Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

Back to School

on August 13, 2012

Now that we’re home and trying to find our “new normal”, one of my first goals is to get Clayton and Jackson ready for the new school year. I can’t see the words “Back to School” without thinking of this hilarious classic commercial from Staples:

 Unlike the disgruntled children in this ad though, I’ve always loved shopping for back to school supplies! For me, the colorful store displays of pristine 3-ring binders, fresh packs of paper and erasable pens have always marked the beginning of a new year ripe with possibilities!

 Until now.

 For the first time in a decade, I won’t be getting my second son Nicholas ready for school. After ten years of buying school supplies for 3 children and filling out forms in triplicate, I find myself having to prepare only two children for the upcoming school year instead of three.

Nick was SO excited at the prospect of starting high school this fall! He was looking forward to advancing his skills on the Debate Team and to joining High School ROTC.

None of us could have ever anticipated that he would “graduate” from this mortal life before ever setting foot on a high school campus.

 As I push my cart through the aisles packed with back to school supplies and wistfully watch boys his age selecting electronic calculators and fashionable t-shirts, it’s easy to find myself mourning all of the experiences Nick is missing out on:

football games, band concerts, prom, graduation.

 I have to remind myself as I blink back tears and try to swallow the lump in my throat, that my child is now in possession of a breadth and depth of knowledge that no earthly educational institution could ever teach.

 He isn’t missing out on anything.

 It’s me that still has a lot of learning to do!

 Joscelyn just had brain surgery 13 days ago!

 I’m so excited to have her out of the hospital but at the same time, I don’t think I’ve felt this woefully inept as a  mother since I brought my first son home at the tender age of 19!

Despite the fact that I have no nursing experience, I’ve been tasked with remembering which medications need to be given at which intervals and with carefully cleaning her still-healing wound.

Though not a neurologist nor an epileptologist, it’s imperative that I quickly identify and report any signs of hydrocephalus, (which is potentially fatal) infection (also very bad) or any further seizure activity.

Though not a physical, occupational or speech therapist, I’ve been called to evaluate a wide variety of therapy providers and choose the ones that I feel offer our little girl the greatest chance of someday regaining full use of her right leg, arm and hand.

 As happy as I am to be home, the stakes are high and it can all seem a bit overwhelming sometimes!

 But just as I did when I brought my now happy and healthy 21 year old son Marc home from the hospital all of those years ago, I know that I WILL find my way through this! I’ll read books, ask questions of the experts, talk to other mothers facing similar challenges, and follow my instincts.

 I will do my best,

and pray that it’s enough.

 I still don’t know why God called me to live this life. It’s still somewhat unrecognizable to me as even being my own.

And always,

always,

I am haunted by the “why” of it all.

But I know there’s no sense in asking when there are no answers to be found; at least not in this lifetime.

So instead, I’ll focus my energies on the work ahead;

Loving and guiding my boys through another school year,

Finding the help and resources I’ll need to maximize Joscelyn’s development,

and balancing the needs of my husband, family, friends and community with my own as a woman as an individual.

“Yesterday, I thought I’d seen it all.

I thought I’d climbed the highest wall,

but now I see the learning never ends,

and all I know to do is keep on walking, walking ‘round the bend.”

 School is now in session.

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22 responses to “Back to School

  1. Tera Baker says:

    This is so beautifully written. Thank you for sharing your feelings. I am so sorry that I can’t hug you and take away your pain. I know this life sure can seem unfair…and I too believe that God will make it all clear. We will all be together. He just takes the really good ones first because they are needed for something we as humans can’t understand just yet. So…we continue to live our lives…and suffer what we must…and endure. You are good mommy. I am sending you my big hug.

  2. giazzpet says:

    Oh honey, you will do fine…and I don’t know how you are managing it, but you are. You have so much strength (more than a Knight) and I wish I could give you a Purple Heart Medal for all your bravery (heh, we should just create one just because)…but know that even though we’ve never met in person, I feel like I know you from reading about your Journey along with baby Joss and of course your kids…HUGS

  3. Ute says:

    Jennifer, Nick is learning from the greatest debaters history has to offer. He is facing off this morning against Abe Lincoln, and is going up against Benjamin Franklin tomorrow. Jesus is sitting in the front row, along with all the family members cheering him on as he gets one or two offer on Abe, He already had plenty of discussion with Ike about his strategy during WWII, questioning Roosevelt why he did not get into it sooner. So God has him covered.
    As for you and your task at hand. this is just another chapter in your book of life. do not worry about falling God is guiding you and He will make sure that you will not fall. and we will dance at joss wedding!

  4. Tiffany says:

    I’ve been thinking about and praying for you as you start this new phase of your journey…I would also be overwhelmed by all you are facing–taking care of Joss’ medical needs as well as returning to “normal” life with your boys, facing a new school year, all while still grieving over your loss of Nick. It’s a lot to take on but you are so strong and you can do this! You’ve got so many prayers going up on your behalf. I would love to help in any way I can. Especially if the help involves bringing coffee and visiting with you. :0)

  5. djgmky says:

    You all are in my prayers every day! Just always remember that while the instructions they gave you seem overwhelming, you are mommy! You will know if something isn’t right with Joss and you’ll know what to do. I always chose therapists for my twins based on how my babies responded to them. If Joss reacts great to a therapist then they will be able to accomplish a lot. There were some therapists that I didn’t care for personally, but if Brandon and Ashley liked them then I knew they would work well together. My only other advice is to keep a list of her meds and what time you give them-it saved my sanity when the twins were on so many meds! I’m with you in that while I know my Brandon is having a wonderful time in Heaven, it doesn’t make it any easier for those he left here. My sweet Ashley seems to be getting closer to her wish to go be with her twin brother in Heaven. I don’t know God’s plan or the timing, all I can do is love her and take the best care of her that I can while she’s here with me! Please know that even though you don’t know me, your story has truly touched me and I send you lots of hugs and prayers!!!

  6. Sandra Junkins Carpenter says:

    All I can say is you have the strength of no other and that is due to the love of God. My heart goes out to you when I read your blog as I have no clue how you are continuing but by the grace of God. I pray for you often and send a loving Godly hug to assist in your journey and know that you give me courage to face every day with the small issues I have to deal with. God Bless and keep you and your family!

  7. Trisha Garrison says:

    Jennifer, we don’t know each other but I’ve been following your story via Robin Green, a mutual friend of ours. I had no idea until last week, that you were not only Joscelyn’s mommy, but Nicholas as well. My son Nick also went wakeboarding and jet skiing on Lk. Joanna last summer. I remember the devastation I felt for you when I learned of the accident. I just kept thinking of what I would do if that would’ve been my Nick. I felt such heartache for you and compassion but yet didn’t even know you.
    For the last 3 and a half years I’ve been studying to be a registered nurse, my later in life career. I recently graduated and passed my state boards at age 52! I’ve been so compelled with Joscelyn’s journey as we studied briefly about some of the issues you’ve dealt with. I know we don’t know each other, but I live right off of Waycross Ave. If you need help with her care, I’d be glad to help in any way possible. I’d love to meet you, as I always enjoy getting to know fellow women who have a strong faith and love the Lord. Good luck to you and I’ll continue to pray for you and your family….

  8. Joanie Hoffman says:

    This is a wonderfully written piece with all kinds of emotions. You do such a fine job of expressing yourself and letting your readers feel what you feel. Thank you for that. I feel so fortunate to have met you and your family through the internet. I ❤ you guys, and Joscelyn is in prayers every night.

  9. Sue Squires says:

    Jennifer my friend I’m sitting here crying as a mother whose heart aches for you. There is no way any of us can comprehend what you’ve been through or what you’re going through unless we’ve been through the same. As they always say “we all have our cross to bear”, and we do. Each of us wonders at times “why”, and usually it’s not until many years later that we see why. Now that I’m older I can see things more clearly, and I can see how the Lord helped me through those really hard times. I know that His allowing me to go through them has made me who I am today, and has drawn me closer and closer to Him.

    I know that the Lord allowed these things to happen to you, because He knew you would speak up and that would help others. It doesn’t seem right that we have to go through something heartbreaking to help other people, but that seems to be the only way the Lord can show us what needs to be done. It doesn’t make it any easier, it doesn’t help us understand “why” at the time, and it doesn’t help US when we’re going through the pain and loss.

    It does help us appreciate things in life that most people take for granted, it does help us love others that most people would not love, and it does help us to be more understanding with most everything in life. It does help to know He has an amazing plan for your life, and that He will be with you every step of the way…..carrying you most of the time even though you don’t feel it.

    Just know that everyone that cares about you will always be praying for you and Michael, and that all of this has touched hearts that may not have ever been touched. Our time here on earth is so short, and He is more concerned with our eternity than our day to day living. I’m sure there are people all over the world that have heard the name of Jesus, and have seen the answered prayer for Joscelyn that may never have heard it if it wasn’t for you. This may not be comforting to you today, but one day it will be.

    Your family is truly loved by so many people….wow….I can’t even imagine how many! Just know your family has affected thousands of lives already, and probably changed those lives in ways you will never know.

    I love you, and God loves you so much more!!!♥ Sue

  10. Cynthia Greenly says:

    Jen: I am sitting here reading this and as I do, I ponder some questions as to why, too! How do we know that Nick is not sitting at the feet of the Greatest Teacher Ever learning more than he could possibly ever learn here on earth? How do we know there are not proms in Heaven? I mean, it sounds really impractical I know but we only know life as it goes on here. But on the other side, we know nothing except for those few who journeyed part way and then returned because it was not their time yet or some other bigger scheme in the whole universe.

    Why did this happen to a person as good as you? A person who examplifies motherhood, love and courage in my mind. Did God choose you to show the rest of us these examples and how to go on even with hurt and pain.

    Why Joss of all the children in the world? Because maybe he knew you of all mothers could handle it better than others???? That you would seek out the “best” for her in all aspects of her life. That you would be the Mom and Pringleman the Dad, that would have the love, patience and other virtues it will take to be able to handle with inbred know how to do the absolute best for her.

    I am sorry if my stupid questions mean nothing to anyone other than me. I know the pain school shopping is causing you thinking of Nick. But maybe you are supposed to be rejoicing instead for the blessings you have been given. I do not know if I am making any sense to you because my thoughts are going fast and furious through my mind as I ponder on these issues.

    Don’t cry inside for Nick or feel sad. He is at a place much better than us. He may already be in God’s ROTC. Rejoice he is there instead. Take all the positives that have happened in the past month with Joss and continue to write your blogs because you are taking one of the hardest cases and have the ability to reach out and help others through the same exact things your family went through.

    Now go with your 2 other sons and enjoy the new beginnings of their school year…the fresh starts. Know I have indeed said another prayer for the wonderful Dempsey Family and will continue. You just absolutely always amaze me, Girlfriend!

  11. Carolyn says:

    As I read this latest entry, my heart is filled with compassion and I am called once again to lift you to the only Source of comfort, hope and serenity. “Peace I leave with you, My peace I give unto you, not as the world gives, give I unto you. Let not your heart be troubled.” John 14:27

  12. Mariellen Barr in PA says:

    What is there to say… You’re artful way of blending the pain you feel over your son and caring for your baby daughter while living the life of a “normal” mom…so profound. I pray Joscelyn continues to improve and you don’t see even the tiniest sign of hydrocephalous. I pray she continues to be free of infection. I pray for your other 2 boys as they head back to school, that their teachers will love them and the kids they are friends with will help them grow. And I pray for you and your husband, that you can walk with the Lord together-espcially as you grieve the loss of your Nicholas.

  13. I am so in awe of you, what you’re doing and how you’re dealing with it all. Perhaps part of the reason you’re travelling this road has to do with just shining your light…your brave, beautiful, vulnerable light. You shine, others see your light, and are so inspired. That inspiration spreads far and wide and has great impact in the world. Blessings to you Joss and your whole family. Kate

  14. kim Willaby says:

    and we are praying you through it sweet mommy!

  15. Lisa Avallone-Groetzner says:

    Jennifer, I read your words and I totally relate to what you feel. Meet the Teacher last night was bittersweet, as I should have been buying back to school supplies for 3 and meeting teachers of 3. Dominic is in the same Dual Language Program as Vincent was, and now Dominic is going into the class that Vincent never made it to. I read your words about how to care for Joscelyn’s medical needs and I can relate in some way because as you know 2 of my children have the same condition which took Vincent from us. I try to educate myself as much as possible it what little information is out there, and sometimes I feel I know more through experience with my children, than some of the medical community do. I read your words and I feel like you are reading my thoughts, but I can’t seem to express them as eloquently as you. Some day maybe I will …. And some day we will both have all of our questions answered … if I can only be patient enough to wait until then …. Much love and blessings to you and your lovely family. xoxoxo

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