Wednesday, 29 May 2013

New Normal

What does normal life for us even look like?  We are not actually sure and to be honest, is normal possible after planning your own child's funeral?  We are in Radium, B.C., with my family and I find parts of myself are still here, but that I struggle to find the 'old Amy' from before Hope joined our family.  I find myself laying on the couch and lazily watching the rest of my family doing things for myself or for Shawn and Sadie.  I struggle to get up and do things at times and find myself tired.  In the mornings Shawn and I usually snuggle with Sadie for a bit, but then send her to my parents or my sister to be taken care of while we sleep in.  I feel badly at times, but also realize that we need the sleep right now and we should take advantage of having them all here.

In the midst of our sorrow and the pain of losing Hope, we also feel freedom.  We have been in hospital or isolated at home for the last 13 months of our lives too.  It feels weird to wake up late each morning and not have somewhere to be.  It feels wrong to not rush to the hospital.  It feels incredible to have Sadie with us all day and not send her off to be raised by someone else.  I have spent more time with Shawn in the last week than I have in 13 months.  In some ways we are a family again, yet our family is smaller than it was ever meant to be.

I find it too difficult to pick up my nephew.  He is so much younger than Hope, but feels the same size in my arms and makes my heart ache too deeply.  I hear myself refer to 'our girls' before I realize we only have one now.  I say 'my kids' and realize it is no longer a plural statement.  I don't know if these things will ever get easier.

On Tuesday before we left for Radium, Shawn and I went to the funeral home and picked up Hope's ashes.  For the first time since August, we brought Hope into our home to stay.  We had talked about spreading her ashes in different places and lots of other beautiful ideas.  Now that Hope is back with us, we do not feel we are ready to let her go.  One day we hope to spread her ashes somewhere beautiful, but for now we want to keep her with us.  We may become that creepy family that carries her around for years, we don't care.

On our way out of the city, I managed to walk into the Children's Hospital to drop something off for the nurses on Hope's old unit.  It was painful and I know I need more time before I can go back with Sadie to visit all of the amazing people there.  It was good for me to get that "first time back" out of the way and to know that next time it won't be the first and I can go in knowing that it's ok.

We continue to feel so loved by all of those around us and are so blessed by our community.  I often wish Ellen or Oprah were personal friends of mine so I could have them do wonderful things for all of the people that have selflessly served our family.  I dread the day Shawn returns to work and yet I know we need to have a more normal routine.  Until then, I cherish this time with my family and daily miss the feeling of Hope cuddled up in my arms and the sound of her voice when I walked into her room each morning.  I miss her big blue eyes, I miss everything about her.

34 comments:

  1. I think that by acknowledging & allowing yourselves to miss Hope you are starting the healing process (in as much as you can 'heal' from something like this). I believe there will be good days & bad & you just have to find the best way to navigate accordingly. I am glad you are able to share this time with your family, and don't feel guilty for anything you have to do to take care of yourselves right now.

    I hope you can find some comfort in knowing that so many people are still praying for you all.

    Thank you for taking the time to share your feelings, it is very courageous.

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  2. Amy,

    My family continues to pray for you. I know my Mom would always say to people that she has two daughters, one on earth, sometimes she would be able to say and one in heaven and other days she couldn't.

    Even after 20 years, sometimes she can talk of Quanah with smiles and other days she just can't do it.

    I'm not sure what else to say now, I just called to let you know that you're not alone, nor will you ever be. I truly feel and believe you, Hope and your family have done more for this community then you will ever know. I don't think you will ever need to thank us as much as you feel you do.

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  3. I just want to "like" the above two comments!

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  4. I'm laying in bed with my 14 month old daughter asleep beside me and can't help think how unfair this world this can be. With that said, I'm thankful for Hope, I'm thankful for her story as moments I may of taken for granted are now acknowledge, remembered, cherished. Life is so busy, time goes by do quickly, Hope taught me to slow down and enjoy my family. Just to take the simple pleasures and enjoy them. 13 month old Hope, what an impact she's left in my heart and so many others.
    Amy, I don't think you go back to the before Hope version. I don't think you'd want too. Her passing is devasting to those of us who never even met her, but her life enriched us all. Your little girl did that. I can't even begin to imagine your pain, but I'm so proud to be a mom alongside you. The way you advocated, loved on and supported Hope all the while writing your heart out for all of us and raising awareness to the very real need of organ donation is so deeply inspiring to me. That pain I think it's part of the new you, I think it will numb a bit, but it will always remind you of the love and bond you & Hope have. I won't say had, as I believe it will carry on throughout your life here on earth and and in to eternity with your littlest love waiting for you there.

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    Replies
    1. Beautifully written and so true for so many of us!

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  5. that was nicely said-- Amean

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  6. Amy,

    Still continuing to pray for you and your family (and Hope) daily. (I still include her in my prayers and always will).

    You DO still have 2 daughters, and you are still a mom to TWO beautiful girls. One walks beside you, and one walks within you -in your heart, your mind, and your soul.

    I agree with the above sentiments - Hope enriched my life in so many ways and I mean it from the bottom of my soul when I say I will never forget her. Hope has brought me so much hope.

    Sarah

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  7. a lot of wisdom in the comments above mine. I am thankful that your family is around you to help during this time. Some day you will smile again but that doesn't mean Hope will be far from your memory or thoughts. There is no time table for grief...one day at time..

    2 Corinthians 12:9
    But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.

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  8. Our family is very sad of the passing of Hope. We have and will go on with our prayers for all of you. It's funny how a child always fines that place in your heart, even if they are not in your daily life. Our church family has been walking with you & your family since starting this journey. Hope will always have a Special place in my <3 and will forever be with us all. Your family is also apart of us. Stay strong for a families love is forever as is a child's love!

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  9. Amy,

    Don't worry about tomorrow. Deal with your sorrow today. One step at a time. Just get up and put one foot in front of the other.

    God loves you so much and you know that. He will figure it all out for you.

    Contining to pray for you all. Love and Hugs. Pat

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  10. My heart is breaking for you, Amy. This week marks one year since losing our son to HLHS and I can tell you that while the loss and the circumstance and the resulting pain doesn't get "better," the shock and all-consuming emotions do ease. You will always miss Hope and you will always have every right to how you feel. I know that I am completely changed by our loss. Somedays, I don't think I'd even recognize who I was before, what I cared about, etc. But I think that is a testament to our children and their powerful impact on us. Embrace the change as much as you can. Be kind to yourself. Try not to expect too much too soon and let others know what helps and doesn't help you. So many people are here for you, but I know at times like this, we can feel so alone in our pain. If you ever need someone to talk to, please know I'm here.

    xoxo

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  11. Ah-there is the crux of it. Can there ever be a 'normal' after being at your own child's funeral. Strangely, and slowly, it comes. I am there...living my 'new normal' daily. Some days with joy and many with tears but we are surviving. We are here. And we have our Eva's ashes on a bookshelf in a pewter rocking horse that should have been a piggy bank for a living girl not an urn for a dead one. But there you go, our new normal involves ashes on our bookshelf. Sometimes I wished we had buried her so I could have somewhere to 'go' to be with her but mostly I'm 'happy' she's home with us even though I know she's really home in heaven. But, there is something about having what I can have of her here with me. It's in my will that when I die she will be buried with me and then she will share a headstone with me.
    Amy, I'm praying for a peace that surpasses all understanding for you and your family as I prayed it for mine in our early days of grief, and still do when it just gets to be too much.

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  12. There is a relentlessness about the grief process that is really awful - Please keep sharing this for the sake of all those who can't talk about their experience of it. Thank you.

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  13. Still praying for you all in Ontario but for different reasons now. The healing process is painfully slow. There truly is no 'quick fix' for it. Just when one thinks the wound has grown smaller, an issue comes along that picks off the scab. No one can make you heal more quickly or more fully. I know we all wish the pain would subside for you. And each of us out her carries a pain in our heart for you, Shawn, Sadie and your family. Thank you for the update. I wonder daily how you are doing. Sending prayers and healing thoughts.

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  14. I am standing here, reading this, with tears in my eyes. I cannot begin to imagine your pain. I have friends who have lost a child, and they do carry on, find a new "normal" but they are never the same. A part of them is always missing. I wish I could do more than pray for peace for your aching hearts. I wish I could whisk away the pain and let you feel only peace, peace in the knowledge that you will be together with Hope again one day. But the horrendous reality is that she is not here with you right now. And that breaks my heart. I am a friend of a friend, and I have been praying for Hope for many months now. When I opened this site the day after Hope passed away, I lost my breath and just kept saying no over and over. I just couldn't believe it. I truly believed that our prayers of healing for Hope would be answered. I finally realized, after feeling numb for quite a while, that she is healed. And all of us here on earth who have fallen so deeply in love with her need to be brave and let her go free into her Savior's arms. And then I imagine the pure joy she is experiencing now. Close your eyes and ask Jesus to give you a glimpse of what she is experiencing. Just bask in the beauty of His love. I know her laughter and smile are lighting up Heaven. I also know that her short life here on earth brought so many people to the Lord; He will never waste one of your (or her) tears or one ounce of your (or her) pain. May God's love and peace surround you during this time. I was able to watch Hope's memorial service and was moved by the beauty. You are amazing, Amy. Don't ever forget that. Let others take care of you now, it'll help them as much as it helps you. Slowly return to life when you feel ready, not a moment sooner. I hope when you close your eyes, you can feel all of our prayers for you and your family. Let your closest friends and those of us who care so deeply for you carry some of your pain. It's too much for one person to bear. I heard the song "Praise You in This Storm" today and couldn't help but think of you the whole time I listened to it. From one mom to another, I can't tell you how sorry I am. God bless you, Sweetheart. One day, one step, one breath at a time. <3 ~Eileen from the US

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  15. Hi Amy. Thanks again for giving us the gift of your honest emotions about what it is like to be in your place right now. It is painful to read and brings me to tears but I keep checking the blog hoping you are there. I am so concerned about you and Shawn and Sadie.
    Today I was planting my flowers like I do every year, but I thought of you and prayed for you as I did it. I even bought a few cherry tomato plants called "sweet baby girl" in memory of Hope. I find planting flowers very soothing and will often play
    my worship music as I loose myself in planting something that will bring new life and beauty as I watch them grow. I wondered if you might find some healing in planting a special little flower garden for Hope filled with perennials that will come back each year.
    I love you, Amy. I don't know you but I feel like I do.
    Fay

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  16. Thanks for sharing your journey of hope with us! Hope was such a beautiful, tiny bundle of JOY that she will always be remembered by people all around the world.
    She has made an impact on us all, by your daily posts on here. We have been allowed to walk the journey with you, and to go through all the ups and downs, yet, have never met.
    Thanks again for sharing your 'raw' life with us.
    Keep her ashes with you as long as you need too, when I read that part, I thought of what a great thing to think of when you look at the Jar/Bottle.
    Yes Hope is home now with you, and yet with the Lord. How awesome to know that she is in no more pain, or discomfort. She has met lots of friends in Heaven, and will continue to way to see you guys when you someday go to be with your Lord.
    What a journey you have been on....your faith has been tested, and I'm sure that you have pasted with flying colours.
    May God be near you, as you begin your new normal. Take your time, there is no right or wrong way to mourn, so do what you need to do. God understands you heart, and mind. He loves you, Shawn, and Sadie! HE will sustain you, comfort you, give you joy in the midst of all of this, and will give you hope again to build a future.
    Praying for your brokenness, and praying that God will sustain you all at this time.
    with love from ON.

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  17. Amy, I continue to uphold you and your family in prayer. I can tell from your posts that you are a “do-er”. But I think you and Shawn are right to allow others to minister to you for a time while you rest up and begin to heal.

    I know now is not the time for what I am about to suggest....but at some future time you & Shawn may want to consider a Christian healing retreat. The first link is to one Christian ministry that offers these and the second link is the Christian retreat centre near Calgary where they are usually held.

    http://www.ellelministries.ca/index.php/227

    http://www.entheos.ca/

    Shalom.

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  18. My mind can't even imagine the pain you went through while picking up Hope's ashes!

    To all who mourn in Israel, HE WILL GIVE A CROWN OF BEAUTY FOR ASHES, a joyous blessing instead of mourning, festive praise instead of despair. In their righteousness, they will be like great oaks that the LORD has planted for his own glory. Isaiah 61:3

    Sending you so much love from Ontario, Kim

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  19. For Those wanting to help the Koslowski family the link for the fund is http://www.gofundme.com/hopekoslowski or to take them a meal http://www.takethemameal.com/meals.php?t=HJCF8104

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  20. My thoughts & prayers are with you today & always . May God be with you forever.

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  21. Praying for you and your family. Praying that you experience God's closeness during this difficult time. Thank you for sharing your beautiful daughter with us. Hope has had such a major impact for God's kingdom. Looking forward to meeting this amazing little girl in heaven.

    Amy, your faith is such an inspiration. I know God has huge treasures stored up for you.

    Love in Christ,

    Jenn


    I heard this song by Casting Crown's and couldn't help but think of you. Praise you in this Storm.


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  22. Continuing to pray for you and your family during this very difficult time. As others have already said... do allow others to minister to you now... rest, and allow yourselves to grieve in your own unique ways.

    Everything is still very fresh... once you feel you are able, you may want to consider joining GriefShare, a christian grief recovery support group that is hosted by various churches throughout Canada, including in Calgary. The leaders (on videotape) lost two babies themselves... you will be able to relate to them and identify with their grief experiences and processes. I found that the support I received from my group, in addition to the videotaped messages, was a tremendous asset as I worked through my grief of losing a baby... eventually the emotions aren`t all-consuming anymore, but there remains an ache in my heart.

    http://www.griefshare.org/

    locations of churches that host these grief recovery groups are here:

    http://www.griefshare.org/findagroup/search

    Your sister in Christ,
    Mariette

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  23. Our thoughts and prayers are with you.

    As a mother of a child with a rare heart condition I can relate to a lot of what your family has gone through. The confusion, the set backs, the triumphs, the victories and the love and passion for someone so amazing.

    You and your family are experiencing the greatest loss of all, and it does numb you. It will get better. You talk about trying to find 'old Amy' and while pieces are still there, you are a changed person. Hope's life brought growth, perspective and love to your family and so many others and it is not lost on anyone. The experiences that you and your family shared with her is why you should look at yourself as 'new Amy' full of so many memories and a person who no longer takes the things that so many people typically do for granted.

    Take care of yourself and continue to let your family help as well, because for months now you have selflessly and lovingly put yourself last.

    May God bless you and your family peace, love, strength and healing. And may you find solace in knowing that God has adopted Hope as his own until you and your husband are with her again.

    Much Love.

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  24. Amy, just caught up with ur blogs. I can't imagine wat kind of a Mother's pain or a father's pain u two r experiencing? There r no words that can truly describe the excrucsiating pains of losing a child. like the world says, it's not right for parents to out live their kids. But sadly that is not our plan of course & we can hardly believe it is God's plan for those that lost children . I guess the upside of this very sad story is ur Hope is now able to help her grieving parents out by praying for you & sending u her love as much as u need to feel her love. & kno that the Lord Jesus is weeping right beside u & is also praying for you all with Hope. my late mother & I were very close wen she left me four long & short yrs ago. Often times I wish I could visit with her one more time & chat like we used to at her kitchen table over a cup of tea. one day I was crying cuz I couldn't remember her voice. then one night I dreamt of her & I remembered her voice again. My late mother was interned in Terrace along side with her husband, dad. I live in Smithers. she too was cremated. wen I need to talk with her I used to think I had to go all the way to Terrace. But now I kno she be in Heaven with Jesus. I just ask Jesus to pass this message to my mom, please & thank you! Her spirit lives on in Heaven, it's just her ashes in Terrace. I don't mean it's just her ashes wat I m trying to say is her try /true self lives on inside of me now via memories . It's not the same as having her sit in front of me enjoying a cup of tea with her. some day we will re-unite, sometimes it can't b soon enuf! My mom became a Christian on her death bed. I am very happy to hear that u & hubby & daughter heading to Mauii. They say a change is as good as a rest. Kno that Hope & her Lord Jesus is praying for safe travels for u three. well my iPhone battery is soon to shut off so I better close. from ur fren & sister in Christ,
    Barb from Northern BC

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  25. Just wanted to add a thought. A few years ago our family went through something fairly traumatic also, although completely different from your experience. But healing and rest were needed as life had been very abnormal for a time.

    I realize now that I jumped back into "normal" life faster than I should have. For example, I felt pressured (by myself, not anyone around me) to return to church very soon afterwards. I love our church family, but looking back, I think it would have been healthier for me to have taken a longer break. Same thing with other activities that we had been involved with. We felt that we "should" do these things in order to resume normal life (and they were all GOOD things.) Just...we should have waited awhile before returning to them.

    Of course you and I are very different (!!) so that thought may not apply to you AT ALL.

    I guess I just wanted to say that for the next while you should do whatever you and Shawn feel like you WANT to do, without thoughts of what you SHOULD do. And of course, be led by the Holy Spirit. Don't allow other people's expectations of what you are ready for rule your decisions and don't put expectations on yourself either. I hope that makes sense.... :)

    Peace to you.

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  26. You are in my thoughts and prayers still Amy, you and your whole family.

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  27. Thank you for sharing your life with us, everyone on here feels as tho we are a part of your family and are grieving for you.............if only each and every one of us could have taken a small piece of our hearts and given them to Hope to give her the one thing she needed while here with you.......our hearts were given to her but not in the way that was needed!
    I have not lost a child but know that I hug my kids all that much tighter because of you....your honesty and strength are awe inspiring and your girls are so very lucky to have you as momma! Let yourselves be taken care of, the best caregivers never take it as easily as they give, and I pray that this time of rest and change of scenery helps you at least minimize the tip of your exhaustion!
    Prayers of Love, Healing and 'Hope' coming your way from Sylvan Lake <3

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