4 May 2014
Life has been pretty good lately. Adele is officially off of oxygen, there are no more tubes, no more tape, no more machines, no more prongs in this house. We are finished with the Respiratory Clinic but will be seen by the Pulmonary Clinic from now on, just for check ups. I love that Adele continues to do well, she gets stronger and cuter by the day. Her health has been great these past few months and I am thankful that she has had her RSV shots, I believe that they have helped out a lot and have played a major role in keeping her healthy.
We are going pretty strong on eating solids. She enjoys peas, green beans, sweet potato, carrots and most recently, bananas. I am thankful that so far, she enjoys everything that we have given her, and taken with a smile. I worry about feedings. I have many friends whose little ones are tube fed and where feedings are a struggle. With Adele, I am thankful for every day, every day that she's healthy, every day that she smiles, every day for rolling over, for talking, for snuggles and for the amazing interaction that she has with her sister. It is truly a whole new world for us, so many things that we have taken for granted with Brinley. We honestly took breathing for granted. How is that? We took feedings for granted. Babies just eat and drink because that is what babies do. All for granted.
One thing that I am struggling with a bit is that Adele isn't sitting up unassisted. I know that she will reach every milestone in her own time and she has done so remarkably well, but I can't help but wonder, when will she be able to sit up without flopping over? She is nine months and is beyond strong, stronger then we ever imagined, but her muscle tone is weaker. I know that she will sit up in her own time, I get it, I really do, it's just a different feeling, it's difficult to explain.
I was at a party the other night and I showed a picture of Adele and one of the ladies said that it didn't even looked like she has Down syndrome. I have mentioned this before in a previous post, it doesn't bother me when somebody says this because they just don't know. In her mind, she isn't saying that children with Down syndrome are ugly, she is saying that she knows the features of Down syndrome and it looks like Adele's are more mild. We, as parents with a little one with Down syndrome, we are more sensitive to comments about our children, and we should be, I get it, but this is one comment that doesn't really affect me. The ones that really get me are "Oh, you have a Down's baby." The words 'retarded' and 'fucktard.' Those two words used in any form, make me cringe.
I actually read a post one day on one of the Down syndrome sites, one comment was that she takes offense when people say that somebody is "Special."
I know that sometimes I have said to James that Brinely is "so special." I never really thought about this one before, but I understand where she was coming from. It makes sense. We have stopped!
Another one for some reason, that I don't like is "I have a Down's child."
I think it's that I have an issue with making it possessive because it's defining your child, it's saying that this is what you child is, your child is Down syndrome.
If I had to explain Adele's diagnosis to anybody, it would be, "this is Adele, she has Down syndrome." She is Adele. That is it! :)
The majority of my friends who have children with Down syndrome, they are a bit older, some already in the school system. I enjoy reading their stories and seeing how their little ones are doing great, but I also read about their struggles and concerns. It's tough some days but I also feel comfort that I am present in her future school. The teachers know me, they know Adele. The children know Adele and ask about her....it is so sweet. I am trying to pave a smooth road for her, things that I am able to accomplish right now, without it taking away from my snuggle and loving time with my children. I am still loving all of these moments and enjoying the baby stage, but I am also getting out there and learning about new programs, connecting with others through the blog and through Adele's Over the Rainbow Baskets. I will always be my girls strongest advocate. I will do everything I can so that they are able to succeed without setting limits, giving them all the love and support that we are able to give.
Lastly, we were out last night for dinner with a group of family friends. The dinner was planned because one of the friends is living with cancer. I prefer to saying living and not dying of cancer. I'm pretty sure that doctors have been proven wrong when they have told patients that they have 4-6 weeks to live. This is what Karen has been told. She has up to a month a half to live. She is coming up on 6 weeks and still going strong. The cancer has taken over a lot of her body and it is heartbreaking. She is receiving intensive chemotherapy and is fighting with all that she has...she is a fighter. After dinner, her husband came to our end of the table. While we were talking, he stared at his wife the entire time. He never took his eyes off of her and the love and admiration that I saw, brought comfort to my heart but also brought so much pain. He told me that she is the most remarkable woman. I started to cry. He told me that he does that every day, he cries. I have truly never seen love like this. I have never witnessed a man look at his wife, right into her eyes and without saying a word, show such love and emotion. It was a moment for me.
It was a moment where I realized that we all need to slow down. We all need to stop and take a breath. We all need to appreciate those in our lives, those who we wake up next to every day. We need to tell those who we love that we love them and couldn't imagine our lives without them. We need to let our children have moments where they just need us. We need to let them fall asleep on us and realize that sometimes all they want is love. Such pure, innocent love. I need to slow down. I need to stop thinking about tomorrow. I need to appreciate today. I need to enjoy the moments with my family and be thankful that I have a husband, I have two beautiful girls, I have amazing friends. I need to slow down.