Emma said: “Mom, you love me?”
Me: “Oh yes Emma, so, so much!”
Emma: “Lots and lots?”
Me: “That’s right, lots and lots”
Emma: “Good. I love you too. Let’s pray now.”
In that moment, time stood still for me. As tears swallowed my eyes, I couldn’t help but fall to my knees with a cocktail of emotions as I hugged her and lay close to her, with my hand on her back feeling her every breath as she closed her eyes and fell asleep. I was so thankful that this child, one whose future was completely unknown to me the minute she was born, was asking me about my love for her and reaffirming her love for me as well.
I know I often write about Emma, but hopefully my readers understand it is simply because the journey I endure with her is worlds apart from any other. I love my son equally as much, but he flies through achieving his milestones, is constantly growing in leaps and bounds physically, emotionally and spiritually and needs very little help from me, so there just often isn’t as much to tell. It certainly doesn’t mean my love for him is any less and he knows that. He is everything I want him to be and them some.
So is she, but in so many different ways.
For some reason, this week has been unusually tough for me emotionally in regards to having a daughter with Down syndrome. Even now, the swelling knot in my throat as I type is a constant, reminder of the reality I live in. It is a beautiful reality mind you, but a different one. One that was chosen for me. One that never ceases, even eight years later.
As I take a step back and look over just this past week, I am reminded of the different circumstances our life entails. Circumstances that you wouldn’t get, until you lived them yourself. From taking an hour at the store to buy 10 items, to still needing full assistance at bath time, to the repeated questions I am asked over and over and over throughout each and every day by her sweet little voice, to lining up a hundred different sitters to help over a 5 day stretch and then feeling terribly guilty about it, to watching her get easily frustrated trying to read such a simple book, to giving up on a simple worksheet, to getting her hand stuck under something and crying until I heard her instead of simply yelling my name for help, to speech therapy, occupation therapy and tutoring, to the constant following I receive around my house every minute I am there, to making sure I don’t run out of the only 5 foods she will eat, to the watching over her that is needed every minute of every day.
Yes, I could give you a list of the positives that is probably twice as long as these, but that is just not where my head is today and that is okay. It is okay to let your mind and heart sift through these emotions when they come-a- visiting. For me, it only happens about once a year.
So Emma, if I could finish our bedtime conversation last night and tell you everything I would want to say about my love for you, it would go something like this:
Sweet, amazing, beautiful Emma, do you know just how much I love you? I love you more than I ever thought possible. I was so unsure of what to do with you when you came home from the hospital eight years ago, but one thing was certain…my love for you. So I took that love and I used it to jump right into research, finding you all the best resources, programs and therapies you needed. I began building my case on why the world needed to know you and love you just as much as I did. I engulfed my world into yours, learning all the best things for you to help you grow as much as possible. At one point, I took you to seven therapies a week, just because I knew they would help you. I cried at your first smile, your first tooth, and the first time you rolled over, sat up, crawled and walked. I screamed with excitement when you said your first word (even though it was da-da!). I created and taught a summer program for children with special needs, so I could help others and be with you at the same time. I cried and worried to death (for no reason) the first day I dropped you off at preschool. I stood in amazement as you potty trained overnight, literally and never looked back. My heart broke for you every time you had to endure a doctors visit, needle stick or surgery, though you remained unphased and proved to be the strongest little girl I ever knew. I lost my breath the first time I saw you write your name. I cried (again) and grabbed every available camera in my reach every time you took the stage to sing a song. My heart burst with happiness and thankfulness when you achieved each of these milestones. I took my love for you and grew a backbone when clueless adults gave their negative opinions on things you would never be able to do or couldn’t do. I learned to fight for you for what I believed was best for you time and time again. When I saw you weren’t being invited to social happenings, I was hurt by the world for you but I got up, brushed it off and created a playgroup for you with peers the same as you, so that you would feel love too and so that you could feel the happiness of being included and accepted. I became a strong advocate to have a voice for you and your peers, all because of my love for you. I answered all of your questions because I know that is what you wanted. I have enormous patience when I take you out with me because it is okay that it takes you a little longer to do things. I make sure you are surrounded by those who love you and truly understand you. I make it known just how amazing you are to those who do not know you that well. I make sure your every need is met on a daily basis. I have carried a multitude of painful burdens, disappointments and let downs for you over the past eight years but I have been happy to do it, to protect you so that you never had to bear the feeling of sadness. I take hours and sometimes days to make decisions regarding you because I love you. I have spent many, many nights praying for your innocent, fragile life. I have come to know that you will always need my help in one way or another and I am honored to be there for you, whatever you may need. I appreciate nothing more than when I see you smile, laugh and have fun. I never want you to experience anything but pure joy. I consider it a privilege to be your mom and will continue to learn everything I need to know to give you the best life possible.
So yes Emma, I love you…more than you will ever understand.
