A Story

There’s this remarkable story…

A few stories actually.

They all impact each other and come together in the end.

Story #1 – About 56 (I think) years ago John K. became the big brother to a delightful little girl named Shirley. Shirley has Down Syndrome. I don’t know all the ups and downs of that sibling relationship but I do know that there is a lot of love shared between the two.

More than twenty years later John met and married Mary Ellen. She had had a little bit of experience with people with disabilities before meeting John and shared his love for differently abled people. Their passion for people with special needs grew and after having three birth daughters they began fostering and eventually adopted 4 children from the foster system. Two of them have Down Syndrome!

About 6 years ago they decided it was time to adopt one more child with DS and brought Aiden home from Bulgaria! He is a big wonderfully comedic 14 year old boy now with the best Bulgarian accent you will ever hear.

Story #2 – My husband Jon met the K family about fifteen years ago when their first adopted child with DS, Brent, was about 3. He remembers playing with and loving him at church each Sunday. They were good buddies. After high school Jon decided to volunteer with the K family at camp Amasa where they ran camps for adults and children with special needs. This was his crash course into the community of the differently abled. He can tell you many hilarious, life changing, perspective altering moments from that summer.

Story #3 – I had always been drawn to supporting, teaching and befriending people with special needs. My mom remembers it as young as 5 years old. When I was 16 my mom made the decision to bring Maggy in to our house. Maggy has Down Syndrome as well and fit in to our family perfectly. She actually could be credited with getting most of us through our teen years relatively unharmed. No matter how mad we where at the world or each other, we were never mad at her. She kept us coming home and was a calming spirit in our house. She is everyones favourite sister. When she joined our family I started talking about wanting to adopt my own child with DS.

Our stories coming together

Jon and I met in college and started dating about 12 years ago. I remember talking openly about wanting to adopt a child with DS and him being completely on board. His work with Amasa and watching the K family grow had prepared him for me!

We followed closely and watched the K family adopt Aiden. I was so happy for them and wondered when it would be our turn. Aiden came home in October 2009 and in January 2010 Mary Ellen sent me an email from her agency for a file of a little girl needing a family. We didn’t end up adopting that child but it got our wheels turning.

It was time for us to adopt a child with DS. Jon and I jumped in. Although it was much earlier in life than we had thought it was the right choice. We have been so blessed by the adoption process and by Sofie, our own Bulgarian angel. In August 2011 we brought her home.

At the airport, first moment together as a family.

Story #4 – John and Mary Ellen’s oldest daughter, Heather, has known for a long time that she would adopt a child with DS too. My Jon was in youth with her and worked with her at the camps. We have been honoured to walk with her and try to support her in any way we could. She also chose Bulgaria to find her son. And yesterday, her own dreams came true.

Heather became a mom to Wyatt Timothy Vasil K and brought him home after more than 24 hours of traveling yesterday! (His middle name, Timothy, is after Jon’s dad who passed away 6.5 years ago. He was the K’s pastor as Heather grew up and encouraged her, reminding her she would make a difference.)

I got the privilege of being their chauffeur between the airport and ferry, as well as photographer for this momentous occasion! Here are the pictures from last night…

 Waiting
 Nana’s first sight. So much joy in her eyes.
This moment is pure emotion. 
Joy. Relief. Thankfulness. Wonder.
Welcome Home Wyatt.
 The family that made it to the airport. 
He has a lot more of them to meet today!
 


Congratulations Heather!
 
I’m so glad that you stepped out and chose to adopt this little guy. You and him make such a perfect family together. I’m thankful there are strong women, like you, in this world who are willing to follow their hearts and make a difference. This is really just the beginning. Thank you for letting me be a part of this day and know that Jon and I will support you and little Wyatt in any way we can!
 
You can read her own blog and details of her adoption HERE. 
 
 
I adore how all these stories have wound in to each other. I’m tempted to say that Mary Ellen and John’s story has come full circle with Heather’s adoption now but I don’t think that’s accurate. I think lives are going to continue to change because they have witnessed or been a part of our stories. I think more stories are going to be made and I can’t wait to see that happen.
Thank you Shirley for being born and igniting a passion in your big brother.
Thank you Mary Ellen for marrying John and building the family that you have.
Thank you to you both for setting such a beautiful example of love and acceptance and perseverance in your own adoption journeys and family.
Thank you for preparing Jon for my world and having a huge part in the amazing man he is today. The experiences he has had with you were also a big part of why he was hired in his current career. So really our entire family’s well-being is, in part, thanks to you!
Thank you Maggy for being the wonderful person and sister that you are and solidifying a passion for adoption and DS in my own heart.
Thank you to my mom for bringing Maggy in to our lives and being the strong, supportive woman that you are.
Thank you to Jon for being the truly remarkable husband, father and man that you are.
Thank you everyone who has supported us in our own adoption and parenting journey. We absolutely could not do it all with out you.
Thank you to Heather for listening to your heart and jumping in to this with both feet. You are incredible and are going to rock this Mommy biz!
And a huge thank-you to our Bulgarian angels! Aiden, Sofie and Wyatt! You are three miraculous children who have been through more in your short lives than most adults ever will. You are survivors, brave, funny, joyful and loving kids. I can’t wait to see what you do in your lives and how you change the world! You’ve changed our world so much already! I can’t wait to see all three of you together one day!

3 years HOME!

A girlfriend of mine once asked me if Sofie was what I had expected when we committed to adopting her. This got me really thinking…

What were my expectations? 
What are they now? 
How or why have they changed? 
How have I changed?

As I have said before, we went in to this adoption with our eyes wide open. As open as they could be anyway. We did not have the expectation of bringing home a typical child. We had no feelings of loss of an expected future we had hoped for her. We have high hopes for her future, especially considering what her future looked like before coming home, but they are hopes, not expectations.

We did our best to prepare by checking out resources, talking through parenting strategies for her possible needs, and informing those around us how the first few months might look. I would say we were more prepared than most.

I know of families who have gotten caught up in the excitement of adoption. It is hard not to see the innocent face of a starving child and not want to do everything in your power to help him. But there is a reality that needs to be understood when caring for an institutionalized child. I have seen parents bring these precious children home and not know how to handle the stim-rocking and flapping, the crying, the self-abuse, the drool, the stink, the food issues, the delays, the poop smears, the throw-up, the screaming, the hitting, the wild eyes and the mountains of other behaviours, not to mention the hurdles that come with any diagnosis that might accompany. That’s not even mentioning all the paperwork!

We knew what caring for a person with Down Syndrome entailed. We knew that blindly adopting a child could bring challenges that might be a surprise to us. We expected therapies, health concerns, prejudices, laughter, hugs, tears, patience, behaviours, and love. We knew it would be hard but worth it.

Honestly the only concrete expectation I had was to bring home a hurt little girl who we would love to life. Essentially, that is what we got and what happened. Three years ago Sofie arrived to us as most children from institutions do. She was twig thin. Her eyes where sunken in her head with large dark circles under them. Her skin was pale and transparent. She thirsted for stimulation but didn’t know how to play with a toy besides throw it. She had an open sore rash on her bum from not being changed for hours. She wanted food but screamed through the process of eating because it hurt her and there was a lot of trauma from the way she was force fed in the orphanage. She stank, so badly, from no dental care and her stomach eating itself. She seemed so fragile and still. Like she was stuck in a shell or seed and had to break free and come back to life.

In the orphanage, first day we met her.

One month home

I did expect more health problems. Sofie is basically completely healthy. She has no heart defects, even though we were told she did from Bulgaria. She doesn’t get chronically sick through the winter. I know some kids with DS who basically go in to quarantine in the winter months. She has had one set of tubes in her ears but they are out now and so far doesn’t need new ones! She has no cavities. If she ever does need dental work it will likely mean dental surgery but that’s not really a health issue. She needed glasses for a while but with age her eyes have gotten stronger and she doesn’t need them anymore! She is tiny for her age still, even by Down Syndrome standards, about 25th percentile for weight and 10th percentile for height. We don’t know how tall her birth parents where though, so there may be a genetic factor in her lack of growth. She was also a baby who didn’t thrive for 3.5 years, and neglected babies frequently never fully reach their height potential. We have been so blessed with Sofie’s health. It’s been amazing to see how quickly proper nutrition can help a child.

One year home
What are my expectations now? I try not to have many concrete expectations for Sofie much beyond what she is capable of doing at the moment. It is reasonable for me to expect my other two girls to learn to talk clearly, hold jobs, live independently and be financially self-sustained. These may not be reasonable expectations to put on Sofie. Only time will tell. I hope for all these things for Sofie but I’m not sure that I expect them the same way I do for my other two. We work hard with Sofie to help her to grow and meet her full potential. She will surprise and astound us with her abilities, I’m sure. I’m just not sure they will be the same abilities as her peers… Something I should keep in mind for all my girls actually! 
Two years home

I don’t think my expectations have really changed because there was so much unknown when she came home to us. I couldn’t have had expectations if I wanted to. It would have been very unrealistic of me. I have a more concrete understanding of what her needs and potential abilities are now, which have led to more realistic dreams for her, but not expectations. I have hopes and dreams for her, like I do for all my girls. Yes, hers are a little more painted in unknowns and potential adjustments but they are still there.

I hope she will be able to speak clearly enough that everyone can understand her. 
I hope she learns to read and write.
I hope she grows out of most of her behavioural issues. 
I hope she will be able independently do all her own personal care. 
I hope she has good friends. 
I hope she finds a hobby that she loves and can fully participate in with her typical peers. 
I hope she goes to her prom and dances the night away. 
I hope she gets to do some kind of post secondary education. 
I hope she can live independently. 
I hope she knows love from people other than just her family. 

She may not do or get all these things. She may get to experience them all but it may look a little different then it will look for her peers. She may learn to write but spell really poorly. She may go to her prom but need a support person to go with her. She may live independently with supports coming into her home a few times a day to assist her and check on things.

I think I’ve changed a lot in these last three years parenting Sofie. I would never have described myself as a patient person but I have been told that I am numerous times lately. I think outside of the box more. I’m so much more aware how fast paced and stimulating our world is. I live in the moment more. I don’t worry about my kids being well behaved as much as I used to and don’t get as wrapped up in the mommy competition as I used too. I feel more aware of my limitations as a person and a mother. I don’t think I am always the best thing for Sofie but I am able to ask for help better. I have given up always trying to plan everything and be in control, though I still have a lot of work to do here. Mostly, I think I appreciate the little things in life more. Sofie finds joy in such simple things that I take for granted and loves life with her whole being. It is inspiring. She is joy through her whole body.

Three years have past. Sofie was born to be part of our family. She has come such a long way. While I am excited for her to meet some of her next milestones, like being potty trained and starting to read, how far she has come is never lost of me. It’s been a wild, incredible, joyous and hard three years!

I am so blessed.
Happiest 3 Years Monkey!
August 1, 2011 – met her for the first time
August 4, 2011 – took her out of the orphanage forever! Gotchya Day!
August 14, 2011 – Arrived home in Canada to sleep in our own beds as a family!

Three years home

Sofie’s stats after 3 years home:
She is over 38 inches tall and weighs 36lbs.
She can feed herself but it’s messy and sometimes she just likes us to help her.
She loves to boss her baby sister around.
She adores her big sister.
If she had her way, she would always be in a dress or skirt.
She likes to play with baby dolls, dress up and hair accessories.
She can identify some feelings, items, book characters, and a few colours occasionally.
She can get dressed almost by herself. She just can’t fix a problem like both legs in one hole.
She clears the table after eating and helps pick up toys.
She still throws, hits and pushes way too much, but it is moving in the right direction.
She is a Daddy’s girl. They connect on a deeper level.
She can verbally say the alphabet and identify about half the letters.
She LOVES music and dancing. It is her passion.
She has probably close to 300 words that she either says, signs or understands.
She likes to go out in the car, anywhere, especially if it is just her without sisters 🙂
Most of her BM’s make it to the toilet now!
She loves the trampoline, and doing anything in water that isn’t too cold.
She is quite independent and social, but very attached to Mommy and Daddy and those in her circle.
She likes to read books and colour.
She comes up randomly to us to give us a kiss and a hug and tell us she loves us.
She loves cuddles, eating popcorn and watching movies.
She is very bossy.
She is happy, and joy, and fun!

Post-Christmas Blues

Yesterday was a good day.  Last weekend and even most of this week has been actually pretty great. It was the first really good few days in over a month. It has been really rough lately. Stomach flu and cold for all of us, sleepless nights with the baby and many behaviours from Sofie especially… which didn’t make my life particularly pleasant. Even Livi had a few meltdowns this month. They don’t happen often for her but when they do, they are epic.

We expected some residual issues with the post-Christmas blues. Kids and adults, alike, generally have the ‘blahs’ afters Christmas. I feel like it hit our home, or at least me and Sofie, a little extra hard this year. Sofie had a mild form of the flu for the first two weeks back to school and Livi got it quite bad the next two weeks which ended with us taking her to the ER for dehydration. Then I got it.

I didn’t realize what was going on with Sofie at first. She is quite disconnected from her body, so she doesn’t always tell us what hurts. She wasn’t really running a fever but was having some MAJOR behavioural issues. She was throwing everything, clearing table tops, hitting, screaming, flailing and she even pulled our hair, which she hasn’t done in years! I was getting disheartening reports from school and she freaked out in her car seat and managed to get out while we were driving home one night in order to attack her sister. I ended up having to sit in the back with her. We’ve never had to do that before.

It’s been hard with Sofie this month. At least I think we have a reason for her behaviours but it didn’t make things any easier. I didn’t know how to help her through it. She regressed. We were at a loss. I’ve found that my patience with her has been shorter since then too.

I felt alone.
Parents of typical kids don’t get it.
I don’t expect them to ‘get it’, I just wish they did.

It is a lonely place sometimes. It’s hard to empathize and listen to friends complain about their kids not doing their chores or having to take all their kids to one child’s doctor appointment, while I’m waiting for the day Sofie helps get herself dressed even and I, at least once a week, cart all my kids to some kind of appointment which usually interferes with Evie’s nap time. I don’t want to compare our lives but we live in such different realities sometimes.  I do have a network of other parents with special needs kids, but we are all to busy and exhausted to actually put energy in to developing relationships! On respite weekends when Sofie is at my sister’s house I have a taste of what it would be like to just have two typical kids. It is a completely different world. I think I would be bored. I’m sure I’d be back to work full time!

I don’t mean this as any type of regret for adopting Sofie or judgement on others. We don’t have an easy life but it is nothing compared to some others. We love our chaotically boring life, most of the time… It is just my life and right now I’m entertaining bad, yucky, blah-day feelings. They come every once in a while but they seem to be staying a bit longer than usual right now. I thought maybe writing them down on the blog might help me get over them.

Sofie is truly amazing. She seems to be mostly through all the upset. She is speaking so much more. She can spell her name. She is developing her pre-writing skills. She can run, jump, and of course loves to dance! She likes school and is learning what is appropriate. We are learning how to help her better too. Livi is incredible. She only wants to spread love. She adores her sisters and helps out so much. She lives for making Evie laugh and hugs both littles every day. She is learning to read and loves school. Evie is joyous and such a climber. She is loud and starting to communicate more. Her smile lights us up and we love hearing her laugh at her big sister’s antics.

I do have friends and family who surround me with love, non-judgement, and support in whatever mood I’m entertaining at the moment. I got to visit with one of those friends on Saturday, which helped make last weekend much better. Although Sofie flushed her sons electric toothbrush down the toilet, there was no anger or expectation for me to replace it. I know that her response was genuine too, not just being polite. Friends like that are few and far between, at least in my world. I’ve never been one to have a huge circle of friends, just a small handful that I would trust all my deepest thoughts and fears with. I am so thankful for them.

Despite our household’s sleepless nights, slight depression and ailments, there was real joy this last month. Jon and I did get to go away for a night. The first time we’ve had a night with out kids in over a year! It was lovely. We had a friends wedding in Seattle and decided to stay over night. Sofie was assessed for her letters and she knows at least 10 of them and can spell her name. There has been much laughter and love between my girls who absolutely and completely love each other. Sister love is a beautiful thing. Evie’s hair is finally long enough to put in some adorable pig tails. I got a special, full shopping day with just Livi who continues to astound me with her courage, kindness and desire to help others. I am also just loving watching and listening to Livi learn to read!

This past weekend was Family Day long weekend. Although it is a new holiday and we didn’t have any big plans, we got to visit with some dear, real friends we haven’t seen in a while. Jon’s sister and brother in law where in town so we had a family dinner and a good, much needed family meeting. Livi got to have ‘respite’ at her Gramma’s house for a night. And, we got to take the big girls ice skating for the first time where they had SO MUCH FUN! Sofie was able to stand in the skates but hated them. Once we let her slide in just her shoes she loved it. Livi amazed me with her persistence and ability! She was zipping around using a bar and ventured out quite a bit without one!

I think writing this all down has helped. Not sure if I made any sense, but I’m not sure if I make sense on a day to day basis. I guess I’m okay with that. It’s my life, in all that is beautiful and broken.