Saturday, March 8, 2008

A few comments

"She asked why this happened to her.... I told her God doesn't "allow" these things to happen, but His promise is to be there to help you and pick you up when you fall. You obviously live by this mantra every day."

I know some of you don't believe in God the way I do. Some of you probably wonder why God made this happen to me - if He's such a "big God" like we [Christians] say He is. Some of you may scoff at the idea that God blessed me with Joshua - a child with a fatal condition.

But I want you to know that God - "...doesn't 'allow' these things to happen, but His promise is to be there to help you and pick you up when you fall..."

Thank you ~commenter~ for reminding me.


I've been thinking of sharing this with you all for a while. I've needed to wrap my head around it before I wrote though.

This is a first attempt and may not be quite what I want to say: so excuse it please.

Joshua's body isn't perfect. Medically speaking, his brain herniated through his malformed skull and scrambled the contents in the process. His skull grew too small. His spinal fluid pushes the membranes of his ultra-thin skin taut. This will cause his demise. He has a fatal birth defect.

But Joshua is more than just a body. Every human being has a body, a soul, and a spirit. What I find most encouraging about Joshua's situation is that he does not have a defect in his soul. He does not have a defect in his spirit.

I can be assured that Joshua knows who I am. Perhaps not in his cognitive brain - but his spirit will recognize another spirit. The Bible says that everything with breath praises the Lord - my son has breath. But his body cannot praise God - His spirit can though. And I stand on that belief - that my son's spirit is perfect - not defective like his body.

I am amazed and blessed to know that my son's spirit isn't defective, or his soul either. And that's the part that's important. Everybody's body fails after a while. Joshua's just failed earlier than most. His spirit won't fail though. Thank God for that.

Living on in eternity's not such a bad thing. In fact, it's perfect. It just sucks to be the ones left behind in the wake of a defective body.


  1. I believe we will have the opportunity to be with those we love again; and they will be whole. And those children that we lost we will be able to raise as we would have if they had survived. So, your words resonate with me. I look forward to someday meeting my grandmother on the other side and introducing her to my kids. She will be cancer-free, and all will be well again. That thought gives me a lot of comfort when I think of the time I wish we had had.

  2. Hi Susie,
    Every now and then people blow your mind. I was going to leave a comment after reading how angry you were when meeting that other mother but your wisdom is far greater than any comment I could leave for you.

    Therefore may you simply be reminded, God does not give us anything we can not endure, Joshua needed strong parents (and that does not mean to say you have to be strong all the time - God is always right there with you), God knew exactly where to look for the right parents for Joshua.

    I admire your wisdom to see Joshua for more than his physical human body, many parents go through thier entire lives without realising or seeing their child's spirit.
    May God continue to bless you and your family abundantly,
    Love to you all,

  3. Dear Matt, Susie and Oceana,

    God knew Joshua would need very special earthly parents and big sister and that's why He chose you. He knew Joshua would have vey special needs and He needed parents who would care for Joshua in a very special way.

  4. I've visited your blog before, and one time tried to leave a comment, which didn't post?

    I hope this comment post.

    Your post is so on the mark! WELL, well SAID!

    My sweet nephew Hayden-son of my dear sister suffered a brain injury during birth, and also had congenital brain abnormalities.

    My family is SO BLESSED and THANKFUL that God chose us to be his family, and I am so thankful he chose my sister to be his mom.

    May God continue to Bless you and your family abundantly!

    In my prayers...

  5. I probably have never commented before I have no idea. I am not a big commenter.

    My son was born 15 weeks early and spent his whole 8 1/2 months in the NICU. I was talking to my friend earlier and we were talking about Johnathan. I always saw Johnathan for himself. Not the broken human being that he was. The tubes the wires. That wasn't my baby. He had this little personality that shown through. Even when he was only 2lbs. I can understand what you are saying about just seeing your child. Your child is not a diagnosis. He is a human being. His name is not encephalocele. Itis Joshua.

    I really got upset when I would take family members up to see my son. They would focus so much on the wires and tubes and such and not focus on the sweet child that was attatched to all of them.

    He was never wire or iv free except the day God called him Home. I wouldn't change anything about my experience with my son. All of our prayers were answered. We celebrated every day and every accomplishment. My faith had grown so much because of Johnathan. Or rather I should say I found I actually had faith. I trusted every decision the Lord made with him.

    God was there he has picked me up several times and will pick me up several more time concerning my son.

    He is there for you as you know and there will be days you get mad and angry and just totally can't deal with everything and God is right there saying take my hand dear child. You just have to accept it. Sometimes I did, Sometimes I didn't. It was the times that I didn't that I suffered the most. I wasn't at peace.

    This is getting lengthy and I tend to ramble.

    And I just wanted to say I understand.


  6. Okay this one is even more awesome. You will have MANY chapters in your book. You are so precious and I love you so much!

  7. That was absolutely beautiful! And Joshua is a beatiful baby boy! Thank you for sharing your faith with all of us and reminding us of the Truth.

  8. It is because of your love and wisdom that Joshua has done so well for so long. Don't ever give up on him, YOU have made his life so amazing, thank you for sharing you wonderful son with us!

  9. I hope you don't change that at all. Perfectly put! My baby Cousin had trisomy 18. She was the most beautiful baby I have ever seen. She simply glowed, even though her skin was as pale as a china doll. The Spirit shines through. her spirit and God's, as surely the Holy Spirit is resting in these babies.
    Joshua knows who you are. He just can't express it. Your smell is a comfort to him.

  10. I'm sure you have heard this song before but when I read your post this song came to mind! Praying it blesses you as the many times over it has blessed me when facing situations we don't understand!

    Love you guys!!!

    PAM and Family


    Two months is too little
    They let him go
    They had no sudden healing
    To think that providence
    Would take a child from his mother
    While she prays, is appalling
    Who told us we'd be rescued
    What has changed and
    Why should we be saved from nightmares
    Were asking why this happens to us
    Who have died to live, it's unfair

    This is what it means to be held
    How it feels, when the sacred is torn from your life
    And you survive
    This is what it is to be loved and to know
    That the promise was that when everything fell
    We'd be held

    This hand is bitterness
    We want to taste it and
    Let the hatred numb our sorrows
    The wise hand opens slowly
    To lilies of the valley and tomorrow

    This is what it means to be held
    How it feels, when the sacred is torn from your life
    And you survive

    This is what it is to be loved and to know
    That the promise was that when everything fell
    We'd be held
    If hope if born of suffering
    If this is only the beginning
    Can we not wait, for one hour
    Watching for our savior

    This is what it means to be held
    How it feels, when the sacred is torn from your life
    And you survive
    This is what it is to be loved and to know
    That the promise was that when everything fell
    We'd be held
    [Repeat Chorus]

  11. Half a Heart--Author Unknown

    It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born.

    One of the sweetest angels say to Jesus "I dont want to leave, I like it here, and I will miss you".

    He reassures the scared little angel that everything will be okay, and that he is just going for a visit. He is still not swayed on this idea. So Jesus kneels down, and says "how about if you leave half of your heart here with me and take the other half with you, will that be okay?"

    The angel smiles and says "I guess that will work".

    But the little angel is still a little scared. He asks "will I be okay with only half of my heart?"

    Jesus replies, "of course you will, I have other angels there that will help out, and you will be fine."

    Then Jesus gives the angel more details about his plan, he says "when you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". Enjoy your time with your family, play and laugh everyday and when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."

  12. May God continue to fill you with wisdom and the truth to share it....all for His glory!

    I love the picture of the three of you at the beach, it is priceless!

  13. Susie,
    I'd like you to know that I am so inspired by your strength and wisdom. I can not imagine being in your shoes and how painful it must be, but your faith in God is incredible!! I'm praying for you and your family, I'm a firm believer in the power of prayer and know that God has many blessings to come for you and your family- even with your baby's condition. I am humbled and brought to tears every time I read your blogs and it is a big reminder to always be thankful!
    God bless you and your family and stay strong in your faith in Him!!
    Bri Schleiger (from Jan08 on babyfit)

  14. Susie~

    I recently found your blog....I must say, I'm totally blown away! Not that age is any precursor to how mature or immature you are, but in your situation, you strike me as incredibly mature. Your words have touched me. I read back through several of your posts and am struck by the maturity and trust in the Lord you show. I tell you, when I was 22, I was NOT like that!!!!

    How God has changed me!!! And I imagine, how God is changing you too.

    I just want you to know that your baby boy is incredibly beautiful. He's got beautiful lips, beautiful skin, a perfect nose, gorgeous are so blessed.

    I'll pray for you to be able to continue to trust, even when it looks like the end. I myself have found that God has great mercy and tenderness, and is intensely present with moms who have lost babies or have a terminal diagnosis for their babies. This has been my experience, and I think you have noticed that too!

    Press on. You can walk this path. He gives great strength along the way, doesn't He??

    God bless you!

    Leanne In Longview WA

  15. This post is perfect and beautifully written. Joshua is perfect in Gods eyes and I think he is so precious. His spirit and his soul are beautifully and wonderfully made by God. How wonderful it is to know that he feels your love all around him. He smells you, he tastes your milk, he is bonded to you. He will never know cruelty and sin, he is an angel of God placed in your loving care. How good is this? And you are so right Susie, it does suck to be the ones left behind in the wake of this but I know that the God we trust will be the same God that will bring you through when that time should come. Until then, soak in the pure love that Joshua is teaching you. I pray for your daily strength and blessings. You bless me.

    Love, Laurie in Ca.

  16. He does have a perfect and whole (and beautiful, may I add) soul and spirit, and when God calls Joshua to heaven, I have no doubt in my mind that God's going to say, "Well done, My good and faithful servant!" Joshua has touched so many people and it's all been for God's glory and the furthering of His kingdom. I'm praying for you guys!