Back when Mattie was 4 months old, I overheard Jim calling Mattie “my special needs daughter”. WHAT?????? I was shocked, then sad, then in denial in all of 1 minute. That was the first time that anyone has said that aloud, let alone her father. My thought process went a little like this: Is that what people think? I don’t think that. I WONT say that! Am I the delusional one? Mattie is fine. She is not a “special needs” child.
At that point we were still not sure how Mattie’s PVL would affect her. It seems as the months passed and she was failing milestone after milestone, the “special needs” tag kept popping up. I eventually learned to say those words and accept it. I am not sure when that exact moment of acceptance occurred. I think it was always there. I was just not ready to admit it. I was still holding on to hope that everything was going to be ok.
We knew from the moment my water broke that Mattie’s life may not be easy. I had many days to think about it as I lied in my hospital bed. There were many long days and nights to think and pray and wonder and hope and accept. I am often asked how I can move forward after finding out my daughter had brain damage. The answer is not a simple one, as I have so many emotions, but I do know that I accepted the possibility of something going wrong long before Mattie was even born. Does that make it easier? Maybe in some ways it does. Some moms go through pregnancy with no complications only to find out after their baby is born that something is wrong, no warning given, not even a thought of something bad happening. These moms are not given a choice. We had a choice and we had time to accept our choice, no matter the outcome. I have no regrets; Mattie’s smile makes it all worth it, but will she? My biggest fear is that one day she regrets our decision. It is tough to even say that out loud and when I do it brings tears to my eyes. But I don’t want her to ever feel like she would rather not have lived then to be …disabled. So how do I teach her that???
A fellow SNM posted a blog just yesterday called “Mommy, will I walk when I am older?” OMG! I was crying reading this. This could be Mattie one day. What would we even say to her? How would we choose the right words to make sure she accepts herself for who she is and not become saddened by her limitations? I have a hard enough time coming up with a response when Joba tells me that one of the kids in his class does not want to be his friend… this is… just… mind boggling! I truly appreciate what this mom has to say about it. As I share and learn from other SNM, I continue to grow as a mom and I continue to gain the confidence I need to know how to handle moments like these.
This short essay goes around the special needs community quite often.
Welcome to Holland by Emily Perl Kingsley
When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. 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 experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
Of course I went through periods of anger, sadness, pity, mourning for what could have been. I still have those emotions. I am not sure they will ever fully go away, but I also have periods of joy, happiness, and amazement. Raising a special needs child has changed my life. There is no more ”should be” in my life (she should be walking, she should be sitting). The “should be” has been replaced with patience, understanding, love, and compassion at the samllest things. Every little or big milestone Mattie accomplishes makes my heart burst with love and joy. Mattie is teaching me to slow down and take it one day at a time.
As all moms do, whether you are a “special needs mom” or a “normal mom” we still want to see our children grow up happy, healthy, self-reliant, and confident in themselves and their abilities and succeed in life. We want our children to feel loved and show love because in the end “all you need is love”.
I can only hope this for my beautiful daughter, Mattingly Hope.
In a text from Sarah last week, “rockin the 4 point”. This made my day! Thank you 🙂
you are truly an inspiration Jess! All of you!!!
As women, and more importantly mothers, we all face the worries of raising strong children. I cannot see what the future holds but I KNOW with you and Jim as her champions, her obstacles will be met with confidance – and a big ‘ole cheering section behind her!!! And when you need a little extra enouragement you can always find it here. I’m so proud of you.
I’m all verklemp! still have tears in my eyes after reading your post. One day Mattie will know how lucky she is to have such great parents.
Beautifully written Jess, you have an incredible ability to write as well (or better) than any author I’ve ever read. When you post about Mattie, the love, the joy, the tears, the pride, the incredible determination you feel comes pouring through your words and puts us right there with you cheering and celebrating each hurdle. Thank you for keeping us a part of your journey, you are all in my prayers everyday!
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Jessica I am not sure u know this but I am the luckiest teacher in the world because i get to teach children with special needs. Your words brought me to tears. Your daughter is beautiful and has the best parents. If you ever have any education or early intervention questions let me know. Mike and i would love to help raise funds or awareness.