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.

What If...

As a parent of a disabled child, I constantly find myself asking “What If” on a regular basis. What if we had two healthy twins that could play and talk together? What if we didn’t have to live by the clock to administer medications? What if we could celebrate a holiday and not have to worry about ending up in the hospital? What if Olivia was able to tell us how she feels and where it hurts? What if I could wake up one day and Olivia could look into my eyes and say, “Daddy, I love you.”

What if. Those two little words that will forever keep me wondering. Every day is a struggle to let go of the dreams we had that will never quite turn out the way we thought they would. Most parents envision their kids going to school, then to college, then getting married, then grandchildren and a host of other things in between. I have now replaced those thoughts with hope. Hope that Olivia will be able to sit up by herself and watch her sister showing her a new Barbie. Hope that Olivia will one day be able to conjure up enough strength to take that first step by herself even if she is wearing leg and arm braces. Hope that one day Olivia will be able to raise her head and simply say hi. And hope that if nothing else, I can tickle her and she will know for an instant what it feels like to laugh.

The ironic thing about Olivia is that she is the strongest person I have ever known. She has fought more battles in five years than most of us will fight in a lifetime. She has beaten the odds and I know she will continue to do so.

So What If? What if Olivia had been perfectly healthy? What if she had not had to spend nearly two years of her young life in a hospital? What if she was able to walk and talk like any other child? The answer is, our family would not be what it is today. Her sister Hailey would not be nearly the loving, compassionate and understanding little girl she is. We would still be hiding behind society’s cloud of normalcy not comprehending for a moment the struggles parents with disabled children are entrenched with each and every day. Allison and I would not be half the team we are in fighting for our family. And we would not be able to look into Olivia’s eyes at true, innocent and unconditional love. The kind that looks back at you with determination and asks that you never give up on her. The kind that says, “Just give me a chance.” The kind that says, “Daddy, never stop believing. Never give up hope and never stop asking…What If.”

Not Another Stuffed Animal!

Over the years, our girls have taken in many, many stuffed animals. Hailey has given each a name and personality so parting with them is very difficult. When birthdays and holidays approach, we are asked, "What would be a gift that Olivia would enjoy?". Sometimes it is even difficult for us to think of things as the little things are what bring her the most joy. Livy does have her few favorite stuffed animals, especially the very soft ones we use to prop her in certain positions, or the ones that light up and make music.

I've asked my friends what their children with special needs have received for gifts and they too say...stuffed animals. I completely understand why and not knowing any differently, I would give stuffed animals as well. So the question remains, what does one buy for a gift for a child with special needs? There are some great options out there and I've included some links below:

Seedlings Braille Books for Children is a nonprofit organization dedicated to providing high-quality, low-cost children's books in Braille. What makes many of these great is that they are touch and feel books so they create a wonderful tactile experience. http://www.seedlings.org/

Another company, Abilitations, brings fun and function together with great adaptive toys. http://www.abilitations.com/

And a personal favorite, a catalog put out by Toys "R" Us called Differently-Abled Kids http://www.toysrus.com/shop/index.jsp?categoryId=3261680

And then for all of you who are harboring a jungle of stuffed animals, there are some great places to donate them to as well:

http://www.stuffedanimalsforemergencies.org/
http://www.projectnightnight.org/

All Our Ducks In A Row

Just about a month ago, Jon, Hailey and I took a trip up to Vermont for a wedding over a long weekend. This would be the first time we would have flown away from Olivia since she was very little. It was a very big deal. My sister, who is amazing with Olivia, offered to take care of her for the weekend. This would be a first for her also. She had taken care of Livy before but not for that length of time. The day before we left, I was having serious doubts about leaving. So nervous for something to go wrong. So many medications to give. But Meaghon was confident and I trusted her completely.

In the days leading up to the trip, Jon and I had a lot of work to do. It was amazing how much information we had to gather. We finalized our wills, made sure there was plenty of medication and supplies in the house, and we completed Livy's Care Notebook. I knew for some time that this Care Notebook would be important. It is Livy in a book. It lists all of her doctors, therapists, medications, schedules, school information, pharmacy information, and just about everything else someone would need to know if God forbid something happened to Jon and me. We keep it all together with our wills and insurance information in a neat little folder. Here is the link to the site where I downloaded the Care Notebook.

We really have to take ourselves out of our shoes and look at this from someone else's perspective, someone who may need to step in and take care of our child.

Bathing - My Kid Isn't Laundry

A few years ago, I attended a conference regarding children with disabilities. I clearly remember one workshop that I went to addressing ways to care for your special needs child. The woman talked about alternative types of equipment. On the subject of bathing, she said,"Instead of using a bath chair, you could simply use a laundry basket to bathe your child in the tub." WHAT?? She was suggesting I put my daughter who had no trunk control or head support into a laundry basket in a bath. The problem is that many insurance companies will not pay for bath chairs, they consider them "luxury items". We were lucky to obtain a bath chair though insurance after multiple letter from Olivia's doctors and therapists.

Although the bath chair is indeed very helpful, there is still the challenge of lifting her in and out of the chair. And then after the bath, where to put her down and dry her and change her. We are in the process of working with a contractor to possibly put on an addition to our bath to create room for a roll-in shower and changing area for Olivia. I can't imagine what the cost will be but it will become a necessity.

I propose the question, what do other parents do for bathing? Are there better options for equipment? Methods of transporting them in and out of the bath/shower? And lastly, has anyone had success using a laundry basket?

A Beginning

Over the past five years I have searched the web for answers. I've had so many whys and whens and what ifs. I wanted to find new ways of doing things, ways to make life easier. As a mom of a child with special needs, I have found that each day presents with new challenges. I wanted to create a place where parents could share their ideas. How do we face these challenges? What are some great tips/tricks we have found? And how can we help each other? I have been lucky to have met some great parents of kids with special needs and we've been able to support one another.

I plan to add posts of all sorts. What restaurants are easy to navigate with our kids' wheelchairs? What great products we have tried with our kids that actually work! Tips for bathing, tips for transporting, tips for feeding, tips for almost anything that poses a challenge! Ways to find products and services for our kids. Where to find support groups. Upcoming events for our kids to attend and conferences for us to learn more from.

I am also hoping to have other moms and dads submit stories and ideas too.Let's be the voices of experience. Let's share what we know...we are the EXPERTS! And I am yet to find "The Survival Guide for Parents of Special Needs Kids" so let's create it here!