I’m still working out my words around this one because it’s so full of all the feelings I have, so bear with me. I think this is so important for you all to know, so I’m just going to jump in.
I’ve been using the hashtag #CriDuChatProud since I started posting on Facebook, Instagram and Twitter. I know some may be wondering about the word “proud.”
Accepted, yes, but PROUD??
In the very beginning, I would’ve said that Cri du Chat was a curse. Back then, we were faced with only the words we researched and they made us scared, sad and left us feeling sorry for ourselves. We quickly decided to focus on Eli, and not those words, and we were able to see how perfect and beautiful he was. Not despite his Cri du Chat either, BECAUSE of it.
I don’t feel that Cri du Chat is a curse. Not even close. Cri du Chat is a blessing. A BLESSING. Cri di Chat has given us a child who shows his strength and determination every single day. I don’t care that he’s crawling or walking or talking later than other kids…what I care about is that he works so damn hard to achieve whatever goal he is working on and SMILES the biggest smile while he does it.
If I do have a moment or day when I feel sad, and I do, I know that I am not sad FOR Eli.
I’m sad because I’m letting the world or “expectations” and other negative thoughts around ME get to ME.
Down days are normal and okay and it brings me comfort to really OWN them. It’s about ME, not Eli. Eli is happy and excited and loving life.
Cri du Chat has made me a better person.
Hands down. I was always an open-minded and compassionate person but Cri du Chat has brought out a part of me that really gets it. It’s hard to put into words, but I now feel like a mama to any child I see with exceptionalities. My heart warms when I see them and I want to know their stories, struggles and triumphs. My world is more full now than it was before Cri du Chat came into it and I’m so thankful that Eli’s sister Maeve is growing up in that world, knowing that it is amazing and NORMAL.
Cri du Chat has allowed me to be in contact with families all over the world who have the same experiences that we are having. We are all working to create awareness, acceptance and inclusion and that’s a beautiful thing.
I sometimes worry that people may feel sad for our story or pity Eli and, while I can’t control what people think, I want to say, PLEASE DON’T. Our life is amazingly beautiful. I am fiercely proud of my son and am excited about our journey with Cri du Chat. Cri du Chat is not something that I’m battling. Eli isn’t struggling with it. It is a beautiful part of who he is amongst many other parts that continue to unfold and grow. Yes, there are difficulties, but we are taking them in stride and accepting them as part of our journey.
I also feel a little uncomfortable when people say we, as Eli’s parent’s, are “inspiring.” I appreciate it, because I know it’s coming from a very loving place.
I want to promise you that each and every one of you who has a child that you love to the end of the universe would do exactly what we are doing.
Maybe you wouldn’t be writing about it but you WOULD love your child so deeply that you actually and authentically feel that Cri du Chat has blessed your life. You may read that and doubt yourself and I get it, because I would have doubted it too. When I first told my sister Dana (who had worked with many kids with exceptionalities in her career) about Eli’s Cri du Chat, she said “Kids with special needs are such blessings.” I can honestly tell you that I doubted her at the time but she was right. Oh, so right.
I am thankful that Cri du Chat is in my life. If it wasn’t, I wouldn’t have Eli. It is that simple. It is a part of Eli, a part that I’m as proud of as any other. We are in this together as a family and I love sharing it with you.