Saturday, October 16, 2010

Not today...

Dearest Lily,

I don't know why I'm emotional today. I think it's because everybody in the ds world seems to be going on a Buddy Walk this weekend. Or lately.

Lily, it's been a long time since I cried about you having Down syndrome. Most of the time it really doesn't even make me sad. Even a little bit.

So why is it today?

I think because tucked away in a little corner of my brain, is the knowledge that I really am just starting this journey with you. Today you are 9 months old, and they have been the best 9 months of my life- because of you. Because I am so head over heels in love with my baby girl and I just can't get enough of you.

So here I am, writing to you...because this is my place to come when I need to get it all out. Sometimes I stop myself mid-sentence, and think, "How will so-and-so react to reading this?" And I backspace through all my fears.

But today I'm reminding myself- this is my place. These letters are for you and for me. And I don't want to stop being transparent at the risk of offending people, or sounding like a big baby. Because the purpose of my letters is not to educate people about ds, or what it means to be a parent of a child with special needs. There are plenty of blogs or books or resources out there for that.

My letters to you started because I needed a source for my fears...and my joys and triumphs as well.

So what's the big deal about me not wanting to go on a Buddy Walk? Who will miss me there?

I don't know, Lily. But it's really bothering me.

I don't want to go.

I don't feel up to seeing how life might be when you're a teenager... or an adult. I'm just not ready for that...yet.

But you know what?

That's okay.

Right now we just take one day at a time. One beautiful, love-filled day at a time. And we're happy and content and thrilled with sweet and perfect YOU.


So while I am so happy for those who are walking across the nation for ds, I'm not going to be ashamed that I'm not ready to walk just yet.

I'm home loving my baby girl, and that is all I need for now.

Loving you to the moon and back,
Mama oxox


Ashley said...

Thinking of you guys alot today... <3 Hope to meet soon! But not at a Buddy walk....until you're ready :) There is always next year for you guys to go to one.
P.S. Me and my mom figured that San Francisco is about half way for the both of us :) Just thought I'd let you know!

Ashley said...

Oh, and I wanted to tell you that a Doctor at the DS clinic at the Children's hospital of Pittsburgh wants a copy of my DS awareness video so he can put it in the parents packets for new parents of a child with Lily is going to be famous ;)

Sarah said...

That is ALL you ever have to do!!!! And you'll be loving that teenager or that adult, who happens to have DS, so there is absolutely NO NEED to be ashamed. I do not have anyone close to me with DS, so what I say man not mean much, but I was thinking how we all have things about our children's growing up that is painful to deal with, and thankfully some things that will be challenging will not cross our minds at this stage of the game. You just happen to know the category of the challenges you'll face with Lily.

As a teenager and in my early 20s, I was not really that interested in dating and used to worry if I would get married or not because I feared what the imaginary lonely life of a 40 year old would feel like, and it hit me around 25 that I was happy in the now. So the 40 year old self, if single, would be happy as well. The ability to make oneself happy doesn't change with age or time or circumstances. Similarly, loving and accepting your kid won't change either. You'll be saying "One beautiful, love-filled day at a time. And we're happy and content and thrilled with sweet and perfect YOU" at whatever age Lily is!!!

Deanna said...

i couldn't do the buddy walk this year either. we'll get it next year. sometimes it is just too hard to see other kids with ds because it causes me to sterotype and accept a certain outcome for addison instead of pushing for more. also- we just love our babies, sometimes we totally forget they even have a "label". to be reminded of that label through a buddy walk is tough.

Unknown said...

Very normal feeling. It was hard going to the first few Ds events. I wasn't use to being around them. I wasn't use to their actions or lack thereof. I wasn't use to their speech. I remember going to a talent show with my sweet baby girl and not wanting her to be this way. So, I started slowly. Little by little those children got me, one by one they crept into my heart until I was hooked. I love, love, love all the individuals I know with Ds. They make me better.
Take your time.

Tara said...

No hurry. You'll get there. I couldn't even look at pictures of older kids or adults with Ds for a long time after Eon was born...and I'm an OT and have worked with those in the Ds population for years. It was too personal and I was enjoying my "one day at a time". Guess what? I'm still enjoying one day at a time, but I also very much look forward to the man Eon will one day be. (Doesn't mean I won't cringe inwardly next weekend if they have the same off-key singer with Ds sing the national anthem at our walk, though. :)

Elissa said...

I don't think you should feel badly at all about not being ready for a Buddy Walk. We all have to walk this walk and make this journey in our own way. For me, diving into all of the events and activities is the best way that I can sort through and manage my thoughts and feelings. With that said, when we went to a big, formal event a month or so ago for our local chapter, I found myself a little surprised and upset at some of my feelings. But again, for me, this is the only way to get through these feelings.

Lily has a wonderful family and a wonderful momma. Going to or not going to a Buddy Walk this year, next year, or any year doesn't change that. That baby girl is clearly loved, happy and fulfilled. THAT is what is most important.

Patti said...

Thank you for all the sweet comments. I don't know why it's been bothering me so much...except that I feel like such a wimp. And wish I were a little stronger of a person. But thank you for understanding and being so kind:)ox

Penny's Peeps said...

patti....i've never met you, but i know that we will be terrific "cyber" friends. i love your blog, and plan to catch up on it next week when wyatt's napping....i think it's wonderful that you are strong enough to KNOW that you can't do a buddy walk right've got years ahead of you for BW's!

are you on fb? i'd love to stay in touch that way too.... i just feel a terrific bond with you!

so far it hasn't gotten easier...the comments from people. but i'm not that far ahead of you in this unexpected journey...wyatt is just 15 months old...

i think there will always be some days that are hard...but they do get fewer and farther in between!

your lily is beautiful! i love all your pics!


TheFoleyFive said...

YOU wish you were a stronger person?! Patti Rice. You are a tough woman. you have that sort of strength that even when you're faced with things we all hope to never face, and you struggle with things I can't wrap my head or heart around..despite those have this generosity, this SWEETNESS, this kindness that pervades every thing you write. Your writing has convicted me more than you can imagine, because Jesus is so in every word, even when I'm sure you feel like you're just venting or ranting...its not...its convicting, because your spirit is right and your heart is so where I wish mine was. You are not weak. You are a brave, strong, outstanding mother. now go look in the mirror flex and yell HHHUUUUAHHHH at the top of your lungs!!!! GO!

nicole said...

Anyone who has 10 children is the farthest thing from a wimp! You have courageously decided to wear your heart outside your body with each of those 10 blessings, but most especially with Lily. You have a deep love for Lily ~ it's so very obvious and thank you, thank you, thank you for loving her so perfectly! God many blessing to you and yours.

Lori said...

Ditto - on all of it - only God knows the incredible impact and influence you have had on me - God knew I needed you in my life as a sister and I am so thankful I fell in love with your brother cause now I have him and you! You are amazing!!!

Susanna said...

I hear you, Patti. Taking it slowly here, too. We recently watched Praying with Lior, and that was a safe way to look ahead w/o feeling too pushed ahead, if that makes sense. It can be very complicated, can't it? But we'll get there, mama! ((((Hug)))) from one T21 mama to another.

Melissa said...

There are times I backspace through my fears too. I know IRL friends and family read, and what they will think often controls what gets published.

But there is nothing wrong with not being ready for a Buddy Walk. I was very afraid I would be ready this year. And then I was even more afraid that my family would be ready. So I went to 2 walks this year. The first was with Ds blogger friends. I'd never met them before, but knew they understood all my feeling.

And the funny thing was it was such a joyous event that I really didn't even notice the people with Ds. And when I did notice, they always brought a smile to my face.

That really helped prepare me for our Step Up walk with family, and I think everyone had a good time with the event.

Either way, the Buddy Walk will be there when you are ready!