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!