Monday, April 19, 2010

8 Months

Dear Lydia,

You turn eight months old today.

I think only you understand how difficult it is for me to write this letter. You’re the only one who has been with me for almost every sad, helpless moment of this past month. This is probably the hardest letter so far. I’m having such a difficult time celebrating all of the sweet little moments with you like I used to. But I still try. I know that every moment I get to hold you in my arms is a gift, even if it sometimes is I gift I have to grapple with.

God has still been very good to me and given me such precious moments with you. I know, practically, that you can’t control when you seize and that no amount of rocking and loving from me is going to make you stop. But, there have been moments when you are screaming through a seizure and when I come and pick you up and rock you gently as I sing you our new song, you quiet down and fall back asleep. He knows I need those moments because for every one, there are ten awful ones that I can’t help.

You don’t wake up much now. The only time I get to see your beautiful eyes is when you are having a seizure. Every now and then, you’ll wake up for a few seconds. I’m not sure if you can see me anymore. It’s difficult some days to believe that you hear or understand anything, but deep down I believe your soul is still aware of what is going on around you. I pray every day that you feel how much I love you as I hold you close and whisper it over and over into your ear.

Whether you understand or not, we’re still trying to take you places and do new things with you. This month we’ve planted seeds, baked cookies, gone to the zoo and celebrated Easter! All things made better because they were done with you.

For all the bad, hard things there are still so many beautiful things. And until you aren’t here anymore, I will keep trying to show you things and keep making memories that I will hold in my heart until the end of my days.

I love you, sweet girl. Always will.


(My friend Amber made Lydia a tutu! Here are some pictures from our photo shoot! I was calling her "Tiny Dancer" and singing Elton John).

Baby ballerina feet.

Showing off her mad plié skills.

Please note the chubby belly situation we have going on here.


  1. Happy Birthday to Lydia!! Love to Mom and Dad...
    Peter & Denise

  2. Lydia is beautiful. Somehow I found your blog, now I can't seem to leave it. Your lives tug at my heart everyday. So sad this is the path you must take. I love to see your pictures of memories doing the ordinary in your not-so-ordinary life. I wish you could feel the love I send your way.

  3. I found your blog by chance, but now cannot stop praying for you and your sweet baby. May God's love wash over you, your beautiful daughter, and your whole family.

    In Christ,

  4. Happy Birthday little princess, daughter of God. May you get a special blessing just for you today.
    "And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love Christ, and to know this love that surpasses knowledge - that you may be filled to the measure of all the fullness of God." - Ephesians 3:17-19

  5. Jenn, she is just beautiful. Those photos are so precious! What a sweet gift for Lydia!

    I am praying for you every day. It is so hard to try to find the right words to say to you, knowing I can't possibly know how you feel, but I pray. For comfort and courage, and wisdom for you and your family. And comfort and healing for Lydia. Everyday :) Love you guys

  6. Oh Jen, my heart breaks for you and I can't help but envy you all at the same time. Honestly, I can't decide how I feel. Those pictures of Lydia in her tutu are so precious! I would give anything to have a picture of my girls in a tutu...yet I know you have paid an unfathomable price...every memory, every moment you have had with Lydia that I envy, has cost you more than I can imagine. How I wish I could give you the memories without the cost. I'd save her for you if I could. I love you friend and know I am praying for you day and night as you endure these harder days.

  7. Jen, she looks beautiful in the tutu. Absolutely adorable. Happy Birthday sweet Lydia.

  8. "His hands
    tools of creation
    stronger than nations
    power without end
    and yet through them we find our truest friend
    His hands
    sermons of kindness
    healing men's blindness
    halting years of pain
    children waiting to be held again

    His hands would serve his whole life though
    showing man what hands might do
    giving, ever giving, endlessly
    each day was filled with selflessness
    and I'll not rest until I make of my hands what they could be
    'til these hands become like those from Galilee

    His hands
    warming a beggar
    lifting a lepercalling back the dead
    breaking bread, five thousand fed
    His hands
    hushing contention
    pointing to heaven
    ever free of sin
    then bidding man to follow him

    His hands would serve his whole life though
    showing man what hands might do
    giving, ever giving, endlessly
    each day was filled with selflessness
    and I'll not rest until I make of my hands what they could be
    'til these hands become like those from Galilee

    His hands
    clasped in agony
    as he lay pleading, bleeding in the garden
    while just moments away
    other hands betray him
    out of greed, shameful greed
    and then his hands
    are trembling
    straining to carry the beam that they've been led to
    as he stumbles through the streets
    heading for the hill on which he died
    He would die
    they take his hands, his mighty hands, those gentle hands
    and then they pierce them, they pierce them
    he lets them, because of love
    from birth to death was selflessness
    and clearly now I see him with his hands
    calling to me
    and though I'm not yet as I would be
    he has shown me how I could be
    I will make my hands like those from Galilee"

    I wanted to share these lyrics with you because you are truly a Christ-like spirit, and an inspiration to all of us. Bless you for in all of your struggles, you have tried so hard to keep the eternal picture in mind and have been so selfless and loving to that precious little girl. Sending love and prayers your way!