30 August 2015

You're OK Down Syndrome!

It has been almost a month since my last post. I think this may be the longest that I have gone without sharing my thoughts and feelings with our friends. Life has been crazy busy lately; I handed out five baskets in one week, I went back to work part-time and our place is up for sale with another house conditionally sold, we registered Brinley in preschool and we have therapy in our home twice a week with our developmental aide. I am trying to find balance and seriously, I bow down to working moms and dads. I want to be present for my children and spend lots of time with them, but I also came to the point, that after four years of staying at home, I needed to find myself again. I love going to work and I am a part of a really great team of ladies. ALL LADIES! This could be a crazy ride. I love teaching and I was missing so many aspects of the profession. It feels good to be back. My social media life and social life have taken a bit of a backseat, but I will not lose my passion and desire to continue to help new families. The baskets will live on!!!!

Although, I feel that I am in a great place, there are still these moments that bring me back down. When I deliver a basket to a new family, I give them hope and reassurance, I let them know that it will all be ok and that I will support them along this journey. I also tell them that our reality consists of therapy, some extra worries, and medical appointments. When we started this journey, I remember trying to be strong and I made sure to keep myself busy. When your baby is sitting in the NICU, your life is fast paced, you are always on the go and you are focused on the health of your baby. You don't have time to focus on your own health, your own emotional state, your sanity. When I deliver the baskets, most moms present as confident women, who have it all together. They tell me that they will be ok and that they are prepared for this journey. It's days later that I receive a phone call or message telling me that they cried themselves to sleep and that reality hit, they have a baby with Down syndrome. I show comfort and offer words of support and love. I know that it's all doable, I know that we will all get through it, I know that in the end, it will all be ok.

I walk into their rooms with a great big smile. I hug them and hand over a basket filled with hope and love. Sometimes though, I want to tell them that I am scared shitless about the future and that I don't have it all together. We were recently at the zoo with the girls and some twenty-something year old, walked right up to me and asked how old Adele was and then proceeded to tell me that she's really tiny for her age. I defended my child. I actually explained that she is wearing age appropriate clothes. I'm not too sure why I felt I needed to explain. She told me that we would really start to see her learning difficulties as she gets older. I defended my child. I explained that all children are on a huge spectrum and that we will continue to provide both children with all the necessary resources that they would need to thrive in this world. I'm not too sure why I felt I needed to explain. She told me that it's great that we decided not to terminate. She may go to a special school for special kids. I don't know why I kept defending my child. Her last statement to me before I walked away was that her step-daughter has a ''little bit of Down's in her." My jaw dropped.
I asked her what a "little bit of Down's" meant.......
You either have Down syndrome or you don't. I explained the three types, trying to educate such an ignorant girl. She told me that she had some of the physical features of Down syndrome.
I walked away.

I felt so defeated that day, like here we were, we've come so far and then somebody takes me down. I love answering questions. I love when others ask about Adele. I don't enjoy being treated as though we are saints for keeping our child. I don't enjoy being told that our journey will be difficult. I don't enjoy when others see Adele as being inferior to their child.

That day, I walked away wanting to hide Adele. I wanted to put her in a bubble and protect her from all the ignorance and hate in the world. I wanted to hold her and tell her that it's going to be ok. It's going to all work out. You will be loved and soon, the rest of the world will see your beauty, the beauty in your friends and that acceptance and support and love will be the way of the world. Instead, my heart ached.

As we were leaving the zoo, crossing the bridge over the river, I could see a sweet little girl coming towards us. She had Down syndrome. The mom's friend grabbed her arm and I could see her talking about Adele. They were both smiling, they were both excited. As we passed each other, I yelled out "we are on the same team."
It was at that moment that I realized.....you're OK Down syndrome, you're OK!

4 August 2015

My Life Has Changed

As I travel along this journey with my family, my life has changed in the following ways....

1) I need a calendar.
2) I plan my day around therapy and appointments.
3) I laugh a lot.
4) I cry a lot.
5) I worry a lot.
6) I think way too far into the future.
7) I savour milestones.
8) I cry when milestones are met.
9) I want to make the world a better place.
10) I look both ways multiple times when I cross the street.
11) I feel my heart fill with love when I look at my children.
12) I watch my children sleeping and I listen to their breathing.
13) I avoid play places during cold and flu season.
14) I don't take life for granted.
15) I snuggle my children too hard sometimes.
16) I think about the challenges that Adele will have to overcome.
17) I think about all of the good people in the world.
18) I think about all of the haters in the world.
19) I worry about the first day of school for both girls.
20) I get mad that Adele has Down syndrome.
21) I love Down syndrome.
22) I see the love between two sisters.
23) I go to bed too early.
24) I want my children to see the world.
25) I want my girls to take care of each other but live their own lives.

26) I love the attention that Adele gets when we go out as a family.
27) I get bothered when people stare.
28) I want to put my children in a bubble.
29) I am a helicopter parent.
30) I detest the word 'retard' and if you use it, I will call you out.
31) I savour quiet moments.
32) I love when the girls scream in excitement.
33) I love my new friends who have my back.
34) I love my childhood friends who love me no matter what.
35) I think about if Adele will find a partner and if she will get married.
36) Since giving birth, I can't jump on a trampoline because I pee my pants.
37) I spoil my children.
38) I love that Brinley only sees Adele her sister and not Down syndrome.
39) I love when the girls wrestle and play dolls together.
40) I never expected my life to be filled with so much love and gratitude.
41) I want to run up to families who have a child with Down syndrome and tell them that we are on the same team.
42) I cry watching commercials.
43) I admire bands and celebrities who take their time to appreciate our children.
44) I find it really hard that the girls are so close in age.
45) I love that the girls are so close in age and that they enjoy the same things.
46) I am tired.
47) I want Adele to know that she has filled my heart with love since the very beginning.
48) I love that the world is making shifts - inclusion, acceptance and seeing the ability.
49) I have learnt that beauty comes in all shapes, sizes, colours, religions and abilities.

50) When I was growing up, I knew that I wanted to get married and I knew that I wanted a family. I never expected my life to take the turn that it did. An unexpected diagnosis. An unexpected journey. We hope and pray for healthy children, and a journey that that doesn't involve trials and tribulations. We hope for the easy road, one filled with flowers and beauty. We have visions of the perfect family; the white picket fence. We don't think about how life may take us down another path, one that was never expected or hoped for.
The journey that we were presented with, was at first too much, too scary, filled with uncertainty, fears and worry. We soon came to realize that this was the plan, this was our journey, our own personal story that we get to share with others. We soon came to realize that as a family, we will climb this mountain, we will take in all of the amazing and beautiful moments. We have been blessed with two healthy and beautiful girls. We have been given a life filled with so much love, light, joy and happiness. Our plan took a slight curve, but let me tell you, I wouldn't change the journey, I wouldn't want my life to be any different, I wouldn't want the path with no bumps, no hills, no stumbling blocks. This is our life, our family, our story.