Friday, March 6, 2009

Letter to Dermot


"Letter to Dermot"


Dermot,

I’ve been trying to put off this letter for quite some time. I just gave birth to your little brother and have realized how heartbroken I am over you. I look at pictures of you and get a tinge of sadness where I should get joy. I see the things you cannot do and the things you won’t be able to do. I’m so sad about it. I feel responsible, so much more than anyone else knows. I look back on the day you had your first seizure and I’m so angry with myself that I didn’t know what was happening. I feel like the length of time was my fault and that it caused more damage to your brain than was necessary. I’m so sorry. I know that you deserve the best in everything for your life and my regrets run deep.


God has a plan for our family, I know. All of the challenges that you go through help make us stronger, but I wish more than anything that I could take all the pain away, all of the drugs, all of the therapy. I sometimes imagine you as a normal little guy getting into trouble and running around. It hurts. You are so beautiful and special in ways I would have never imagined. I wonder if I will ever be able to overcome the heartbreak. I don’t know. I hope so. I wish sometimes I could just hold you forever and make everything ok, I know that won’t happen. Sometimes I don’t know what to do with my feelings about you, I feel distant and frustrated. Please know that those feelings are all about me. I don’t want them to affect the way I feel about you. I want the best for you and I will give you the best I can as your mother. I hope that you can grow with me while we figure out what your life is going to be like. I want to be your advocate, although I’m afraid sometimes that I’m going to make the wrong decisions regarding your well-being.

I promise to follow my instincts and be true to you. I promise to protect you at all costs and be there for you always.

I'm glad to know that we are surrounding you with people who love you and will take care of you. Your brothers will be your friends always and will be there for you when I cannot. I will teach them how to love and care for you with great compassion and understanding, or maybe I should say, you will teach them, as you are teaching me and your dad.

I resist new things for you sometimes because I don’t want to see you in pain. I get angry when you are sick because you have been through far too much in your life than someone should have to go through in their entire life. I was angry at God for a really long time about what happened to you. I know now that that wasn’t helping anyone. I need to see the real picture. I need to let God help us, help me. I can no longer live with the illusion that I can control the outcome of your life. I can love you with everything I am, I can care for you and try to make the best decisions for you that I can, and I can be with you every step of the way.

I keep thinking that if I get this thing or that thing for your life will be better, who knows. I’m working really hard to change my image of what my life should be like and what my kids and family should be like. My expectations should stretch and grow with every experience and never get stuck with one idea or one picture in my head.

I love you my sweet Dermot...

7 comments:

Fawn said...

Hi Sue - what a sweet, and bittersweet, letter. I identify with so many of the things you write here. Oh, the guilt, that useless guilt! And the feeling of somehow being cheated because one's child isn't "normal" and running around like everyone else. I have read other mothers who write about the special lessons they have learned from their child's special needs and I'm really not in that space at all.

I hope my words don't sound hollow because Jade now seems to be healing. I fervently hope and pray that Dermot (and by extension you and the rest of the family) finds some relief soon, something that will help him.

All the very best, Sue.

Kate J said...

Oh Sue, this brought tears to my eyes. A couple of things people have said to me came to mind. One mom said of her "normal" daughter, "I wish I could keep her just like this, put a book on her head so she wouldn't grow out of this sweetness." I realized, that is exactly what I've got! (I raised an eyebrow -careful what you wish for?) And a father, whose uncle had Downs syndrome said to me, "It's not about them - they've got a 'free ticket to Heaven' - it's about us, how we will be because of them." ~Kate

Susan said...

Sue,
Having spent last weekend with you and your wonderful family, I do understand your feelings, hopes, wishes, and dreams for Dermot and his brothers.

I would encourage you to let go of your feelings of guilt and responsibilty for the first seizure and every other seizure too. There is nothing, NOTHING you can do during a seizure to reduce its duration or intensity. NOTHING! The only thing you can do is to be there afterwards to comfort and love and seek out the best treatment you are able to. And you and Joe are AMAZING in the patience, warmth and love you show your children.

Love,
Susan

mark dwyer said...

Wow, Sue. Your honesty and openness are a tribute to the way you are embracing all of life. Though you tire, you sure inspire! I am grateful to know you. (and you too big Joe)

Liz said...

When I look at your family I just think how lucky you all are to have such a tight-knit, loving family. You have all been through so much, but your little guy has so much love from all of you and isn't that the most important thing. Just my outside perspective. We miss you guys!

blake kelly said...

well I wasn't planning on crying tonite but I guess I can fit in in...

Anonymous said...

Sue,

I haven't caught up on your blog in a long time. I just read this letter and it is amazing. You were able to beautifully say the things you are feeling. Dermot is so lucky to have a mom like you.

I can only imagine what your daily life is like. Our food allergies seem so minor in comparison. So far Eden doesn't have the allergies her siblings have. A month ago I took Eden to Yum for lunch. We split a cupcake and I teared up. So silly yet she is the only kids I can take to a bakery or out for ice cream. This simple thing made me for a moment imagine not fear treats as danger for my kids. While this is by no means as tough as what you go through it gives me a small sense of your feelings!

Wishing you lots of love! Laura Swartz