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.
Mama
(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.
Happy Birthday to Lydia!! Love to Mom and Dad...
ReplyDeletePeter & Denise
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.
ReplyDeleteI 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.
ReplyDeleteIn Christ,
Tracy
Happy Birthday little princess, daughter of God. May you get a special blessing just for you today.
ReplyDelete"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
Jenn, she is just beautiful. Those photos are so precious! What a sweet gift for Lydia!
ReplyDeleteI 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
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.
ReplyDeleteJen, she looks beautiful in the tutu. Absolutely adorable. Happy Birthday sweet Lydia.
ReplyDelete"His hands
ReplyDeletetools 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!