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!
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.
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
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.
I've been meaning to write a post about this topic for a while, but it seems like sometimes life gets in the way. I have been a bit blog lazy lately. A while back, I wrote a post about special needs' parents and the things that you shouldn't say to them....ever. As I sit here today thinking about that post and going over the list of things that bothered me, I feel kind of silly.
This was my list.....
- She sure looks like she has a mild case of Down syndrome.
- Her head is so round, she must be mild.
- Kids with Down syndrome are ALWAYS happy.
- I'm so sorry that this happened to your family.
-
She looks so normal.
- My uncle's brother's nephew's cousin is autistic, so I know what it's like.
- Why didn't you stop having kids after the first one? WHAT???
- Did this happen because you and your husband are related?
- Wow! How old were you when you had her?
- You are a saint.
- Will you ever have any more children? That's kind of scary!
- Well, I guess it could be worse!
- God has given you a child forever.
- Does she actually look like a family member?
- You sure are handling this well.
- Do her brothers and sisters have a bond?
- Did you actually know when you were pregnant?
- What's wrong with her?
- Did you drink? Smoke? Do drugs during pregnancy?
- Will she always be like that?
- Is it somebody's fault?
- Did it come from your side of the family?
- They don't live very long, do they?
- I guess you won't have grandchildren.
- I'm sure she will get a job, maybe at Wal Mart or something.
- Do you take her out?
- Is her sister handicapped?
-
You should feed her more.
- Does she sleep?
- What will happen to her after you die?
- Is the rest of your family ok with this?
- You must be exhausted.
- Ummm....she's so......cute.
- Did you consider adoption?
- Is there a chance that she will outgrow it?
- I guess you can't go on vacations.
- Can I touch her?
- Stare....stare...stare....stare....stare.....
I don't know what you want to call it, but I have come to a point in my life, an epiphany, reached a great spot on the mountain, crossed a bridge. Whatever it is, it feels pretty good.
I have been overly protective when it comes to Adele. I overanalyze almost everything and I automatically assume that people are ignorant and that they can't see the beauty that lies within my child.
The first one on my list above, makes me laugh today. I laugh because I actually said this when I was pregnant with Adele. Those words came out of my mouth. I didn't know that I had said this until I recently came across a message that I had sent a friend on Facebook. I wanted my child to have a 'mild case' of Down syndrome.
Those words have irritated me when they come out of another person's mouth, yet I said the exact same thing. You know what this tells me? I was ignorant. I was uneducated when it comes to Down syndrome. I had no idea, yet I get offended and on the attack when others make these types of comments about my child. This one in particular doesn't really bother me, but it's a good example of where I used to be.
Recently, I have come across some posts on Facebook, where moms and dads are so bitter at others for the comments that they make about our children. I needed to take a step back. I get that we need to protect our children, we need to be on guard at all times because the world is out to get our kids, people are cruel.
I think what we need to realize is that we are the ones travelling this journey. We are the only ones who know exactly what it is like to walk in these shoes. We are the only ones who experience the major ups and down when you have a medically fragile child or a child with special needs. We need to stop assuming that others get it. They don't get it. Doctors, nurses, therapists and other professionals don't always get it. I've been witness to it, but it's up to us to speak up, we need to encourage change. Sitting back in your chair, biting your tongue and cursing in your head is not a solution.
People don't know what to say. People don't know how to say it. People aren't always out to get us. People sometimes feel uncomfortable because they don't want to say the wrong thing, they don't want to hurt our feelings, then it comes out all wrong and we get upset and post it all over social media that another jerk made an insensitive comment about our child.
I realized that I was one of those people before Adele came into our lives. I know I said the wrong things, I asked the wrong questions, I said things in a way that may have been offensive. Never would I have wanted to cause pain or hurt to others, but it didn't always come out right. I could just imagine what others said about me after I walked away. What did I expect of others? I wanted to learn, I wanted to understand and I needed for others to respect that I required some guidance.
I think sometimes we forget to relax. Last week, I was at Heritage Park with the girls. This lady kept staring at Adele. I got my back up and was going to ask her what she was looking at. When we walked past her, she stopped me and told me that Adele was absolutely gorgeous. She told me that she was a perfect little package. What did this teach me? Stop assuming the worst. Stop looking for negativity. Stop thinking that the world is a big cruel place.
While reading this blog post, don't come to the conclusion that I have turned into a wimp or that I will tolerate abuse or hatred towards our children. I will always advocate for our children, I will fight for what is right and I will stand strong behind my beliefs, values and morals.
There are some things that are inexcusable and offensive to myself and my family. I do not waiver when it comes to these three things.
1) Retarded - Just don't use it in any context
2) Down's baby/child - first person language is a must
3) Comments that are deliberately hurtful and malicious
The days go by so quickly. The moments become distant memories. I don't want to look back in 10 years and regret that I let worry and fear consume my days. There are assholes everywhere and there will be plenty who will come in and out of our lives, but there are so many amazing and kind people in the world who will love our children, who will support us and who exude happiness, love and light. Be the parent that our children need us to be. Educate others, but do it with kindness and respect.
I want my children to see their mom as a person who is making a positive difference in the world, one who does not let negative consume our days, but a mom who welcomes others into our lives. Our children are a product of their environment. Slow down. Enjoy Italy, Holland and all the other places that our children will take us.
Brandie Weikle created a project called the 1000 Families Project. It focuses on the new family, who is in our circle and modern views on family life. It's a really beautiful project filled with love and amazing heartfelt stories.
Our story was featured today.....
I feel like I haven't written about Down syndrome in a long time. It's funny because I started the blog with full intentions on just writing about our journey with Down syndrome, but it turned into so much more. I started the blog after we found out about Adele's diagnosis, that was around April 2013. I have written just over 200 posts, with over 200 000 views. I am so thankful to those of you who have followed along on this journey with our family.
In the last two months, I have turned a corner when it comes to Down syndrome. Adele is 22 months old and a fiery, spicy little girl. Up until this point, I have focused so much of my attention on Down syndrome and all that it entails, that I have forgotten that she is just a little girl. I have focused my attention on therapy, vision appointments, hearing appointments and feeding schedules. I have forgotten that she is just a little girl. I have focused my attention on the future; school, friends and life. I have forgotten that she is just a little girl.
Recently, Adele has really found herself. She is coming into her own. She is figuring out who she is, what works for her and how she fits in with our family. This is all within the past couple of months. Before this, I was focusing on the delays (although I claimed that I was just taking it day by day) and how we could get Adele caught up, get her to where she needs to be. What I have recently realized, she is where she needs to be. She is content. She is still not crawling and she is not ready to start running around the house, but she is one verbal kid. She is able to express herself, sign what she needs and uses lots of 'words' with her sister. She is not frustrated, nor are we. She is energetic and full of spirit, life and joy.
In these past two months, I have seen Adele transition from a baby to a little girl. Brinley and Adele play together, wrestle together and laugh together. They are playmates and I can see a beautiful friendship and bond forming between the two girls. I didn't see this before because I was so focused on what we needed to get done, where we needed to be and how we would get there.
I have read the saying many times over 'I Am Not Down Syndrome' and to be honest, it kind of bothered me. I didn't think that it was something that we needed to shout from the rooftops. Why would we, as parents, put our child on display and tell others that Down syndrome does not define them?
But alas, some of us need the reminder and it's obvious that I needed it. I think that sometimes we shout all of these things to others, start up Facebook pages, write blogs, but it's us who feels the insecurities. We fear the diagnosis and what it entails. We feel that if we yell at the world enough times, it will make us feel better and more secure and comfortable with Down syndrome. When we join the Facebook groups, we brag, ask questions and reassure others that our world is how it should be, a beautiful and wonderful journey. We put on a happy face for others and tell them that we are ok and that everything is how it should be; yet, behind closed doors, we cry, we confide in our partner that we are scared. As a specials needs' parent, I am not looking to be put on a pedestal or given a hug each time you see me, but I want you to know that it's sometimes really hard. It's sometimes overwhelming and sometimes you fear the worst. I don't always need to be the strong parent, the one who shouts from the rooftops that I have it all together, that I am confident with all of my decisions and that I feel ok when I think about Adele's future. I am not always sure, I am not always ok with the diagnosis, I am not always the best advocate for our children, but I am trying and I feel blessed to be surrounded by an amazing group of moms who are going through a similar journey.
As I move forward, as Adele gets bigger and stronger and smarter, I am learning to face the day with love and patience. I am learning to accept things as they are and to allow my children to be who they need to be. I am confident that Adele will be ok, but I also have moments where the worry takes over and I feel almost breathless and unable to cope with the thoughts about the future. It's such a whirlwind of emotions, with amazing and beautiful moments combined with fear and worry.
I came across a post today that I want to share with you from The New Family ......
"I quickly learned that having a child with extraordinary needs means needing an extraordinary family.....I have always thought of my family as the people you can count on to pull you through in tough times, celebrate the good, root for you when you're going for gold and inspire you to be your best self. Two and a half years ago, I thought all of that had to come from under our own roof, but I've learned since that, at least for us, the opposite is true. There are countless people in our family now and for that, I'm so very grateful. Although, it's Alma that's drawn everyone in, we're all better for it." Melanie Coté
This journey is about working together and supporting one another. We will celebrate together and offer words of encouragement and support along the way, but we will also cry on each other's shoulders and share our fears and worries. I don't want these moments to fly by. I don't want my days to be focused on when we will hit our next milestone. I want to love the time that I have with my two girls and feel reassured that this was the journey that was given to me, embrace it. We will climb this mountain and when we reach the top, I'm going to sit down with the biggest rum and coke and celebrate. We've got this.....most of the time. :)
It will all be ok.
