On Tuesday, we went to The Children's Hospital for Adele's respiratory appointment. I was feeling a bit optimistic. Maybe she would only need oxygen at night? Well, the testing only lasted for a short time because when I turned the oxygen off, she dipped. We will keep pluggin away. As I have said before, we can't stand the oxygen, but we love it. We also met with the RN, OT, RT, MD, RDN :) It was a full day.
I have to be honest, I don't really enjoy going to The Children's Hospital. It makes me sad. I always see sick kids, very sick kids and it breaks my heart. It bothers me that there is an oncology unit. It just isn't fair.
Each time I've been to the hospital, there has been a code blue. I'm worried that I am bringing bad vibes with me...code blue in mental health and code blue in diagnostic imaging. I prefer no codes, just happy, healthy children.
When we arrived at the hospital, a lady joined me in the elevator. I believe she was Spanish, not that it really matters. She came right up to Adele, looked at her and said that she was the most adorable and beautiful baby. I thanked her. She then told me that this little girl was going to make a huge difference in my life. It's crazy when you need a little pick me up, and there she was....picking me up and making me smile. I was so appreciative.
The nurses and doctors all said that Adele was just beautiful. It really warms my heart.
The unit clerk kept calling Adele 'he' and I kept saying 'she', then she would say 'he' and I would say 'she'...I guess the pink blanket and pink sleeper didn't give it away. Finally she says 'oh, it's a baby girl'. Good lord!
Last night as I was laying in bed, now you will all find this very bizarre, but something hit me. We have a baby with Down syndrome. Honestly, in my head, I was thinking, holy, we have a little baby girl with Down syndrome. I know that I haven't been in denial. I know that I have accepted it. I know that we love Adele deeply. It was like an epiphany yet something that I was already fully aware of...I don't know why this popped into my head. I had a moment of panic, then a moment of breathing, then a moment of panic and then a moment of calm. It's really difficult to explain.
Something else that has happened lately is that when people pay Adele a compliment, I tell them that she has Down syndrome. I don't do it for a reaction. I don't do it so people will think I am a martyr. I don't do it so others feel sorry for me. I realized that I say it with pride. I say it with a smile on my face. In one of my previous posts, I was stuck as to whether or not I should tell others that Adele has Down syndrome. I didn't know what others really needed to know, I felt that all they needed to know was that her name is Adele and she is our child. That is still how I feel yet, this other small epiphany made me smile. No, I don't need to share any information with others, but I am proud of Adele. I am proud of how far she has come. I am proud that she continues to grow and develop. I am proud that she is hitting milestones in a timely manner...for now. I am a proud momma.
I love taking Adele out and showing her off to others. I love it when people come up and check her out. I love that the majority of the people I have come in contact with, love Adele instantly. It's just such a good feeling!
My love seems to grow as Adele grows. As her personality develops, I feel more love. When she smiles at her momma, my love grows. She knows her momma and I love that when she hears my voice, she looks right at me. There is something so great and wonderful about this little girl....I know that is a mommy comment, but it's more than that, it's this little miracle baby who I get to love and be with every day. It's this little girl who came into our lives for a reason. As I was driving home from the hospital, I thought back to the day when we found out about Adele's diagnosis. We were shattered. The tears and the feeling of hopelessness was overwhelming. I cried even before we got the results, maybe because I knew that she would have Down syndrome. Why did I cry? Why would you be sad to find out that your child will have Down syndrome? Is that kind of selfish? Is it because I was told that our child wouldn't be perfect? Is it because in my head, I knew that she would be at the bottom of her class? Is it because I knew that she would need our help for the rest of her life? When I think of those reasons, I hear selfishness. I remember the day, James and I said to each other that it was impossible. We couldn't possibly raise a special needs child. That would be way too much work. Our dream of the perfect child was shattered. Again, I hear selfishness. How do we know that Brinley won't be at the bottom of her class? How do we know that Brinley will lead a successful life? How do we know that Adele won't excel at so many things? How do we know that Adele won't just shock the shit out of all of us? Why do we have a preconceived notion of what Down syndrome is all about? I remember when the hospital called and said that I was being induced at 17 weeks to terminate the pregnancy. I asked the OB to book an appointment for me, just in case. Just so I could say 'yes' or 'no.'
We made Adele. We made a perfect, little girl. We made a miracle.
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If you want to rank my blog or leave a comment.....I am in the Special Needs section....I am number 20 (BOO), I need to get to number 1! I am not doing this for my ego, I am doing this because this journey is important to me, it is important to share and to hopefully educate, entertain and show others that it can be done. I've said for a while now that these two girls, with the help of family and friends, will change the world! :)