31 January 2014
Birdie in a Cage....
Just a few thoughts for the day. My emotions have been up and down lately when it comes to Adele. I hear so often that she will get there, it all just takes some time, she'll get things done in her own time, it takes a little longer for little ones with Down syndrome.
I get it, I tell people the same thing during conversations. I say that she will get there, I give advice to others and reassure them that their little miracle will be just fine, then I come home and close the door and worry, worry, worry.
I know that people say things to be nice. I get it. I say nice things too just to give others comfort, but maybe I should say "ya, it kinda sucks sometimes when you know that your little one needs more time. Ya, it kinda sucks that your little one will need a lot of extra care. Ya, it sucks that it will take a lot of your time, money and energy to get your child to get to where they should be, where you want them to be. Ya, it kinda sucks."
I had a moment the other day when I was looking on Facebook, friends posting pictures of their little ones, around the same age as Adele, and they are sitting up with no support. I know that it seems so minor and really, it is minor but it still bothers me. It doesn't bother me because I'm embarrassed or I feel the need to compete, that is definitely not it. I don't actually know why it bothers me. Is it because your child should be able to sit up by now? Is it because we still need to support her head? Is it because this brings it all to reality that it is going to be work, that there are many more mountains to climb?
I know that she will sit up unassisted . I know that she will crawl, she will walk, she will talk, she will go to school. I know all of this will happen, but it is still difficult and I worry.
When I was pregnant with Adele, I had a whole other set of worries, mainly her health and whether or not she would need extra care, meaning time in the NICU. I also had another worry, I don't know if this would offend some, but I wanted to know what features of Down syndrome she would have....would she have strong features or would they be mild? Where is she on the spectrum? Would you recognize that she has Down syndrome or would it be questioned? I'm not vain. I wouldn't isolate my child if her features where very prominent, I just wanted to know. With Adele, I over analyze everything. When I was pregnant with Brinley, I guess I wanted to know some of the same things, well not in regards to Down syndrome, but what does she look like? Does she have my nose? Is she healthy?
This is such a crazy road. It's sometimes hard for me to explain just how I feel. I love both girls madly and deeply, but with Adele, there is just something else, more worries and sometimes there is heartache. I love the support and love that we have received from others and the words of support, but on the other hand, some, not all, don't know the feelings unless you have been there, in my shoes.
On the other hand, I have a dear friend whose little girl suffered seizures since the day they brought her home from the hospital. She had a daughter who couldn't walk, talk, eat on her own, get dressed on her own, go to the bathroom on her own. She lost her daughter on her forth birthday. What she would do to have her daughter back here with her and her family. She would give up everything. It was hard. It was a difficult journey, but she was chosen to go on that journey with her daughter and in that time, she became a better person.
When Adele was in the NICU, my dear friend wrote this letter and left it at the NICU for me.
Dear Kitta, (my nickname)
I would like to share a story with you....there was a day that J was really sick and I was a total basket case. Another mom found me crying in the stairwell at the Children's. She sat down beside me and told me her story. Her daughter was 16 and had Down syndrome. She told me how she spent 9 months in a horrible depression over her daughter's diagnosis. She told me an inspiring story about how her daughter overcame all of her expectations. She worried that she wouldn't walk, but she did. She expected her to have speech delays, but she had her own quirky way of getting her point across that made everyone smile. She said that she worried that her little girl would never have friends and would be teased, but in grade 1, she was in trouble for pushing an older boy who was laughing and teasing her older brother. She worried she would be lonely, but she constantly attracted crowds of kids and started games with them, anywhere they went. She worried about her daughter's happiness, but discovered that she almost never stopped smiling, and that her smile and silly personality made everyone around her smile and laugh.
Eventually, it hit her that all of her worst fears were causing her to limit her daughter. She was the one who expected bad things, mean people, limitations. Meanwhile, it was her daughter who saw joy in the world, who made everyone laugh, who marched through life with no "damages" from society. She was strong and wonderful.
When I met this mom, her daughter was at the hospital in a transition clinic, learning how to start going to adult doctors by herself, learning what medicine she was on and what health conditions she had. Her daughter was already talking about moving out on her own, to a group living facility with her friends from Special Olympics. She went to school by herself, on the bus with friends and made her big brother sit "away" from her. She dreamed of working at a bakery because she could make great cupcakes and bread.
I told the mom that I was just so scared for J. I was completely consumed by fear for her....for what she would have to face in life. She told me that she understood, and that she realized that her own fear had been her daughter's greatest disability. She said to me "you go ahead and be a momma bear for your daughter, just like you are for your son, but remember cages keep little birds safe, but it's not where they are meant to be."
I still cried many times after she said all of this but I was really inspired by what she said. I wanted to share with you, because her daughter was such an achiever, and because when I imagine Adele as a big girl and as a teenager, I think she will be a lot like this woman's daughter, because she is yours, and let's face it, you don't hold back. :)
I picture Adele the same way - smart, funny, strong, social and definitely not a push over.
I'm so happy for you and your family that she's here and you both are ok. I can't wait to get to know her as she grows into an amazing little person.