How Do I Love Thee? Let Me Count The Ways.

I'll get right to it! I love my husband and he loves me....a lot.

My top ten list....

10) James loves me so much that he tickles my back every night and expects nothing in return.....sometimes.....occasionally.....I pretend that I am fast asleep. He loves me. 

9) James loves me so much that when I am going to the bathroom, he likes to visit and tell me all the really juicy exciting details about his day. I know that it's the perfect time to share stories, when I want 5 minutes of privacy, on my cell phone, checking Instagram and Facebook. He loves me.

8) James loves me so much that when I tell him "NO" he tells me that "NO" is the new "MAYBE", then he pokes me in the eye with it and slaps my forehead. You're hopefully picking up what I'm putting down! ;) He loves me.

7) James loves me so much that when I am taking my 3 minute shower, upstairs, in our bathroom, with the door closed, he comes in with the children and allows them to stare at me through the glass door and yell while he laughs and walks away to play his game on the IPad. He loves me.

6) James loves me so much that when I am telling him a story about work or his children, he nods and smiles, then when I bring something up later on, he stares at me blankly and wonders why I assume he knows what I am talking about. He loves me.

5) James loves me so much that when I tell him I need a vacation and some relaxation, he wonders what he can do for me that will cost $5.00 + tax. He's generous and he loves me. 

4) James loves me so much that within 5 minutes of delivering Adele, I yelled "GET IT SNIPPED" and he was on the phone and booked himself in without first reading the YELP reviews. He also allowed me to ask the doctor if he would forego the freezing just so James could experience some of the pain that I endured while delivering his beautiful children. He loves me. 

3) James loves me so much that when my head spins in a full circle and my eyes turn red and roll to the back of my head and smoke pours out of my ears and every single muscle in my body tightens and contracts, he cautiously and gingerly tells me that he loves me.

2) James loves me so much that when I asked him to go to the store for maxi-pads and tampons and for some Canestan because the antibiotics that I was taking made me want to rip my vagina off, he smiled and made his way to the local drug store. Upon his return, he had all of the items and a large bag of mini eggs. He wanted to distract the cashier from focusing on the other 3 items in the cart. He knows I love mini eggs. He loves me.

1) James loves me so much that when we were engaged, I got the stomach flu and lost control over all bodily functions and shite in the bed, on the carpet, on the floor, then managed to hit the toilet, he didn't say a word. He grabbed the yellow rubber gloves, held his breath, grabbed a scrub brush and got down on his hands and knees. He still wanted to marry me. He loves me. 

To all the men who nod and smile, I raise my glass to you! 

Adele's Over the Rainbow Baskets - Down syndrome LOVIN

WEAR YOU FUNKY SOCKS ON MONDAY, MARCH 21st!

IT'S WORLD DOWN SYNDROME DAY!

I Am Doing Enough. I Am Good Enough.

Thank you Modern Nest Photography

My last post, which was over three months ago, was about how for a brief moment in time, my life was normal. Lots has happened over the past few months; we moved, Adele had eye surgery, we've had 3 developmental aides, with a new one starting next week and the craziness of going back to work part-time. I feel like my head has been spinning and that I get pulled in so many different directions. While James and I were laying in bed one night, I said to him that I didn't know if I was cut out to be a mom, a wife. It's hard to admit defeat sometimes, but when life is going at warp speed and not taking the time to enjoy all of the fruits and joys, it can really take its toll on a person. 
We have decided to go away next month for a few days to find ourselves once again, to reconnect with each other and our children. We desperately need a break from life. 

I've been back and forth with my thoughts on Down syndrome lately. That may sound bizarre, but as we get closer to transitioning from home life to school life, the worries are ever present. I recently went to our local school to talk about programming for Adele and what the next few years would look like for her. There really isn't a lot in our town, so it was a bit discouraging. James and I are tossing back and forth the idea of just keeping her at home for one more year and then enrolling her in our community preschool. She is involved in Special Olympics, swimming, four hours a week of therapy and community outings. Is this enough? How much programming do three years olds need? Children with exceptional needs, do we sometimes over-program? Do we feel that the more the better? At what point do we just sit back and let them be kids? Can we just let our children with Down syndrome, just be kids? I find that as a mom to a child with special needs, I stretch myself so thin that I forget that she needs to just be a kid. Do I always need to focus on developmental milestones? Can't I just let them come? I should probably increase her therapy hours; she is allowed nine hours a week.....why are we only accessing four hours? I know why.......

I have a developmental aide coming into our home. I have a speech therapist coming into our home. I have a physio therapist coming into our home. I have an occupational therapist coming into our home. I have our FSCD caseworker coming into our home. I fill out monthly paperwork to get reimbursed for our expenses. I book hearing appointments. I book vision appointments. I book pulmonary appointments. I plan family outings where Adele can get around and have fun. I buy developmental toys on a regular basis. I turn into 'THAT' mom when Adele gets sick. I panic, I lose sleep, I think about the little one with Down syndrome who just lost her life to a pulmonary infection. I think about her tiny little passages and if they can get her through this cold, this flu. 
This little being whose make up is different than others. A cold isn't always a cold. 

I am doing enough. 

My love does not waiver when it comes to my children, but I need some gentle reminders sometimes that this life that I have been given is for a reason. I have been given both girls for a reason. My patience, my strength has been tested time and time again. I've made it through the shit times, I've made it through the sleepless nights. I've come out on top each time. I remind myself that Down syndrome is a part of my life for a reason and when I look at our children, I see beauty, hope and joy. 

What is beautiful about Down syndrome?

1) Stunning almond shaped eyes
2) Sweet, smaller and gentle features
3) A little gap between her toes which will be perfect for wearing sandals
4) The weak muscle tone makes for the best hugs
5) That smile
6) The love, the unconditional, beautiful love
7) The joy
8) Beauty inside and out
9) There is no judgment
10) So innocent, so pure and so loving

When life gets overwhelming, when you read #theluckyfew, over and over again, when you feel like all the Facebook posts and Instagram pictures are what you strive to be, don't be discouraged. I wish sometimes, I would see that your day sucked, that you curled up in a ball and cried in the corner of your bedroom because the stress and worry took over. I want to see your true reality and not your projected reality. I have never been in competition with my fellow moms, I have never come across as the mom who always has it all together. I am real. I have cried. I have wished for normalcy. I have questioned myself over and over again. I have wondered if life would be more calm, less busy without a child with Down syndrome. I have let myself go there, because it is ok. 

Today, I pick myself up off the ground. I tell myself that my world is as it should be. I tell myself that what I am doing is enough. I ease up on myself. I remind myself that I am travelling this journey with some pretty fantastic people. I am thankful for what Down syndrome has done for our lives. I am allowed to feel defeated and show weakness because I am human, I am a mom. I am good enough for this role. I will stumble many times, but I will always get back up on my feet and will be grateful for the blessings that surround me. 

Adele's Over the Rainbow Baskets - Down syndrome LOVIN

For A Brief Moment In Time, My Life Was Normal

Picture courtesy of Acorn & Leaf

It's been a while, a long while since my last post. Let's get to it........

Today, I had a moment, actually, several moments that were filled with joy. Yesterday, my mind was filled with angst and worry and I felt extremely overwhelmed. It's funny how two days can differ so much. Yesterday, FSCD (Family Support for Children with Disabilities) did a presentation for our staff. They talked about funding, supports, services, resources, who to contact, what not to expect, what you won't receive and so on and so on and so on. 
The word 'typical' was used numerous times. The word 'disability' was used numerous times. I found myself feeling overwhelmed and the fears and anxiety set in. I almost had to leave and go take a break, so that I could gather my thoughts. In that moment, I saw a life filled with challenges and a life where we would have to fight for everything that we know Adele deserves and is entitled to *sigh*. It was a difficult two hours. The presenters weren't aware that we receive services through FSCD, they were talking to a room filled with professionals, those who go into the preschools and homes of families who receive services and funding. 
I learnt that it's imperative that we are so mindful of our audience and that we all need to be aware that we are all on our own personal journeys. Yesterday, I felt defeated.

Today, I met a friend at the Best Western Port O Call in Calgary. After our visit, I decided to take the girls for lunch. I don't typically take them for lunch on my own, they both need my attention and truly, I end up with indigestion because I eat so fast and it's usually not enjoyable. :) The girls and I sat at a table in Sky Harbour, separated from the rest of the patrons (my request) because Adele is a screamer! She randomly lets out giant, wall vibrating screams. We got our drinks and of course Brinley knocked over the full glass all over the stroller and floor. The waitress came over and cleaned it up. She graciously offered a snack from the buffet, just to keep them happy and occupied. As we sat and ate our meals, at least five waiters and waitresses stopped at our table to talk to Adele. It wasn't a forced visit, it was a genuine and sincere moment for each of them. They didn't point out just how cute she was, or that she was dressed in super adorable clothes, they talked to her, they laughed with her, they joked with her, they treated her like the wonderful little girl that she is. There was no talk about Down syndrome. There was no pity in their eyes. There were no comments about our life, the future, the hardships, the developmental delays. For a brief moment in time, my world was 'normal'. I didn't think about supports, resources, therapy, appointments, the future. For a brief moment in time, I forgot about yesterday and focused on the beauty of today. 
I don't expect for people to come up to us and reassure us that our journey will be beautiful. I don't expect for people to treat Adele differently. I don't expect special treatment. When I am out with my family and the world around us gives us hope, it brings me peace and comfort. Today, my world was filled with contentment and joy. 

Picture courtesy of Acorn & Leaf

James loves Adele beyond any love that I have ever witnessed. He has a soft spot for Adele. She tests his limits, she lets him know who's boss and she looks deep into his eyes and lets him know that she loves him so madly. James doesn't talk about Down syndrome, he doesn't talk about his fears, he focuses on the present and loves his time snuggling, playing and laughing with Adele. He keeps me grounded. 
After work today, I could tell that he wanted to talk. As he was feeding Adele, he told me about the boy with Down syndrome who works at the Wendy's by his work. James loves that the boy enjoys his job and that he is making a difference in his community. 
James asked him how he was doing, the boy answered but James couldn't quite make out what he said. 

James had a moment. He felt defeated. He thought about Adele's future and the fears took over. He had a moment where he saw Down syndrome, he saw a disability and not the ability. He thought about how Adele will struggle and how she will be faced with challenges. His heart ached. As he told me this story, he cried. James has never let down his guard. He is strong, but today, he showed me that he is vulnerable. 

We will continue to travel this journey as a team. We will feel defeated. We will rise above the challenges. We will confide in each other. We will argue. We will laugh. We will love and savour the beautiful moments.We will struggle to see eye to eye. We will worry about our children. We will push on. 

Adele's Over the Rainbow Baskets - Down syndrome LOVIN

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!

Adele's Over the Rainbow Baskets - Down syndrome LOVIN

 

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.

Adele's Over the Rainbow Baskets - Down syndrome LOVIN

I Blinked.....

I blinked and two beautiful years have flown by. Adele will be two years old tomorrow.

Our sweet and wondrous baby arrived in a flash. She was quiet yet full of life and love. My time with her was very brief. I was allowed one kiss and then she was whisked away to the NICU. I remember looking at her little face, thinking that she was the most beautiful baby I had ever seen. I felt the worries dissipate. I felt love take over my heart and mind. I couldn't wait to hold her and reassure her that I will always protect her and love her until the day I die. I could hear a nurse tell her colleagues that when she saw Adele, she saw beauty. My heart felt warmth and comfort.

The first time I saw Adele in the NICU, my eyes filled with tears. It was over twenty four hours before I could touch her hand, run my finger along her tiny nose and tell her that she just made my whole world complete. As I looked at her perfection, the room was silent, there were no nurses, no beeping machines, no other babies. Our little miracle was all I could see. I cried for Adele, I cried for myself, I cried for all the times that I had doubted myself and for the times when I allowed ignorance to dictate my emotions.

As the days passed, my love grew and bloomed to a point where I knew that Adele had chosen us, she had chosen our family, she had chosen to be a part of our world. Brinley would sit in the NICU with me everyday for over two hours and cuddle her sister, she would touch her hair, hold her hand and rub her cheek. She felt a bond, a love that only siblings could feel. I knew that love and commitment to each other would knock down any negativity or hurt that would present itself in the future. The girls would be best friends.

As my love grew, there were still worries and fears that would creep in from time to time. I would feel overwhelmed and at times, my heart ached thinking about the future and what it would hold for Adele. I sometimes got lost in negative thoughts and let concern consume my days. I have worked hard to be present, to enjoy these precious moments and to celebrate all that Adele has accomplished in these two short years. Adele is truly a miracle.

As I watch Adele grow and try to find her place in the world, I can't help but feel reassurance and gratitude for the life that we have been given. I am in awe of all of her capabilities and mastery of so many skills. I am in awe of her beauty and excitement for life. I am in awe of how she wakes up each day and laughs and shows love to all those around her. She has impacted thousands of lives, all across the globe. Her stubbornness and fiery personality shows us that she has determination and a zest for life. What a beautiful life.

Our world completely changed two years ago. Our world became a place where we have been taught to see beauty in all people. We have been taught that slowing down and taking in each moment, makes the days better and brighter. We have been taught that we don't set limits, but that we encourage and celebrate and love the beauty that lies within each and every one of us. What a beautiful life.

I am proud of Adele. I am proud that I am her mother. We will travel this wondrous journey together. We will celebrate, we will cry, we will overcome the obstacles. When we celebrate two years tomorrow, I will look back on all of the moments, the ones that hurt, the ones that felt amazing and the ones that have made me a better person. The day will be filled with emotion and love, feelings that only a mother can feel for her child.
Two years ago, my world became brighter, my world became complete.

Thank you Adele. xo

Let's Be The Change That The World Needs

We are back from vacation! It was restful and relaxing and the girls had a blast. There were no major catastrophes and we only had to whip out the first aid kit a couple of times. All in all, it was a successful week long vacation.

Today, I delivered two baskets to very deserving and beautiful families. The first one, we had the opportunity to only visit for a few minutes, but the conversation has repeated itself over and over again in my head, throughout the course of the day. Baby is still in the NICU and mom is very anxious to get her beautiful daughter home, so that they can start to get into some sort of routine and begin their lives as a family of three. Most baskets that I deliver are to families who receive a diagnosis at birth. It can be a bit of a difficult time with lots of emotions and tears. It's overwhelming for families, but with the right support system and community resources to help guide you, it all works out. My little girl has brought so much love, laughter and light into our lives and to countless others all across the globe. Two years ago, the world became a better place.

The new mom was telling me that they received a pre-natal diagnosis and that all throughout her pregnancy, she was encouraged by doctors and medical professionals to terminate the pregnancy. As she was telling me this, I could feel my blood start to boil and my heart really did ache for this beautiful family. Mom is not from this country, so she has some difficulties expressing herself and getting out the right words, deemed to be a bit difficult. She was not able to stand up for herself in the way that she wanted to. She knew that she wasn't going to terminate her pregnancy but she didn't receive the support and guidance that she deserved.
When we received our diagnosis, I was 15 weeks pregnant. My OB was caring, compassionate and she allowed us to grieve. We did grieve. We went through a few weeks of feeling sorry for ourselves, lots of worry, fear and upset. We were entitled to this time, but we also were surrounded by people who didn't allow us to wallow for too long. The medical professionals in our lives didn't tell us that they were sorry or that our child with Down syndrome would not have a bright future. They took us by the hand and guided us in the right direction. They gave us facts about OUR unborn child, not a book filled with grim statistics that were not relevant to our pregnancy. We focused on the ultrasounds and we educated ourselves.

I don't know what James and I would have done if we were told over and over again that this child has no right to be in this world, that she would be a burden on society or that this child would be a burden to us and our family. We looked up to these people, we valued their opinions and knew that they would never tell us to do something that we would later regret, for the rest of our lives. You are vulnerable when you receive news that you don't expect. You are in a state where emotion takes over logic. You fear the worst and let worry creep into your mind. All you need is for your hand to be held and told that it will all be ok. You need to be told to breathe and relax and to not let those who are ignorant and uneducated dictate what you should do with your body, with your child, with your future.

I am not for banning abortion when a family receives a pre-natal diagnosis. I was not put on the earth to judge others. Telling a woman what she should and shouldn't do with her body, is the wrong way to go about it. What needs to be law, is that when a family receives the diagnosis, they must get educated, they must meet with a family, they must meet with those who are qualified, those who can explain the beauty of Down syndrome and what our children will achieve. When a woman receives a diagnosis and is told that is against the law to terminate, here is a pamphlet and is sent on her way, that is not making advancements, this is not going about things the right way. With some education, a woman and her family will see the potential, the beauty, the gift that lies ahead.

As I stood there with this mom today, she felt lost, she wasn't given the resources, the forms, the community supports that are available to her and her family. She is fearful of the future and is unsure how to proceed. I reassured her that I will hold her hand and be the support that she needs and deserves.

I so badly wish that the world would change. I know that it sounds like such a silly statement, but I was hurt today. It is going to take all of us to change the world. We all need to be in this together. We need to be the parents that our children need us to be. We need to keep advocating. We need to keep showing the world the beauty that lies within each of our children. When we stand together, we will be the change that the world needs.

Adele's Over the Rainbow Baskets - Down syndrome LOVIN

 

 

 

The lovely pictures of Adele were taken for a photo shoot that we did for Acorn & Leaf. Thank you Modern Nest Photography for taking such amazing and beautiful pictures.