Painted by Patrick Dominguez, our pastor in Raleigh |
– my great-aunt Eileen
This Mother’s Day is a strange one. I read beautiful messages on Facebook,
conveying heartfelt sentiments directed to women who are not mothers and want
to be, and to mothers who have lost children. I forget to put myself into that category, and then it hits
me: this sentiment is for me. The
person writing this may have thought specifically of me when typing these
words.
I have been to hell:
I
know the torment of waiting for a daughter whose life will not be typical, and
wondering what she will be like.
I
know the isolation of caring for her.
I
know the constant anxiety of monitoring each milliliter of milk that she has
taken, wondering, “Is it enough?”
I
know hope deferred, waiting for a lifesaving surgery.
I
know deep separation, handing over my precious baby to medical personnel,
watching her cry as she observed my tears.
I
know the agony of hearing hospital machines scream that something is wrong, and
no one can fix it.
I
know the utter “from dust to dust,” as I leave a hospital room splattered with
my daughter’s blood, and leaving her behind.
I
know an abyss of grief, wondering, “Why?”
I have been to heaven:
I knew the prayers of thousands that covered us during the time that we waited.
I knew the prayers of thousands that covered us during the time that we waited.
I
knew the meals and gifts that came to us as we were so isolated.
I
knew the doctors’ gentle encouragement that we were giving Julia exactly what
she needed.
I
knew an extra month of time with my little girl.
I
knew that she was in the best of hands at Nationwide Children’s Hospital, that
the hands that took her from me loved our little girl.
I
knew a deep, abiding sense of God’s presence with us as those machines screamed
and mocked us, and I felt His sorrow.
I
knew a supernatural reality as a man prayed with us over Julia as she passed in
to the arms of Jesus, and as we experienced the same sorrow as God Himself experienced when he watched the agony of His Son on the cross.
And
I know that the answers to the “whys” don’t exist for most of us who have
suffered: who have cancer, who have lost children, who starve, who have no
hope, who are hurt by an adulterous relationship, who are addicted, who are abused, who are mentally battered. Instead, the kingdom of heaven comes as we mourn together and become more
like Jesus through suffering.
I knew hundreds of encouraging notes and letters as we grieved.
I knew Julia's first giggle, just a few days before she died.
I knew the joy of watching Natalie love her baby sister.
I knew the perfect peace that surrounded little Julia, as she patiently waited.
I knew the way she loved me, with her eyes following me everywhere I went, though she couldn't vocalize or move in the way typical of infants.
I
know that Julia was rescued, that she was saved from this world and its
limitations.
I
know that Jesus has overcome this world, and His resurrection offers hope that
my Julia is safe and restored.
I
know that Julia Christine is His, with her name literally meaning “Young
follower of Christ,” and her first two initials reminding me of my savior,
Jesus Christ.
It’s not the heaven I wanted. No, I wanted heaven to be simple and happy and peaceful –
and full of the things that I desired.
But I was instead given an enlarged heart and soul, and a love for
people with Down Syndrome.
Gradually, I was given a deeper appreciation for life, though at times
it did not seem to be worth living.
I was thankful for a God who did not expect me to feel a certain way,
but embraced my sorrow as I sought Him.
Mother’s Day marks exactly 5 months since Julia died…and
also marks that Julia has now been with Jesus longer than she was in my
arms. This is a heavy moment, but
also in some ways lighter than I anticipated. I’ve realized that, for me, it’s not so much the
anniversaries that are hard, but that every day is hard…with each day getting a
little easier. Today is no
different than yesterday, or tomorrow…I’m just one step further along in my
grief journey.
And this little light?
She is doing beautifully.
She experienced deep confusion as she grappled with what it meant to lose
her sister. She worried about her
mom and dad, and these anxieties caused her to develop a stutter and lose some
of her hair. The stutter is gone,
and her hair is growing back now, and all of our spirits are growing back,
too. Natalie has forgotten some of
what has happened, and now it’s just a fact in her memory, detached from the
emotions: “Julia’s in heaven with Jesus.
Because He wanted her to be with Him. I want to go there, too!”
Amen, little one. But, not so fast! You're staying here with us, as we've reassured you many times.
As always, so very beautifully stated, challenging, encouraging, and difficult all rolled into one. Thank you for your honesty and openness in sharing. Still praying for you and your family.
ReplyDeleteDear Christine,
ReplyDeleteYou do not know me. But we have a friend in common: Jill Matuk. Jill goes to our church and forwarded your blog on to me. I have been following it since right after Julia died. You see, we share something that I wish we didn't. I have a 6 1/2 year old daughter named Mattie. When Mattie was 4, I gave birth to a little girl named Julia. Julia was born with Down syndrome. I knew in utero she had Down syndrome. She also had a common heart defect and was scheduled to have heart surgery when she was a few months old. She spent the first 4 weeks of her life in the hospital. After 3 weeks at home she had to go back to the hospital because something just wasn't right. After baffling the top doctors at Lucile Packard Children's Hospital, it was decided she had a very rare heart disease called cariomyopathy. She died in my arms at 11 weeks old. This was on February 8, 2012. I have appreciated your blog so much because I connect with so many things you have written about. God used Juila's short life in so many ways. He still uses it! But it has been a very painful road and continues to be. But it does get a bit "easier" as time goes on... whatever that means. So anyway, I just wanted to finally reach out to you and share with you that you are not alone. I am sorry you had to lose your precious Julia. Maybe they have met in Heaven. :) I know I just can't wait to see her again. If you ever wanted to contact me, my email is: valkbrown@gmail.com. I have a blog for Julia that I started the day she was born. I'd be happy to share it with you if you wanted. It has been a place of healing for me and a place to process. I don't write in it as much anymore. But I am glad it is there for when I need to vent or process. Well, thanks for reading and know I will continue to follow you and keep you in my prayers.