Sunday, March 16, 2008

1 Day Out

We had to get out of the house today. At first we were going to drive down the road. Then it was 20 minutes down the road. We finally stopped an hour later. Matt and I looked in four stores for the right picture frames for Joshua's pictures. (That's unusual because we normally buy those clearance picture frames...)

After a bunch of wandering aimlessly through stores we stopped at a park for Oceana to play. As we drove up we saw our friend Andrea's car. Andrea's husband died last year... exactly one year before Joshua was born. He was 33 years old. I can't think of many people I wanted to see today - but Andrea was in the top three. We talked for over an hour. It was so good to see her, to know that someone (who's not out there in blogland) understands what's going on in my life.

She kept saying, "This isn't supposed to happen. No matter what people say is the purpose, death isn't supposed to happen." At first I thought, maybe she's not thinking straight. As I thought about it more, I realized something that transformed my thoughts about death.

When Adam and Eve were created there was no sin in the world - no mess, no problems, no pain, no sickness, no death. God created humans with no intention of them dying. It's because of our affinity to doing the wrong thing that caused death in the world. I think that's why death is so hard for people to walk through. It's because we were never created to cope with death. We were created to live.

God walks through life with us. God's walking through Joshua's journey with us. But that doesn't make his passing any less painful - except that we know Joshua's before the Lord. We know Joshua's not in pain, not sick, not deformed. We know he's as happy as can be. Death still stinks.

Another thing that meant a lot to me today was a conversation I had with my friend Peka. Peka told her daughters Keryn and Jerusha that Joshua went to be with Jesus and that he was dancing before the Lord, being held by him.

Several hours later the girls came back to her and said, "Mum, is that really true?" I think in their 14-and-11-year-old-ness they thought their mum was sugar-coating things. Peka repeated to me, what she told them. "There's no sickness and pain in Heaven. Joshua's with Jesus. Don't you think Jesus would let Joshua play since he didn't get to play here?"

What a refreshing way to think about it. Because sometimes when I hear "Joshua's playing in heaven", "Joshua's dancing in heaven", "Joshua's an angel"... I sort of hear it, but glaze over. But I know God is truly gracious and loving - compassionate and amazing.

Joshua gets to move without his encephalocele. How perfect. And when I see him, I'll have to see which baby my great-grandmother's holding so I recognize him - since I'd be looking for his cele anyways.... (J/K)

And thank you for praying - Matt's feeling much better. And I don't feel sick at all.
Oceana needs more hugs, kisses, and time with Mummy and Daddy. I think in our grief we sort of fobbed her off on her grandparents when she really needs us - to know she's not forgotten.


  1. just to let you know i'm still praying for you

  2. If there were ever a time to use this scripture...

    "Daughter, thy faith hath made thee whole."
    Mark 5:34

  3. yes, knowing that there is no pain in Heaven that is what gets be through everyday after losing Sami too.

  4. Susie, Matt and Oceana,

    I have been following your blog and I have to say, this last one is the most impressive. This week I have known of 3 different people who have passed on to be with Jesus. (including your sweet little Joshua)

    I don't believe I've known that many people in my life. I'm 42 years old and have been to 2 funerals in my lifetime. Death is difficult for many to handle. I have been thinking of it quite a bit recently myself. (long story but its all good)

    God is so good to us. He made us to live forever as you said, but even in our own weakness, He is such a loving God He STILL stands by us and carries us through the valleys. Isn't that just AWESOME.

    I couldn't imagine the heart ache your feeling but I know that our Heavenly Father can and He is going to be right there with you every step of the way through your grieving process. Hold onto Jesus and eachother and He will bring something good from this.

    Oceana is still so young but I know in my heart that you are both wonderful parents and will find a way with God's help to help her understand and live with the changes of Joshua not being in the home.

    My prayers will continue for all of you. If you need encouragement, all you have to do is read your 100 or so blog messages. :) You are loved and thought of often.

    God Bless and keep you all

    Sonja (Florida)

  5. Joshua is playing in heaven.
    His life on earth has touched so many people, and you have been such a blessing to me.

    Still praying.

  6. I prayed so hard last night before I went to sleep that you would all feel better (from the flu) and that you would have some comfort. I prayed for Oceana that she would be comforted, since it has to be hard sensing something bad has happened but not understanding. I prayed for understanding and peace for your family. I thanked God because I knew at that moment he was holding Joshua in his arms.

    Love, Dana in Virginia

  7. I'm so glad you guys got to get out today. What a blessing that God put your friend in the right place at the right time. He knew you guys needed eachother at that moment.

    We are still praying for you guys and won't stop.

  8. I know you hear this a lot but you really are so strong. It must be so hard to walk through this. I know we never know what we can handle until it happens but I just think you are something amazing. You are so strong and such a wonderful believer. Hang in there Susie. I am glad you and Matt are feeling better. We will continue to pray for you all. When is Joshua's service?

  9. Bless you and your family!! Yes, Joshua is playing in Heaven - what a great image!! And yes death does suck for those left behind, but I am so glad you have close friends who are able to help you & Matt & Oceana.
    My son was born with 4 months ago with many "defects" too and I am so happy that he is still alive and (for the most part) well. God has given us (parents of special needs children) a special kind of strength and through Him we can endure.

    Baby1107 (Nov 2007)- another Babyfit Mom

  10. I'm so glad that Matt is feeling better. We are still sick with the flu. I was just thinking yesterday that it would be wonderful if you got to see Andrea again. That blessed my heart. Love and hugs to each of you.

  11. More hugs... glad to hear that you're both feeling well physically. Special hugs and kisses for Oceana from Georgia.

  12. Dear Susie, Matt & Oceana,
    I'm so relieved to hear that you didn't have several days of stomach flu. I have been & continue to pray for healing in your hearts. I know that no amount of "comforting" can really make you feel better but I will continue to pray that our Father will give you peace. Thank you for letting all of us in blogland know how you are doing. I check on you many times a day & I think about your sweet family all the time.

  13. That's a great post Susie, I've heard that before but I never really got it until you wrote it. Awesome. He is up there playing! But I know the pain cannot be easy. I'm so sorry you have to walk through this, but I am confident you are going to come out on the other side with a new understanding of heaven and God's faithfulness. Love ya!

  14. It's good you have people around you that you can sit down and really talk with that can help you sort things out. Yes, Oceana loves her mommy, daddy, and her little brother Joshua. She needs all the hugs and kisses that you can give her, and you need hers. I'm glad you are feeling better from the flu. And yes, Joshua is dancing with Jesus! I hope you continue to have people there that you can go to when you need someone to help you sort things out more. It is such a difficult thing to have to go through. I pray for your strength and healing, for Oceana to spend some time just sitting with mommy and daddy, sharing hugs, kisses, and memories.

    Debbie Lionberger
    Illinois, USA

  15. Susie,
    I'm posting anonymous today, just because of the topic (most family doesn't know about this). I had a miscarriage before I had my daughter. It was devastating to us. I stayed home the next day, and my husband had to go to work. By the time he got home, I was a mess and he was really upset. We got in the car and started to drive. The longer we drove, the better we felt. During our discussion, we came to the conclusion that driving was something that we felt we could control, while everything else that was happening to us, we couldn't control. I'm assuming that's why you kept driving, wanting control when you can't control your life and what is happening in it. I was really interested in what you had to say today, talking about God didn't build us to handle grief and death. That helps me to understand what I went through not only through my miscarriage, but through other family and friends deaths over the years. Thank you, I have learned so much through reading your blog, which I am sure is hard for you to write, especially right now.

    We will continue to pray for you and your family.

  16. It is so awesome that you are a family of faith...we all know that your baby boy Joshua is in Heaven.

    Your family is in our prayers.

    God Speed!

  17. I am glad you all got out of the house. I am sure you all needed it. I am sure as much as you & Matt want to be alone with your grief that part of Oceana's role on this earth is to teach you how life doesn't stop for those of us left behind.
    In no comparison, when I had my miscarriage I just wanted to lay in bed & cry but my two boys needed me. And, honestly I needed them more than I realized.
    You all remain in our prayers.
    Beth in Texas

  18. Death does indeed stink.

    My father killed himself when I was very young and I remember glazing over when people said that they were sorry. What was there to be sorry about when they did nothing wrong? The cards poured in, people expressing their empathy and I remember feeing so guilty that I wasn't crying enough, or I wasn't upset enough. My father was a grown man though. He made his own decisions.

    I am glad you're getting out of the house. That's so important right now. Not necessarily to offer a distraction, but as a reminderto yourselves that you're still here. The fresh air, the daylight is really good for the spirit.

    I'm not a religious person by any extent of the imagination, but I do believe that there is a special place in God's heart for children who, for whatever reason beyond our control, aren't able to grow up here. It's unfair to them, and to their parents that so many happy moments are gone before they were able to be experienced- but in a way, it's beautiful as well. Joshua will never know pain, or heartbreak, or loss- or any of the things you're feeling now. He only knows love and that's probably the most important thing there is to know.

    I hope you are finding peace. It's not easy but I'm glad you have wonderful people surrounding you, supporting you and helping get through this difficult time. In spite of my agnosticism, I've been praying for you since day one. I hope you continue to find comfort in your faith. That's probably the best medicine of them all.

  19. Your blog was the 2nd thing I checked on the computer this morning. I would say 1st, but the 1st thing I always do is check on Tricia and Gwyneth Rose.

    I woke up in the middle of the night and said an extra prayer for your family and Nathan's family. I was so upset last night when our internet was down because I couldn't check in on both families.

    Love that little Oceana. She is precious.

  20. Your family is in my thoughts and prayers.

    Stay strong!

  21. My sister recently sent me this story in regards to her little girl who has Dandy Waler syndrome. I thought you could use it right now. Joshua certainly was and always will be a brave little soul. All my prayers to your family at this time.
    The Brave Little Soul

    Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?"

    God paused for a moment and replied, "Little Soul, do not be sad, for the suffering you see unlocks the love in people's hearts." The little soul was confused. "What do you mean," she asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone."

    The little soul began to understand and listened attentively a s God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle - for the good of all humanity."

    Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go!! I would love to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!!"

    God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you."

    God and the brave little soul shared a smile, and then embraced. In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed."

    Thus at that moment the brave little soul was born into the world, and through her suffering and God's strength, she unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys - some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. People checked a website and sent notes of encouragement. People made and brought meals to the family of the suffering. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened.

    God was pleased ......

    By John Alessi

  22. I can across your blog through another blog that I have been following. My husband and I also lost a son, Isaac, 2 years ago to anencephaly, also a neural tube disorder. Your Joshua is such a precious and amazing little boy. I am so thankful that we both have the assurance that both of our boys are with the Lord although we ache to have them here with us. I pray that God will sustain you and give you the strength that you need now.
    Erin (Pittsburgh, PA)

  23. Dear Matt and Susie,

    I am so glad that the three of you got away for a bit today and were able to talk to Andrea along the way.
    You are right, she knows your pain so closely and I am so glad she was able to speak to your breaking heart. I do know that when you get to heaven, you won't have to look for Joshua. He will be the beautiful boy that runs into your arms and thanks you for the wonderful life he has that began with the beautiful 67 days and 7 bonus hours. You love him completely and have handed him back with the same love. He knows no better life than this. I am praying for you each day as you struggle to get through this loss of missing him and taking care of his every need. You are still needed and will find your way as you love on Oceana and help her to get through what her sweet little mind and heart cannot understand just now. Draw close to Jesus and He will draw close to the three of you forever.

    Love you and Praying, Laurie in Ca.

  24. Bless you again. How truly proud your mother must be of you

  25. Your journey has taught me to love my son with all my being...thank you for writing your thoughts and feelings of your Journey!

  26. You are right death isn't supposed to be part of our world but because of sin it is. I agree this is why it is so hard to deal with.

    Glad Matt is feeling better and you didn't get sick.

    Keep snuggling Oceana I think it will help all of you.

    There are so many things I want to say but none matter now. Just know that we love you guys and are praying.

    Tarah & family

  27. My nephew went to heaven a few months ago...and his three and a half year old daughter was asking her grandmother about it one day. After talking about it for a while, in her sweet innocence, she said, " My daddy's dead? I thought you said he is in heaven."
    Maybe her understanding is better than that of most adults...because actually, her daddy is more alive than he has ever been and is living in the perfect place with Jesus, our Savior. And so, my view has changed. I try to no longer refer to my nephew's death, but rather his homegoing to be with the Lord. "to be absent from the body and to be at home with the Lord." 2 Corinthians 5:8

    Our hearts hurt over our loss of our loved ones and we miss them terribly but it is comforting to know where they are and that one day we'll all be there together for ALL of eternity...never again to know pain or loss or separation.

    I am praying for your family during this most difficult time of grief and separation from your precious Joshua.

  28. Hi Susie,

    Happy to hear you are all over that bug. That really didn't seem fair.

    Your post struck a chord with me, I really do believe that Joshua is free of his "cele" now. I had a niece, Lily, she graced us for 3 hours. I never actually got to meet her properly. When it was my father's time to go (from cancer). Even though we knew it was coming, don't think anything can prepare a family for the loss of one...anyway my sister whispered in his ear that Lily was waiting for him, that she would be 4yo now and it was her turn to sit on granddad's knee & make him laugh. She told me he smiled & looked so peaceful after. This also helped me feel some peace in my own grief, picturing them together.

    You & Matt need Oceania's hugs & kisses as much as she need's yours.

    Take care, thoughts & prayers
    Melanie Tyquin

  29. Really glad to read Matt is feeling better and it didn't visit you. Your friend Andrea sounds like a real blessing :)

  30. sorry for your loss. you will be in my thoughts and prayers but again I am glad joshua was in your lives for the time he was. if you need anything please let me know.

  31. Your blog has affected me so deeply i am a rollercoaster of emotions and can only begin to imagin how you are feeling. I am a mother my self and don't know where you found the strenth to do this but am glad you did. That little boy of your joined the hearts and prayers of people all over the world. And though it was short his time on earth was filled with as much love and concern as any child could receive.
    I do not believe you will have to find your grabdmmother your and Joshua's souls have touched each other in a way that cab bever be forgotten.

  32. Susie,
    Finding your friend at the park wasn't a coincedence. God sent her there for you, he knew you needed someone to talk to.
    I'm so glad to hear that everyone is feeling better.
    I've been praying for all of you and will continue to do so.
    And you are right, Joshua is dancing in Heaven. How beautiful.
    God bless.
    Love, hugs and prayers from Ohio and Babyfit momma.

  33. susie, i still can't stop thinking of you and your family. you have many faithful supporters praying for you.

  34. God Bless you! You are such a strong woman, I cannot even begin to imagine how you must be feeling.. Thank the lord that Joahua was able to stay with you as long as he did. He trully was / is a miracle baby.

    ((hugs)) to you and your family.

    Wendy xoxo

  35. Your words beautifully reflect how safely you are nestled in the palm of your Father's hand. Thank you for letting me catch a glimpse into that sacred space tonight. I am lifting you up from KY.

  36. The Lord knows our every need. You seeing Andrea today was not a coincidence, but God at work. I am sure you already know that though.

    Saying extra prayers for Oceana tonight. It must be so hard for you with her being too young to understand, and you enduring such heartache.

    Glad Matt is feeling better. We are holding your whole family close to our hearts!

  37. I have only been following your story for a few days, and my heart is so heavy! Your honesty with your relationship with God is so compelling to read, you put everything so succinctly. I have been praying for you and will continue to do so. I pray that you will feel the caring from your blogger friends and that it will give your heart some measure of peace. I pray that you will be able to have even a little bit of the rest your body needs so much. I pray that God continues to guide you, and that you continue to accept His decisions faithfully, although not necessarily without questioning. I wish I could lighten your burden in a more immediate sense, I really do. The heart of this mother aches with your pain. Your faith is inspiring, I will never forget you or your family. God bless you all,

    N. Palhinha

  38. Praying for you and your family!

    Allison in Maryland, US

  39. Hi, Susie,

    I'm so very, very glad that you didn't get sick at all. Tonight when I pray it will be a prayer of thanks for that.

    I like your thoughts on death. I have been thinking about the difference between my situation, coping with the death of my grandmother, and you losing Joshua. My grandmother lived a very long life, healthy and happy. It was "right" that it was her time to go. Joshua was at the beginning of his life and you are a young mom. You were supposed to raise your son into a man and grow old watching him go through school, marry, have children, etc... So with Joshua, it wasn't right. It didn't fit into the natural order of life as we imagine it should be, regardless of what we know about Christ's plan and the Garden of Eden.

    I was also thinking about the decisions you might be facing about Joshua that I didn't have to face, possibilities like having him examined to learn more about his brain and 'cele, or not. Funeral arrangements alone are enough to have to deal with and are so costly. As you navigate these areas, I hope you feel the same guiding hand of God that you did while taking care of Joshua while he was with you at home and that no one pressures you or questions your choices.

    I'm glad you had a day out. I'm usually very money-wise, but I went to see a movie several times a week, at full price, in the first several weeks after my grandmother died because it kept my mind off my grief and got me out of the house, where I still felt I had to be taking care of her.

    I should also explain that my grandmother was the one person in my family I was closest to and loved the most and, as I mentioned, she lived with me in her final weeks. It's not like losing a child, by any means, and I want you to know that I share examples of my time with her knowing the difference, but it was sharing death intimately and naturally and with Christian faith that I feel bonds us.

    I'll be thinking of you tomorrow and in the days after, as you go on, and I'll keep praying for you, too. All my love - K

  40. Out of the mouth of babes! It is certainly true that not one of us sees the father except thru child-like eyes.
    I am continuing to pray for you as the Spirit leads. I cannot even imagine the words to use to ask for healing of such grief but that the Spirit gives them.
    Much love,

  41. Dear Susie and family,
    You don't know me, and I've never commented before, but I been following Joshua's story for a couple weeks now and just wanted to let you know that I am praying for your family during this very difficult time. I also quoted a paragraph that you wrote in this post on my journal, in regards to some close friends of mine whose baby girl just went to be with Jesus (1/6/08 - 3/10/08). I hope that's okay, please let me know if it's not.
    I'll be praying for y'all especially during the next couple days.

  42. May God bless you and your family as you go through this challenging time. May His arms bring you comfort that only He can give. Your testimony through out has touched me, and undoubtably touched so many others. May God truly bless you for your faithfulness, and thank you for sharing your love and your children with us! God bless you always!

  43. I have been following your blog for only a week now, and am so sorry to hear of your loss. I have two little ones and can't imagine what you've gone through.

    I thought of you in church yesterday. Our pastor said that those who suffer here on earth, so much greater is their joy in heaven. So, as much sorrow as you have now... you will have an even greater measure of joy in heaven.

    If you ever have doubts, or catch yourself asking "why".... please remember how many lives you have touched because you've chosen to share your story here. You have touched me in a way few people have, and I'm grateful.

    Bless you always... and I'll continue to pray that you get through your sad time.

  44. To Susie, Matt and Oceana,

    I am new to your story, having come across your blog only a few days ago, when precious Joshua was passing on. I have been so overcome by each of you and your extraordinary son & brother that I am compelled to share my gratitude.

    Your open display of faith, love, and unwavering commitment to one another has been tremendously moving for me. I am challenged by you to be the best mother, wife, friend, person that I can be, and to love whole-heartedly without fear of loss.

    I have never been a religious person, but am moved by your faith to more closely examine my own spirituality.

    I would never presume to have the words to comfort a family grieving a loss such as yours, but I hope you find value in knowing that your journey has made such a tremendous impact on my life, and the lives of so many others.

    I am grateful for all of you and for the life you chose for your beautiful son. I pray that I may raise my own son with the same incredible love and conviction.

    With a full heart,

  45. I don't know if you have this set up to receive old comments people post, but I just wanted to tell you how much you ministered to me today.
    "Yeah, though He slay me yet will I praise Him." The words of Job come to mind when I read this post.
    It is so good to know that there is no sickness or hurt in heaven but that doesn't fill the empty space in your arms just now.
    I can't even imagine the ache and the pain you are going through right now.
    Just wanted to let you know I'm praying for you and your sweet family.