Adding to the Family

When you start a family, I think that most people have a plan. We were no different. In 2003, we had our little girl. She was everything you could hope for in a baby. She slept good, and rarely cried for her first year. Our plan was that when she was about 2 yrs old, we would start trying to get pregnant with our second child. We had no idea what was in store for us.

When she was just over 18 months old, she entered into Early Intervention to help with some developmental delays. We still had no idea, but as she approached 2 our once happy easy going baby girl was crying...a lot! Not knowing what exactly we had on our plate, we decided to put off our decisions to add to our family. It was what seemed best at the time. We can't change the choice we made, but looking back I sometimes wish we would have gone ahead with our plan. I sometimes wonder if it might have made the tough times a little easier.

When she was 2 1/2, we finally found out what the name was to everything. Rett Syndrome. Having a name didn't mean we knew any more about what was on our plates, and what the next few years would bring us. We continued to put off our decision, I think for fear of the unknown. It was all so new to us. All we knew for sure was that our little girl was frustrated as her hand use was slipping away, she had trouble feeding herself and now she was developing seizures. The idea of adding another child to the mix was terrifying!

Somewhere in 2007 or 2008 when she was around 4 yrs old, we started getting our happy daughter back. The smiles started to out number the tears. What a joyous time this was! It was then that we decided that once she was in school full days, we would have the discussion again about having a second child.

There are no promises in life. You just have to have faith that God doesn't wait too long to show you what the purpose is for whatever it is he has given you. In August of 2009 when we found out I was pregnant, it was a bag of mixed emotions. My mind was flooded with what-ifs. A lot of people asked us if we were going to have genetic screening done. Honestly, the thought never crossed my mind. I had been planning this baby for years. We already had a feeding tube and seizures...what else was there? My husband went to one appointment with me. When the doctor asked about our other children, we told him about our angel girl. He said "are you interested in genetic testing for this baby?" It was my husband who said to the doctor "No, it won't matter. We know the world of disability. It is the typical world that is the unknown for us."

I remember the pure sense of relief when we found out we were having a baby boy. Rett Syndrome occurs in mostly girls, although I know of some pretty strong little boys with Rett too. I couldn't wait to hold my baby boy, and count his fingers and toes. Our family was going to be perfect! And, it's funny how when you end up with one of each everyone asks "so are you done now?"

No one prepares you for what it will be like. After having a child who struggles with every little thing she learns and has lost some skills along the way, you begin to realize how precious life is. I never expected that something so simple as crying when he was hungry would bring be to tears. Not those overwhelming new mom tears, but tears of joy. My baby girl rarely cried, not even when she was hungry. As he hit milestone after milestone, I rejoiced. We don't take anything for granted around her. We even celebrate him getting into things, because he can! His hands work just the way he wants them to, and he uses them to get into all kinds of mischief already!

My friend Kelly has an amazing little girl with Rett Syndrome. She also happens to have an amazing little boy with Down syndrome. Our journeys have been different, but one thing is the same. We know how precious time is. We know how much energy is put into that decision to have a second child. Through watching the struggles that Rett Syndrome has brought to our girls, we have learned that every single achievement from every single child is a blessing and should be celebrated. She is an inspiration to me on this journey, as she continues to find the balance in her own life. She keeps up blogs on both kids, and advocates for them daily. Take a moment and read what she had to write recently about celebrating achievements.

For any family, I'm sure the decision to have another child isn't one that you go into lightly. When you have experience with things not working out the way you had plans, it makes that decision all that more difficult. Then again, things never work out the way I plan it. When we made this decision, we did so knowing that there was always a chance. We did so with faith. Now, we have two amazing children who love each other and are learning together. We feel very blessed!

When One Person's Humor Becomes Another Person's Pain

Part having a child with some medically complex issues is going to the lab for blood draws on a fairly regular basis. Every three to six months I take my daughter in to our nearest clinic and have her blood drawn for a complete blood count, and to check the levels of two of the meds she is on. Pretty simple, really. They have always been very nice, and it is a simple in and out process...Today, it was different.

On the bulletin board next to the lab chair, there were some pictures. Most were silly animal pictures, which would lead one to believe that whoever posted these pictures on the wall thought they were funny. What happens when what someone thinks is funny, is degrading and insulting to another? Our country is founded on freedom, and the freedom of speech is one of those. So, does that give people the right to humiliate others? Does it give them the right to make others feel like they are the butt of all jokes? Or is it sometimes complete ignorance that people would even think something is hurtful? I would venture to say more often than not it is the latter. Many people live in a world that is centered around themselves. They don't stop to think for a second that people might be offended or hurt by the things they say or do. Why should they? It doesn't effect them, people shouldn't be so sensitive, if you don't like what people say walk away...The excuses go on and on.

Now, I love my daughter's doctor and we have never had a bad experience with any of the staff in any of the clinics we have gone to. This clinic isn't even the one that her doctor practices in, just the same organization. I don't even know who the sucker was that posted the picture, but I'd think they need to attend some extra sensitivity training. I'm just a parent..What if some self-advocate with a disability came in and saw the picture...and read the words? How many have seen it before me, and been offended but not known what to say? Do you speak up when what someone thinks is funny hurts you?

The image is likely forever engraved in my head...I sat there with my daughter who, for today, I will thank God she can not read...

The picture was of two baby chicks...There appeared to be something wrong with one, who knows maybe it had Rett Syndrome...And the words read..."RETARD: everyone knows one."

Twenty, even ten years ago this may have been a more acceptable joke in society...Who knows when the picture was printed...But it isn't ten or twenty years ago...It is today...It is 2011, in a time when individuals with disabilities and their families fight day in and day out to be equals in society. The pain and the discomfort I felt today was huge. I fought back the tears, as I felt like I was crawling out of my skin...As I hugged my daughter close...

And you can bet I said something! If this joke had been racially based, it never would have been put on that board. I have a dream...That one day my daughter will live in a society where one person's humor isn't the source of another person's pain. In a society where there is no hatred, only equality..Until then, I stand up, and will continue to fight for her rights, and the rights of all people with disabilities. Will you stand up with me and fight the fight?