Tuesday, March 11, 2008

An apology of sorts...

Dear Blogland,

You'll all have noticed that my posts have become a bit less descriptive, a bit less positive, a bit more stark.

I'm having a hard time. I don't like admitting that really - but I'm sure the line-in-betweener-readers will have realized that already. Several days ago I realized what "gone forever" is - and the idea of never (physically) seeing Joshua again is heart-wrenching. And I think what hurts worse is that I know it's not just an idea - its an eventual reality.

I hate to depress the world. But it's a reality I'm having to face. I feel bad for some people who I know visit every day with hearts lodged in throats...hoping and praying, crossing their fingers, squeezing their eyes shut...willing away the words "Joshua went to be with Jesus". I know you do, because I did the same thing with Tristan and I do the same thing everyday with Jacob and with Eva. It's sad. I know it is - for you, as well as for me.

I know that in some small way you are experiencing my journey with me. I know you think you don't understand, but let me assure you that the sinking feeling you get when you think about me losing Joshua - is a true emotion. I can't tell you what it feels like yet - I have an idea. But that idea feels similar to what I imagined it might feel like.

There is a unique heartbreak involved in losing an infant - I believe. It is similar to other heartbreaks - losing a child, a teenager, an adult child. But an infant... an infant has not lived. Sure, Joshua's alive, but he's never walked, run, smiled, spoken, etc. So with Joshua, it's as though he's missed out on life. As my mother put it: Losing a small child (miscarriage through infant) is losing a dream. Not that a parents doesn't lose their dreams for an old child, but those children have at least experienced some things. Joshua hasn't experienced a lot.

But here's some things he did experience:

Sleeping in his own bed
Sleeping with his mommy (on accident, I fell asleep with him on my chest and woke up 3 hours later).
Cuddling with Mommy, Daddy, and his big sister.
Cuddling with his aunties, uncles, cousins, and friends.
Watching NFL, NBA, and NCAA with Daddy.
Watching Daddy play Wii.
Evading death.
Evading death by *big sister*. (Horror and panic attacks by Mommy!)
Going through enough packs of nappies that Mommy has forgotten how many!
Wearing clothes in more than one size.
Wearing hand-me downs (cousins, big sisters, and friends).
Getting cards in the mail.
Getting presents. Christmas, birthday, and just-because.
Doctor's visits.
Nurse's visits.
Plunket appointments.
6lbs, 7lbs, 8lbs, and 9lbs.
17in, 18in, 19in, and 20in (That's right! 20 in!).
Mommy milk and formula.
Lots of birthday cake via Mommy milk.
Lots of cool hats!
Bathtime in Mommy's bread bowls and the bathroom sink.
Worldwide fame!
A sunburn (Because Mommy was an idiot and forgot that I needed sunscreen too! She even gave it to Oceana!)
Vacation to Rotorua
Riding in the car.
Craddle cap and Baby acne (Much to Mommy's consternation!).
Lots of visitors.
Getting cried on.

A lifetime worth of love.

I have to remind myself that Joshua's life is not a mistake. Joshua's not screwed up. Yeah, his body is - but he's not! And God doesn't make mistakes! There's sin in our world, which causes problems. But God is faithful to uphold those who seek to be held by Him.

My hope for all of you is that Joshua's life makes an impact on yours. Please tell me if it does - I can only assume he has, because he has affected mine immensely. I'm sure it will be years before I know how much...


  1. Hi Susie,
    I just wanted to leave you a message and tell you that we're thinking of you and praying for you all every day. I know that swooping sinking feeling you mention all too well - we knew from when I was 12 weeks pregnant with our first son that we would only have a very little time with him once he was born - 15 minutes in the end. The hopes and dreams of watching him learn to walk, talk, go to school, university, get married, have kids, were so hard to let go. Our second son has an incurable heart defect. While he is well and wonderful just now, (he's four) the oldest child in this country with his condition is only 16. His future, like Joshua's is a big unknown. We hope and pray that he will continue to thrive, but we don't know. They can't do anything to 'mend' his heart - only to keep it going as best they can. I just wanted you to know that there are people out here in the blogosphere who understand a little of what you are going through. Most of the time we keep going, think positively and stay hopeful, but sometimes it all just weighs down like a ton of bricks until you feel like your heart will break. Please know that we are thinking of you, and praying that you are given strength and serenity as you continue your journey with your lovely boy. Try to keep enjoying every minute, and celebrate every new 'achievement'. With lots of love X

  2. Susie,

    I read your update today and just had to post something to you. Judging by your post counter, there are a lot of "someones" just like me who check on Joshua at least several times a day. And please rest assured, he has impacted this world in a most amazing way. Your story, and the stories of Jacob, Tristan and others, have helped me grow closer to Jesus and love my two boys a little better. I have been praying for Joshua and the others, and for their families, and time spent in prayer for others is truly a gift. I've never left a comment on any blog before, but I wanted you to know there are many moms (and dad's too I'm sure) out there who are in love with your little boy and are in fervent prayer. This life IS but a vapor, and Joshua's small stay here on earth, while shorter than you would want it to be, is but a fraction of the eternity he will spend with Jesus. And his spirit is whole and only temporarily bound by his earthly body. I know you know all this already, and don't worry about sounding down on your posts. You are a mother grieving what's to come and you don't need to make excuses for that.

    In His Love,
    Sherri in North Carolina

  3. Joshua has made an impact on my life, yes. I never even knew that living with such a birth defect was possible but now I check your blog every single day for new updates and pictures. I often find myself teary eyed and wondering what will happen, how I will react when Joshua leaves this world. I have immense empathy for you and your family while at the same time I am amazed by the strength that you are showing. Who ever thought that reading something on a blog could touch a person so much? I know I didn't.

  4. I happened to stumble upon your blog a few months ago - and now I check in every single day. I admire your strength, your compassion and the love that project.

    What you will eventually face will be devastating. But I can tell that with your faith, family and beliefs you will be strong. You're fortunate that you had this time with Joshua and that you've taken so many photographs - one day he will physically be gone - but he will always be in your heart. You'll have pictures and video to help you through the hard days when you need to see him again.

    For now - love him, cuddle him, enjoy him and breathe in his beautiful baby smell.

    Joshua has made an impact on a lot of peoples lives - even people that have never met him or his family.

    Take care.
    Hollywood, FL

  5. I read your blog and it brings back so many memories for me. I remember the e-mail I sent out to everyone. I let them know that JT wasn't going to make it. We didn't know how long or when Or how but, we knew he wasn't going to be with us much longer.

    I have been there. I wish I could say I know how you feel but, everyone feels such different emotions I can't tell you that. I know the pain of knowing your child is not going to live and the feeling of my child not experiencing anything.

    But, JT experienced alot of things in his short life I made sure of it. Just as you are doing with Joshua.

    We made a wish list. It had things on it like go outside for the first time. Eat a dum dum pop, taste pickles, and ice cream and grapes. Read the story of Jesus' birth so that when he got to heaven he would know his story just like Jesus knew Johnathan's.

    There was a lot more on there. But, God made sure that everything on his list was done before he took JT home.

    I don't know why I am telling you this, but, you just brought back memories. I truely believe that God answers prayers. We prayed that JT would be able to go home. We prayed that he would be healed. He answered that prayer all at once. The day he took him home he was healed forever.

    I spent 8 1/2 months with my precious boy. He never came home to our house he was in the NICU the whole time. But, I remember being where you are now.

    I look at little Joshua, I see a baby. I see a loving spirit. A gift from God, A miracle.

    He is gorgeous. I will be praying for your family.

  6. I've been reading your blog for a while, and praying for you since I found out about Joshua through my friend who goes to Elim. Your thoughts and prayers are with me through out the day.

    When my best friend died (She had a immune disease that never allowed her to grow past childhood..her diagnosis was to live until 10-12 years of age, she was 18 when God took her home) One of the only things that got me through was a poem titled "letter from home." I know you will find comfort in God but it doesn't make the pain go away. But know that your loved, and so is Joshua by so many people who haven't even met him.

  7. I want you to know that Joshua (along w/ you) have impacted my life...in a wonderful way.
    I have 3 children, the youngest being 10 weeks old...and because of you & your honest blog, I often remember not to take each day w/ my children for granted. I think sometimes it's so easy to get caught up in tomorrow and all the things yet to come, and how easy it is to forget to really enjoy today. Your blog & your journey inspire me to be a better mommy, and to stop and hold my babies a little longer and a little tighter. Our household prays for Joshua and your family every evening. We love you.

  8. 9lbs!!! He's almost as big as my 14 week old daughter Susie! I hope he catches up to her :)

    You asked to know how many people Joshua has impacted...he has changed my life in a way, as have you. I cheer everyday I read that Joshua is still with you, I cry when I read of your frustrations and fears, I pray earnestly for a miracle even though I realize that there is no medical option for him, I pray for you, Matt, and Oceana for strength and wisdom and for as many wonderful memories as God can give you. Joshua's story has taught me once again to embrace life and to hold my little girl close and never be afraid to show love to those around me.

    Most importantly it has helped renew my faith that in God all things are possible...and God is everywhere.

    I love all of you!

  9. Susie -
    I don't know you. I've never met you. I've never held your precious boy...or girl. But your family has touched me immensely. I look at your little boy and see a perfectly formed child - perfectly formed, just the way God intended. I haven't to slightest idea of why Joshua has the problems he does or why God would take a beautiful baby home (I struggled with the same question when I lost a baby). But I do know that there is a plan - and it is for all of your good. I know that when it is Joshua's time to go home - whether soon or farther into the future than we can imagine - he will go home to a Father who loves him vastly more than even you and Matt do. I know that he will know no suffering that our earthly children do. I know that though your heart (and all of ours) breaks here on earth, all of your tears will be wiped away when you are reunited with your Joshua. You asked if Joshua has touched lives - of course he has! What a strong little man (and a beautiful miracle) to make it this far when no one thought he would make it past birth! How many people have been touched by our God who is merciful to let you have the time you have with him? How many people appreciate their children all the more because they realized they are not promised tomorrow? Don't feel bad about having a hard time now and having that come across in the blog. This is a heartwrenching situation - and who could really relate to a person who didn't ever struggle with the impending loss of their child? Your story - the ups and the downs - are all part of the miracle God is working in your family through this. Still praying for all of you.

  10. For Joshua,

    Morning sun, mountains tall
    God abouve designed them all
    Running streams, desert sands
    Just a few of the wonders of His hands

    And I'm amazed to see
    All He's done and to know
    He did it all for me (Joshua)
    Oh how great to know I am
    Standing here as a wonder of His hands...

    You are a beautiful amazing miracle we love you and are praying for you Joshua...

    ~ McCree family :)

  11. Susie,
    Oh, please know how much Joshua has impacted my life! You have allowed us to see God's handywork through your life. God is good and faithful. I have enjoyed reading of Joshua growing and being loved on. I don'tknow the right words to reassure you that you are doing an incredible job as a momma. I am praying for you as you go throughout your day.

    Michelle Horton

  12. I've been an avid visitor (at least 5 times a day to check in) of your blog for quite some time now... I don't know how to discribe how i've been affected....I've been thinking a lot about my own children and what it would be like if something were to happen...I'm currently getting divorced and just the thought of losing custody brings me to tears let alone if something more serious were to happen.. I'm a prior military wife, I was kind of trained to deal with everything and not show the pain and stress but reading your blog makes me wonder if I could ever be as strong as you and your family are.. Strong and Courageous is right..You have gone though more turmoil and pain and stress then most people can even imagine and yet your strong and doing what you have to do.. Its inspiring, conforting, scary and heart lifting to be able to see him grow via the blog..

  13. Even though you know that one day Joshua will go to be with Jesus, and that one day will be far sooner than you'd like, there is no preparing for that day. You can't "get ready" for it because that would mean trying to detach from Joshua just a little bit, and you could never do that. You want to love him with your entire being every day, every minute, every second. My heart does break that any momma has to walk this road. Praise God for the promise of heaven!

    It is a very long story, but God has used Joshua to lead me to other blogs and other stories, and he has rekindled in my husband and me the desire to adopt a child. We began the process this week, and it all started with the day I first read Joshua's blog. God is using this little man, that is for sure. He has changed my life!

  14. I was having troubles this am as I was trying to leave a comment here, so I am not sure if it actually went through or not. If it did, just delete this one...
    Your family has impacted me greatly. Your son has caused me to hold my children a little tighter, to tell them I love them more and focus more on their strengths than their weaknesses. It is amazing how God can take our weakness and turn it into amazing strength.
    I marvel at how God calls even a small baby to be a missionary to many. Without words, your child has shared the good news of Christ with many throughout the world. He has had prayers from people everywhere and has demonstrated an unfailing, unconditional love.
    I know your pain must be unbearable at moments facing the reality that your dreams for him won't be realized. The one sure thing, though, is you have the certainty that you will be reunited in heaven with him. One of my greatest fears as a parent is that my children will not choose to accept Christ. Thankfully 2 of the 3 have so far. The third is still young.
    I've tried to put myself in your position many times. I can't imagine walking for a minute in your shoes. I would like to say that I understand your hurt and pain, but the truth is, I have no clue. I can only imagine how you are feeling. I am so thankful that you have the Lord to lean on. It breaks my heart even more to hear of people without that hope. I was reading about trials and suffering yesterday in the Bible and God's promises as it pertains to our storms in life. He grants peace, rest, comfort and restoration and finally, victory. I continue to pray for your family and admire the way you are running the race. May God continue to be your source of strength and encouragement as you face an uncertain future. God bless.

  15. Hi!

    I check your website every day and have offered up many prayers for little Joshua. I am so fond of him and your whole family. It seems weird to write that because I've never met y'all! I am so impressed with your strength through this. Joshua has impacted mine and my families lives by helping the children to see that God doesn't make mistakes. All people are created in His image whether we think they're "perfect" or not, they are beautiful. Your care of him is so beautiful to see and I know you cherish him so much. You are impacting so many people for the Lord by caring for him and by being a voice for him. His life is a testimony to the Lord's goodness and all glory will go back to God. I may never meet you this side of heaven, but I won't forget coming here and seeing your tender care of Joshua and your family.

    od Bless,

    P.S. I wrote a comment several weeks ago about you getting the gift of time with Joshua. I gave a baby boy up for adoption 19 years ago after having him for 5 hours. I was very young and it was my parents choice. I can tell you that I've grieved the loss of my baby much as I would have had he passed away. While I don't completely understand what you are going through, I can tell you that the pain goes away over time.

    I hope what I've written is a comfort for you dear Susie. :-)

  16. Wow, Susie. A most amazing, heartfelt post. You certainly did not have to share those deepest thoughts with us, but I am SO blessed that you did, and I know others will be as well.

    Joshua has done even MORE than what you listed, too. He has been a deliverer of God's message, proof of Jesus here on earth, living hope of our Eternal Hope of being with Jesus, he...and you through your faith and words...and because God has strengthened you both to do so, has blessed SO MANY people and touched us FOREVER!

    Susie, I am SO sorry that you are feeling sad and down and I certainly don't have any special words of comfort or understanding for you aside from reminding you that Christ is King.

    Thank YOU so much for sharing Joshua with all of us. I know I, for one, am forever changed because of him (and because of Him!).

  17. You and your whole family have impacted our lives! I am Jessi, 21, my husband is Matt, 21, our daughter Taylor is 2 1/2 and we have another baby girl to be announced in the beginning of July. If not for Joshua, we would have never known anything about you or your family. You are living examples of walking by faith every day. God entrusted this beautiful baby boy to you all, and may I be frank by saying I believe you are passing the test. If the drug addict were blessed with Joshua, do you believe he would have the life that he has with you? I should say NO. you are the perfect family to foster this perfect little soul for Jesus. And what an awesome reward to be held by Jesus Christ, never having to experience the hurt of this world, the sin and the hate. I know what you mean by how hurtful it is to know that you will never physically see Joshua again once Christ takes him back. You are right in saying that God does not make bad things happen, but he does allow it. God is love, and even though these things are hard to understand, he does not plan to harm us, but to prosper us. With that promise in mind, he does nothing except follow his good and perfect plan. His plan is for our benefit, and for the benefits of others. But I know that when you and Matt get to those pearly white gates, Christ will put his strong hands on your shoulders and say, "Well done, good and faithful servant." You have been an inspiration to all of us, and all because of Joshua. We thank God for Joshua, and look forward to meeting him one day.
    There is so much more that I want to say, but for your sake of your eyes falling out from all the comments I am sure you get every day, I will cut things off now. We love you all and think of you and pray for you often!
    God Bless- Jessi

  18. Susie,

    The impact Joshua is making will NEVER be fully understood this side of heaven. What a touching post of all the things this sweet little guy has been able to do...

    A lifetime of love, crammed in a few short weeks--so very true. And he is not just being loved by you, but because you are sharing your story, he is being loved by many, many others as well.

    Devin in Illinois

  19. You are doing everything to give Joshua a wonderful life. I have been reading your blog since right after his birth and I find myself thinking about him quite often. He has made his way into my heart even from the miles and miles between us. I keep all of you in my thoughts and my heart.


  20. Susie, while I've never been through what you are going through now, and all I can offer are my prayers...well, I hope it's some comfort to you that there are many people out there praying for you and for whatever time Joshua might have here on earth.

  21. Hi Susie
    Your story has touched me. I only wish I had the correct words for you. Only to let you know that you are a remarkable mother to both your children. God has your family in the palm of his hand.
    Wishing your comfort all the way from South Africa.
    Karen, Cape Town

  22. Susie,
    Joshua's life is one of courage and strength. To say that your story has impacted my life would be an understatement.

    Love you lots,


  23. I just had to post a comment today. Joshua is a miracle and a blessing. Thank you for sharing his life with all of us via this blog. Your journey is a lesson in hope. No matter how long your precious son lives on this earth, please know that his life has already left imprints on the my heart. I'm sure that others feel it too. God just doesn't make mistakes!
    Praying for you each day.


  24. I'm not sure if I've commented before but I don't think I have.

    Your Joshua is a beautiful gift from God. You know that, but I still wanted to say it. My heart is happy for you and hurts for you at the same time. It is happy because your honesty and transparency allow others to see just how crazy you are about him. It hurts for you knowing that you will only have your precious boy in your arms for a short while.

    You are wise beyond your years. You are beautiful and talented. May God continue to bless you and your precious family and give you the peace that surpasses all understanding.

    Laura Lee

  25. Susie, I check your blog several times a day, hoping you've had one more day with Joshua, and sighing with relief that the words I dread are not there. If this is how I feel, a stranger across the world from you, I cannot fathom how it must be, to be you.

    And yet, each day, I marvel that he has held on for so long. I wonder why I was led to your story, and what lessons Joshua's life must be teaching to untold numbers of people.

    Thank you for sharing Joshua with the world.

  26. Susie,

    Your posts never get me down but your honesty sure lets me know a part of the hard time that you are having. I can't even imagine what your heart goes through when you look at this precious little boy, knowing his stay here is temporary. My heart breaks for you because I can offer no helping words to ease what you already know. I just ask God to hold you and never let you go, and give you the strength for each day to live life to the fullest with Joshua. I have a prayer list by my computer of 11 babies I have prayed for and beside each name is marked "In Heaven" as each has entered this life briefly and placed in Jesus's hands. As I read on Jacobs blog today, day 57, I realized he has had one more day than Tristan's 56 days, Poppy Joys 3 hours, Ashers 37 minutes, Copeland's 8 days, the list goes on and on. I count each minute, hour, day and days as a blessing for each of you that have chosen life and wait in an uncertain world to meet these treasured gifts and hold them for as long as they can before the heartbreak takes over. I can only imagine the struggle to love unconditionally and freely against the odds that are sure to come. This is where I have to pray for all of you mommys who are on this road of loss. I pray for your hearts to be protected from the outside world that goes on daily inspite of what you are experiencing. I care so much for all of you to not be hurt, but you are. And as a mother and grandmother, this breaks my heart for all of you that are or will be left behind to pick up the pieces of shattered hearts. So, please know I have you in my heart all day long, every day, praying for you and all of the other girls. I ask God to prepare your heart if this is even possible, and to carry your burden. I have to believe that He will because He has promised to. I am so thankful that you and Matt are Joshua's parents. He is experiencing the greatest and most pure life in your love for him. He will not be missing anything when Jesus takes him in his arms. It is we that will experience the loss he leaves. May Jesus be your everything. I love you guys. And Joshua touches my heart so much in ways I don't understand at times.

    Laurie in Ca.

  27. Joshua has affected my husband and I. We sat at the computer last night reading several pages of his tiny life. As parents to a 6 month old we were both saddened at his condition, but so thankful that he has had the life that he has. God gives us many gifts, small and large, and Joshua has affected people around the world with his little life. He's a blessing! What a blessing to you that God knew that your family was strong enough to take care of him, love him, and eventually deal with him going home to God. It will be a very sad day for MANY, but rejoice knowing that he is with his heavenly father! Love, your sister in Christ Ashley B., Columbus, OH

  28. Susie,

    I have been blessed immensely by your openness and painful humility and honesty!

    Joshua has taught me to cherish every moment because it might be MY last!!! As well as that of my husband and our own children.

    I have been blessed to watch you, and Matt too, grow in leaps and bound this last year - in ways I never imagined!

    God makes no mistakes, you are right! And I am thankful for the way he has blessed your house with the wonderful gift of Joshua!!

    Love & Prayers, PAM

  29. hearts lodged in throats...hoping and praying, crossing their fingers, squeezing their eyes shut...willing away the words "Joshua went to be with Jesus".

    Exactly. This is exactly what happens every time I click on bloglines and see there's a new post on your site.

    I think everything you said is spot-on. I don't know that I have anything left to add.

    I know that Joshua (and your family) has touched my life. And that of my SIL and BIL, as they check in on you, too. And yesterday, when you posted about how much fenugreek was needed to up your supply, I passed the link to that post along to a friend who needed some help increasing her supply for her daughter, too... so you and Joshua are helping another mama and baby most likely as we "speak."

    May God continue to uphold you and strengthen you as you walk through this journey. I can't even begin to imagine what goes through your mind and heart every day. But I'll cry right along with you and your readers and continue to keep you all in prayer.

  30. Let me tell you; Joshua's life has touched mine in a deep way. I used to think I wouldn't carry a child with a defect if that was the case. Now I know I would indeed carry that child. God decides when to take someone from this world no matter what the situation.
    I also want to tell you that you have brought me closer to God. I have always been a believer and I have even been saved (I am Baptist) but from my relationship was not as strong as it could have been. You renewed my beliefs and it's amazing to see how God works in each person's life. Thanks so much for sharing Joshua's story with the world!

  31. Matt & Susie,
    I just want you to know that you have been in my prayers and I pray for all of you every day. We have known Matt and his family for a long time and now I feel like I know Matt's new family. Susie, you should write a book or should I say you are writing a book. Your faith has been very inspiring to me and I know that you have all touched many lives with your story. Give Joshua a hug and kiss for me.
    Lots of love and prayers,
    Vicki Price
    Richwood OH USA

  32. The impact is incredible! Your faith and standing firm on HIS foundation has been such an amazing light even in my own grief journey.

    Keep sharing your heart and fear not for the Lord is with you!

    I am praying for you and my heart aches to know the thoughts that go through your mind. I empathize with you daily and find you very brave with such a tender heart but so convicted in your beliefs.

    Thank you for sharing Joshua's miraculous life with so many.

  33. Susie, you don't know me. I'm a 5th grade teacher in a rural Minnesota town. I've been married for 14 years and have two sons. It would appear on the surface that we don't have much in common. But I see something huge... my life has been touched by yours, through your blog. I think of you every day and your site is the first one that I visit when I turn on my computer. I was raised with not knowing a lot about religion, but through you, I am learning about faith. I have been constantly praying for you and your family and will continue.
    I know I speak for many on here when I say thank you for opening your heart to us. God bless you!

    Laurie in Minnesota

  34. Dear Susie and Family,

    I have been reading your blog for some time now and I just wanted you to know that Joshua's life has made a big impact on me. I am the mother of two boys, a 3 year old and a 7 month old. Some days I feel that I just can't handle being a parent.

    Your family and son has taught me that the most important thing in life is the moment we have now with our children and our loved ones. I have spent many days guessing at the future, and pining after the past. I forget about the most important time which is the now.

    I appreciate it greatly that you continued his life. In this crazy place not many people would have batted an eye if chose to end it prematurely. God has given you and your family amazing strength.

    I could go on and on, but I will just end it with Thank you for letting us be a part of your journey.

    God Bless,
    Maryland, US

  35. I have never left a comment for you before. After reading your blog today I wanted to let you know that you don't need to apologize for being real. I can't even imagine what you are going through and I am not going to try. I have been checking on you and Joshua every day. I can only pray for you and your family to have peace and to cherish every moment that you spend with each other.

    In Christ,


  36. Susie,

    I have been following Joshua's story for only about a week or two, but you have had an impact on my life. You get my eyes off my own life and help me to see a bigger world and the needs of others. Sometimes we (I) tend to be so narrow in our focus - we only see what is going on in our four walls. By following your blog (and Jacob's and Eva's and Tristan's, etc), I am blessed with the opportunity to pray for the lives of others whom I would have otherwise never known.

    Your family and sweet little Joshua are in my fervent prayers. His life is a gift and it is amazing that such a small baby will impact lives for the Kingdom. But I know he will - and is.

  37. Hello my name is josh, i am Marie Douglas's Nephew? godson, i am helping her build a web page for her baby Elija. How Did you start it?

  38. Joshua has really had an impact on my life as have you. Reading your posts makes me want to be a better stronger Christian.
    I really don't know how to express what I'm trying to. But I love and pray for you and your family. I do get that sinking feeling when waiting to hear updates.

    I'm so glad that God chose you to be Joshua's Mommy, because of that I'm trying to be a more positive, loving Mommy to my children.

  39. I have been reading your blog for about a month now. I can't even remember how I got here, but once I was here, I was hooked.

    Hooked by your strong faith,
    Hooked by your beautiful daughter,
    Hooked by your precious son,
    Hooked by your blessings.

    Joshua is such a blessing. Not just to you and your family, but to me also.

    Joshua is living his life to the fullest. Every day he shows unbelievable courage and strength. He is truly a gift from God.

    Reading about Joshua has made me so thankful for the things I take for granted.

    I pray that you have an eternity of days with your sweet boy, but if his days on earth are short, please know that he has touched my heart and I will never forget him.

  40. Dear Suzie,

    No apology of any kind is needed, you share what you feel is needed.

    Around the time your Joshua was born my Joshua was diagnosed with 3 different hernias along with a few other minor problems that come with prem babies. At the same time I had started praying that God would lead me to a new group of friends outside the ones I had. It was at this time that the birth of Joshua spread through Babyfit. I then searched for your “story” and in one of the posts you had listed your blog page. I then started reading back a bit on your blog page. God used your family to give me perspective on what I was going through. He reminded me about tiny details He’s interested in. God used and is still using Joshua’s life to keep pointing me back to Him. I have grown closer to God I feel that I have more zeal to serve him than ever. I was describing to my hubby the other day, its as if I’m watching God physically work in your lives. God has taught me so much about prayer, contentment, trust, worship, joy, peace, love and many more. My aim in life is not to have experiences but a change of heart and mind set. To act on what I’ve learned through the experience. What good is it if it fades into nothing? Always know as Joshua has impacted your life, he has also left a permanent mark on my life as well. I believe God has given you extra hearts such as mine to help bear the load of the joy you now experience with him and the grief that is to come. Remembering its not a grief without joy.

  41. I would love to share with you how your family has touch my life,but would like to share in private. could you send me an email address?
    jenna, WA

  42. Even in your most frustrated, disheartened moments the love you have for God and Joshua shine through. Joshua has certainly experienced that love.
    I would encourage you to read the book Baby George, if you haven't. A caution it will make the most stoic man cry, but it is wonderful and encouraging still.
    The love Joshua gets here is important, but I don't believe that is why God sent him. We each have a purpose. God chose Joshua to show the world His love and to draw people closer to Him.
    Even as your heart breaks for Joshua, I know you know you are being held. Your family is being lifted in prayer from Africa, NZ, America and everywhere in between all the way up to Jesus who sits at the right-hand of God and makes intercession for each of us.

  43. I think I can safely say that you and Joshua and your family have deeply impacted a lot of people. I'm one of them. I'm about 3.5 months pregnant with my second child right now, and am at a higher risk than most for neural tube defects. Yeah, it scares me a bit. Reading about Joshua has been a blessing, though, a tearful one, a sadness mixed with happiness mixed with the fear of the eventual and inevitable. But, Susie, something that I am constantly reminded of when I read your blog is that God loves our children more than we could ever love them. And being a mom, I can hardly fathom how anyone could love my kids more than me and my husband, but I'm glad God does! Another thing that floors me is what an amazing ambassador of God that Joshua has become. So young, but so far-reaching! I agree, you'll probably never really know the extent of the impact that Joshua has on the lives of the people that read this blog. Or of the lives that will be touched once you publish your book. Joshua's life is not a mistake, like you said. Neither is God's choice of who his parents are. Cuz let's face it, if Joshua was born to a mother who did not love Jesus and did not care for her children, Joshua's life might have been in vain. But his life isn't in vain, in no imaginable way. And I see God working through this special little boy and his mommy. I dearly wish that Joshua's time on earth didn't have to be cut so short, and I'm praying so much for you guys. And I'm crying over here in California for you guys, but I look forward to meeting Joshua (and the rest of you all, too) in heaven!

  44. Susie

    This post bought tears to my eyes, you all are an inspiration. Chronicling Joshua's life has made a difference, never doubt that!

    Regardless how long Joshua is on earth for he has had more impact than a lot of people who have lived to 80 have had.
    I hope this doesn't sound too tacky but one day you will get to see him again, and he will say to you 'mum (and dad) you loved me beyond anything i could have imagined'

    We are praying for you guys in the deep south.

  45. I wanted you to know that Joshuas life has had an impact on me. seeing your dedication to God in a time when most people would turn away has helped to renew my beliefs and reading and praying for your family has only made me evermore grateful for my boys- we can sometimes take for granted our healthy children when they are driving us nuts and we forget to be thankful that God gave us such a wonderful precious gift-health and each other. I dont know what to say to offer you encouragement only that you are doing the best you can and you have done FAR more for your son than many people would. Joshuas lucky to have you :)

    Elisha Canada

  46. I'm away on a family vacation this week and have been so anxious for internet access to check your blog. To answer your question at the end of this post, YES, Joshua's life has had a huge impact on me. I take nothing for granted anymore, especially where my children are concerned. I'm grateful for every moment of life and recognize the gift in each new day.

    Susie, I'm praying for you ... you've been through so much already and have so much more to face. I know your faith in God is strong and that you will cling to Him no matter what. I loved what you wrote about Joshua's spirit being perfect although his body is not. So very true ...

  47. Dear Susie, the precious gift of Joshua's life has made an impact on mine, that is for certain. I hold my children a little closer, cuddle them a little longer, have more patience with them, enjoy them more fully, pray for them more regularly. Yours and Joshua's life story has brought out the true blessing children really are, an indescribable gift only given by the grace of God. They are not really mine, but HIS. And HE has only allowed me to take care of them for Him. For HIS glory. Thank you for your blog.

  48. Joshua's life certainly has made an impact on mine. For a start he was born on a significant day for me and it has always made me feel like I am meant to take notice. Yours is the first blog I check with my breath being held each day. I pray that when his time comes you are filled with love so you can't be too crushed by grief.

    Your beliefs and respect for Joshua has certainly changed my perspective on babies who are diagnosed with serious problems before birth. I feel knowing about Joshua have made me more compassionate and capable of imaging the worth of more life paths.

    You have to add blog celebrity to his list of experiences :)

  49. Just like I can't fathom the idea of losing my baby, I don't think you could even know how your story has had an impact on me. Somedays, when I'm feeling not so mommy-like, and longing for my "old" self, I think about you. Of course Joshua has impacted me as well, but I think most of all, I relate to being a Mom. I love it when you're "real." I worry about you when you're not. Somedays are going to be harder than others. Inevitably the hardest ones will be yet to come. I think you have to grieve the loss of the life he's never going to have. But I think you do an amazing job of giving him the fullest life possible. No, it won't be the same life as Oceana--but think of how much he's gotten to live in these short 9 weeks. Most of us take the little things for granted (like how many thousands of diapers we go through). You take nothing for granted and for that you are an inspiration....

  50. It's very kind and thought of you to not want to "depress the world," but (I speak for myself and probably for others too) we are here to offer support to you.

    I'm one of those "line-in-betweener-readers" and knew it was getting tough for you, and you sure have been on my heart.

    Even though there is this tough reality there is always hope, maybe not where we want it to be, but it's there.

    HOPE: The impact Joshua's life has had on mine-That beautiful baby boy has given me HOPE when I've had none! LIGHT when it's been dark. SUNSHINE when it's been raining. SMILES instead of frowns. Restored FAITH. God is in control, and Miracles do happen-did, still are, and will. God is LOVE, and there will always be HOPE.

    Praying for God to cradle your heart..

  51. Joshua's life is making an impact on my life and the life of my 6 month old son, Owen. I can't fully explain now as I don't really know, but I can tell you for sure that the amount of emotion, prayer, and thought that I express daily regarding Joshua's life (and yours too) is not in vain. I will wait and see what good things God will use it for. Your faith is inspiring. Our God is good and even as you prepare to let go of your son, He has never and will never let him out of His hands.

  52. Reading your story has completely changed my perspective on the value of life - even in small doses. You are aboslutely right when you say he has experienced a lifetime of love in such a heart-wrenching small amount of time. Every day I read your blog - as the page loads my heart stops beating but every day when I finish reading your thoughts, seeing the pictures of your beautiful children I am very seriously reminded of how precious every day is. I will never ever forget Joshua's story and I will always continue to tell his brave story to my friends and family.

  53. cant say anything except i'm proud of you goose.. you're such an amazing person not to mention super mom. love you!

  54. I found your blog through a commenter over at Nathan and Tricia's blog. I just wanted to let you know that I have gone through many of your posts over the last few months (particularly the "question" ones). I am praying for you. I have no experience as a mother, but you are in my thoughts.

    North Carolina

  55. Susie,
    You are simply amazing. Your words have made a HUGE impact in my life. I pray for Joshua everyday.
    Reading everyday,
    Inspired Mama of Two in CA

  56. Joshua, and you sharing him with us- and sharing of yourself- has made a huge impact on my life. Thank you from the bottom of my heart. yes- I do check your blog everyday- and yes, every day before I click on the title under my favorites- I say a prayer- hoping that, "today is not the day please Lord".

    This past weekend- an online friend of mine nominated me and a few other ladies for a little blog award.... I tell about it under this past Sunday's post on my blog-
    anyway- I also nominated you. I didn't tell you- because I figured you had enough going on without me giving you one more thing to do (reading my blog)- but- I think you need to know how much you and your family are loved and prayed for- by people who have never met you.... and just how important not only Joshua's life- but also his legacy will be to so many people.
    God is using Joshua now... and in the future will use Joshua's memory through you and your family- to touch many lives.
    Thank you.... Huge hugs from North Carolina.... Tanya

  57. I read every day and do so look forward to all the little Joshua tidbits. Oh gosh, you are so right about how I open this site....with fervent hope that you all will have one more day, one more cuddle, one more anything with him. He is remarkable in so many ways and I know whenever I hear the name Joshua, I will remember your sweet little guy. Thank you for sharing your life and your sweet boy with those you know and those you don't. I'll share my favorite little thing about him....his hands. They are so delicate and relaxed in all the pics. He just looks so at peace with the world. **hugs**

  58. I stumbled across your blog about 1 month ago and have visited every single day since the first day. I've read every single post that you've ever made. Joshua has truly made an impact on my life. I have a healthy, happy 17 month old daughter who I am so grateful for. I read your story with so much respect for you. I can't imagine what you and your family have gone through. I come home every day from work and immediately run to the computer to "check on" Joshua. I will continue to read about your journey for as long as you will post. Please know, Joshua is making a huge impact on people...even people who he will never meet face to face.

  59. I think that you are wonderful. Your baby is so blessed to have you as his family. I pray for you and for him. God is so good. He does do things for reasons we will never understand. In this case it is for my heart and soul being restored because of your beautiful family. A long time ago I had a baby with a birth defect. Praise Him it was fixable, but none the less I felt responsible.
    Dearest Susie and Matt, my heart, my thoughts and prayers are with you.
    God has picked you to be blessed. How wonderful is that!
    I LOVE ya'all and think of you min ute by minute.

  60. I'm an avid reader of your blog and I pray every night for little Joshua and your family. He has had a huge impact on my life - in that I cannot take it for granted. I have tried to live it fuller when I start thinking about Joshua. My heart does drop each time I see a new post in my google reader. I can't imagine what you are going through right now, but you have so many people around you who love you and will be able to support you through that difficult time that will come.

    That list of things he has done in his short life is HUGE! Especially since you didn't know if he'd survive this long.

    I commend you for putting this all out there. I pray for support and love abound for you and your family. God has blessed with you all with a special person!

  61. You and your family are going through ever parents nightmare. I am amazed by your strength and courage I honestly don't know if I could do that.

  62. Be as stark as you need to. This is your blog. Share anything you need to without worrying about how the readers will take it. You're doing to hard part, we are just witnesses and we have the choice to read or not, but you don't have a choice since this experience is yours, no matter what.

    You have excellent instincts and you know your time with your precious son here on earth is coming to an end soon. It's easy to panic when dealing with a situation that is so out of your control and when your very heart is being ripped away. Each time it gets to be too much, ask God to carry you and He will, I promise you, then you'll be able to take a few more steps on your own again.

    Stay strong for Joshua and Oceana, but let others carry everything else. Don't be strong for the readers in cyberspace, we'll be strong FOR you.

  63. Blogger just ate my comment, I think. Ugh.

    Amoungst other things said, I felt God telling me that He loves you dearly, and He is so proud of you. He is carrying you through this even when you feel you are so alone. He goes before you also, and at the end, He is already there waiting. He holds you all close to His father heart and whispers new strength to you each new morning. I see Him cradle your face in his hands and look lovingly into your eyes, then draw you close to him, kiss the top of your head and hold you in a bear hug while you sob heartbrokenly. He wants you to run to him when the time comes. He will catch you when you feel you are falling. This is not a shock to Him. Satan did not suprise Him with a curve ball. This will bless you, as you have proved faithful, as painful as it is and how cruel it sometimes seems, you are so blessed for being Joshua's mother. God loves you deeply. He has you hemmed in. You are His precious child, and He feels and understands your pain. You can trust Him.

    I will continue to pray for you without ceasing. Is there anything more I can do for you? Do you need anything I can send you? Postage from Australia isn't bad.

    You are loved world-wide and covered in prayer. We are storming heaven on your behalf, dear heart, so when your own prayers seem alone and exhausted, know there are many, many others going before the throne on your behalf.

  64. Susie.......I think you forgot to add one thing to his list of experiences - he has been loved by strangers from around the world. And although we (the strangers) will never get to meet him, he has touched our lives deeply.
    I check your blog every day. Every day, as the page boots up, I hold my breathe and pray. Pray for another day of stories about Joshua. Pray for another day of pictures. Pray for more time for all of you to spend together as a family. I know my heart will break on the day I visit and find that he has passed. But please know, even if he isn't here on earth, he'll always be in my (and I'm sure many other peoples') heart.

  65. GIRL, are you kidding me? Has Joshua's life impacted mine? More than you will ever know! Some eight months ago, I gave birth to a beautiful and seemingly perfect baby girl. There is still no name for the way her little brain formed to make it possible for her to go to Heaven in five days. To SEE, every day, your little man not fighting to live, but thriving and to know he's been NURSING at HOME with NO oxygen?! That is the Lord!! Give Him the glory He deserves and He has performed one after another in every solitary moment of your son's life. More than most people make in a lifetime, has his little left had impact! He is a fine little missionary. :) I praise God for him. For letting Joshua Sams defy the odds and remind us how powerful his God is. When little Joshua's chains are broken and he is free to dance with his Maker, your heart will be broken, but it will dance, too. I know because I've been there. And I'll be there to pray you through. And your boy will be waiting when your time is over, too. You love Joshua well and you will honor the amazing legacy he leaves behind well, too. Thank you for sharing him with all of us!

  66. Susie-
    Just wanted to let you know that Joshua's life and your example of faithfulness and trust in God has impacted me and my family. I do understand what you are going to experience with the loss of dreams as I have lost 6 dear babies through miscarriages. God has been gracious and blessed me with two sweet miracle girls that are aprecious gift and bring a smile to my face each day. However there are times when I forget just what a wonderful miracle my girls are you know the times when they spill something on the floor for the millionth time or when my three year old accidently poops her pants. Reading your blog reminds me not to take my girls for granted to appreciate every second I have with them and to love on them even when they are making me pull my hair out.
    I enjoy reading your blog each day and am so thankful the memories that you are able to make with Joshua. May God continue to bless yo and your family, may you and your husband draw closer to one another and to your heavenly father during this time and may God grant you amazing peace when he finally takes Joshua home to heal him. Until then enjoy each moment. I am praying that Oceana gets better soon.

    Rachel in PA

  67. Even today I had a conversation with Brian's roommate (non-Christian) about how I am AGAINST abortion in all circumstances. It is a woman's choice, but there should be limitations such as encouraging women pregnant with babies at risk for bith defectives etc. And I told him about Joshua, how you stood by him and he has lived beyond normal and how no one has the right to tell anyone they're not worthy of being born or loved. He really took it to heart and agreed. I'm so glad I know you guys, this brings the point home that EVERY child, no matter what, deserves a chance and mummies and daddies have the FULL capacity to love any child, no matter what the circumstance.

    Standing with you in prayer,
    Kristin (and Brian)

    Ps. Matt, Brian is going to the Big East tournament at Madison Square Garden tomorrow! GO UCONN! (He's a 'Cuse fan, we're a match eh?!)

  68. Susie -

    Last summer, my sister was faced with a second lung transplant. Her lung function had fallen below 10%. She sent out an email, not knowing what the future held. Her words from the ICU made all the difference in the world to me. Here they are ...

    What now? We wait. We pray. We laugh. We cry. I have a lot I can say right now, but it's late. Don't worry, we're going to get through this. God has got this, I just have to be brave enough to let go and let Him carry me again and again. One thing I know for sure- I am surrounded by angels and prayers and no matter what- I'll be just fine.

    I have no idea what you are going through and I can't begin to imagine. But I do know that you, your baby, and the rest of your family are all surrounded by angels and prayers. You'll be in mine.

  69. Your sweet baby boy and your story has been such an encouragement to me! You have blessed me in so many ways.

  70. When my son was born and needed an above knee amputation, I was so sad. I stopped going to church and lost my faith and belief in the power of prayer.
    This brings me to 2 years later, and I found your blog a few weeks ago. Joshua has helped me see the power in prayer. We go to church again adn pray everyday for your family.
    I now dont take anything for granted. I cherish ever single mud pie my son hands me in rain storms. I smile as I clean up water spilled all over hte floor.
    Thank you for showing me what is truely important. God bless you all

  71. Susie: I read your blog daily and pray for your family. Your mother's love inspires me, a mother of 4 grown children. I am proud of you and thankful for the blessing of Joshua. He is a picture of how we are supposed to be. Joshua rests confidently and securely in your love and in the assurance of your care for him. We should be the same way with our Heavenly Father. Joshua has taught us a lot...starting with, "Be still and know that I am God."

    Love from Karen in TN

  72. I only stumbled onto your blog a few weeks ago, but I've been reading it ever since. I keep hoping, despite everything, that some miracle will save his life. It's so hard to look at such a beautiful baby and know he won't make it very far.

    Joshua reminds me to hold my little boys a little closer, to remember that while we can't choose the difficulties placed in our path, we can choose how we respond to them.

    My husband is in the US Navy, which has presented a lot of difficulties that have been especially hard to navigate after our oldest son was born. But sometimes you just have to make the time you have count, no matter what. Thank you, Joshua, for reminding me of that. I will miss hearing about you when you are gone, but I will never forget you.

  73. Susie,
    I have been reading your blog for a while now and I want you to know that Joshua, as well as your strength, has toughed my life. You are helping me to heal from the recent loss of a baby that I never got to meet alive. Everyday you get to spend with Joshua is such a blessing and I pray for your family daily. None of us know why things happen the way that they do, but I admire your courage and strength to share your story and make a womderful impact.

    In Him,
    Jenny from Nashviile

  74. Susie,

    I don't even know what to say. I've been thinking of you and praying for you (& Joshua and family, of course) often. My heart aches but I know not as much as yours does. May the Lord give you strength and courage to face the next few weeks whatever they hold. Snuggle Joshua for me and give him a kiss. What a sweet boy. He's changed many lives. I don't think you'll ever know how much.


  75. I can't even begin to imagine the ups and downs you and your family have been going thru over the past months... But I do know that each moment is a blessing, and that Joshua is beautiful and loved... thank you so much for sharing this journey ♥

  76. Susie,

    It's not just the impact Joshua has made on my life (he is truly a precious miracle and a testimony to the beauty of life). Even more, it is who you are in the midst of your unbearable circumstance. I cannot imagine what it is like to live with the crushing weight of knowing you will lose your child here on this earth. Yet you are living out (before the world) the actuality and truth of the grace of of God. He gives you perspective, grace for the moment and wisdom. Thank you for being honest and real with all of us readers. You are proof that the God of of theology is also the God of our reality! You are a true testimony!

  77. I stumbled on your blog a few weeks ago and didn't save it on my favorites. A few days later I couldn't get Joshua off my mind so I found your blog again and this time I saved it. Now I check and pray several times a day. Joshua's life is so beautiful to me. I was so excited when the fenugreek (?) worked and he started gaining weight. God is so evident in all of you. I am praying and thinking of you lots and lots.

  78. I came across your blog today. I am amazed by your courage and strength.
    God bless you,

  79. Hi Susie. I learned about Joshua's condition when you posted about breech natural births in the Natural Birth forum over at Babyfit. I've followed your amazing journey ever since, and I wanted to let you know what a blessing Joshua and your family have been to me. I can't tell you how much I admire you for the witness and testimony you are giving the world. You are in my prayers and thoughts daily. May God continue to bless you and Joshua.

  80. Susie - I wish words could do justice to how much Joshua's beautiful life has touched mine. thank you for sharing your journey and your miracle boy with us - it means more than I can say. We're praying for you all.

  81. Your blog was highlighted on a messageboard I post on. I read your postings and have to tell you that Joshua's life has affected mine as well. Reading about his life has made me realize how precious every second with my daughter is. We tend to dwell on the negatives & because of that we sometimes miss out on things we should be appreciating. You have given Joshua so much love in his little life and I'm sure he can feel it--it has kept him going for so long! We will continue to keep your family in our prayers.

  82. Amen! May God give you the strength and the courage to trust Him completely through the valley and to realize that He alone is your Joy. We're praying for you!

  83. I am so sorry you have to go through all of this. I don't understand why good people have to lose such sweet little children. My older sister and her husband just lost their twin boys who were born preemie at only 23 weeks. They faught and lived for 12 hours before getting their wings. Anger is normal and none of this is fair.

  84. That's it - a lifetime worth of love. And I'm sure your love for Joshua grows stronger with every passing minute.

    Thinking of you and your family. Little Joshua is just gorgeous.

  85. I just found your blog today. You're in my prayers. Your complete faith in such hard...I just can't imagine losing a baby (my miscarriage was hard but harder still would be meeting and holding one and losing) but your faith and grace in accepting and loving him anyways is a great witness to me.

    Thanks for sharing, I am sure it must be hard.


  86. You are a very strong person. I lost a daughter at 7 weeks of age to SIDS on her daddys birthday. Losing a child is the worst pain I have ever felt in my life. I am praying for you and your family.

  87. I want you to know how absolutly amazing you are. I am looking at this thousands of miles away in Washington State, and seeing how God is working through little Joshua's little life. YOur amazing faith is touching so many and reaching many people who must be wondering the source of your amazing strength. It is obvious to me, a fellow Christian, that God is your strenth, but to others, they may be wanting to know more of how you do it. You are changing lives with your story and with your son's precious little life. It makes you so much more aware of the ultimate sacrifice that God gave us by giving us His only Son. You are truly amazing.