bring my "series of events" to my "light bulb moment"!

Happy Holidays!

We would love to wish all of our followers and readers a very happy holiday season!

This was the first year since our girls have been born that we had a healthy and very happy Christmas. We feel so blessed and can't believe that one year ago we spent Christmas night in the hospital with Livy that led to surgery and a three month hospitalization. We felt so alive yesterday and so overwhelmed with what Christmas is all about. But we also did not forget those who are in the hospital, those who are sick and scared and who may only be beginning a journey like ours. This makes us only more grateful for our health and each other.

When asking Hailey last night at dinner what her favorite thing about Christmas was she replied, "Being with my family and that Livy is not in the hospital". That pretty much says it all. To a happy and healthy new year to all!

Couldn't Have Said It Better Myself

Tonight I was updating Livy's feeding and medication schedules and found this paragraph in an old note I came across. I don't remember when I found it or where, but I know it was some time ago. After reading it again, I am still moved by the words. I love what it says about how a mom feels about her daughter, Isabel.

It reads...

"I am profoundly grateful for Isabel, special needs and all. Because she has taught me to live more richly, to love more deeply. To feel pain all the way to the core of my being. To be excited by little improvements here and there. Because of Isabel (and Steve, and Robert) I feel like I have fully participated in what it means to be human. I'm not so sure that without Isabel's condition, that I would ever have had this new found perspective."

I feel I could easily replace the names with Olivia, Hailey & Jon. Such perfect words I will never forget.

31 Ways To Tell Your Child "I Love You"

I came across a list today by Terri Mauro, a contributor to About.com with 31 ways to tell your child you love them other than by just saying the words. The words "I Love You" are spoken often at our house. Hailey says she loves us, "To infinity and back" which then turns into "To infinity, infinity and back", and this goes on and on (you get the picture). We believe that our bond remains strong in our family not because we speak these three words but because we try to show how we feel.

We aren't sure if our special needs children understand when they hear "I Love You" so in this case, the action speaks much louder than the words.

• 1. Spend a little time each day playing entirely at your child's direction.
• 2. Cuddle up under a blanket and watch what he or she wants to watch on TV.
• 3. Give a chocolate kiss along with a real one.
• 4. Exchange butterfly kisses or nose-to-nose Eskimo kisses.
• 5. Find something about your child's appearance to compliment.
• 6. Find something about your child's music to compliment.
• 7. Do one of your child's chores for him or her.
• 8. Run fingers through hair.
• 9. Make your child into a burrito.
• 10. Read books about family love, like I Love You, Good Night, On Mother's Lap, Guess How Much I Love You, or If You Were My Bunny.
• 11. Send an encouraging note with your child's lunch.
• 12. Pick out candy conversation hearts with appropriate messages and present them to your child.
• 13. Cook something together.
• 14. Talk in the car on the way to school instead of listening to the radio.
• 15. Give a foot massage.
• 16. Take a long walk together, at your child's pace.
• 17. Read the funny pages together.
• 18. Find a video game you can play together, like "Wheel of Fortune".
• 19. Do a jigsaw puzzle together.
• 20. Use magnetic letters to put loving messages on the fridge.
• 21. Make customized word games with loving messages.
• 22. Take pictures of facial expressions showing different emotions, and tape the one of you showing "love" over your child's bed.
• 23. Send your child a card in the mail, with stickers or a treat inside.
• 24. Stick an encouraging note on your child's mirror as she sleeps.
• 25. Set aside a little time each day, maybe before bedtime, to talk about what's going on in your child's life, judgment free. If your child doesn't like to talk, say "Tell me three things that happened today." If it helps, tell three things that happened to you in return.
• 26. Find a board game you both enjoy and schedule regular tournaments.
• 27. If you use a point system for rewards, give bonus points just for being a great kid.
• 28. Develop a secret word or gesture that only the two of you know the meaning of.
• 29. Kids who don't like to be hugged may be okay with sitting on your lap and being held from behind, particularly if they're watching TV or reading.
• 30. Take your child out to lunch every now and then, just the two of you.
• 31. Play hide and seek with your child, and while you're searching talk very loudly about how sad you will be if you can't find him or her. Then be very happy when you're reunited.

The Gift Of Time - Respite

We were introduced to a wonderful organization a few years back that provided an invaluable service to us - respite care. Respite provides relief for families caring for children with special needs. When you are a parent of a special needs child, your daily life is changed completely. You do not get breaks from the daily routines and stress that is involved. It is very difficult, if not impossible, to find day care for your child as most do not have the ability to care for someone with medical needs. Taking time out to spend with your spouse and other children is very important and sometimes other family members and friends are not available or knowledgeable enough to care for your child.

It was a big step learning to trust someone else with Olivia at first. When I was able to have a few hours to myself once a week, I felt better about myself and had a chance to do the things I needed to do. I could take Hailey to the park or meet Jon for lunch. After being at home with Livy for so long, away from the rest of the world, I finally felt like myself again.

The only problem I have found with respite care is that it is very difficult to obtain. We lost one of our providers a ways back and there was no one else available to take her place. Luckily, my sister had moved down to Florida and she was able to provide respite care for us. I know of many families who have the need but cannot find a placement.

If you know of someone who could use respite care, consider a few hours a week or month to help out. Even family members can provide respite care and receive payment. Most importantly, you will be giving a gift of time...something so many of these families need.

Click here to search for respite care organizations.

Unique Twins

When Jon and I found out around 11 weeks into my pregnancy that we were having twins, we knew we were in for a challenge. When we found out hours after the girls were born that we were to raise one child with special needs as well, we knew we were in for a very special challenge. Those first few months were such a blur, raising one little baby at home and tending to another in a NICU. In the saddest of times, Jon would always remind me how much joy Hailey brought us. She made us laugh when all we could do was cry. She taught us how to smile again, how to enjoy life. It was because of her that we were able to make it through.

They will always be unique twins, different but so similar in so many ways. We try our best to give them the same amount of attention and treat them as typical twins are treated telling them they have to "wait their turn". We try not to use the word "special" when talking about Livy to Hailey. They are both special and we tell them both how lucky they are to have each other. They still share clothes, hair accessories, and other things typical twins share. The day has not come yet for Hailey to say, "That's mine and Livy can't have it". I hope it stays this way for some time.

We talked to Hailey last night about how children will ask questions about Livy. They will want to know why she is in a wheelchair, why she can't talk or walk, and why she can't eat with her mouth. She understands that Livy is "learning" and that her brain did not grow the same way when I was pregnant with them. We very well know the day will come when someone says something hurtful. We can only hope that Hailey knows what to say and feels confident to stand up to them. We continue to relish the moments when we see them look at each other and only see love...sisters who share so much.

A great resource for siblings of those with special needs:

The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns.

Knowledge Is Power

Novelist Frank Herbert wrote, “The beginning of knowledge is the discovery of something we do not understand.” Nothing could be more true for parents of a child who has just been diagnosed with a disability. I remember the day we were told that Livy was going to be a very “special” child. She was about a month old and we were in the hospital with her. Her neurologist at the time came over to us, handed us a document and asked us to read it. In short, the document said that Livy would have severe disabilities and probably only live for about 2 years. Need I describe our devastation? I think not.

From that point on, we have been on a journey to educate ourselves as much as possible about Livy’s condition. We started with the internet scouring blogs and medical sites. We read books and talked to other doctors. What we wanted was a second opinion and to find out what was causing her continuing deterioration. After our second opinion and a three month stint at another hospital, we had a partial answer as to the why. But we were still not satisfied with the what to do about it part. So we continued our research and found a third hospital only 3 hours away from us. The team of neurologists that assessed Livy had experience with other similar children. We went through a whole new round of tests. Due to their progressive nature, the doctors at Shand’s Hospital in Gainesville have now operated on Livy twice and we have seen improvements that although are small for other children, are major for her.

Olivia will be 5 on December 15th. Had we not educated ourselves as much as possible, we may have stuck with the initial doctor and sadly settled for the first diagnosis. Knowledge in conjunction with a tremendous support system is your best weapon when dealing with a life changing medical situation. As parents, we are our children’s biggest and most important advocates. Doctors may be incredibly intelligent but they do not know your kids as well as you do and tend to forget about the overall picture. Always trust the little voice whispering in your ear telling you something doesn’t sound right. If you don’t comprehend what a doctor is conveying to you, find out what it means. I believe that a lack of understanding causes fear. Fear in a dire situation causes poor judgment. I have promised Olivia as her father that as long as she fights on, so will I and will always try to be as fearless as possible.

The Simple Things

I asked my mom today about a suggestion for a blog posting. She always comes up with great ideas for just about anything so I figured I'd pick her brain. I loved her idea about "The Simple Things". All those little things that make me smile and lighten my heart for the day when it comes to Livy. So here goes...

• Knowing that Livy's smile is 100% genuine...all of the time
• Having Livy as the best little snuggler and knowing she will never tire of it
• When shopping, she never complains, never begs and loves to window shop
• Seeing Livy with Jon...her face lightens up when she is with him
• Watching Hailey hold Livy's hand and saying "You're the best sister I've ever had!"
• Reading that Livy had a great day at school even if it only means she was able to stay awake for most of it
• Answering the questions from kids who come up and ask about Livy - I love when they aren't afraid to ask
• Knowing that the toughest things of my day do not compare to the things Livy has gone through and learning not to sweat the small stuff
• Feeling like a stronger parent/wife/friend because of all of the gifts Livy has given me
• Hearing Hailey say, "Good job Livy, hold it up a little more" when Livy tries so hard to keep her head up
• Watching Livy drift off to sleep again after waking up in the middle of the night
• Seeing Hailey's friends treating Livy with so much love and respect and being so curious and understanding

Of course it's also the simple things like Dove chocolate, a great glass of wine, and quiet time with Jon that lift the spirit too!

This Lovely Life

From time to time I find myself searching for books, articles, blogs, anything that I can relate to when it comes to Olivia. Some people would call me crazy...why would I want to relive all of the sadness and horrors of Livy's time after she was born and the many hospital visits we have experienced? Why would I want to reopen wounds and remember all that has happened? I can only say that I must do so to find comparisons, to find someone else who went through what we went through. Someone who "gets it".

I found myself reading My Sister's Keeper by Jodi Picoult during one of Livy's hospital stays a couple of years ago. For those of you who had read the book or seen the movie, you can see how I can relate. The story is quite different but there were so many similarities from the viewpoint of the mom. Looking back now I can't believe I read that as I sat by Livy's hospital bed, but at the time, it was therapy for me.

I just finished reading This Lovely Life by Vicki Forman. Here is the description on the author's website:

"Vicki Forman gave birth to Evan and Ellie at twenty-three weeks gestation and weighing just a pound at birth. During the delivery, she begged the doctors to “let her babies go”–she knew all too well that at twenty three weeks they could very well die, and if they survived, they would face a high risk of permanent disabilities. However, California law demanded resuscitation. Her daughter died just four days later; her son survived and is indeed multiply-disabled."

Once again, I was drawn in, understanding so well how this mom felt. At times I had to put the book down and walk away. Her story was full of such grief and loss but also hope. She so clearly explains her emotions and so openly shares her thoughts. I've often thought of writing a book of my own, but for now, I will continue to seek comfort from others, knowing we are never alone.

Yes, My Child Is In The Room

There have been so many times I have taken Olivia to a doctor's appointment (usually a specialist) and the doctor somehow forgets she is in the room. No, she doesn't cry or cause a commotion to get the doctor's attention, but she is the patient and should be acknowledged. Touch her, hold her, examine her at the least! Usually, everything is directed at me. Last week, our experience changed...

We went to a nutritionist for the first time and now I wish I had taken her sooner. For starters, he actually came out to the waiting room to find us while we were waiting to check in. He talked to us, both of us. It had been raining that morning and Livy's socks were soaked. He proceeded to take them off and rub her feet while all the time talking to her and telling us all that he had learned about her. He was kind, caring and had done his homework on her background. He spent well over an hour with us and asked, "Is she hungry? Would you like to go ahead and feed her?" He grabbed a Pediasure bottle when I realized I had forgotten her food at home. He listened and explained and even gave me his email address to contact him. Unheard of!

I know Livy doesn't talk and I know she won't always look directly at someone but she needs to be treated with respect. She may very likely know everything that's going on...and who wouldn't like a good foot rub?

Happy Thanksgiving!

It is not often I get time to sit and think about what I am thankful for. But on this day, it is nice to reflect over the past year. I think what I am most thankful for this year aside from having a wonderful family, friends and a job, is perspective. And on this day of feasting, I will try to explain using the view point of a turkey.

I have to imagine that turkeys trot around all day not concerned much about more than eating, drinking, sleeping and making more turkeys. Of course, not being a turkey (I suppose that is debatable sometimes) I wouldn’t know for sure. But I bet they don’t get upset if their feathers are out of place or if it rains and they can’t go and play in the yard or if their favorite turkey friend can’t watch the football game that day. I would imagine that they would be most unhappy if they didn’t get their ration of food for the day or if they really understood what was going to happen to them before Thanksgiving.

Perspective can make life so much easier. I try not to worry about the small things. Before Olivia and Hailey were born, the little things used to frustrate me so much more than they do now. But your perspective on life changes quite a bit after your kids are born and especially if you have to endure years of trials and tribulations due to a child with chronic and severe health issues. All I have to do is watch my girls sleeping and all the day’s frustrations fade away.

So what I am attempting to say is don’t sweat the little things. It is truly energy wasted. Not to mention, most of the little things are out of your control. Spend time and energy trying to enjoy life and make it more robust. Perspective is a powerful tool. It can allow you to see life through the eyes of anyone you chose if you really pay close attention. It can change the way you live and treat other people. It can open doors to a world where you see more good than bad. And most importantly, it will make you realize how lucky you are not to be a turkey on Thanksgiving!

Happy Thanksgiving Everyone!

Jon

"The Traveling Wheelchair"

I came across a great website today titled "The Traveling Wheelchair". I started doing some research regarding accessibility for wheelchairs in stores. I took the girls to the mall yesterday to see Santa and for some window shopping and just to get out of the house (I know, it was only the first day of the girls' vacation week but I was getting ANTSY!)

For the first time I really noticed how difficult it was to navigate Olivia's chair around some of the stores. The displays were all so close together we were knocking off items left and right. Hailey would see something down an aisle and call us over to it but I could not for the life of me get Olivia through. It was a maze I was not about to enter. The two stores that caused the most problems were surprisingly kid friendly stores, Children's Place and Claire's. I noticed other mom's with strollers having difficultly as well. Not a fun shopping experience.

On "The Traveling Wheelchair" website, they assess places for accessibility and other things such as parking, restrooms and height of service counters. They have a great mission statement, "To help make the world more sensitive, respectful, safer and accessible to all." It appears the site mostly rates locations in Massachusetts. We could really use something like that down here in Florida! Sounds like a new project for us, what do you think Jon?

We Love Our Tomato!

So many people have asked us about the stroller seat we have for Olivia. What makes it so great is that it also makes for a perfect car seat. We had a very difficult time finding a travel system that was easy to disassemble and one that could fit in the trunk of our car. It was also difficult to find a car seat that would give extra neck support. What we found was not only functionally great but also kid friendly with nice color options. It is the SPECIAL TOMATO!
http://www.adaptivemall.com/specialtomato.html

This multi-positioning system is great for use at home, school or in the car. We use the Maclaren stroller with it for an easier transport option than Olivia's wheelchair. It is incredibly soft and comfortable and so easy to clean.

I also love the story of the origin of the name "Special Tomato":
http://www.adaptivemall.com/carbertomsto.html

The name is not to be confused with the restaurant, Sweet Tomatoes, as I accidentally tell people from time to time! I highly recommend this great piece of equipment.