22 October 2017


Do children with Down syndrome deserve to join community sports teams alongside their peers who do not have Down syndrome?

It's such a simple answer ...... "HELLS YA!"

I recently contacted a dance studio in our community and asked a few questions about their programs for children. I was given some information and then when I brought up that my child has Down syndrome, the conversation petered off. I sent one more message and it was ignored. I was initially super pissed off and then went to the familiar ..... your loss cause she's awesome. 

It was the first time that I had encountered this with an organization. Adele has always been welcomed and one of the best experiences was with our community soccer association. She was greeted, she was included, she was spoken to like a little girl and they showed her respect. Isn't this how all individuals should be treated, no matter what? 

I get super defensive when I hear a story about a child being excluded. Not long ago, one of my closest friends sent me a text and my heart sank, my blood boiled and we swore a lot. 

Kelly - So I registered Michael for a gymnastics class (spoke openly with them beforehand about behaviour, expectations, redirection etc.) and today was the first class. It was awful. I had to step in because the instructor wasn't even trying with him. By halfway through, I wanted to leave because I could feel the tears ready to burst. Anyways, we made it to the end when I was told IT WASN'T A GOOD FIT. I just made it to the car before the tears finally burst out. I unregistered him. My husband says he's just not ready for structured classes and following direction. Now I'm second guessing my decision.
I'm so fucking tired, I don't think I have it in me to push back on this, but at the same time, I'm like...fuck them. He should be able to attend. But at the same time, maybe he isn't ready. How do you see the line when he is ready for structure and pushing him to understand structure? How will he ever learn structure if we don't force him? Am I expecting too much from him?

Me - It's tough. It's a hard decision to make whether to keep him in it or not. We tried soccer this past year and we stuck with it. She kind of did her own thing, but we were ok with that because she was being included by her coaches and teammates.
I mentioned once to James about pulling her and then was like....fuck that shit. I'm sticking this out because she's having a blast. 
Can't you get an aide through your funding? We can do that here with swimming lessons. Or what about a volunteer? I think it would be good for him.

Kelly - We don't qualify for funding because he's "high functioning." Another battle I'm exhausted from fighting.

Me - You're not expecting too much. We put our children in school and we don't just pull them out because they can't handle structure. We do the best we can. They do the best they can. They need some support. Down syndrome is life long and I've been told that they don't outgrow it.....aren't our children entitled to support? 

Kelly - I know he would have fun but he needs someone specific with him to redirect and encourage the listening and following directions.

Me - They should be able to provide that support. They should have somebody who can help. You need to call them and talk to the owner. I would have lost my shit today. 

Kelly - I know 100%, the reason why today was such a disaster, was because I was the one trying to get him to participate. He only melts down and tantrums for me. He wouldn't do that with a stranger, but no one was stepping in. I think I was too tired. I would have put up more of a fight, but I just didn't have it in me today.

Me - I would have been furious. You need to call. You have to step up. That wasn't ok. Things won't change unless you say something. They should be able to provide some support. That's just how it goes.

Kelly - I saw the owner this morning and she was just beaming at Michael. I don't think she knew the instructor's words to me. Maybe I should chat with her. The instructor was a huge part of the problem too. No patience. She didn't even try and Michael is all about pleasing people for attention. If she just gave him a little attention and praise, he would have bent over backwards for her. I'll look at maybe getting him help.

Me - It shouldn't always be you. It might take some time, but whatever. Some kids adjust quickly and others need some time. Kids are kids. We put our kids in sports because it's good for them. They get to build relationships, they get that socialization piece and we get to see our children having  blast. Why would the instructor say that it's not a fit? It was day 1. Give him a chance. She needed to problem solve. Figure it out. Fuck. I just got mad all of a sudden.

Kelly - Ya you did! 

Me - You talk to the owner. He will be fine. He may need some redirection. I need redirection. Ask my boss. We hit bumps. I know. It's frustrating. I know. We cry. We get mad. We get tired of fighting. Advocating is exhausting. You tell your husband that you need to fight for this because you need to pave the way for others. You let it slide and nothing changes. I'll fight for you. Let me tell you, Michael and Adele are going to thank us for all that we have done. They are going to succeed and thrive.

Kelly - I don't tell you enough how awesome you are. Thanks for the push.

Where is the problem?
That's an easy answer. Coaches, assistants and those running these programs aren't trained to work with children with any type of disability. They are trained to work with children who listen, follow rules, routines and directions. They aren't taught to problem solve. They aren't trained to work with all abilities. In a world where we are advocating for inclusion and acceptance, we continue to hit road blocks. I want my child to be welcomed on teams in our community without worrying about being discriminated against, ignored and a coach who doesn't know how to interact with her. 
Organizations need to train their staff. We come from all walks of life. We all don't fall into one category. 

Train parents. We are all busy. I get it. When a child registers for a team sport, the parents must read and complete a yearly training session online. Explain that we all come from different backgrounds, we have own own strengths, there may be a child on the team with a disability. Encourage teamwork. Encourage parents to have a discussion with their children about respecting everyone on the team. Let's be honest, kids typically aren't assholes, it's the parents. Let's start with the gown ups. 

Jake's Story

Ana's Story

I've struggled lately with Down syndrome. Preschool has been rough. I had a good cry the other day, wishing that my child could use her words to tell me how she is feeling. I wish that she didn't get frustrated. I wish that she could share secrets with her sister. I wish that she could say "good night" to us at bed time. I wish that the road was a bit easier for all of us. My heart hurts so much some days, thinking about the years ahead. We have been advocating for Adele since we found out at 15 weeks pregnant that she would be born with Down syndrome. I get tired. I get fed up. I get frustrated. Meetings. Community sports. Appointments. Fear. Worry. Judgement. 
We make it through, we push on, we keep advocating. Some days, I just wish it was simpler.

“Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow.” — Mary Anne Radmacher 

20 February 2017

Will Bedazzling My Vagina Save My Marriage?

I was once told that when you have a child with special needs, your quality of life becomes fuller, richer and your marriage becomes stronger and healthier. 

That was bullshit! Well, the part about a stronger, healthier marriage. 

Marriage is tough at the best of times and then you throw in a load of curveballs;
Phone calls

Your marriage takes a hit, a huge hit. It's tough at the best of times to find time for each other. It's tough to plan date nights, vacations and time to connect, because life is busy. We start to take each other for granted and become robotic like in our daily lives.

When Adele was born, I was a SAHM. This was my calling. I had the time to take care of my children. I had time to take Adele to appointments. I had time during the day to make phone calls and schedule therapy sessions. I was doing my job as a mother. 

I was gaining weight.
I was tossing and turning at night.
I was unsure if I was a fit for this job.

When Adele turned two, I decided that I needed to go back to work. I missed teaching terribly and my boss was willing to let me join the team and work part time, as this was all I felt I could handle. I needed adult conversation and I needed to feel valued. I also needed a pay cheque. I wanted out of our home, forget the memories of the flood and buy something bigger and better. This allowed us to do so many exciting things with the girls. 

Going back to work has given me an outlet, a time to talk to colleagues, laugh, eat teacher snacks and do what I love to do. It has also added an extra calendar in the house, schedules and routine have become even more important and I'm happy to say that it runs like a well-oiled machine.......when everybody is healthy, when there is no therapy, when we don't have appointments, when we don't have to book surgery, when we don't have extra-curricular.....

James and I are so invested in our children, that we have failed to work on our marriage. We don't communicate effectively. We don't take time to listen to each other. We plan meals. We plan swimming lessons. We look at the calendar and decide which one of us will take Adele to her next appointment at the hospital. We plan out which days he will take off for Adele's surgery and which days I will stay home. Consistency is imperative for Brinley. We need to get her to school on time, take her to swimming lessons and make sure that her schedule is not thrown off. Her world is just as important as Adele's world. 

James and I are two ships passing in the night. 

In the beginning, we said that we would work as a team. This is a partnership that we entered over eight years ago. We vowed that we would be in this together, for better or for worse. 

How did we get to this point?

We have allowed ourselves to get to this point. I blame us. I blame our lack of commitment. I blame my IUD. HA! HA! 

This parenting gig is tough. I knew the night we conceived Adele...yes, I know the night! We didn't know that this was going to be our journey. I didn't think about that things would not go as planned. I did not think about how much my life would be consumed by worry and fear.

I have let all of this interfere with my love for my husband. I have become a different woman. I have allowed others to dictate my happiness. When did all of this happen? When did I forget that I am a person too? When did I let go of who I am and my interests and my hopes and dreams? 

I am a part of the most amazing group on Facebook. All of the moms are medical mommas. They are the strongest warriors, they are incredible and they always have each other's backs. We laugh. We cry. We send each other vulgar messages. We talk about bedazzling vaginas. (This may save my marriage) We are real. Last night, one of the moms was sitting in emergency with her child.

This was her message:
He's been vomiting all day and can't keep anything down. Decreased output. Don't know if it's his kidneys or his gut....pseudo obstruction.
Well, on a positive side, we had a long run at home. Going to stay optimistic.
Just had a shitty emotional weekend and my body is saying eff you....I'm sore and I'm tired.

My response:
I like how you go from positive to shitty. You sound like the rest of us. We try to convince ourselves that it's all ok...we've got this and then two seconds later, we're all like....this fucking sucks and I want to cry and hurt someone. 

Her response:
Krista, you hit the nail on the head. Most days, we are strong warriors. We smile through everything, but today I am not strong.

Another dear friend told me recently that she talks to me about her son's health concerns because when she discusses issues with her husband, they fight. They can't see eye to eye. They are stressed.

A dear friend last week, had an emotional breakdown and she confided in me that her husband has nothing left to give. 

We all struggle because our feelings of intense love for our children become intertwined with frustrations, fears and total exhaustion. These feelings turn into arguments with our spouses. We become so upset, so engrossed in our own pity party, that we think our spouse just won't get it. Meanwhile, they are experiencing the same emotions.
I start to shut down when I feel that I can't handle anymore and in turn, this has placed a wedge in the marriage. 
If I am emotionally drained, I get snippy, I cry, I don't always reach out for support and then I push in down as far as it can go and then the cycle repeats itself.
I understand the value of taking care of yourself. I understand the importance of communication and I understand that keeping our family unit strong is of the upmost importance.

Date night will not fix our marriage. A weekend away will not fix our marriage. A lottery win will not fix our marriage, although it would pay for a top notch therapist in Bali.

James plays a vital role in this marriage. He continues to reassure me that he wants our marriage to survive, he says that he will do what is needed so that we can move forward, but James continues his robotic routine of getting up, going to work, texting and asking if I feel ok and then we talk about what we will have for dinner. 
Although he feels that he is making positive changes, I feel that he says what I want to hear and then the action part means nothing, it is stagnant. 

What is needed:
It is truly that simple. Communicate our fears and our worries. Communicate respectfully when we are frustrated. Stop retreating into myself. Be cognizant that the other person is also experiencing similar emotions. Access resources and community supports that will help guide us through this journey. Stop pretending that it's all ok.

It is going to take time. 

To my dear friends who are struggling, you are not alone. You will prevail. You will fucking rock this. You are a warrior. You are strong. You are scared. You are weak. You are frustrated. You are courageous. You are beautiful. You are capable. You are human. 

We hold each other's hands. We realize that we are not the Instagram life. We make mistakes. We fart in our sleep. We say the wrong things. We need to reach out when we need help. 

I was once told that when you have a child with special needs, your quality of life becomes fuller, richer and your marriage becomes stronger and healthier. 

30 July 2016

Dear Mom Shamers.....

As I sit here, living in my imperfect world, I find myself thinking about the the judgemental assholes around me. As we become more engrossed in social media, the more stories we share, the more pictures we share, the more personal information we share, hoping that our posts will go viral and the world will come back with comments of love, respect and support. 
Recently, a child wandered into a gorilla enclosure at the zoo, a young boy was pulled by an alligator into a lagoon in Florida and the world reacted. Imagine the helplessness and horror these parents were experiencing. Imagine the grief of watching your child being dragged into the water by an alligator or a gorilla tossing your child around like a rag doll. 

Mom shaming.

Instantly, the world jumped on these parents.
"Why wasn't she watching her child?"
"Where were the parents?"
"They are so neglectful."
"Worst parents."
"They will go to hell."
"Arrest the parents."

They must of been pretty shitty parents for taking their children to the zoo and to Disney World. What is wrong with you society? Sitting behind your computer screen, spewing out venom. 

Hundreds of comments shaming the parents. Have you ever turned away for a second, turned back around and your child was gone? Damn right you have done it. We all have. Our hearts race and we vow to never do that again....only to have it happen the following week. When we hover over our children, we are accused of being a helicopter parent, if we step back and give our children some independence, we are accused of being neglectful. What the fuck? Seriously. Children are impulsive and unpredictable little beings. We work our asses off to make sure that they are fed, watered, loved and taken care of. Some days, the best we can do is to give our children leftover cheerios found stuck between the seats in the vehicle, or a box of Kraft Dinner, or 4 movies in a row on the IPad. Some days, all I say is "NO" over and over again and other days, I am the "YES" mom. Some days, all I do is kiss and hug my children and other days, I just want space, a vacation and a 60 of rum. 

Mom shaming.

Yes, I am also guilty. I can admit it. I have shamed and criticized moms while at the playground and on social media. I tend to shame them in my own head, rather than confronting or writing a nasty comment. A stranger pulls out their cell phone, takes a video or snaps a picture of a mom doing something that they think goes against the grain, goes against what they see as appropriate.  It gets posted online and the criticism and chastising begins. The victim, unknowing of the post that is soon to go viral. 
The stranger:
1) None of us are perfect.
2) We are doing our best.
3) Maybe you should mind your own business.
4) You made yourself look like a judgmental a-hole.
5) Invasion of privacy is not cool.

Motherhood is hard, so why are we doing this to each other? Why do we feel that it is our right to shame other moms? 
Breastfeeding in public. You are the best. Put your tits away.
Organic food. You must love your child. Go hump a tree.
Pinterest parties. You are the best. If Pinterest said that it's the right way, we all know, this must be the only way. Stop competing with other moms.
Weight gain. You must be happy and in love. You're fat and unhealthy.
Baby wearing. You have such a beautiful bond with your child. You're a follower of trends.
Formula fed. Great work...gives you some independence. You didn't try hard enough to breastfeed.
Working mom. Way to go! You're a horrible mom.
Stay at home mom. You are amazing. You're lazy as shit. 

Shaming. Shaming. Shaming.

Let's get back to the days when we supported one another. Let's get back to when we used kindness and love to carry each other through our days. We work hard. We try hard. We want to be acknowledged by others. Tell a stranger that they are doing great work. Pay them a compliment. Tell your friends that they've got this! It's hard raising children. Stop shaming and start praising. AMEN!

19 March 2016

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! 



14 February 2016

I Am Doing Enough. I Am Good Enough.

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. 

29 October 2015

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. 

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!