February 27, 2019 Grief

There’s a small oak tree visible from my bedroom window. The leaves are wilted and brown from the cool winter weather; acorns scatter the ground beneath the tree.

When we first moved to Orange Beach, I would lay in bed each morning and stare up at the beauty of this tree, watching as its limbs waived in the warm gulf breeze. Chris had not yet moved yet so it was just Annadelle and I sleeping in the same bed, snuggling with a few eskimo kisses before getting up to prepare for school.

This morning as I woke up and stared at that tree, a tear faded down my cheek and onto my pillow. I looked over at Annadelle, still asleep in our bed and snoozing like it wasn’t already 8:30am. Chris had gotten up early to go to Lowe’s so once again it was just me and Annadelle. When she woke up, she asked me, “Can you turn me over?”

And that is the difference from a memory I never knew would be so significant.

We’ve been out of the hospital for a few days now. We were finally released last Saturday as Annadelle’s SATs went back up (and stayed up) to her normal level. We came home on antibiotics that she is still taking for another day.

Since we left the hospital, we haven’t done much at all. Chris has spent the last few days tearing down a part of our fence to repair it, as months of overgrowth took over and ruined an already fragile fence. Annadelle and I have spent most of each day watching TV, taking a very small amount of time to do therapy. She fights me when it comes time to do it and whines a lot.

To be frank with you, I’m engulfed in emotion, so much so that my desire to do much of anything has faded away like the tear from my pillow. I say “I’m overwhelmed” because I don’t know how else to say I am drowning in worry, uncertainty, and hopelessness. It feels like our lives have stopped while everyone else has moved on, like we’re on a treadmill while our friends are walking on a path. I don’t know if Annadelle will ever walk again. The not knowing is killing me inside, ripping away what tiny amount of joy I have.

And of course I feel guilty about that. I should have joy, right? Of course I should. I should have joy in Christ, joy in knowing Annadelle is here with me, joy in hope for the future. But to be honest, the joy is overshadowed by the burden and responsibility I now have, and I’m terrified I will let her down.

Tonight my friend Frances called me. Frances’ son, Matthew, also has AFM. We spent a lot of time together as roommates in Baltimore and I can honestly say I consider her family now. She has probably seen or heard me cry more than any of my other friends I have ever had and she’s pretty good at making me feel better.

I explained to her that now that we’re home, the reality of how life is now is setting in. I am exhausted from doing every little thing to keep Annadelle occupied or working on therapy or eating or bathing or literally anything. Frances knows exactly how I feel, as she is having to do the same with Matthew.

We talked at length about how we feel dealing with AFM. It was such a relief to know she feels as lonely as I do, despite us both being surrounded by friends and family. When we first went in the hospital, my phone was blowing up with people checking on us or sending us well wishes. I don’t guess I appreciated that as much as I should have at the time because of how unstable Annadelle was. I was preoccupied with every single aspect of her care that I didn’t take the time to really listen to many people calling or messaging. Now that it has stopped, I wish I would have waited to open the letters or texts. I know that sounds strange, but it feels like everyone else’s lives have gone back to normal as we are here still dealing with trauma that seems never-ending.

I know this post seems like a big ol’ pity party, and in essence it really is. I am trying to be painfully honest so that when I’m passed this feeling I can look back and laugh at the worries I have now. Talking to Frances made me realize I wasn’t the only person feeling like this. She helped me to realize how far Annadelle has come and how far she will go with continued work. Frances basically gave me a slap across the face and told me to get my ass back in gear, something I didn’t even know I needed.

Anyway, would you pray for us? I would ask that you pray specifically that we see improvements in Annadelle’s legs so that she may walk. I would give anything for her to walk again.

Thanks for everything, and I promise my next post to be more uplifting.

12 Comments

    1. Thank you, Jane. We truly believe in the power of prayer, and we know that Mark 11:24 tells us that we we ask for in prayer we will receive. We have been praying fervently for complete healing!

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  1. My prayers are with you for recovery for Annadelle. I understand how you feel since I have felt that way myself. My son does not have AFM, but he does have CP. When he was younger & going through all his surgeries I used to wonder if I would ever make it through that. Steven is able to walk without help, but he does have difficulty. He has mind of 8-10 yr old & I still have to do a lot of things for him, such as help with bath. Neeli, I’m not telling you this so you will feel sorry for me. I’m telling you this to let you know there is hope. My son will be 45 in May & has come a long way. Concentrate on the good things, such as the improvements Annadelle has made, the faith that you have, good family & friends that support you, some you don’t even know about. The outcome may not be what you want, but it will be what God believes is best. Sometimes,we get so caught up in what we want or what was, that we forget about the fact that God has a plan for us that we know nothing about. God can take what seems impossible & use it for HIS good. We can learn a lot from taking care of special needs children. God will never put more on us than we can bear, even though it seems that way sometimes. Sometimes, it’s His way of saying take time to know me & discover what I can do. My 4 & 5 yr old granddaughters pray for Annadelle & even ask about her. You will learn from this experience.Take time for yourself & then time for you & Chris. Never be afraid to ask for help. That was one of my problems for a while, thought nobody could take care of him but me, but finally realized that we all need help.

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    1. Thank you for your words of encouragement. I had no idea your son has CP. I know now that AFM kiddos and CP kiddos experience many of the same struggles, so my heart goes out to you, as well.

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  2. Neeli, don’t apologize for being human. My heart goes out to you, Annadelle and Chris. The struggle is real. Autism takes a similar toll on parents and it is completely normal to feel the way you do. Chin up – tomorrow is a new day and you are a heck of a writer!

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  3. Good morning my dear sister and friend 😊.

    Listen to the song by We are Messengers “It’s Okay to Not be Okay”.

    It touches my heart as we go through the trials of life and try to make sense of every overwhelming thing coming at us as things seem like they are spiraling out of control to know that GOD’s work in us and through us is not complete because we are still here.

    We’ve not been designed to take it all on our selves as that was what CHRIST did for us, took it ALL on HIMSELF so that we could take upon HIS yoke which HE states is light.

    My prayer for the Faulkner Family is to have a renewed relationship with CHRIST as HE’s making all things new 😇.

    I pray that you discover the Eye of the Storm where grace and peace abounds 💞🤗. Let HIM carry you when things get tough. That’s when we only see one set of footprints in the sand 😉.

    Neeli, thank you for every transparent thought you’ve shared as this will all be the making of a beautiful testimony once this trial is over and you begin to gain understanding as to what GOD intends on doing in you guys and through you guys.

    I know from personal experience that you and your family light up a room where ever you are because GOD created you to be light and you guys certainly are 😊

    You have shared so much love with the new adopted AFM family 💞. You are a blessing to so many and Annadelle couldn’t have better parents 😇🤗.

    I hope and pray that GOD will renew your strength as you trust HIM in all things.

    We are so incredibly proud of you and you’re daily in our thoughts and prayers which I learned sustains us during the difficult times 😇

    Sending our love from the PNW 🤗💞

    GOD Bless You and Your Beautiful Family ❣️
    Chris & Shannon

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    1. You always have such a good way of putting God’s word into perspective. Thank you so much for your words of encouragement and your continued prayers for our family. You are truly a friend to be treasured!

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  4. I HAVE been praying for God to give you the peace you need facing this. It’s a hard realization that when something tragic happens to you or your family that life goes on for everyone else. I know you’re tired, worried and most of all – looking back. Look ahead baby and stay strong in your faith. God WILL let Annadelle walk again. Wishing I could make it better for you. Grief is a hard emotion to carry by yourself. I love you!

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  5. I’m praying for you. I have felt so many of the things you shared at some point in my life. Sometimes it feels impossible to be full of joy. Sometimes we’re doing good just to hang on when it feels like we’re at the end of our rope. I would just encourage you to remember that God knows the heart. He sees you trying and he knows how you wish you felt. It’s through our weakness he gets the most glory though. Jesus taught us in Matthew 17 that even faith as small as a mustard seed can move mountains. In times when I felt to exhausted by life to even pray I would just say Jesus! There is power in his name! I can’t imagine what you are going through. Keep hanging on to the Lord! Y’all are doing a great job! When it’s all to overwhelming and the road seems to hard give it try! Just say Jesus and he’ll be there to lift some of the burden you’re carrying. Love and Prayers from Gadsden, AL

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  6. Neeli,
    I’m so sorry that all of this is going on … I wish there was a way for me to take away this pain. But I can’t , you are a strong woman and you and your family have been through so much. Please know that while we don’t talk much you are thought of .. I pray that God answers your prayers. That you’ll find comfort in knowing that you and your family are loved. If you need anything that I can help with please don’t hesitate to call me.

    With love
    Kat

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