Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

Extended Family

on July 17, 2012

When I started this blog just a few short weeks ago on May 27, 2012, I had no idea how quickly it would grow!

 I certainly never anticipated that in just over a month and a half, it would be viewed nearly 26,000 times or that hundreds of readers would be checking in every day to read the latest post!

 It’s very humbling and frankly, a little frightening!

 As Anna Nalick says in her beautiful song, “Breathe”:

“I feel like I’m naked in front of the crowd,

‘Cause these words are my diary, screaming out loud-

And I know that you’ll use them, however you want to.”

 With transparency comes vulnerability.

 I worry sometimes that people may somehow try to use these words against  Joscelyn in the years to come; to discriminate against her or to label her in some way.

 Will she one day resent that I’ve been so open with her story? Will she tire of always having her achievements viewed in light of her condition or will she be grateful for the opportunity to encourage and inspire others with her amazing testimony?

 Only time will tell.

 My hope is that on days when she doubts herself, when she compares herself to others who have an easier time of accomplishing what takes her a little more effort to accomplish, when she suffers the cruelty and insensitivity of others’ ignorance and prejudices, she will find refuge to this online community.  Here she will find a safe haven; a place where she is accepted, supported, encouraged, rooted for and loved! In a world that may sometimes question her significance, here, she is celebrated! Here, she is a rock star! Here, she is forever a warrior princess ever ascending to greater heights!

A sweet member of “Team Joss” sent me this message this week,

“You realize for just about the rest of her growth years and up to 18 and beyond, we are going to need updates on all the remarkable process Joscelyn makes from all the “firsts” to graduating Kindergarten, to going into junior high, any sports she plays, all of the pictures she is going to color and draw, and all the little gifts she makes for her mom and dad while in school. I really hope you know that you have managed to create the largest extended family I have ever been so privileged to be in! Oh, I am so excited about her first self- created dress up outfit and picture, the first time she does her own hair, etc. etc.”

“An extended family”.

 What a beautiful thought!

It DOES feel as though you are all almost as excited to read of Joscelyn’s achievements as we are to tell you of them! And I promise to give you a window into her journey for as long as she allows me to!

Thank you for being a part of this extended family! Thank you for helping me to fulfill the vision I had when I created this blog! Thank you for walking beside us on this journey and for helping us nurture our little girl!

Thank you.

Joss is continuing to improve by leaps and bounds! This morning, when she woke up, she uttered the most delightful word in the whole world:

“Mama”.

“Mama” was the only word she knew how to say before surgery. Aside from its great significance to me personally, it was just incredibly reassuring to know that she is already back to her “baseline” in terms of speech and language.

She’s doing great physically, too! She’s holding herself up well in a sitting position, eating like a champ and is showing signs of typical baby restlessness. We won’t be able to keep her quietly in bed for too much longer!


I just love seeing that beautiful smile! 🙂

If this fantastic progress continues, we should be able to go home from the hospital in just over a week!

Thank you for your continued prayers and good wishes.

We’re so glad that you’re a part of our family!

 

 

 

 

 

 

 

 

 

 

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21 responses to “Extended Family

  1. Tina Miller says:

    Jennifer thanks for sharing with us. You are such an inspiration to many. And Joss is the most precious little girl. I love her bib. LOL. So glad things are looking up for you. Praying as always for all of you.

  2. Cynthia Greenly says:

    Dearest Jen:

    In no way do I think Joss will have hard feelings over this. I believe this is a testimony of your love for her. We (your extended family) wait as impatiently as you do to hear of her improvement and next steps. Like I have said numerous times, you are exceptionally well-written and in reading these blog, can feel the love, pain and anguish you are going through on behalf of your beautiful daughter. I can feel your triumphs when you finally got to hold her and this morning when she said her first word “Mama”.

    I continue to pray…pray for the curious…who will question you. I pray for the Prayer Warriors…who continously pray to our God for the best to happen in this scenario for Joss unselfishly. I pray for the ignorant…who hopefully will be able to hold their tongues. I pray for your family…who will continue to have patience, strength, and love for one another through this unfortunate illness. I pray for the doctors…who will continue to do their absolute best with their knowledge of this horrible illness. I pray to our God…who will continue to bless the doctors and guide their hands. I pray for Joss…who will continue to amaze us all…Yes, our little warrior princess.

    Love ya,
    Cynthia

  3. Norma Ruttan says:

    Just think, if you hadn’t shared, that many prayers would not have been said for Joscelyn. Of course, I prayed for the surgeons as well as for Joscelyn. I’ll continue to pray. God bless you and your family.

  4. Nancy Tucker says:

    Thank you for the update. We gave praise to God tonight for answered prayer of the surgeries going well. And asked for His continued healing of Joscelyn and comfort for your whole family.
    She looks so beautiful sitting there smiling at you. =o)
    Thank you for allowing us to share in the journey. You get more prayers and we get inspired by your wonderful faith! Love.

  5. Audrey says:

    Oh how reading of Joscelyn’s journey has blessed me. It has reminded me to be in constant awe of our wonderful Creator, and for her to be speaking, my goodness! I continue to pray for her speedy recovery, and for the strength of you and your husband and your family as you travel this road! The Lord is our guide, and He is surely watching over you all at every second. 🙂

  6. Andrea says:

    I am honored to be a little tiny part of Joscelyn’s precious family. And yes, I do check your FB page several times a day, hoping and praying for the latest positive improvement! You are an amazing person, Jennifer, to have taken the lemons life has handed you and not only made enough lemonade to slake the thirst of your immediate family, but made whole vats of it that you freely share with your community and the world. I know without a doubt that God will continue to use you, Joscelyn’s story, and eventually Joscelyn herself to bring great glory to His Kingdom. Much love and many prayers going out to you today and every day!

  7. Becky says:

    I love being a member of your “extended family”. Keep praying about that shunt 🙂 they told us Connor would need one too and when it came time for the procedure he did not need one any more 🙂 She looks amazing! I went back to look at Connor’s first pictures after his hemi and they look so similar with the lopsided grin, but now you would never notice it as those muscles have taken over and given him his full grin back! The progress you will see is awesome. Connor walked before the surgery and of course after he did not, two months later he was back to walking. Looking forward to all her progress.
    I so hear you about what our kiddos will think when they are old enough to understand the surgery. Interestingly, Connor turned 10 yesterday and does not notice a thing different about himself. He knows his left arm does not fully work, but he doesn’t seem to have any idea he is different in any other way. I am so greatful for that. There are the people out there who are cruel and do not understand, but so far I am the one who hurts and not him! I know one day he will notice too, but I pray God’s grace will keep his beautiful spirit protected.
    So thank you again for sharing your journey, because now I have met a family who will be on the journey with us and hopefully we will connect with many more “warriors on the way”
    Blessings,
    Becky

    • Thank you so much for sharing your encouraging story with me, Becky! I LOVE to hear from other hemi moms! I’m so glad to hear that Connor is doing so wonderfully! I will be praying for you and your little warrior too! Hemi hugs!

  8. Karen Robertson says:

    It has been and will be a privilege to pray for sweet baby Joss! She was born with just the right mama!

  9. Mariellen Barr in PA says:

    How wonderful to hear “Mama”-like sweet refreshing water to the soul!!!! I am so grateful for your openness and vulnerability in sharing your and Joscelyn’s walk. Only through Christ can we have the trust and confidence it takes to walk such an agonizing road and share it with others. I thank you for trusting God and allowing perfect strangers into your heart. God bless you, sweet mother. I am praying for your precious girl.

    P.S. I am a Christian wife and mother of 4 boys (7months to 7 years old). I can’t even imagine what you (and your family) have been through spiritually, emotionally and physically up to this point. I can only attempt to breath in your experience and ask the Lord to shape me from it. Thank you.

    • Thank you so much for your prayers, Mariellen! 4 boys in 7 years! You are a busy, blessed woman! 🙂 It is my privilege to have you by my side on this journey! Blessings to you and your precious family!

  10. June Silva says:

    I have been told by some of the people that I am forwarding your blog to that they are connected to prayer lists all over the world! Look how many lives have been brought together in prayer!
    Moms want to protect their children and shelter them. You and your husband made a decision that is going to give your little girl such a quality of life that she would not have had. All the research you did and then shared indicated she would not have the future “we” are all looking forward to today. Please do not second guess yourself. All indications are she is improving each day! She has such a sweet smile and that is shinning thru!! She looks great and from what you are sharing all indications are a bright future for this wonderful little sweetheart! I am so excited that she spoke Mama!!! She is already so far along and if you read your original blogs when you were first what was going to happen, I believe she is doing so much better than first thought.
    I have a feeling that God has wonderful plans for this young baby and you will proudly sit and watch her excel at all those school graduations!!! Prayers and Good thoughts continue to be with you! Please be kind to yourself! You must be exhausted and ready to breath air! I am looking forward to a “post” real soon when you tell us about her first carriage ride!!!
    Love and Hugs

    • Thank you so much for your encouraging words, June! We are thrilled with how much progress she has made thus far and look forward to sharing many more good reports as the months and years go by! Thank you for supporting and loving us on this journey! Hugs!

  11. Daryl says:

    Do love reading the updates, we have a prayer group at work and we have been praying for your little one may each day bring more and more good news

    • Thank you so much for your prayers, Daryl! They mean more to us than I can say! Please extend our thanks to your co-workers as well! We are so grateful to ALL of you!! Blessings!

  12. Andrea C. says:

    Hi!!! OMG, What a beautiful picture of Joss!!! I am so happy that she is doing well. I will continue to pray for her and your family. Again, please let me know if there is anything I can do. I hope to meet you one day soon! 🙂 Love, Andrea C.

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