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.