Friday, November 16, 2012

face to face

Dearest Lily,

It's been awhile since I've written you a letter here. When you were in my tummy I wrote to you constantly, because I just wanted that connection - I couldn't wait to see you face to face. When you were an infant I wrote even more...because in those first months after you were born I was sorting through so many emotions, and writing just seemed the best way to process everything.

But now, as we're approaching your third birthday, my letters to you are growing further and further apart. And it isn't because I don't have anything to say to you...but now I say it face to face.




We're so connected, Lily. And that's something I'd always wondered if I'd have with you. I don't know why - maybe I had a picture in my mind of what life with a child with special needs would mean. Or maybe, like so many experiences in parenting, I just really didn't know what to expect. But I'm so grateful for what we share- the mother/daughter bond that is the exact same bond I feel with all of my children, no matter how many chromosomes they have. It's the feeling of waking up to Christmas morning - every morning - just being your mama. You don't even have to say a word, just a little smile or a hug lets me know how much you love me. I just can't get enough of that feeling.

I read a thought provoking blog post the other day, by another mama of a little girl with Down syndrome. She talked about things I've often wondered myself, and things I don't have all the answers for. Mainly she just wondered - will our children have Down syndrome in Heaven?

I believe with all my heart that you were no accident. I truly believe God knew exactly what He was doing when He created you. I believe that verse that says "For you created my inmost being; you knit me together in my mother's womb." I don't believe we can pull that verse from the Bible and only apply it to "typical" children... I don't believe God makes mistakes.




But I also know that we don't live in Heaven right now. We don't live in sinless perfection, and just as children...people...have weaknesses and flaws, so do children with special needs. God paints such a perfect picture of Heaven for us- "He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away." And one of my favorite verses (in the King James language, because I think the cadence is so beautiful) "Beloved, now are we the sons of God, and it doth not yet appear what we shall be: but we know that, when he shall appear, we shall be like him; for we shall see him as he is."


We shall be like Him.



I don't know entirely what that means, dearest Lily ... because I trust that believers in Jesus will be uniquely ourselves in Heaven. But at the same time, the Bible says that we'll be changed.


So one of the things I truly believe...with all my heart... is that as connected as you and I are right now - and as much as I treasure that connection and bond - I will truly see you face to face in Heaven.


No limitations. No language or speech barriers, no cognitive delays, nothing to impede communication - you will know as you are known.


And maybe there will be something of that extra chromosome that remains, something to distinguish you from others, perhaps some of the innocence and lack of pretentiousness that has stood out to me as something unique to Down syndrome...  but I'll leave that to God.



 For now I'm just grateful to be your mama.



"For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known." 1 Corinthians 13:12


Love always,

Mama oxox

13 comments:

Leah said...

Love this post my friend. Your love for Lily is amazing

ckbrylliant said...

So Sweet. She looks so cuddly sucking her thumb.

Marietta said...

Whatever she will be in heaven, she will be perfect, as will all of us in heaven.

Beth in Atlanta said...

Maybe we ALL will have Down's syndrome in heaven. Maybe that's what perfect looks like

Ilisa Ailts said...

Very sweet picture of Lily!

Life with Kaishon said...

I loved reading this with all of my heart.

Mrs. K said...

I can just hear Lily saying in tha last picture, "Mama, you gots one eye." For God so loves us He gave us Lily to open our eyes and hearts to the many beauties and wonders of this world.

cara said...

Having a hard time writing through the tears. I can SO relate. I feel the same way. I do not think we can truly understand what it is like to have a child with down syndrome or special needs until our very own is placed in our arms. We are forever in love; forever blessed beyond words. I connect with Benji on such a deep level. I cannot get enough of him. I literally could kiss him and hug him a million times a day. He just melts me every minute. His precious personality just lights us all up continually. He and I just seem to know what the other is thinking even though the communication is not always clear through verbal words. And I also do not believe God makes mistakes. There really is something extra special about this little guy with down syndrome in our home. I believe all kids are special and unique in their own ways, but I know you can relate to what I am saying about Benji. I have not thought about him in heaven a lot. I know it has gone through my mind, but this really has made me ponder it. I wonder if all the communication delays will be gone, etc. God will make all things new. LOVE this post Patti. And I ADORE these pictures of you and Lily. Can't get enough of her either!! She is truly too precious for words. xoxo

Krista said...

Beautiful Patti, as always.

Sonya said...

It is like you read my heart every time you post <3 I ask myself those same questions about how Glory (my daughter) will be changed in "true" form or (because I love her so much) if this is perfect. Would God heal her now? Then I think of the complications with Ds and getting older and I realize I don't want her to suffer through those. Oh, the ponderings in my heart for her! My eyes are more open to thoughts I've never thought before with the others.

April Vernon said...

Beautiful.

Carrie Scharf said...

Thank you. Lovely letter! I had not thought about that. What a wonderful thought.

Carrie Scharf said...

Thank you. Lovely letter! I had not thought about that. What a wonderful thought.