Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

Knitted Together

on July 2, 2012


“For you created my inmost being; you knit me together in my mother’s womb. I praise You because I am fearfully and wonderfully made; Your works are wonderful, I know that full well.
Psalm 139:13,14

I’ve always wanted to learn to knit.

When I was a little girl, my wonderfully talented Aunt Pauline once crocheted a beautiful purple afghan for me. I remember wrapping myself up in it, marveling at the intricacy of the pattern.

The creation of something  beautiful from something common like yarn- that’s the miracle of knitting.
Despite my admiration for the craft though, I could never quite seem to get the hang of doing it.

But now seems like a good time to try again.

If Joscelyn’s pre-op testing goes well over the next few days, she’ll be undergoing hemispherectomy surgery at the end of the week.
The procedure is 8-14 hours long.
That’s a long time to worry and obsess over something that’s completely out of my control.  

 I need an activity I can do in the waiting room that will not only help to take my mind off of everything but will also give me an outlet for my nervous energy.
I’ve been told that knitting is very therapeutic. The repetitive motions inherent to the craft put the brain in a meditative state, similar to that of someone doing yoga. Knitting also decreases your heart rate and lowers blood pressure.

So a few days ago, I bought a Martha Stewart Knitting Loom and several beautiful balls of yarn. Yesterday, my friend Jennifer, a talented, experienced knitter showed me a few basic techniques and helped me get started making a soft, fluffy hat for Joss.

As I began working on it, I was reminded of a scene in the movie, “Like Water for Chocolate“. In the film, the heroine is devastated after losing her one true love. Heartbroken and alone, she speaks of a longing and hunger that food cannot fill; of a cold in the depths of her being that no fire can warm.
Bereft, with tears running down her cheeks, she begins to knit a shawl to assuage the chilling emptiness which consumes her.

She pours her pain into her knitting.

Sometime later in the film, she suffers a nervous breakdown. A kind doctor gently leads her from the house, wrapped in the shawl her grief has crafted. She climbs aboard a horse-drawn wagon and as the camera slowly pulls back, we see the shawl covering the back of the wagon, cascading to the ground and trailing behind for miles as the carriage pulls away.

Admittedly, this act of knitting a hat for Joss is a little crazy, too. I mean, It’s not like she needs another hat!  We were blessed with over 40 adorable hats at her Hat Party recently.

But I need to make it, as an act of faith that she’ll make it through the surgery.

 I think I view it as some sort of delusional insurance against her leaving us.

“I’m sorry, God. You can’t take her  home yet because I’m making her this hat, see? And I’ve been working really hard on it and it isn’t finished yet.”
I feel like these are perfectly reasonable grounds on which to appeal to the Almighty, considering that He knits, too.

Psalm 139: 13 says that God “knits” us together in our mother’s womb.  While Joscelyn’s hemimegalencephaly may have been a surprise to us, it was no surprise to Him.

The next two verses of that chapter go on to say:

My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.”

God had a special plan for our daughter before she was even born.

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not harm you, plans to give you hope and a future.”
Jeremiah 29:11

I don’t know why God chose to knit our daughter together in this fashion. He doesn’t do it very often.
HME strikes less than 24 children per year.

But I do believe that while I may not understand this part of the design, it’s only one small part of a much larger pattern.

Have you ever played one of those games where you try to identify an object based on a close-up of only one part of it? It’s very difficult!

God sees a bigger picture that we can’t. He, and only He, understands how my little girl’s condition, treatment and recovery  fits into His overall design for her life and for the lives of everyone who reads this blog and has been touched by her story in some way.

He’s not asking me to understand. He’s asking me to trust.

So, I will take my knitting to the waiting room.

The loom will be my rosary,  every stitch a prayer.

Oh, Help me, Lord! I fear I may completely unravel! Only You can knit the broken sections of my heart and my shattered dreams back together again and make my life a beautiful tapestry for all to see.



35 responses to “Knitted Together

  1. Steph says:

    Oh Jennifer…this is so beautiful. We are ever-praying. You have it so right on in this post…”Have you ever played one of those games where you try to identify an object based on a close-up of only one part of it?” This is SUCH an spot on analogy of seeing/not being able to see God’s plan. And when the bigger picture is revealed you are like, “Ohhhhh, there it is.” I pray we will see that picture one day!

  2. debbie says:

    tears!!!!!!!!!!!!!!!!!!!!!!!!!! I love you!

  3. Melissa Yates says:

    Praying for you and your family today, Jennifer.

  4. June Silva says:

    I sat outside this morning at about 6:15 AM thinking about and praying for your family. I then came in and found your wonderful post on my computer. You stated everything in such a beautiful way. Your little girl is wrapped in the arms of so many in prayer, as you and your family are! With Love, June

  5. seabreezegg says:

    Thanks so much for your beautiful post, I was reminded when I went to donate blood for Jos that each one of us has the ability to make a difference in our own special way each day. Today you are making a difference for not only your daughter but for yourself and for others with your blog. You are loved and prayed for today, sending caring compassionate thoughts to each of you. Gail

  6. Tina Miller says:

    me and my hubby just said a prayer for peace and healing for all of you. We will continue to pray daily. Much ❤ to all of you.

  7. Cynthia Greenly says:

    Dearest Jen:

    You are so blessed to be able to express yourself this way. You know how too short life is and how very valuable time together is with family. All these prayers are not being said in vain; just like every stitch on your loom is like a prayer on a rosary.

    I pray it fulfills your time and turns out a lovely hat for a beautiful little girl to wear as she endures this surgery to triumph over this “bump” in the road. Like you said, we are not seeing the big picture now and all we can do is trust He hears our prayers and guides the surgeon’s hands throughout. There are so many out here that love you and yours and are praying. The Bible also says “Where 2 or more are gathered” and you have leagues of people praying.

    One day, Joss will be able to go back through your blog/journal and read how much she was loved and cared about by your friends but mostly from you. She will be so honored and know the depth of your love FOREVER.

    Besides helping us all understand what you are going through, you are also helping the other 23 families that are having to endure this also problem because they will be able to read your experience and compare it to theirs. It may help them make a decision on what to do for their child too.

    I wish I had your talent for writing and your capacity to love so unconditionally!

    Many blessings for you and yours-

    • Thank you so much for your kind words and encouragement, my faithful friend! I think you have an amazing ability to love and to build others’ faith! I am very fortunate to call you friend!

  8. If there is anything i can do to help you learn the knitting, just me know. It is a very addictive hobby and will be a great thing to do to pass time while waiting. Thoughts and prayers are with you.

  9. giazzpet says:

    Oh honey, I knit for fun and yes, sometimes it does relieve stress. I know in my heart of hearts that Joss will be okay and I send you lots of hugs and prayers. I might just knit you a shawl (er, need to know what color you like ;)) so that you can have hugs from me even if it is virtual. I also know that Nick is above and watching his little sister.

    You will get through this – I know it’s hard but we’re all rooting for you and your family. HUGS in the meantime.

    • Thank you so much, Gia! You do not have to go to all the trouble of knitting a shawl for me but if you did, I’m sure whatever color you chose would be just lovely! Hugs to you my sweet virtual friend!

  10. Kathy says:

    I’m hugging Marian and we are thinking of your family. We are praying for strength and laughter and patience. We are hoping you receive doctors and therapists blesses with knowledge and compassion. I’m hoping you have many years with Joss to make so many great memories that these pages will be your biggest remembrance of these days. Love from Marian and I

  11. Cristina Simmons says:

    Very beautifully written! I have been thinking about you and your family all this week wondering if the procedure had taken place yet. I am friends with Danielle Daugherty and I gave blood for Joss last week. As a mother having lost 3 infants to a very rare genetic disorder, I have often questioned His path and plan for my family but from our grief many blessings were born. I know the worry and helplessness of a sick child and I was glad to be a small part of your journey. I will continue to pray for you all and a big kiss to your baby girl.
    Love from The Simmons Family.

  12. Sally Gott says:

    What a beautiful picture of faith and trust. God will only give you what you can handle, even when you think you can’t. This child and your faith in this time will be a testimony to those who do not believe. They will look at the circumstances and attitude towards it with confusion and aw. May your family continue to be a witness!

  13. Ute Galloway says:

    Lord I thank You for the great news You gave to all last night and that You continue working on Joscelyn behave. Have her give her parents a great big smile this morning when they walk into her room, and have her move a finger on her right hand this morning. Lord I praise You and glorify You and know that You will be with Jos as she recovers quickly. Please encourage her parents and love on them and I thank You for this in the name of Your Son Christ Jesus AMEN!!!!!!!!!!!!!!!!!!!!!!!!

  14. jamie hall says:

    Hi Jennifer I came across your story in the news paper where I work me and my family are praying for your daughter. Dear heavenly father I’m lifting little joss up to you in prayer father asking that you give her peace lord and heal her from her sickness. She is your precious child oh lord and I ask that you comfort her parents and brothers lord I pray all this in Jesus name amen.

  15. Meli says:

    I learned to knit a couple days after my first miscarriage. For months, that is all I did. It is very healing. Sending many prayers to your little one.

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