Life lessons

Written in February 2015
Today I was sad, thinking about all the people who don't understand and don't accept disabilities as part of life. Thinking about how much discrimination is out there. I had just read an article about how this mother wanted to give up her child because he was born with Down Syndrome, and when the dad wanted to keep the child, she divorced him. Some things like that may make you lose your faith in humanity! Then I read another one, in Portuguese, from a journalist called Silvia Pilz, who writes for one of the main newspapers in Brasil, who is very preconceived against people with disabilities (and also the poor, the black, and anything that she can cause some controversy writing about), and I just couldn't help myself! In one of her articles, she wrote (translated by me):

"Is the swarm of children with Down syndrome still here? They must have something to teach us. I always see reports of touched parents, as if they were blessed. God, do we have difficulty in assuming burdens!"

"Será que o enxame de crianças com síndrome de Down ainda está por aqui? Eles devem ter alguma coisa para nos ensinar. Vejo sempre relatos de pais emocionados, como se fossem abençoados. Deus, como temos dificuldade em assumir fardos!"

Burdens???? My daughter does not have Down syndrome, she has a different disability, but yes, I am blessed for having her in my life. And yes, I have learned a great deal with her. She taught me to see the world in a whole new way, to be more tolerant and more patient, to take one day at a time, to appreciate what I have, to love in a completely different way, among many other things. I can only feel sorry for Silvia, for she hasn't had the opportunity to have someone like this in her life.

One day my husband and I were in deep conversation about Gabbie. It was one of those days when we were feeling down, asking ourselves "why us", questioning our own ability of dealing with the situation at hand. "Why were we chosen to be her parents?". My answer was that I believed it was exactly for what I mentioned above, for us to learn and grow. Then he asked me "But do you believe we are the only ones who need this lesson?", to what I immediately replied "No, but maybe we are ready to receive it now."

And now, more than ever, I believe in that - Silvia Pilz desperately needs this lesson, but she is not ready to receive it, and I can only feel sorry for her.

Little girls and colors. One step forward, two steps back.

All pink :)

When I first learned I was expecting a girl, I started thinking of all the things I was going to buy her! There are so much more colors to choose for girls! I chose the colors for her bedroom, and I had fun choosing the colors for all her dresses and bows. Sometimes it was impossible to stay away from pink, and, as she grew up, it became one of her favorite colors. At some point it seemed that everything she had was pink. Even her glasses were pink! But I never thought one day I was going to be faced with the choice for the color for her first wheelchair.

We went to that particular appointment to talk about a stroller for her. She had been complaining of pain and willing to walk less. For the past year she had been walking independently, without the walker. We were so happy for all she had accomplished. She still has the contractures on her knees, which are about 20 degrees now, and the ones on her feet, so she walks with her back bent. Doctors had warned us of potential back problems. For about a month she had refused to walk sometimes, and asked to be carried. Many times she refused to walk with the pre-school teacher to the school bus, and they thought she was just being stubborn. We noticed that sometimes she would stop walking and put her hands on her back, or on her knees, and we asked if they hurt, and the answered varied from "No, I'm fine" to "Yes, here (and she would then point to a completely unrelated body part)". She still has a very hard time identifying "pain". I think that for her whole life there was always some level of pain present, and she is having a difficult time judging the levels of pain. But we knew that, even though she couldn't express it, she was in pain. Her behavior changed a lot during that time. She became cranky, whiny, difficult to deal with. And we all just thought it was a "phase" she was going through. Until one day, my husband and I were talking, and we came to the conclusion that, if we were trying to keep up with our peers, be active like them, walk like them, all day long, while having less muscles and nerves on our legs to do that, we would be in a bad mood too. But she rarely complains, so we didn't know she could be so uncomfortable. We noticed that she was getting tired more easily, and at the end of the day her behavior problems were worse. We talked to the physical therapist about that and she agreed with us that she was in pain, and that we needed to have her use her walker again. With the walker she can support her weight more on her arms, and rely less on the legs. We left that appointment feeling defeated. First, it was really difficult for me to get her walker out of it's storage place in the garage, where it had sat for almost 1 year. It felt like we were going backwards. And I didn't think Gabbie would want to use it, because she COULD walk without it, her friends don't use one, why would she? 

The idea behind having her use the walker again is to save her joints. Gabbie will probably not have a surgery to resolve the contractures until she is about 16 or 17, because the surgery will affect her growth plates. We need to get her to that age as comfortable and with less pain as possible, hence the walker coming back. But even the walker can only get her to cover medium distances, such as going from the classroom to the playground, or to the bus. Whenever she needs to walk more, like a trip to the mall, or even just going to the park, we have to carry her or use a stroller. She will be 5 in a couple of weeks, so she outgrew her baby stroller. That's why we went to that appointment to talk about a medical need for a special stroller for her. 

As parents, we always see our kids as our babies, and it's hard to watch them grow. My older kids are now 18 and almost 20 and I still call them "kids"! But the reality that Gabbie is almost 5 and will soon need to be more independent was brought to us at that appointment. Instead of a stroller, she is getting her first wheelchair. To watch my baby sitting on a wheelchair for the first time, while they took measurements was something very painful. Not to her, she was very happy sitting on that wheelchair, as if it was a new toy. I was definitely not ready to have my baby on a wheelchair. In my mind, all I could think was "BUT SHE CAN WALK!". I cried a lot that night, and many times after that, and even now as I write this.

Gabbie and her friend Kinsley, two beautiful princesses

And then, Gabbie was the one to (again) teach me a lesson. When we gave her the walker she immediately started using it. That showed me that she was feeling such relief from pain when using it that she didn't even question it. The simplicity of children is amazing to me. She still forgets the walker behind once in a while, and starts walking away without it, but she doesn't fight the idea of using it. Gabbie taught me that mobility must be practical. It's very difficult for parents to accept the idea of "effective mobility" because we want our kids to do everything the "normal" way. And it is "normal" to walk - but walking may not be key to success. It's definitely not effective nor practical in her case. And I need to come to terms with that. The fact that I'm still crying while I write this post is proof that I haven't. Yet. I'm gonna need some time. 

In 5 weeks or so we will go pick up her first wheelchair. There were not many choices in terms of color, and I was tempted to go with black. Black is classic, it is more discrete, But why should she be discrete? She will be 5 years old, and loves to be a little girl. She is happy, she is an extrovert, and I am sure that she will be as happy with her RED* wheelchair as if we were giving her her first bike. And I'm going to be trying really hard not to shed more tears, and to be happy for her. Because that's what mothers do. But it is still not a bike.

*only the legs of the wheelchair are red, the body is still black. Can you imagine a red wheelchair? ;)

Looking back on Gabbie's year (2014) - a lot to be thankful for!

It’s pretty much impossible to get through these last days of 2014 and not look back, reflect, and be thankful for all that has happened in this amazing year. It was a year of many struggles and my stomach and esophagus are witnesses to what stress can do. And also that constant pain and occasional injections on my left shoulder and arm are proof that carrying extra weight (mine and Gabbie’s), and all the bending and twisting can take a toll on your body. But as any other mother out there, I would do it all over again, and probably will for as long as I can - because she needs me to and because I have a lot to be thankful for.

My little girl continues to go against all odds and prove all doctors wrong. This year she started walking without her walker and, even though she still loses balance and falls a lot, she gets up every time with a smile on her face, to try again, and again, and again. She is determined and doesn't truly understand her limitations yet (I’m sure that will come later, as well as the frustrations associated with that), but what amazes me even more than her determination, is that she never complains about what she cannot do. She’s been trying so hard and I am so proud of her. 

2014 marked the year that Gabbie started in the two hippotherapy programs. She has been going to Ride-to-walk for 9 months now and we believe that it had a major impact on her ability to walk unassisted this year. The therapist, staff and volunteers are amazing and Gabbie loves to ride “her” horse.  At Project RIDE she also works on cognitive skills while still getting the motor and sensory input from riding the horse.

She continued her physical, occupational, and speech therapy sessions, and now she has been evaluated by a group of therapists from our School District and they were able to place her in a special education pre-school program for 3 hours/day to give her the individualized attention she needs and get her ready for school. That will start next year and we are so excited about it and thankful to all the therapists along the way that helped make it happen. We believe it will help her a lot.

One major accomplishment that I need to mention for 2014 was potty training. Because she needs help to dress and undress, to climb on and off the toilet, and has a hard time focusing on anything, we had been dreading potty training. But we finally decided it was time and, as anything else, she took it like a pro, and proved us wrong again. It was not nearly as difficult and in 4 days she was a “big girl” and is very proud to be wearing her big girl “My little pony” underwear.

Of course we still have a lot to work on, but looking back on all the good things that happened this year, tears of joy come to my eyes as I write this, and I am so very thankful for it all. 2015 will certainly bring its share of struggles and tears, but we know that we will overcome whatever comes our way, because our little girl teaches us every day that nothing is easy, but many things are worth fighting for.

Thank you Gabbie for being my daughter!