Walk This Way

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We took full advantage of the long weekend and did a little exploring around the city with Evie in her gait trainer. This was our first time using the gait trainer on a family adventure since the Cerebral Palsy walk last September. We went to the aquarium and the children’s science museum and she loved it. It was a great experience for me too. I needed to see Evie be able to explore with some independence. My husband and I couldn’t stop talking about how much fun we had all weekend.

Today we had another follow-up visit with our Neurodevelopment clinic. It was a bit tough, but it was actually perfect timing that we had the clinic visit this week following a fantastic weekend. I have been amazed at the improvements she has made since her last visit. This girl constantly seems to defy expectations. However, we had a tough talk with the doctor.

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Evie is now two years old. She still is unable to sit independently. Remember that little instruction we were given that if she could sit independently by the age of two she would walk. Well today we were told she probably wouldn’t, at least not independently.

This was really hard to hear. I cried. Repeatedly. Not because of what her neurologist said, but because it just doesn’t fit with what I still believe will happen for Evie. What I still hope will be. And again, I was reminded that reality doesn’t always fit within the box that I had planned. But, reality is always better lived than dreamed.

I just kept looking at Evie after we had that discussion with the Neurologist. I kept looking at her smiling and playing. She was happy. I was crying. She wasn’t discouraged and I was trying not to be. I just keep thinking about how unfair it seems to count her out of the running yet. She is only two years old. Most children aren’t even potty-trained by the time they are two, but most are able to achieve that…at least by adulthood. Why shouldn’t I believe that she will still walk independently?

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I whole-heartedly believe Evie will be able to walk independently and live a full and independent life. I hold on to that belief while living in a realm and accepting the reality that that belief most likely won’t be true, but while also holding onto a hope that the reality is wrong. Basically my mental status update should read…It’s complicated. Sometimes as a parent of a child with additional needs, I feel like I am carrying a mixed bag of emotions with me. It’s almost like I have severe polarized moods swings, beliefs or hopes. I have feelings of happiness, discouragement, determination, resilience, and pride all at the same time. Please tell me I’m not the only one!

I am learning a lot about myself in this process. Life has its challenges, but that isn’t what you have to overcome. You have to overcome the emotions; the fears that are tied to those experiences. During these days where I find myself on an emotional rollercoaster, I just need to keep looking at Evie. I need to keep looking at that bright, smiling, happy face and I am reminded that our life is perfectly imperfect, and I really like it that way.

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Taco Two’s-day

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We had the best weekend celebrating Evie and the perfect addition she is to our lives. I wanted to have a playful theme for the party but something that would be easy to put together and fairly low stress. “Two is for tacos” was perfect. We put together a little fiesta complete with a taco bar, papel picado, cactus sugar cookies, maracas, and a taco piñata. We were so lucky to have so many wonderful friends and family, even a couple of her teachers and therapists there to celebrate. This girl is well loved!

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I still can’t believe my little girl is now two. Where has the time gone? With how quickly time is going I am reminded of how important it is to be more present. Of course I am mindful and excited about what the future holds, but I don’t want that to come at the expense of what is happening in the moment. I hope that I can teach and encourage Evie to live in the present and to make it beautiful.

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The Big T-W-O

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Today Evie hit the big one. I am now the proud owner of a toddler. I am now counting her age in years instead of months. She is now of appropriate age for her two year molars, although hopefully they will decide to be fashionably late since I am perfectly happy waiting for those to arrive as late in this year as they would like. I absolutely adore this little person I have growing up right in front of me; or rather with me, since I feel like I am doing a lot of growing up too. She loves blueberries, the color blue, books, and bubbles. Looking at this list, B just might be her favorite letter. She loves to dance, play music, and paint. Her laugh and smile are infectious. I am powerless against her pouty lip. She gives the sweetest Eskimo and butterfly kisses. She is quite the charmer, especially with the men-folk. She is happy and sweet. She is just that person that everyone loves. She constantly reminds me that the secret to having it all is knowing that I already do.

This week I have been feeling all the emotions. I mean, how does a newborn jammy send a grown woman into a frenzy of tears? I can’t believe she is already two! She really is everything. We had the best time celebrating her, I can’t wait to share more from her parties later. In light of her birthday, I thought this would be the perfect time to write Evie another letter. If you would like to read any of the previous notes to Evie, you can find them here.

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Dear Evie,

Today is your birthday and you are now two years old! Happy Birthday my darling girl. I can’t wait to tell you about all the hopes and dreams I have for you, but more importantly I can’t wait to hear what hopes and dreams you have for yourself. I know and expect this upcoming year to be full of moments where you will be testing limits and boundaries. I hope that most of those times will be you testing your own limits and pushing your own boundaries. You have already overcome so many obstacles. I have been here to support you. Your dad has been here. Your grandparents, aunts, and uncles have been here. Your friends, teachers, and therapists have been here. But you are the one that has done all the work. You are the one that learned how to work with your body and how to strengthen your body to do the things you want to do. You are learning that you are so capable. You are capable of doing anything you set your mind and heart into doing. You are determined and hard-working. I hope this year you continue to build those qualities. I hope this year you learn to measure your success not only by what you have achieved but also by what you have overcome. It doesn’t matter how slowly you go or how long it takes you, as long as you never stop. Don’t waste your time or energy on excuses. Be fearless. Success isn’t a straight line, the path to achievement involves a lot of twists, ups, downs, and even a summersault or two. No matter where you find that path taking you, I guarantee I will always be here. Remember, I will never leave you. I promise.

Evelyn, I love you. I love you with my whole heart; well, and then I love you some more.

Always,

Mama

 

Goodbyes and Hellos

2015 has been quite the year. It has been the year Evie became obsessed with hats and discovered her tongue. It was a year full of therapy appointments and equipment purchases. During the year Evie started finding independence, she started crawling, walking in her gait trainer, and doing “sit-ups.” Her vocabulary has exploded. It has been the year for international flights and lot of domestic travel. It has involved lots of splashing in the ocean and the pool. It has been a year of sled rides and swings. It has included a few mother-daughter matching moments. This last year has been full of laughter, smiles, memories, and only a few tears. Most importantly, it has been a year of family adventures.

And now we are here, at the start of another year. 2016 is our year.

Around this time, most people have thought about and started resolutions for the upcoming year. They have plans of traveling more or improving their fitness or taking up painting. I have my list too; but I also have a list for Evie. The list isn’t new and most of these things we have been working on for some time. Probably at the top of that list is helping her learn to sit independently. There is a sort of guideline given to parents of children with cerebral palsy that if the child can learn to sit by the age of 2, they generally are able to walk. Let the gravity of that sit in for a minute. Sit at two = walking. I was basically just given an equation for my child’s life achievements, or so I thought. Similarly I have heard that if you can get your child to read 10 words in Latin by the age of 2 they will most likely graduate from Harvard. Okay, that last statement is ridiculous and completely false, but it sort of depicts how it feels sometimes that one small task might dictate the remainder of your child’s progress. At first I was overzealous, I figured I could get her to sit by the age of 1. I kept telling myself that she would sit by the age of 1 so at 2 she would run. It was catchy, but the jingle wasn’t quite as motivating for Evie. And so we are here, nearing Evie’s second birthday and still working on sitting. In some ways I am a bit upset we were given that glittery goal because it could have distracted me from the progress she has made along the way. I could feel a bit defeated walking toward her second birthday, but I don’t. I am so proud of the progress she has made and will continue to make. She amazes me everyday and she makes the best little work-out partner.

Maybe Evie has been helping me learn to be flexible about deadlines for a long time; case in point, she was 10 days past her due date. I was more than ready, but she just needed a little more time. We are learning to pace ourselves. We are learning to be patient with her progress. We are learning to adjust our expectations, while not letting go of our goals, and at the same time being okay with whatever happens. It’s complicated, but it’s reality, and most importantly it’s the truth. 2016 will be the year of come what may and love it.

2015, you were good to us; but 2016, I think you will be even better.

Inclusion

I’ve been thinking a lot about the concept of inclusion lately. I know inclusion is not only of concern for parents of children with additional needs. Sadly, today kids get bullied. They get made fun of. They are excluded. They are told they can’t participate or play with the group. None of this is okay. Fortunately we have not had any experiences yet where children (or parents) purposely or inadvertently exclude Evie from activities. We have actually had wonderful experiences with inclusion, most notably at her daycare.

A couple months ago I was picking Evie up from school (aka Nike daycare) and noticed a huge display in the lobby titled, “It’s okay to be different”. The entire focus of the board was to promote inclusion of children with disabilities within the center. As I walked away all I kept thinking about was this message is not only true for Evie, but for every other child, those with disabilities and those without. Everyone should always feel included, no matter the differences.

Inclusion has had a tremendous impact on my daughter and the improvements she is making everyday. I am certain she has the mobility she does because she is motivated to be as active and mobile as her classmates. She has also benefited greatly from the dedication and patience of the staff that work with her each day. Her classroom teachers and all the support staff have been wonderful, and have been willing to collaborate with us to ensure Evie is set up for success. One of the best decisions I made was to do the majority of Evie’s Early Intervention therapy visits at her daycare center. This process allows her teachers to be involved in the therapy process, bring up concerns so that we can problem solve solutions, and provides opportunities for them to learn specific therapy techniques that can be encouraged in the classroom. It also allows her therapist to evaluate the classroom and provide input and equipment that will assist in our goal of having Evie included.

In addition to the teachers, the support staff and center management all have the goal of supporting each child’s learning. I have had multiple meetings with her lead teacher, Early Intervention specialist, and the daycare’s Health and Special Needs Coordinator to discuss the best ways to meet Evie’s unique needs, everything from toys, specialized equipment, to modifying classroom furniture. We have all worked together as a team to ensure that the adaptations allow Evie to fully participate in all the daily routines and activities. Meals, playtime, walks, outings to the farmer’s market, story-time, art, naptime…Evie is always included. Evie is able to sit at the table with the other kids for meals, snacks, and craft activities. She is able to explore the playground in her gait trainer. In every activity she is able to interact and actively participate with the other children and teachers.

Really we are fortunate. I know we have a long journey ahead and will most likely face concerns with inclusion in the future. The reality is our inclusion story may not always be positive, although I hope that it will be. I hope that tomorrow is the day that exclusion and bullying stops. But this concept has me thinking what I am doing to make it change? I realized inclusion starts with me. I need to be an advocate for inclusion and help change the perception of those with disabilities. It starts with me teaching Evie to look past the differences and find the things that connect her to others. I need to help her embrace her differences and celebrate them. I’m not trying to convince her, or myself, or anyone else for that matter, that she is the same as everyone else. She is part of the natural diversity that exists in the world. So are you. So is your child. Actually, my intention and hope is to teach her that everyone is different. That’s the beauty of it. My point is help this girl see herself as capable. She is ABLE. She might do things a little differently, but I like that. She is learning her own way. She is beginning to navigate this big world she is in, and that is something I am really proud of.

Thanksgiving

IMG_3272I just love this time of year. It’s not just because of all the pumpkin, sweater weather, hot chocolate, and the changing leaves. It’s not because it gives me an excuse to buy another scarf-although I did take full advantage of that opportunity. I just love that during this time of year when it gets cooler and the nights get longer, I just want to cuddle up with my little family by the fire. I love that this season reminds me to think beyond myself, and hopefully with the practice, I get a little better at doing it all year long.

With this Thanksgiving season, I have seen all sorts of gratitude lists on social media. One in particular kept me thinking; I am grateful for laundry = clothes to wear. While I appreciate the metaphor, I just haven’t quite reached the sainthood level in mentality. I am so grateful for a warm home, soft bed, food, dry clothes, especially when there are so many people that don’t have those things, I just don’t believe I have to love all the chores that are associated with a household to recognize what blessings I have.

I love this season of gratitude and thanksgiving. Gratitude is everything. It helps me take what I need and prioritize it above what I want. It converts what I have into more than enough. It helps me take what extra I might have and share it. Gratitude is a skill, but it helps to start each day with a grateful heart. I’m working on that one, life certainly can make that hard.

I am grateful for my struggles because through it I have found my strength and I am beginning to realize what I am capable of. I am grateful for my loving husband who makes my day better by just being a part of it. I am grateful for my perfect daughter, who has already brought me more joy, smiles, and laughter than is physically possible for one lifetime- somehow she defies the laws of physics. There is no equation that can solve or quantify how much I love her. I am grateful for my sweet puppy-yes the dog makes the list! She converted Chris and I from a couple to a family. She is the perfect example of how excited I should be to see my family when I get home, or when they have been gone for 5 minutes. I am grateful for family who I love so much that I also consider them friends. This amazing bunch support and love us every step of the way. I am grateful for dear friends who have become family.

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IMG_3311I have a lot to be thankful for. I try to not let the things I want make me forget the things I already have.

There is always, always something to be thankful for.

Oh The Places You’ll Go

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Soon after Evie was diagnosed with cerebral palsy, a story was shared with us titled Welcome to Holland. I’m sure this story is familiar to most, but for those of you that haven’t read it, the point of the story is to try to explain what it is like raising a child with a disability. The story uses an analogy comparing parenting a child with a disability to preparing for a trip to Italy but actually finding yourself landing in Holland. It’s not that Holland is less enjoyable than Italy, it just may not be exactly what you had planned on and the scenery, people, and food are a little different. This new journey is unexpected, but can be so enjoyable if you take it for what it is. “But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say- Yes, that’s where I was supposed to go. That’s what I had planned. And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very very significant loss.”

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I’m sure there are mixed feelings and responses to this message. I certainly have them. I am also sure that this was written and shared with the intent of love. When I first read this story I felt a little comfort, almost as if it gave me permission to be okay with taking a different journey. Then I read it again, and now I have a more difficult time with these sentiments, especially the portion I quoted above. Call me a novice to parenting or whatever, but I feel pretty passionate about the fact that having a child with a disability doesn’t put me on a plane to another country. I am not at a loss when friends celebrate the achievements and development of their child, just as I would hope that they in turn would happily celebrate Evie’s. Yes, parenting a child with a disability is a slightly different scene, but I’m not on a totally different journey. I can guarantee that I will not mourn what never was. I will not be saying to myself for the rest of my life, that I was supposed to be parenting a different child with different abilities or that I am experiencing a pain that will never go away because of a loss of that dream. Why would you anchor yourself to such a ship of depressing thoughts and emotions? Let’s not be dramatic. There are plenty of sinking ships, but raising a child with a disability is not one of them. I feel that parenting any child takes us on a journey where, for a period of time, we might be visiting Holland, and then Italy, and then India, Morocco, Australia and so on until we all hopefully end up in Bali or Tahiti or some other beach paradise.

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What I really wanted to do in sharing this post was not talk in metaphors. I wanted to talk about actual travel. Traveling is one of my favorite hobbies. I love to see new places, meet new people, and eat new food. Getting a new stamp in my passport is a sort of badge of honor. Traveling has always been an important part of my relationship with my husband. I know many express their fear or hesitation that having children will prevent them from traveling. Does having a child with a disability transform that hesitation into a roadblock? I guess it can if you let it. In my opinion, raising a child has me on a daily wild adventure. Everyday I get to see, hear, taste, and experience something new. Despite these grand adventures with a pretty great travel guide, traveling is still an important part of my life, and I want Evie to be included. Not only do I want her to experience different cultures, but I want her to be a part of the memories I make on my adventures.

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Thankfully we have been able to travel a little bit together as a little family. We save, we shop for deals, often we get lucky, but we have had some amazing trips together. At first the trips were small; to visit friends in San Francisco or family in Utah. Then we took a roadtrip to Vancouver, B.C. Our first big flight was to heaven, I mean Hawaii; basically the same thing. Our next big trip was to Italy. Yes, it is possible to go to Italy with a child with disabilities. Most recently we did an east coast road trip from Boston to Virginia Beach. I think in total we have done 10 trips in Evie’s 22 months of life, I guess 12 if you count when she was bumming a ride in my uterus.

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There is so much we all gain from taking trips together. Hopefully we are exposing her to culture, language, and food. Hopefully we are helping her learn new things. More importantly I hope she is gaining the life lessons I am along the way.

So Evie,

This is the part where you find out who you are. Explore. Replace your fear with curiosity. Go see the world. Do we have to take detours? Yes- but embrace them!. Say yes to new adventures. Collect moments and memories, not things. Live a full life, a story that you are proud of. Realize that you can have dreams; nothing is beyond your reach or too far for you to be capable of seeing or doing. Go where your dreams take you. The world is yours for the taking. As you travel, it is inevitable that you will discover just how capable you are. So Evie, where to next?

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I Am a Working Mom

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This last week I had the privilege to write a guest post for my dear friend’s blog iamaworkingmomblog.com. My friend Martha is beautiful, kind, funny, and smart. She is truly inspirational. She is the friend that sends your daughter flowers following her diagnosis with cerebral palsy with the lyrics to Lean On Me on the card. I love her with all my soul. They don’t come better, and everyone deserves a Martha. I am so grateful she is a part of my motherhood journey.

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I was honored to be among the many other amazing women who are striving to balance their personal and professional life, especially as mothers. I truly believe there isn’t anyone more prepared to accomplish life than a mother, our multi-tasking skills alone put us ahead of the game. I had a lot of fun writing about my motherhood experience as a working mom and hope you enjoy reading about it more too. You can read the full story over on her blog, or follow the link here.

Have Courage and Be Kind

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As a mama I am constantly on the job of teaching this little one of mine, frankly she make the job easy. Mostly I write about my experiences with Evie and hopefully give a glimpse into our life with a daughter with cerebral palsy. I think it is equally important that I share a few messages directly to her. You can read my last letter to Evie here.

Dearest Evie,

My heart is a little fragile today. I needed to hold you a little closer, cuddle you a little longer, and love you a little deeper.

Today I attended a celebration of life for one of my dear sweet patients who passed away recently. It was surreal to see pictures of her outside of the hospital doing the things she loved with the people she loved the most. I was reminded of how happy she was and how positively she impacted the people around her. Everyone was able to share some of their favorite experiences and things they appreciated most about her in hopes that the family would be able to have a few new memories of their daughter, as they will no longer be able to make any new ones together. My heart just hurts.
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I came home and held you, studied your face and tried to memorize every detail, every smile, and sound you make. I want time to slow down and give me just a few extra moments with you. Today I love you more. I can. I am able to watch you grow, hear you laugh, enjoy your smile, and hold you close. It is amazing to see your life unfold in front of me, to see the person you are becoming. I think I am just a little extra emotional as I think about how grateful I am that you are here, because you almost weren’t. Life can change in an instant. IMG_3186

This wasn’t the letter I an originally planned to write to you, but these are the feelings I just can’t shake from today. I don’t really want to shake them. It is okay to miss the people we have lost.

This dear girl was strong, kind, loving, and courageous. I am a better person for knowing and caring for her. She has inspired me to teach you to be brave. Life can have some scary challenges, take courage, you can overcome any fear. She has motivated me to love you stronger and to teach you the importance of loving everyone around you. She exemplified that kindness is one of the greatest attributes. Evie, be kind. Be kind when it is easy, but especially when it is hard. Just be kind. She demonstrated that strength comes from within. Evie, you are strong. You are determined. You are ready to face any challenge, and if you ever forget, I am here to remind you.
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I love you my sweet girl. I always have and I always will.

Always,

Mama

Clear Eyes. Full Hearts. Can’t Lose

A couple months ago I had a unique experience while we were back visiting friends in San Francisco. It was a beautiful, sunny day in the city. Evie and I were on a walk with my dearest friend and her outrageously cute and spunky daughter. As we were coming down the home stretch she waddled up and wanted to hold my hand. I mean, seriously how cute is that? I didn’t think this would become a moment for me. The emotions I felt were raw and unexpected. From the moment that perfect little hand wrapped around my finger a spark flew and hit my heart in a spot that at times feels a bit empty. A space that holds the unrealized goals and the unfulfilled moments I’ve dreamed of having with Evie. With all the love I have for my own perfect little one, how is there even room for emptiness in there? I didn’t even know this spot existed. I am almost ashamed to admit these emotions, but I’m being real open and honest here. At times, sadness is a part of this journey.

In that moment I was so happy. I loved the connection I was developing with my friend’s sweet daughter. I also felt the pang of sadness, it was small, but an emotion I felt just the same. This was a moment I am yet to have with my own daughter and in many ways I was oblivious to how special it feels to have a little hand grasp tightly to yours as they walk by your side. I was grateful to have sunglasses on to hide the tear that began to well up, not because I am ashamed of it or that it would even be hard to describe or talk about; but because this was a moment that I needed to have by myself. Sometimes that happens, I have personal moments in public places. I know that won’t be the last time I experience that feeling, but hopefully next time I will be a little better prepared. This journey brings along a bag of mixed emotions. I have confidence that one of the next times I walk hand in hand with a little one will be with my own daughter. Some things are worth waiting for.