Last week was a crappy Down syndrome week for me. I had a lot of moments where I was hoping that I would wake up and some of this journey was only a dream.
I don't like to compare my children to others, but I do like to know when other children hit certain milestones, just to use as a guideline. Adele is 17.5 months and is not crawling, she is not walking and she doesn't pull herself up on couches or toys. Some days it's discouraging.
Adele rolls all over the place and it's actually quite entertaining to watch. She will manoeuver herself around like a champ and it makes us laugh. When I see this, I feel that Adele knows exactly what she is doing and that she can get from A to B with no hesitation and she does it with ease.
Although I smile and chuckle when she does this, I can't help but feel a bit of upset and discouraged too. When we were pregnant with Adele, we stayed off of Google. We weren't interested in grim statistics or unhappy stories. We focused on the pregnancy and knew that she was healthy from the ultrasounds. When we thought about Down syndrome, we only thought about the delays, nothing more. Part of me wishes that I did some research on therapy and how Down syndrome affects her muscles and strength. Would it have changed anything? Probably not, but maybe I would have felt more prepared today.
We are surrounded by an amazing support system and we are eternally grateful and thankful. I have never felt sorry for myself, if anything, I am so proud to show Adele off and when I look at her perfect little self, my heart melts. It's just that I have moments. I had moments last week when I thought about the delays. She's not crawling, is this because her delay is more moderate or is it because she is so incredibly floppy? Does she not realize that she can get in four point and crawl to go play with her sister? What is related to the delay and what is related to hypotonia? I have fully accepted Down syndrome. I have not fully accepted what comes along with Down syndrome. Last week I wondered if she will get married, would she have a child? Would I want her to have a child? Yes, I think that far into the future. In a previous post, I said that I would work on taking things day by day and that I would savour all of these beautiful baby moments. I am human. I have failed. I worry.
I have heard many times over the past 17 months that Adele will get there in her own time. She will do it and just to relax. I know that this sounds a bit harsh, but I sometimes want to punch people in the face when they say this to me, except those who I love dearly. :) We are all on our own journeys. We all have obstacles that we need to overcome. I respect and appreciate that you will have mountains to climb and that you will feel defeated. I don't feel sorry for myself, I don't want to change our journey, I just have moments.
Of course Adele will get there. Adele will walk. I know that she will, but she needs the proper therapy in order for her to walk properly. This can affect her hips, her legs and her muscles. It's not just about talking, crawling and walking, it's about making sure that she gets the required therapy in order for her to be her best. Do her best. What happens now, affects Adele in the long run. This stresses me out. We receive support from two different services. We recently have added a Developmental Aide contract, where the aide will come into our home 4 hours a week and show us exercises, strategies and provide us with the necessary supports so that Adele will thrive in her environment. I don't want to overdo it, but I also want to get her where she needs to be.
We are starting speech in the next month. Will Adele be verbal? We don't know for sure. She babbles a lot now and makes a lot of sounds. We work on Signing Times, but it's not a guarantee that she will be verbal. I met a young boy and his dad this past summer, he was going into grade six. His dad, educated, articulate and loving, told me that his son is non-verbal. I asked him if they had worked on signing. He said that they never took the time. He mentioned that it's frustrating for all of them because his son is unable to express himself, he in unable to ask for things or have a conversation with his friends. I don't want this for Adele.
Years down the road, I want to look back and feel good knowing that James and I did everything possible for Adele. I will also look back and probably tell myself that I needed to relax a bit more and that I should have worked harder on taking things day by day.
Some things will be easier for Adele and some things will be more challenging. She works hard every day and you can see the determination in her eyes. I am happy that Adele was our second child, she has Brinley to use as her guide. She follows her sister around and sees her playing, walking and listens to her talking. I know that Brinley will work hard with her sister in future years. There is a special bond.
My friend Danielle (Baskets of Love - Down Syndrome) sent this message to me this morning...
I was thinking last night how we all have our own stressors. Each of our little ones are so different which makes each of our experiences different. We are all part of the same club but every journey is different. Conor may be doing well in the gross motor area but all I want is for him to eat. Whereas you're worried about Adele and crawling. There's always something to worry about. We are human. Only thing we can do is be there for each other when we each have our "I dislike Down syndrome" moments and I thank you for doing that for me.
I wonder if in a few years, when Adele goes to school, if all of this will be so minor. I wonder if she will come running through the door and tell me that she has lots of good friends and that she loves school. I wonder if my focus will be on her good health and how she has made our lives so wonderfully complete. Brinley and Adele are two beautiful miracles who were given to us, we were meant to be their parents. What a gift.
Having Down syndrome is like being born normal. I am just like you and you are just like me. We are all born in different ways, that is the way I can describe it. I have a normal life. - Chris Burke
Krista, Adele is surrounded by love and support and she kicks ass. - Adele's daddy