I was reading a blog post this morning from a mother of a 3 year old boy who has cerebral palsy. It was very thought provoking and I thought that I would paraphrase what she said because it caused me as a mother to rethink what I should say about Nathan. I'm going to put this in my perspective as Nathan's mother.
When I tell people about Nathan or describe him to others, I typically mention that he has Pierre Robin, Tetralogy of Fallot, and a host of other serious birth defects. Not because this defines him, but I think it will help answer questions about him when they see he doesn't speak clearly, eat or doesn't do other things a typical three year old does. I tend to focus on the things he can't do when talking about him. The biggest reason I can come up with is because of MY OWN insecurities. I feel like if I tell people he had these birth defects up front, then we avoid any embarrassing situations. If I tell people he has had jaw surgery twice and a total of 18 surgeries in his mouth and face, I don't have to explain why he can't and doesn't want to eat. If I tell people he has these problems, I don't have to step out of my comfort zone. But if I continue telling everyone he has Pierre Robin and Tetrology of Fallot as a basic introduction, I'm skipping over the most wonderful and amazing and cheerful and energetic and happy-go-lucky little boy I've ever met. I'm still working on it, but this post has definitely challenged me to find a way to describe Nathan in a positive light, leaving out everything he "can't" do.
So here's what Nathan can do:
Nathan is the kind of brother every kid should have. When Ellie is hurt he is the first to tell us even if he was the one who caused the problem. He immediately runs to give kisses and hugs to make things all better.
Nathan is great at volunteering and saying prayers (with help) when we pray as a family. He is ALWAYS the first to volunteer.
Nathan is a great singer. He has mastered Twinkle, Twinkle Little Star, Old MacDonald, and Head, Shoulders, Knees and Toes. His articulation could be better, but he loves to express himself through music and because of this we have found this to be a great outlet to teach him both in church, school, and therapy sessions.
Nathan still has times when he needs to go to Time Out. However, he will always stay in place without kicking, screaming, or crying. He is always quick to say he was sorry for what he did.
Nathan has a great imagination and loves to play with anything. His current favorites are having the IKEA plastic forks, knives, and spoons talk to each other and to dance around the table.
Nathan loves to play catch with footballs and baseballs. He is getting much better at kicking soccer balls as well. He is developing into a normal 3 year old boy right before our eyes!
I don't introduce Elisabeth as being exceptionally stubborn and strong willed so why should I not introduce Nathan in that same positive light?
So - this is Nathan. Nathan is a typical 3 year old little boy who loves to sing, play with footballs, and is extremely kind hearted. He's the brother that every child should have. He will be a great big brother in a couple of months!
1 in every 120 babies are born with a heart defect. What if that ONE was YOURS?
Our Little Man
We unknowingly became elite members of a world no one wants to be a part of on January 22, 2008 with the birth of our little boy, Nathan, but looking back we can't imagine life any differently. Nathan has had to endure 21 surgeries in the first 25 months of his life including open heart surgery for Tetralogy of Fallot, jaw surgery at 3 days old, 5 cleft surgeries and many surgeries involving his airway, ears, and eyes. He has a g-tube which he uses as his sole source of nutrition. In February 2010 he underwent a second jaw distraction as he was showing signs of right heart failure.
Nathan is our little hero; our witness that prayers are answered individually and that we couldn't be blessed with better family and friends to support us.
One day my world came crashing down, I'll never be the same. They told me that my baby was sick. I thought, "Am I to blame"? I don't think I can handle this. I am really not that strong. It seemed my heart was breaking. I have loved him for so long. I will not give up on this child. I will listen to your advice. I will give my son any chance. No matter what the price. I will learn all that I need To help my baby thrive. I'll even use that feeding tube. My child must survive! Will he need a lot of therapy? Will he gain the needed weight? Please God, help me do this. As I accept our fate. When the monitors beep at night, it serves as my reminder. How many parents would love that sound. Tomorrow I will be kinder. As another Angel earns his wings, I run to my baby's bed. I watch him sleep for quite a while. I bend down and kiss his head. I cry for the parents whose hearts have been broken. I look to You wondering why? Oh Lord, I just can't know your ways.... no matter how I try. And yet, I trust you hold his life, and guide us through each day. My mind says savor each moment he's here, but my heart begs, "PLEASE let him stay"! From pacing the surgical waiting room, to sitting by his bed. From wishing for a good nights sleep, to learning every med. From wondering, "Will he be alright?", to watching him reach out his hands. With every smile my heart just melts, despite life's harsh demands. For all who see that faded line. I look to them and smile. You see my child is loved so much. I would face ANY trial. That scar I trace with my finger (It's the door to his beautiful heart). God must have known how much I'd love him (Just as He loved him from the start). A heart mom is always a heart mom. Now wise beyond her years. For those who have angels in heaven, Our hearts share in all of your tears. Every day I will try and remember, I was chosen for him (and no other). I will always embrace that beautiful day....... When I became a "Heart Mother".
~Stephanie HustedMommy to Braeden HLHS post FontanCarepage name: babyhusted
I "borrowed" this poem off of another blog. I'm not sure who the author is, but it truly touched my heart.(Original version found at http://garyandcamille.blogspot.com Thank you!) Heart Poem:
It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that she is just going for a visit. She is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared. She asks,"Will I be okay with only half of my heart?" Jesus replies,"Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart. Enjoy your time with your family, play and laugh everyday. And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."