When I was a little girl, I would always say… I want a husband, two kids (a boy then a girl), a dog, and a big, beautiful home.
We plan for our future with these dreams of what our lives will look like. Where did these preconceived notions of what happiness looks like come from? This idea of a “nuclear family” was taught in elementary school. I remember sitting in my third-grade classroom, reading a textbook about what constituted a nuclear family. Granted, that was decades ago (Oh my gosh, am I getting old?!).
But now, if I were to paint a picture of my life and what it looked like today, knowing what I know now, I would only wish for true love with happy and healthy children.
Our lives were going exactly as I had planned. Seriously. It was insane. We had an amazing wedding surrounded by loved ones, bought our beautiful home, had our charismatic son, and a baby girl was on the way. This is what I had always imagined. But as the saying goes, “you make plans and G-d laughs.”
But as you already know, if you have been following our crazy journey, we were not planning or aware that our baby girl would be born with a rare genetic syndrome.
And… to be honest, I was not fully prepared for what a beautiful life we have ahead of us.
In just a matter of almost 15 months, we have taken something that was rare, scary, and unknown, and have made it into something special, unique, and known to others. We have met people all over the globe who have shared their stories with us. Total strangers reaching out with advice, guidance, and simply, so much love.
For every cruel person who has said something hurtful (knowingly or subconsciously) about our child, there are ten others who have nothing but positive and kind words and actions that speak even louder.
I think the point is that we are all on this wild roller coaster and we truly don’t know what our lives will hold.
Sometimes we are dealt a royal flush. Sometimes we are dealt a hand that makes us a vulnerable player. Whatever game or whatever hand you are dealt, it is up to you to play your best and make the most of it. And as I play this game of cards, our life, I have been able to find the joy and beauty that may be hidden in the deck.
I have learned so many valuable lessons.
- Celebrate every milestone that you or your child meets, no matter how big or how small.
- Accept help when you need it, physically, emotionally, whatever. Don’t be too proud to admit when you need someone to lean on.
- Make sure that you focus on your significant other and their needs- make dinner plans for just the two of you so that you don’t lose sight of your foundation and how strong you are as a couple, not just as parents.
- Cry when you want to. If you are in the middle of a crowded supermarket, and you can’t find your favorite jar of peanut butter, and you want to cry because it sets you off…go ahead and cry!
- Lastly, embrace your journey. It is unique and it is yours.
