Summer love

I grew up going to the most magical place on earth. Every summer, when the heat in Texas became too unbearable to endure my family boarded a plane for Canada. We flew 3 hours, anxious, excited and ready for the real part of summer to begin. Once the plane landed we went through customs, waited for our bags and our dog, and drove north 3 hours to my favorite place on earth. The journey there felt like an eternity. Once the car was parked, the lake within view, I sprang from my seat, feeling the grass between my toes and ran for the water. And for the next few weeks I awoke each morning, put on my bathing suit and lived in what I felt was the most beautiful place in the world, a lake in Canada whose shores held the cottages of cousins I saw just once a year. I went on adventures in the forest, found flowers growing on dead trees, flowers whose blooms were bigger than my head. I gathered clay on the lake’s floor with my cousins and built people and villages, left to dry on the faces of rocks. These memories, though they only seemed to encompass a small part of each year, are things I deeply treasure from my childhood. Watching my mom prepare pies and meals for family. Seeing my dad play frisbee in the water with his brothers and win at cards by the fire in the evenings. 
Then there was a time when I went to college and life seemed to take over those summer traditions, and my time by the lake lessened. And with moving and marriage and babies, those summer days felt like pictures in a photo album, that I could remember but hardly feel. But it’s funny, how life becomes a circle instead of a line, when you return to the same place but in a different capacity. This past week I found myself sitting by the same lake I lived in as a little girl, laughing with my cousins and feeling the sun burning on my arms. But this time I was also watching my own children laughing, with clay from the lake’s floor dripping from their hands. Mya holding her cousins’ hands as she flew off the dock into icy waters. I saw them playing make believe in the forest, putting their bathing suits on as they woke in the morning and feeling sand stuck between their toes as they drifted off to sleep at night. And the realization of this circle, of living my life again through my children, filled my heart with warmth to it’s upmost brim. When you realize you are growing older, that time is moving faster than you could have ever imagined, there is solace in the regeneration of memories. There is something poetic and all encompassing when you hear your children’s laughter echoing across the water, you hear it merging with your five year old self whose happiness still sits within those waves. Although I could long to go back, to summers as a child on this lake, I feel content with where I am today, giving those moments to my children, as I recognize this time belongs to them. 

  
  
  
  
  

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Growth

It is so interesting to me how our brains work, how they grow and learn and adapt. You don’t fully understand what it’s like to be a child until you see a child who is learning and growing and absorbing everything within view. When Mya was a baby, she spent the first two years of her life in a cast or a brace or recovering from procedures. I spent a lot of that time worried about her physical abilities, thinking she would walk late and not be able to climb stairs and fall behind in her physical milestones, but what I failed to realize, is that growth will happen, and the mind will adapt. Mya was an early talker, her vocabulary was well above typical kids her age, spouting off sentences before she was two. As her physical abilities stayed in a holding pattern, waiting to heal, the rest had time to grow. Since she wasn’t working on walking and running and jumping, her mind took the lead and led her on a path of vocabulary, social skills that are still her strongest ability. And the walking came, all of those physical skills I was worried about arrived, just a little late. But her mind wasn’t taking a break, it used that time to focus on something else. 
Ellie has always been physical. When I was pregnant she constantly moved, kicking and rolling. I missed her movement after her birth. She had been in constant rhythm since early in the pregnancy. Once born, she continued on that path. As she learned to walk and run and dance, while exceptionally proud of her accomplishments, I felt the pull of parental worry, she isn’t talking. There are no words. I felt guilty for still wanting more. I should feel immensely pleased with her amazing physical strength, but as parents we want everything for our kids, and I was worried about speech. Our physical therapist told me, “she is working on running, when she conquers that her mind can focus on speech.” And just when I had forgotten, when I had resolved to let her abilities shine in their own time, she started talking. This past week Ellie had made amazing strides in her social development. She is saying “hi” on a regular basis. She is calling for mama, which she never use to do. She pointed to a glass of milk and said “mil.” She is copying my sounds and referring to Mya as “iya,” making Mya’s day every time she says it. And the other day I held Ellie in my arms and I squeezed her as tight as I could and I swear with a full heart that she said “happy.” 
A constant battle with timelines. As a kid I felt like my birthday was too far away, it would never come, but every year it did, and I’m finding that time is moving faster and faster. Our minds know where attention is needed. Ellie’s mind worked on physical strength and once that was under control it felt it could focus on her social abilities. As Mya sat in a cast, playing with puzzles on the floor, her mind focussed on her vocabulary. Giving each skill it’s necessary devotion. I’m working on expectations and worry, our bodies and minds are smarter than I give them credit for. Throw away the deadlines for growth, I am learning there is no limit on what our minds can do. 

  
  
  
  
  

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Mya turns 5

Mya turns five on Friday. Five, it seems so old. I haven’t referred to Mya as a baby for a long time, I held on to toddler for a while, but I’ve avoided kid as long as possible. Age 5 seems to suggest that she is a kid. Her age can be recognized by a whole hand, she is currently in school, she dresses herself, she uses sassy language at least 3 times a day, she properly wears accessories, and has enough actual friends to warrant a birthday party. Mya is certainly almost five, whether I accept it or not. Due to a civic holiday this weekend we threw her a birthday party last Sunday. After many years of getting to know myself, I have learned a few things. For one, I could nicely be referred to as a neat freak but more appropriately be described as an organizational fanatic, verging on OCD tendencies. Although I love my friends and family, I prefer not to be surrounded by people I don’t really know in a social setting, at my own house, more accurately described as a party. I delved on these realizations the night before Mya’s 5th birthday party as Travis and I were completely reconstructing our house to make room for Mya’s friends and their parents. I realized at that moment it would have been a better idea to take Mya and a few of her friends to an amusement park and not invite them all over for a science themed birthday party in our tiny home. At that moment, however, there was no turning back. The girls arrived on time Sunday wearing pink dresses and holding brightly colored bags filled with Monster High Dolls and Lego sets. Mya raced to the door with each arrival, hugging her friends, and welcoming them into our home, she is a much better host than I am. I was surprised, that at age 5, parents do not actually stay for the festivities, infact the majority of parents barely stayed long enough for me to introduce myself, racing from our door as fast as they could. For the next 3 hours our house was filled with screaming and laughing and running, cotton candy and cookies, tissue paper and bows. I recognized Mya’s laugh throughout the day, I heard it most among the chaos, her confidence with her friends, her acceptance as her role of host as she showed her friends around and helped them when they needed something. We sang happy birthday and unprompted Mya asked if her friends would help her blow out the candles on her cake. Ellie amazingly slept through the entire party. And without even realizing that the time had gone by we were handing out gift bags and saying goodbye to Mya’s friends as they raced from our front door, mouths sticky from sugar, hair tangled from running, and I’m hoping, with cheeks sore from laughing. We all survived Mya’s first real birthday party. I think maybe we could handle another in 365 days, but check with me in May. Her actual birthday, however, I may not handle so seamlessly. I may fight back tears when she wakes up and I sing happy birthday in my loudest possible voice. At 12:10pm as I remember that first moment, when I became a mom, I may get goose bumps on my arms. When we let her stay up a little later, because now she is officially a 5 year old kid, I am confident I will hug her and hold her and tell her how proud I am of her, because without a doubt she will be the sweetest, kindest, bravest, funniest, and smartest 5 year old that I have ever spent time with. Then when I go to sleep on Friday I may peek back in on my Mya, sleeping in her bed and I will think, “she was only just a baby, just yesterday I feel like she was a baby,” and I will cry a little, a tear that is sadness mixed with pride, because that’s what birthdays do to a parent, they allow us to celebrate our child’s growth while at the same time helping us remember that time moves faster than we ever thought possible, each year moving quicker than the last.
  
  
  
  
  

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Limits

Ellie and I went to music classes in the spring, she loved it. We met some great families and had a wonderful time. One parent at the class was a former teacher with a sweet little boy who was two years old. I talked with her about heart surgery and Down Syndrome. Her sweet little boy, his name was Jack, loved Ellie. He always said, “sweet baby Ellie, she is the sweetest baby,” and one time his mother looked at him and said, “no Jack, Ellie is not a baby, she is a little girl, a big kid just like you.” I realized then, even I, often see Ellie as a baby. Maybe I’m treating her like a baby because she’s my youngest or because I want to protect her or because subconsciously I am limiting her. 

Yesterday my grandmother got a present for the girls, she wanted me to take them to Build a Bear. Mya adored the whole experience, but it surprised me how much Ellie loved it. She picked her own stuffed animal, a brown and white beagle. She cautiously watched as the dog was filled and stitched. Then when I gave her the dog, her eyes lit up. She held him and squeezed him, and then sat down on the ground and knew this dog was made for her. I had underestimated her. I had thought she wouldn’t really understand everything, but she did. She is not a baby, she is a little girl who sees and feels and understands. 

I pray that even though I have the strongest faith in Ellie that I always believe in her. That I treat her like the child she is and the woman she will be one day. I will fight my underlying need to shelter her and see her never as something fragile but as a person who is strong and vigilant. My baby girl will grow up just like everyone else, I will be strong to never hold her back if there is a fear that our world won’t accept her, because how could it not. 

Ellie is growing up quickly, just like Mya. I am seeing her personality grow, her likes and dislikes. I spent a lot of time thinking about Ellie’s differences, and now I am focusing on all of her similarities. She is truly more alike than different. 

  
  
  
   
 

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Club foot follow up

We had Mya’s annual club foot appointment on Wednesday. Mya is almost 5, and now she understands Club foot. She knows not everyone has it, she knows it was a struggle, but I also feel she knows she’s a fighter. Right before we left, as I was packing the car Mya asked, “do you think the doctor will say I don’t need my brace anymore?” She asked with such excitement, like a birthday present waiting. I felt my heart ache, for her this appointment can be signified with rewards, whether her foot is good or bad. “Your foot is fixed no matter what,” I told her, “the brace just helps.” The waiting room was crowded. Filled with broken legs and casts and splints. We found a quiet waiting room to wait for our appointment. I didn’t realize the waiting room we had found was for newborns with Club foot. We were early for our appointment so I saw several families with tiny babies. Some with casts, some awaiting their first cast. And memories flooded back to me. Those uncertain days holding a newborn with a full leg cast. A family sat next to us with twin boys, they looked to be about two weeks old, both with full leg casts. The mother asked Mya how old she was and Mya responded with her standard four and a half but my birthday is July 31st. I said I remember the casts but that Mya doesn’t. And Mya said she’s the fastest runner in her class and showed the mother the scar on her ankle. I wanted to tell the mother how easy it was, how the days leading up to a fixed foot are filled with simple procedures that don’t bog a memory down, but I couldn’t. I couldn’t promise something easy because it wasn’t, so I simply said that Mya doesn’t remember a thing and that now she is almost 5 years old and her foot is fixed and she runs and jumps and swims and soon club foot will feel like a memory. I wanted to say that the hardship of weeks of castings lessens as the years pass by, but she looked so tired I didn’t want to suggest any hardship existed. Every journey is different. Our appointment came and Mya showed the doctor her brace and he stretched her foot and said he was very pleased. Prognosis, once Mya outgrows her current brace we can say goodbye to AFOs. She can live without a brace. We have an appointment scheduled for a year from now and if her foot is good that will be our last club foot appointment. That will be her graduation. If there is ever concern we can always come back for follow up, but there will be no need for routine checkups. When we first received this diagnosis, before Mya was born, I don’t remember how I pictured the prospect of a final appointment. Admittedly, I didn’t think her club foot journey would be this hard. But knowing what has happened, and seeing how far she’s come, the idea of graduation in a year feels pretty wonderful. I saw those newborn babies in the waiting room, so tiny, with casts of feet pointed downward and still angled inward, the beginnings of transition and the memories came back so strong. But with Mya racing down the hospital halls, I felt hopeful for those babies. They will be fine. And Mya is fine. She is so much better than fine. So we celebrated with ice cream and the park and I let those memories live inside me. They don’t feel as hurtful as they used to. They feel like part of a process that got us here. A little girl who acknowledges her diagnosis and is proud of it, who can find solidarity among newborns in a hospital waiting room, and who really is the fastest runner in her class, and maybe the fastest in our whole city. 
   
   

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Long time no talk 

Hello friends. I suppose I have taken an unintended break from my blog. The business of life got in the way of writing about it. 
Mya finished school for the year. The whole family caught a bug that lasted forever, different cycles of the same sickness. Ellie’s amazing physical therapist retired and I felt myself crying as I said goodbye to her. Ellie transitioned from walking to running. Mya has an amazing tendency to act like a 4 year old and a 20 year old within the same afternoon. And it is warm outside, and I am watering flowers, and wavering between aggressively teaching Ellie sign language and learning how to accept that language, her own language, will come at it’s own pace. 
This past weekend we ventured into an old enjoyment that now feels new. We went camping, our first time camping with children. Travis and both went camping growing up. And as we dated and then were newlyweds we continued to share this joy. But with kids, it seemed terrifying. Where will they sleep in the tent! What do we do with diapers! What will they eat! What if the milk doesn’t stay cold! My favorite part of camping is sometimes doing nothing but the kids never let us do nothing! Ahh! So we did it! We spent 3 days packing for a weekend trip. We filled the car and the Thule and I still felt like we needed more stuff. We planned escape excuses just incase we needed to leave the moment we arrived. And we drove North to Algonquin Park. And once we arrived I realized we forgot a first aid kit. But you know what within minutes both kids had aching cheeks from laughing, and we only used half of what we brought. Ellie started crying the moment we arrived and I feared it was too much, that no one was ready. But I held her and walked out near the water and I sang her favorite song and she stopped crying, and she didn’t cry again, for the rest of the trip. Mya held a baby frog in her hands and fell in the dirt and had a hot dog that was cooked over a campfire. Shortly after we arrived, as we were unpacking the car, Ellie tried to walk on the uneven ground, and she was so scared she held my leg so tight it almost hurt. But the next day she took a few steps, that afternoon she walked across our site, and by the next morning she forgot she was scared and walked just like she does at home. So I slowly also realized maybe I wasn’t afraid either. As we drove home, Mya was covered in bug bites, Ellie had the remnants of several handfuls of dirt hidden in her tummy, our clothes smelt like campfire, and there was something sticky on my hands that would not go away. But Mya had stayed up late enough to see the stars and heard songs sung by a campfire. And Ellie woke up early and we walked through a forest completely drenched in fog before anyone else was awake. And Travis and I sat by a campfire while our girls were sleeping in the tent and told stories of younger years, times had by a similar campfire. Something I’ve been learning, that difference is never ever a bad thing. 

I’ll work on writing more friends! Xo
   
    
    
   

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People are starting to notice 

When Ellie was a newborn I read a lot of books that could all be described as an introduction to Down Syndrome. Suggested reading on most Down Syndrome websites and forums. Many of them talked about there being two stages of acceptance with this diagnosis. Personally I believe acceptance isn’t so rigid but the books needed more concrete definitions. The first, they said, was when you receive the diagnosis. Since this generally occurs either during pregnancy or within the first few weeks of your baby’s life it is a fairly private acceptance. You are allowed to go through your own process privately. Then, the books describe, there is another acceptance, when the world starts to see your child as different. The physical characteristics of Down Syndrome aren’t quite as noticeable early on but as children grow their features become more prominent. 

People have always told me that Ellie is beautiful, because she is. Sometimes people linger a little too long with words waiting on the edge of their lips. Sometimes they look at me and I notice a slight tilt of their head or eye contact that lasts too long and suggests something more. It doesn’t bother me, I just notice something extra. Recently, however, people have been making comments. Nothing cruel, all positive, but the outside world is beginning to acknowledge our diagnosis. A woman in the checkout telling me she loves people with Down Syndrome because they are so loving, a stranger at an art school saying her daughter attends daycare with a boy who has Down syndrome, or the lady behind me at the pharmacy telling me her aunt has a very rare chromosome disorder somewhat similar to Down Syndrome. I nod and smile at saying things like, sometimes I think Ellie knows the secret to life, or isn’t that nice, or we are so lucky with how much research has been done with regards to Down Syndrome. It doesn’t bother me at all, I find it interesting what people will share with a stranger and what makes them start a conversation. I actually find myself frozen when I see another person with Down Syndrome. I follow them around the store secretely wishing I had the courage to tell them my love for an extra chromosome. The only negative that sits being deceitful in the back of my mind is the thought that if kind people know then so do hurtful people. It makes me wonder if someone will be inclined to say something rude. It makes me want to hide from those people so we never have proof that they exist. But I can’t. And I can’t hide Ellie because I do think she’s beautiful, and I think her eyes are enchanting, and there is a hopeful part of me that sits on my heart that thinks maybe Ellie has the power to change these people’s minds. 

 

 
  

  

   

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