Corners of My House

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“In desperate hope I go and search for her in all the corners of my house. I find her not.
My house is small and what once has gone from it can never be regained. But infinite is thy mansion my Lord, and seeking her I have come to thy door.”
~Rabindranath Tagore

It is so obvious that death is wrong. Backwards. Simply not meant to be. The eternal in us cries out for continuity. Nathan and I sit and stare and talk of how surreal it all is. That she was here, so fully here…and now she’s gone. One might expect that things are getting a bit easier as we approach the five month mark, but those who have grieved deeply know that right about now the shock that sustained us the first three months or so has worn off and the reality and permanence of her absence feels like a new revelation. And the missing her, oh the missing her…

I remember the first night I had to spend away from her. She was 3 days post-brain surgery and I hadn’t slept for more than an hour or two in something like 72 hours. Things weren’t making sense and my nerves were shot, but how do you leave your sick child? I would never think of leaving her for the night with a small fever much less with surgery-induced tremors and a shunt pulling fluid off her brain. It was treacherous, leaving her that night to sleep at a hotel across the street. I could never have imagined that spending every night without her would become a reality.

At night, I close her bedroom door. I hate seeing inside that empty room at night. In the morning, the first thing I do when I get up is open her door. With the door closed in the morning it feels like she might still be in there asleep, so before those thoughts can come I open the door to make it real. She’s not there. She didn’t sleep in her bed. I start the day facing that awful truth each morning. But it’s necessary. I don’t know why.

I haven’t had the courage yet to do anything with her room. I let children play in there with her toys when we have guests and the boys will spend time in there every now and then, so I don’t feel the need to preserve it just as she left it. It’s more that I feel incapable of deciding what to do with everything. I can’t just load it all up and take it to Goodwill. Each item must be gone over and a decision made about what to do with it, and that is overwhelming because of the emotional toll. Her clothes will eventually be made into a quilt, but even that requires the hurdle of allowing them to be cut up. Moving forward is scary, and so is standing still. I’d love to know how others navigated this part of losing their child…

In other news, the big boys started soccer this week. They will be playing on YWAM’s private school team, the Christian Heritage Patriots and they are super excited. We had another batch of cold weather this week that has slowed down the garden prep, but we are hoping to get some seeds in the ground as soon as it warms up again. I know the next few days will be full of mixed emotions as we approach Phoebe’s “No Mo Chemo” day on March 1st. This time last year our lives were full of expectation and hope. Thank you for continuing to pray for and think of our family, and thank you to those who have sent cards or rememberance gifts, they bless us more than you know.

~Amey

About Amey Fair

I am Amey Fair, wife to Nathan, and home-educating Mom to Benjamin (9), Averic (7), Deacon (4) and Phoebe (2) . Phoebe was diagnosed with a rare childhood malignant brain cancer called Atypical Teratoid Rabdoid Tumor on January 1, 2012. She had complete resection surgery to remove the tumor on January 4th and began chemotherapy using the Dana Farber protocol on January 26th. A few weeks ago I was sleeping in the chair next to Phoebe's bed in the hospital when I heard her little voice drawing me out of sleep. It was 3 am and it took me a minute to shake off the slumber. "Mommy I'm a mean girl" I thought she said. "No Phoebe, you're a nice girl!" I replied. "No Mommy, I'm a MIRACLE!" Phoebe said. "I'm a MIRACLE, I'm a MIRACLE, I'm a MIRACLE!" she continued on. My tears welled up and spilled over as she made her declaration. Phoebe doesn't know the word "miracle" nor the concept, she's only 2. It was as if the Lord was speaking through her like a prophetic utterance. She fell right back to sleep and I sat there awake, lingering in the magical moment. Less than 40 children are diagnosed with Phoebe's type of cancer in the U.S. each year. This is why it's called "ATYPICAL Teratoid Rabdoid Tumor". So, I have titled this blog in honor of Phoebe, our "Atypical Miracle". We are YWAM'ers, serving in missions through Youth With A Mission since 1998. Before returning to the states 1 year ago, we lived near Guadalajara Mexico for 3 years. It was during our year of agricultural missions training in Waco, TX that Phoebe began exhibiting symptoms from the pressure of the tumor on her brain. Weight loss, lethargy, extreme thirst and vomiting were her symptoms. We have been granted sabbatical during this time to focus on Phoebe's intensive chemotherapy treatment and are renting a home in Dallas near the Children's hospital where Phoebe is being treated. Like the woman who touched the hem of Jesus' robe in Luke chapter 8, we cling to Him, knowing that He is Phoebe's healer. If we can just touch Him, be near Him, bring Phoebe to Him each day, we have hope. He is our hope. Thank you for coming along on this journey with our family. It's therapeutic for me to write it all out, and in so doing, I hope God will use it for His glory.

27 responses »

  1. My heart aches for your grief. I so wish I had some eloquent words that would magically take your pain away. I pray for you daily, friend. And I love you always.

  2. My 19 year old has been gone for 18 years now… almost longer than he was on this Earth.. I still miss him…. My 30 year old father of 3 has been gone for 10 years now… I never dreamed I would lose one, much less both of them! They have always belonged to GOD, and he took them back… the loneliness is still there.. always will be.. just as it is when we lose others. We have to move forward…and do things that honor their memory. Perhaps donating some of Phoebe’s toys to a hospital or other organization that helps children would be something you would like to do. A decision doesn’t have to be made right now. I have a friend that her husband’s room and belongings are still right where he left them… almost 2 years ago. We each deal in our own way. God be with all of you… I miss Phoebe, too…and I never have the honor of “meeting her”. She is the happiest, prettiest, and sweetest angel in Heaven!

  3. I don’t see anything wrong with keeping her room. When – if – it’s time to do something different, your heart will know. Do not let people rush you or, may God have mercy on them, shame you into doing something you’re not ready to do. They do not breathe the air you breathe. I have a wonderful friend whose 17 year old daughter died – about 20 years ago. Her room is not a shrine, but neither has her mother felt the need to get rid of the things she loved.

    Another wonderful friend, who also lost a child, says that sometimes faith is just making the next cup of tea.

    Love you.

  4. Dear Amey, I’m so sorry. Loss is so hard. I’ve never lost a child but I’ve lost a mom, a dad, an older sister, a best friend of 35 years & countless others. You just take one day at a time & let God love on you. Only with the passing of my best friend, did I lean on God. Unfortunately I didn’t know Him most of my life. But I surely know Him now & I know where my Jane is & I can’t wait to see her again. I believe I will see my parents & sister too. At least I certainly hope so. Go slow sweetheart. Take your time. When it’s time to go through, sort, get rid of, cut up or what ever, you will know it & it won’t be hard. It will bring you joy & peace. I will be praying still for your family. Love & blessings, Elaine

  5. I don’t have any words of wisdom. God promises to fill our losses/sadness with Him. With such pain and loss, God must be SO BIG in you and your family’s heart! Thanks be to our God who IS sufficient

  6. Slow down dear grieving heart! You torment yourself with more pain than you must already bear. Nothing is worse than the departure of one you love so very much. Nurse your heart with her memories and hold on to every single thing of hers that brings you comfort. You have a long road to travel and you must pace yourself. The first year, after such a traumatic event is always filled with, “This time last year…” Even after the third year, “it feels like just yesterday” and that will be the phase you catch yourself saying over and over again.

    God metes out the grief and you swallow that bitter cup and know He has taken care of everything: past, present, and future eternal! Praise God we do not grieve as the ones who have no hope. Phoebe was picked for a special place in the Master’s bouquet. She is there and happy and whole. She won’t get hurt or her heart broken or tempted into the sins of this sick and dying world. She is there and she is happy and we will see her soon.

    Never do anything until you are sure… This is your trial… There is no right or wrong way to grieve. Little by little as you feel lead, you can make decisions. Once throw away or cut up, there is no going back. Box it up a few pieces at a time. Pull it back out. Set up a shrine- what does that hurt, really? Nothing will make the pain greater, last longer, drive you insane. JUST DO WHAT FEELS BEST TO YOU AND YOUR HEART and Nathan and the boys. It is all right to find relief anyway you can. No pressure, breathe, relax and take your sweet time. It will all wait for you, I promise.

    Bless your broken heart, Amy. Thank you for sharing and pour all you can into your family. Every day ask yourself, “did I give all I had to them today as BEST I could?” Don’t take them for granted so you ever feel regret. Satan uses that trick a lot.

    In God’s Grace,
    LaNell Rogers
    Jacksonville

  7. You are so wise to seek the counsel of others who have been there and not clam up. I’m sure the emotions are so overwhelming at times that there are no words, but when the words come, keep writing! God has trusted you with a lot. I pray that you feel his arms wrapped around you all!

  8. Lifting u up. Praying for peace and comfort. You have to grieve your own way and in your own time. We love you all. Well continue to pray for you.

  9. Oh Amey, you keep Phoebe’s room as is for as long as you need. You will know when it is time to deal with it, there is no rush. Praying for you dear one. I too, miss Phoebe even though I have never met her or you.

    Blessings.

  10. I am just so sorry about your beautiful little Phoebe. And what a perfect quote. I know what I have gone through is nowhere near as painful as what you are experiencing now, but my only baby girl was stillborn last February. You are right about the shock wearing off and the pain setting in. Unfortunately is seems to happen right when people start to think that you might be feeling a “little better.” I have all of my baby Lucy’s things boxed up and out of sight. I know we had much less of Lucy’s than you have of Phoebe’s but it helped for me to put it out of sight at first. Slowly as I have healed a little, I have put out more of her things and they bring joy now with the grief. One day I might have the strength to go through all of her cute little things but not now. I think, like others have suggested, it is a good idea to wait. There is no rush, there is no deadline, and there is no pressure to go through each item and make a decision now.

    Thank you so much for sharing yourself with us. Your blog always encourages me and echoes my own heart’s grief. And can I say, over a year after losing my daughter I am FINALLY starting to see a little healing and it is such a relief. One day you WILL feel it too. I’m praying for you and your family.

  11. Amey, I so get it! And I can share this with you with certainty:

    The first year is always the “numbest”… you are beginning a journey that you never asked to take. None of us grieving mothers did! We find our lives in that early stage of grief to be a repetitive state of hearing ourselves say “yet another day I survived”…but then another day always comes after that and with it the bitter-sweet taste of grief. I can tell you that the burden does lighten…. eventually, and sadly; you will always be on this journey but you will never be alone.

    The world around us moves along seeming to make sense to everyone else…but our worlds have not been making much sense at all… yet, one day something miraculous will happen in your grief journey and something inside of you begins to stir and awaken and you start to face and feel things about your life, your grief, those surrounding you and even begin to hear God more clearer than ever before… and you know without a doubt how truly blessed to have been chosen the gift of life that God gave you and that Phoebe’s life, although short in earth years, makes a difference every single day…and not only in your life but in that of others. I am so sorry for your loss, for my loss, for any mother’s (the families) loss… and I will continue to pray for you and your family,

    Just remember that for whatever period of time that goes by… its that much closer we are to being reunited with them again.

    Sending you a huge hug from one grieving heart to another!
    Blessings, Autumn
    http://www.aholeinmyheart.com

  12. My child died six weeks ago – I can relate to everything you say. I love this quote –
    “Our faith keeps us from being swallowed by despair.
    But I don’t think it makes our loss hurt any less.”
    Nancy Guthrie

  13. I think you are putting too much pressure on yourself to do anything with her room just yet. It is still so brand new and you are right…you are in the thick of when the grieving process becomes such a hard reality. It took my mom 7 years to do anything with my sister’s room. She just did it when it felt right…and prior to that it just didn’t. It’s different for everyone….just do it when it doesn’t feel so sharp and new and painful.

  14. Your only job right now is to breathe. Sometimes that does not feel as automatic as others, I know. We keep our daughter’s little butterfly table lamp on – always. Someone told us not to, but you understand. You will clear out the room when you are ready. To rush it will make things worse. Continuing my prayers for you all.

  15. Amey and Nathan,

    Don’t be in a rush to clean out her room or put her things away, just wait and in time you will know what to do. Trying to decide on it now just leads to stress…focus on your everyday life and before you know it, you’ll know what to do. It might hurt to see her things out and to realize she is not there to use them, but it will help in the long run with your healing process. Years ago when my one year old nephew passed, my sister gave away all of his belongings and all we had was a pair of shoes and a snow suit, now she looks back and wishes she had kept more of his things to remember him by. I remember the days and months following his death, we would smell his little shoes and snow suit trying to catch his scent. Being able to smell him always made things a little better for a while. And keep the pictures… I love seeing pictures of Phoebe. I don’t know if you went through the part where you don’t want to see pictures, but when my brother passed 4 years ago while serving our country in Kosovo, I had a hard time looking at pictures of him, if I saw a picture of him I would turn away, probably because it made everything more real…that he was dead and not in Kosovo. To deal with this I put more of his pictures out and put one on my desk at work, so that I would have to look at it and it really helped. I guess this is all part of the healing process, but just take your time, don’t make any hasty decisions and in the end you’ll know what to do. I pray for Phoebe everyday and for you, Nathan, and your family, and will continue to for the rest of my life. You all have touched my heart so deeply. God bless you. Love always.

  16. Dear sister,
    May God sustain and comfort you, I pray you feel His arms around you Psalms 91. I cannot even imagine your pain, as others have said how we wish we could say or do something to remove it, but I pray Our Father will wipe your tears. May Him also give you wisdom to what to do with precious Phoebe’s things, but take your time. Abrazos y mucho amor para ustedes!

  17. Your thoughts show us your courage and grace, and that is an incredible blessing for us. May comfort and peace continue to grow deep roots in your journey. Prayers for all of y’all. Love and hugs too.

  18. I think of you all and Phoebe every day but today more than usual. I’m still walking with you all in prayer. Thank you, as always, for continuing to share your journey and Phoebe with us.

  19. Amey – My husband & I are friends with Steve/Karen Lawson. Karen directed me to your blog. We are so sorry for you loss. We are the proud parents of Levi (21), Caleb (1) (with Jesus since 1995), Noah (17), Esther Grace (1 hr.) (with Jesus since 2001) and Micah (5 mths.) (with Jesus since 2002). Grief is a process and everyone processes differently. Lee & I had to communicate with each other how we were processing. God seemed to be gracious that one of us was always a little stronger than the other to help the one suffering the most. In the beginning, it seemed to just be a milestone to get thru a day, week, month and be able to say, “we’ve made it one week, one month, etc. His grace will carry us thru.” Lean heavily on His amazing grace! It truly is for You and your family. Don’t freak out when others say they couldn’t carry on with all that you’ve been through. It is NOT their situation and God has NOT given them grace for your situation which He has allowed in your life. Set small goals of finding joy in things, laughter and cleaning out Phoebe’s things BUT don’t do it before you are ready. When our sweet Caleb went home to be with Jesus, I had a room of medical equipment, drugs, clothes, etc. I told my husband I was going to just enjoy the summer with Levi, make new memories and then deal with it come the fall. Making a goal helped us enjoy the summer and put time between Caleb’s death and going through his things and helped me think of who might benefit from them. He had about 14 cousins so they each got one of his stuffed animals. I saved one box of special blankets, clothes and toys and gave the rest away. With each child that we have lost, we have handled things differently based on our situation at the time. One book that has been a blessing to us has been written by a friend of ours (another pastor’s wife) called, Mommy, Please don’t cry by Linda DeYmaz. It only takes 5 minutes to read but I read it to myself and our boys (when they were little) several times and it always has brought happy tears as I know where our little ones are; happy and whole and have completed their assignment on this earth. I think, we are going to be shocked at how many babies and children there are in heaven. I can’t wait! Heaven is very exciting for me to get to but I will serve here until that time.
    It sounds like you are in a great community where you can be real and transparent and that is wonderful. Life is full of transitions especially with growing children, so standing still is not going to be an option for you all but please allow to set aside time to communicate with one another how you are doing and what steps you need to do next. You and your family will survive as you lean on God’s Grace! I’ve lots more to share but if you need anything, please email.
    Blessings, Lee & Ruth Epstein

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