Tuesday, November 30, 2010



For those of you that don't know faith, she is my niece.

In April 2008 my sister Suzanne, her daughter Paris, my mom and I flew to Guatemala to welcome my sisters new adopted daughter into our family. We were all very excited to meet Faith. We waited for her for about a year. We sat in a special hotel room on pins and needles waiting for her foster mom to bring her to us. She was 11 moths old. Then the moment came and Faith was put in my sisters arms. I have to say that there was a lot of mixed emotions. We were excited, nervous, confused and had a lot of questions. Like I said Faith was 11 months old. At 11 months old a typical child should have been sitting up on their own, crawling, holding their own bottle, babbling, well Faith was doing none of these. Before I go on about what Faith could do I have to tell you this; When my sister applied to adopt a child she wanted a healthy child. Guatemala is known for having the healthiest kids when adopting out of the USA. She even had a chance to visit Faith when she was about 6 months old.
Ok, so Faith was not a typical child. She was the size of a 2 month old. Could barely hold her head up. She didn't like to be touched, still drank out of a bottle and still woke up numerous times during the night. Loud noise and bright lights were to much for her to handle. She didn't like to touch anything with her hands or feet or mouth. When we got back to the states my sister started on a very similar journey that I was on with Joey. She took Faith to many doctors to figure out what was going on with her. Turns out she is just severely delayed. Maybe from the RSV she got when she was 8 months old, or maybe malnutrition during birth or during the time she was in foster care. We will never really know. My sister began taking her to therapies after therapies. She quickly began to improve.
Over the last 2 1/2 yrs Faith learned to sit up by herself, crawl, play with toys, eat baby food, eat regular food, she began to touch with her hands, and she even says a few words. She went from a 2 month old level to about a 1 yr old level. I know that this doesn't seem like much, BUT it is HUGE. Of course like any mother you want your child to have the best quality of life and want your child to be as typical as possible. For Suzanne, she wants her daughter to be able to walk. Well today she did. She held onto a walker by herself (this in itself is huge because she has a major sensory disorder), she bared weight on her feet and legs ( again huge because of the sensory disorder and the dislike of touching things), then she began to walk all over her therapy center. This is the first step of her walking independently. She is on her way. Way to go Faith! You can see a video of Faith walking by either going to my sisters or my facebook page.

So to slightly change the subject, I had a dream last night. The dream was about watching Joey take his first steps in a walker like the one Faith was using. I have had this dream before, but what was different this time is that I could not see Joey's face in my dream. So once Suzanne told me about Faith walking I realized that the dream I had was not about Joey, it was Faith walking for the first time. Of course right away I got sad for myself, BECAUSE I want to know that Joey will walk like Faith did. BUT one thing I have learned on this journey is PATIENCE.
All of us parents with special needs kids have once said in our child's lifetime " I wish my child could do.............". Then our child does it and as time passes you kind of forget the time when your child couldn't do it and you wish for something else. During all this time of waiting and wishing and praying, we learn patience, we learn understanding, we learn acceptance, we learn about hard work, we learn appreciation of life and of others and we learn more then most people learn in a lifetime. We learn that we might not see the big miracles that we are wishing for, but will see the other miracles that lie underneath, the miracles that are not visible to the eye.
So even though I am still sad that it wasn't Joey in my dream, I am overjoyed that my niece is starting to walk, that her quality of life has just improved dramatically. I am glad that one day my sister will think back to the time before Faith could walk and that she will barely remember those times.

Keep going Faith, and going, and going, and going! You have come an amazingly long way. We love you so much.

Faith when she was handed to my sister.

Faith today

Sunday, November 28, 2010

A Happy Thanksgiving

Happy Belated Thanksgiving!

Again this year we went camping for Thanksgiving. This is our 7th year camping over Thanksgiving. We go with about 6 other families, these are our best friends. We have a fantastic time.

Normally when we go camping we do not take Joey with us. He doesn't like it much and it doesn't give us time to relax. Joey is like a 6 month old baby. He has to be on a schedule, diapers changed often and fed every few hours. However we do take him every Thanksgiving. He was actually much better this Thanksgiving compared to the last 3 years since his accident.

The holidays are still hard for me. As time goes by it gets easier, but it still stings. It is hard to see the other little boys his age running and playing. It is hard to see these little boys riding their bikes and climbing trees and watching their favorite movies or playing games with the other kids. It is hard to hear the other parents talk about how their lives are going to get easier as their kids get older and they don't have to chase after them or watch them as much or make their food for them, etc. etc. etc. It is hard knowing that as their kids get older and become more independent that I will ALWAYS have that child that will depend on me 100% for EVERYTHING.

So then I start dreaming about what life would be like to be one of those moms, to see her child playing and riding their bikes, BUT I quickly shake it out of my head and begin to think about what I can do for Joey. I want Joey to be able to take a bike ride. The bike to do that costs $4500. Ok, then what about a bike trailer to take him on a ride, $800. Then my mind starts thinking about the therapies that I would like to do with Joey, more Stem Cell Therapy $30,000 and Neuro Therapy $8000. Maybe even more ABM, $1500. Then of course I start thinking about the things I would like to get for Joey, a new feeding chair (he has outgrown his current one) $600, a talker (not sure what these cost) and so many other adaptive toys.

So by this point my mind is going crazy with everything involving Joey, (school, daycare, therapy, adaptive toys and many many more things). So I have decided that today is the last time I am going to think about all this until after the Holidays when I have more time to be rational about it all.

So Happy Belated Thanksgiving to everyone. Hope you all had a great time. Be safe over the Holidays.

Blessings Always.

Tuesday, November 16, 2010


I have thought all day about what to title this blog post. I have even thought about how to start and what exactly to say. I finally figured it out.


WHAT IS NORMAL? Who is living a normal life?

I am living a NORMAL life.

For the last 3 1/2 years since Joey's accident, I have constantly said "I wish my life was normal". Well after this weekend I realized my life is normal. This last Friday I got on a plane with Jill and Peggy. Jill is mom to Seth who had his near-drowning 8yrs ago. Peggy is Jill's mommy. We flew to Seattle, WA to meet up with and spend the weekend with 9 other mommies who have children that have had a near-drowning accident. 12 of us total.

Over the last 3 1/2 yrs even though I have talked to many different mommies through email or more recently through facebook, you still feel most days that you are alone on your journey. I have always called it a journey because I have never felt like it was a normal life to live. WELL, this weekend changed me a lot. For the first time ever in the last 3 1/2 yrs I have felt normal. I sat in this HUGE house with 11 other mommies and we laughed and laughed and laughed and cried, then laughed some more. We talked about our lives, our feelings, our struggles and our happy times, we prayed and sang and cheered, we held each other and just sat and listened. Even though all our kids are at different levels of healing and different levels of disability and all our stories of how we got here are somewhat different, we all felt the same. We all have experienced the same emotions. No one judged the other. You never had to explain your life. We all understood. We all were on the same path, the same journey, the same NORMAL. Being with all these mommies I realized that we lived normal lives. Normal because we have all been were the other has been. Normal because it was comfortable. Normal because we all understood each other. Having the 12 of us women in the same room made my life NORMAL.

I want to send out a few special thank yous; Thank you to Sue S. who organized and planned our whole weekend and Thank you to Tiffany V. for letting us stay at her house. Also Thank you to Amy S.(Sue's daughter) and Yoli (Sue's Best Friend) for cooking and cleaning for us all weekend. And Thank you to all of Sue's friends who volunteered their time and donated monies to make our retreat all it was.

I will miss you all, but will see you next year (hopefully). This weekend really changed me more then I ever imagined. Thank You Mommies. I LOVE YOU!