Welcome, Lord Jesus

July 24th, 2010

***Warning:  This post contains raw emotional footage that may be offensive to some!***

Since Verity was born four weeks ago, and came home from the hospital, she has spent most of her time abiding safely in her little home-nest.  Her visitors have only added more love to her life.

She has not ventured out into the big world too much.

Several trips now to the clinic where her sweetness is admired.  One to Grandpop’s birthday party where she finally got to meet the aunts and uncles and cousins who have accepted her as she is.  A jaunt to the pediatric cardiologists’ office, then to the hospital, where she fit right in among other needy children and their caregivers.

My most painful fears when we heard about Verity’s Down syndrome were based on the rejection that our precious baby would receive from others.   It hurt with a burning, stabbing pain to know that others would see her as a mistake.  That they would look on her and despise her.

But I’ve seen very little of that in her first month.  It’s easy to feel lulled to unreality while being cushioned in the safe zone.  It’s not often that I am jolted back to the cold reality of that wide, wide world.

I did feel intense anger the night I watched Verity labor so hard to breathe, rage that there are bullies who have chosen to let their child’s heart defects go untreated because they have Down syndrome.

There was The Nurse With the ‘Tude, which may or may not have been related to Verity’s Down syndrome.  But for the most part our sweetie has been surrounded by love and acceptance.  The ache receded from my heart.

Now several encounters over the past few days have re-opened that bitter wound.  And it turns out that the ugly lies are not all out there in the secular realm.

I’ve been jolted by the reality that many Christians still think about babies from the world’s perspective.  They accept the world’s terms.  When they say a child is perfect, they do not mean, “Fearfully and wonderfully made, period.”  They mean, “Photogenic, gifted, easy, no extra needs.”   Their words betray their true beliefs.

I was forced to face the fact that some of my Christian sisters pray against having a child like mine.  That many of them think, “Yay!  We got a PERFECT, BEAUTIFUL child who is SHARP AS A TACK, and not the kind you got!”  And that their baby born without special needs is a miracle, but my baby with Down syndrome is what?  Not a miracle, I guess, huh?  They do not want a baby who needs more of them than they want to give.

I’m realizing the hardest part for me about the Down syndrome thing is this–other people’s rejection.  Other than that, what is the big ‘ol hairy, scary deal?  Really.  A child who looks different and learns differently.  So?  For a home educating mother of many, this looks like an opportunity for learning something valuable that we wouldn’t otherwise learn.

But now I know that there are Christians who think about my needy child as though she was a burden to bear, a tragedy, a sad circumstance, a hardship, a bitter cup to drink, a disaster on a level with a house fire or a severe drought or a bank failure.  That’s why it hurts inside of me, a mother whose soft, fragrant wee girlie is a human being made in God’s image, when she is discussed as though she were a tragic thing.

Some would tell me, “Woman, grow a tougher skin.  There are plenty of people around who will accept and love your baby.  Focus on the positive and let those other people be wrong if they want to be.  They don’t know what they’re missing.”

That may work for some.  And some may not struggle right at this spot where I am.  They may hurt for other reasons, or not hurt at all.

But that isn’t the way God designed me to function.  And this is the pain He has allowed me to feel.  I cannot just ignore the negatives.  I have to do something with them, find out where they fit with the truth that God has revealed in His Word.  What is the truth that will counteract these lies?  I don’t want to grow tougher.  I want to know what is the godly and gracious way to respond, both to the wrenching hurt inside of me, and outwardly, toward those who are deceived?

“Then a dispute arose among them as to which of them would be the greatest.  And Jesus, perceiving the thought of their heart, took a little child and set him by Him and said to them, ‘Whoever receives this little child in My name receives Me; and whoever receives Me receives Him who sent Me.  For He who is least among you all will be greatest.'”

I had always pictured this scene as Jesus with a typical kid on His lap.  I had never pictured Him with a child who has a face that proclaims her special needs to the world.  A face that will never be acceptable to some people, no matter what pretty hair bow she wears on top.

What does it look like in real life to receive Jesus?  Photogenic social acceptability?

“He has no form or comeliness; and when we see Him, there is no beauty that we should desire Him.  He is despised and rejected by men, a Man of sorrows, and acquainted with grief.  And we hid, as it were, our faces from Him; He was despised, and we did not esteem Him.”

So to receive Jesus, we must be willing to receive one who is despised.  We must be willing to receive one who will suffer rejection, who will not be esteemed.

“Therefore Jesus also, that He might sanctify the people with His own blood, suffered outside the gate.  Therefore let us go forth to Him, outside the camp, bearing His reproach.”

Jesus, we love You.  We welcome You.  If this is where You are, then this is where we want to be, too.

And oh yes…for those who do the despising…

“Father, forgive them, for they know not what they do.”

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31 Responses to “Welcome, Lord Jesus”

  1. Lorena says:

    I think your daughter is perfectly beautiful.  It’s love, after all, that makes us beautiful, and it’s obvious that she is getting a large dose.  What a gift to be trusted with another precious life.  God bless and uphold you all!

  2. Sheena says:

    Beautifully written! Praise The Lord
    Just this evening I have been dealing with a “board blog” of mothers that have “medically aborted” and I have been left feeling broken and weeping for the precious babies. I can’t grasp the concept of not keeping my child. I agree with you on not growing tougher skin but a mind that seeks God for answers and ways to deal with situations like those. I want to educate others and help families see our precious babies for the Perfect Image of God that they are!
    You are such a strong momma and all of your babies are so blessed to have a God Fearing Mom!!
    Please Pray that the Lord gives me the right words to say to those who don’t understand!

  3. amber (internallight momys) says:

    i just wanted to tell you that i am head over heels in love with your little verity. i check your blog probably twice a day hoping to catch a new glimpse of her sweet face, and to hear the latest news on how she (and you) are doing. i am so sorry to hear that you are hurting.

  4. Melissa says:

    I’m terribly behind on my blog reading and just now see that Verity was having problems with her heart.  I’m so glad that she is home again and will pray that her heart remains strong until she is able to have her surgery.

    The fear of rejection is my biggest fear too, and I know with a termination rate of 90% there are probably a few Christians who have decided our kids weren’t worthy to be born, and it breaks my heart.

    Give all your worries and cares to God, for he cares about you.  1 Peter 5:7.

  5. Kimberly says:

    Your sweet Verity has captured my heart and so has your tiredness, your pain, and your frustration. Although I do not have a child with Down’s. I do have a child with serious heart defects. We were told that some children are just given compassionate care as there is such poor quality of life! Quality of life! All life is special, all life is from God. If God sees fit to bring life who am I to determine it should not be!! I can’t even fathom it. Life is not easy with these special lambs, but it is so full and so rich! It comes with great joys and heart wrenching sorrows. I look back over the years and I see so clearly where He carried me. God bless you all as I can clearly see how he cradles you lovingly in his arms right now.  I was reminded of the second verse of the hymn Day by Day
    “Every day the Lord himself is near me, with a special mercy for each hour. All my cares he fain would bear and cheer me, He whose name is Counselor and Powr. The protection of His child and treasure is a charge that to himself he laid: “As thy days, thy strength shall be in measure” This the pledge to me he made.”
    This meant so much to me, as I was so weary and so worn out. I hope that you can find something in it for yourself as well :)
    Many (((hugs))) to you worn out and tired Mama, my prayers are with you and your sweet family.
    MOMYS to 6 wonderful blessings

  6. Janelle says:

    My Emily is 10 this December and I remember how people responded when they heard she was going to have down syndrome and a heart defect.  She had her surgery at 3 months and we faced other challenges along the way but since the age of 2 she has been in perfect health.  She has been a joy and inspiration to those around her.  ALL children are blessings and yes many Christians still have trouble processing that but that doesn’t change a thing.  Like Emily, your little Verity’s life will be a testimony to God’s love and mercy.  Be strong mom and take comfort in knowing that God chose you to watch over one of these special blessings.  ((((((((HUGS))))))))) 

  7. Angie says:

    I just wanted you to know that your sweet & precious Verity has captured my heart as well & I have been checking in daily to be able to pray for both of you.  You seem so weary.  I am so sorry that your Momma’s heart is hurting.  I do want you to know that just in reading your posts, you have challenged me in my thinking as I have never been blessed to know a child with Downs before & could easily have said the “wrong” thing without meaning to.  You are so right that ALL life is special and ALL life is given by God and that one child is never less special than another just because they are different!  I’m so sorry for your pain & pray that God will give you the strength that you need to be the light that he calls you to be.   Your sweet child is truly blessed to have you as her mother.  God truly knew what he was doing when he blessed her with you.  God bless you & her & the rest of your lovely family. 

  8. Ashley says:

    I really like this post! My little sister has Down Syndrome and sometimes our family feels the same way, but we don’t quite know how to put it into words. Would you mind if I posted this on my blog?

  9. stephanie says:

    What a most perfect post to read this Sunday morning. It’s early and everyone is still asleep, so I don’t have to explain the tears streaming down my face to anyone.
    our little sweets are so incredibly perfect. Could you get any closer to holding Jesus himself in your arms?
    Miss Em has taught us so much in her 21months. she has opened our hearts and our minds, turned me and our family into advocates and blessed everyone she has come into contact with. I watch people just melt when she demands their attention or gives them one of her smiles.
    I would love to repost this on my blog. I would link back to you. will not do anything until i get an answer from you. But I would love to share it.

  10. Susanna says:

    Ashley and Stephanie, YES, of course you may.

    And to all of you, THANK YOU for your words of truth and encouragement.

    And Kimberly, for the hymn.  Now the first two verses are playing in my head. :)

  11. TracyMenard says:

    I’m so sorry for the hurt for you and your family. I pray that those who cause it would be changed from meeting you and dear Verity. May the Lord continue to glorify himself through your lives.

    Praying for your rest and strength!

  12. Joy Horton says:

    That is mind boggling to me, that anyone could reject Verity. It cuts to my heart as well, Susanna. She is precious. EVERY baby is!! I don’t get it. Lord, have mercy on the fools who would reject you. And keep precious Susanna’s heart soft and moldable and give her the Godly words to speak to these people that would cut through the marrow to the bone. Thank you for my sister and her heart that welcomes you, every part of you.

    Please kiss those sweet Verity cheeks for me, Susanna. Thank you for the picture of her. She melts my heart.

  13. I agree with the others, I am always so excited to see a new post from you on Google Reader, I *love* seeing pictures of sweet little Verity and her precious face. The picture you posted of her brother holding her is burned on my heart. My heart breaks when I hear she is hurting or suffering in any way. My thoughts and prayers are with you through this difficult time, and when I see pictures of Verity I have the burning desire to take her in my arms and make all of her pain go away, if only it were that easy for us mommies.

    You have a lot of mommies standing behind you and supporting you, and thank you for the reminder for those of us who are ignorant to be extra careful with our words and thoughts, we can be so clumsy :( So much love to you and your precious little girl.

  14. Aunt Erma says:

    What a beautiful little girl!  She’s as precious as can be.

    May the Lord bless you, Joe, and your other children as He does Verity.  Surely, you are an example to all of us.   We love you.

  15. jennifer76 says:

    (((Susanna))) My heart grieves with you that some people, Christians feel that way.  It is unfortunate but this is an example of how many Christians are not only in this world, but of it.  I do think that many don’t realize what their words mean.  I think that you and your family and all those that have surrounded you with love can be a tool used to change this view.  Every time I look at your precious Verity…I smile.  I cannot help it!  Personally, I think she is just adorable as I am sure you do too,lol.  But that is not the only reason I smile.  I smile because even in pictures I can see the love of Jesus in her, in you, in your husband and in your other children.  Don’t get thicker skin, don’t change how God created you to be with your kind, generous, compassionate, sensitive nature.  We are all part of the body.  All of our different personalities are designed to work together.  ((((hugs))))

  16. April Hardwick says:

    Having worked with special needs children and adults for years I cannot even begin to understand people who view them as a burden. Yes they often require extra care but in my experience, any extra care is overshadowed by the abundant love they freely give. There is a joy and innocence that they possess (ESPECIALLY those with Downs) that is sorely lacking in the rest of the population.
    It saddens my heart to think that anyone would reject any of these wonderful little and big people, but especially your beautiful Verity. That anyone would see her as anything but a wonderful and perfect gift from a loving God is unbelievable to me.
    I will pray for your hurting heart today Susanna.

  17. Jennifer says:

    I’m so sorry you’re hurting and so tired. I wish there was some way to help you. Praying is the only way I know of, though, so that’s what I’m doing.
    Dh and I agree that Verity has to be one of the sweetest babies we’ve ever seen! I find it so sad that there are people out there who would abort their baby or not treat them just because of something like this. God doesn’t make mistakes, and everything that He has breathed life into is PERFECT and for a purpose, even in this fallen world. Verity is perfect and sweet, created by God in His image for His glory and purpose. It’s exciting for me to see how He is using her already, so tiny though she is, and how He will continue to use her. You know, He chooses the foolish things of this world to confound the wise, and Verity and other babies with Down syndrome definetely do confound those who are “wise” in their own minds.
    It is such a blessing to see the love you all have for Verity. She is one much loved little girl!
    Prayers and blessings.

  18. Ma Kettle says:

    She IS perfect! I’d feel blessed to meet her! Our favorite babysitter has down syndrome. She has such a way with children and has learned to care for them so completely that they love her and most of the men and women our age who grew up in this valley would say they were ‘practically raised by her’. Her mother is always at hand in case of medical need but Tracy is the ‘second mother’ to all the children in the valley. She’s in her late 40’s now and going strong despite her medical issues. She’s a pillar and she’s perfect for God’s plan as will Verity be!

  19. Laura says:

    ALL children are fearfully and wonderfully made, our Lord does not make mistakes!  We have a niece with down’s syndrome and she is awesome!
    I also speak with experience. My son was recently diagnosed with Muscular Dystrophy.  It was heart-wrenching and I have had many of the same feelings-will he be rejected?  made fun of? not be included?
    I have discovered that the Lord allowed this for a reason and we are now able to minister to people we would have never met before otherwise.  This could become a new ministry opportunity for you and your family!
    Many blessings to you :o)

  20. Kristin says:

    ((SUSANNA))  So well put!  I had a friend loan me a copy of a conservative Christian magazine right after A was born.  There was an entire  section of testimonials of how God had “healed” their baby of Down syndrome.  I was so offended and hurt that these people who advocated having as many children as God chose to give you (so SHOULD value children) thought that my baby had something that needed/required healing.  NOT that there was a sovereign God who chose to give us THIS sweet baby girl.  She’s 10.5 and I still won’t read that magazine, no matter how many momys recommend it.  (Perhaps not the best response I know ;) )
    I do think that often people don’t know what to say.  I think there are struggles all around.  I struggle with being able to admit that A is a much harder child in so many ways than my others (mostly b/c of being non-verbal) because I think that’s saying she’s not a blessing.  And when a mom is relieved that her child won’t have the struggles A does, she’s not devaluing A, she’s just saying that’s not her choice of struggle.  Hard for my mommy heart not to be hurt and offended.
    Still praying for you guys.  There are lots of us who read your blog and love you and love Verity (and wish we could snuggle her).  She has already blessed, encouraged, and challenged so many people in her short life…..looking forward to how God uses her in the future :)

  21. allison (christianmomoflots) says:

    Your post was beautiful, perfectly written. Thank you and God bless you!

  22. Laura (kidsmomofmany) says:

    In the dark of the night, my biggest  and darkest secret fear is that God saw me unworthy of raising a child that was imperfect and special. Is that why my Sofija and Gabriels were taken? Am I unworthy of them? Anyone whom would dare to see Verity as “less than” has never felt the pain of their child, their imperfectly flawed baby, die before them. I feel great pity for anyone who can not see the blessings in all children. I was never one to say “I don’t care what kind of baby I have as long as they are healthy.” I just cared that I got to have a baby at all. Now, my prayer is just that I get a living, breathing baby out of a pregnancy. My friend, our innocence is gone and we know that not every pregnancy ends in perfection. But we are better Christians and mothers to our children for that battle. I would give anything to have a child like Verity instead of the holes in my heart from Gabriels and Sofija. You just ignore all those that pity you. THEY are to be pitied.

  23. sabrina says:

    Susanna, I know what you’re talking about. The world cannot see that His strength is made perfect in weakness. People are ignorant, they do not see. I hope you will continue to let the Lord’s view of things shine forth in your precious little girl.

  24. Kristi says:

    (((hugs)))  I can’t imagine any mommy not fearing rejection most for their child, but I think you hit the nail on the head.  Christ didn’t come (no matter how we portray him in pretty paintings and pictures) as a beautiful, lovely man.  Scripture tells us there was nothing comely about Him, His beauty came from within.  Verity is beautiful, within and without.  ((hugs))

  25. Susanna,
    I am not in anyway making excuses for those who have those who have wrong attitudes, I just wonder if sometimes people have false thoughts out of their own fear.  I know that I do that sometimes. 

    I am thankful for your blessing.  Verity is precious and I admire your faith and your beautiful perspective.  I have learned a lot from it.  I think I HAVE had wrong attitudes and I ask you to forgive me and people like me who have not embraced the beauty of EVERY human being and have been “afraid” of having a child with special needs. 

    I have two boys that are on the autism spectrum and I know that I don’t see them as mistakes even though they sometimes require me to learn a new way to do things.  I do know that the world would probably tell me that it would irresponsible to have more children knowing that they could also be autistic, but I actually (somewhat secretly) love the beautiful way my boys are different. 

    Love and prayers to you, Verity and your dear family.  Thank-you for opening this window into your world and teaching us all to view life through the eyes of TRUTH…  Verity is such a PERFECT name for your sweet darling girl!

    Christina Brown
    (quietchaos from MOMYS)

  26. So beautifully written…  (((hugs))) Verity is so blessed to be in your family. Such a precious and sweet looking baby girl.
    Love and prayers to you all.

  27. Rebecca says:

    “What I wanted to say was “Wait a minute please”,
    What I wanted to say was “Look closer and you’ll see,
    How they are beautiful, and I would not take back a single day.”

    That’s what I wanted to say….” ~Marie Bellet, What I Wanted To Say
    This song used to see me through the years of frustration from people looking down on us for having the family size we do.  I used to want to get angry with them and challenge their thinking…  This song gave me tremendous comfort, someone understood!
    Another quotation:
    “My witness is really just to show up with my kids at the grocery store. For me, that is where the culture war is fought. My music is my way to encourage those who want to rebel against the self-centered misery of our time. To make sacrifices for marriage and children is not stupidity or victimization. It is the noblest thing we do. I want to tell other mothers that they are not crazy or alone. If my music can do that, it will all be worthwhile.”
    – Marie Bellet
    Maybe it’s not clear what I am trying to say, I just think it’s ignorance, and so much more, but it’s not going to ever be Verity that’s got the problem.  She will just shine, like Jesus, and those with troubles, they will show, and not be hidden. 

    Love you,
    Rebecca in Alberta
    ~Mama to my nine precious ones.

  28. Angiedawn says:

    I loved reading this this morning Susanna……I too am in love with your little Verity.I am SO glad to hear that she is gaining weight and will be so happy when her surgery is OVER and you are on the other side.

  29. I agree with you that growing a thicker skin is not how God made me. I believe that makes it easier for us to minister in the waiting rooms and hospitals room, our heart is apparent.
    I am blessed with children that have a genetic disorder. When it is apparent the disapproving glare of outsiders is hurtful. Even through that the Lord can work. Sitting at a MOPS a mom leaned over and apologized to me. She had been a glarer recently, until she realized I was treating my children with a love she didn’t understand. I used that opening to discuss Christ in a very real way.
    Blessings my friend! For health, strength and that the Lord may use this tough time to shine His light through you even stronger!
    God bless
    Heather Laurie

  30. Martha Ochoa says:

    Oh my you just described all my feelings and emotions, If it helps you will get used to it. My Jonathan is friendly and wants to say hi to everyone and even likes to shake hands, for a long time I would get so angry at those people who pretend that they don’t see him and just keep walking but one day I thought it’s their LOSS because my son is such a joy and they walk through life with their negative attitudes not opening their heart to what my son can offer them with just a smile… There are also people who stop and go out of their way to say hi to him and shake his hand and then I believe in the word CHRISTIAN… I still cry in the shower sometimes when I think of him as an adult being discriminated against but for NOW he is the sweetest little 4 yr old and I will protect him from that as long as I can…. Jonathan also had heart surgery recently on July 1st and it is the most frightening thing you will go through as a mom but you will get through it and you will be strong for her and just know that God is with her and will touch the doctors hands and bless them so that your beautiful baby girl will be better in no time…. HUGS :)

  31. TUC says:

    So much good stuff has already been said here… Still I will add my two cents. I went through this same shocker about Christians not really wanting a child like mine. One even told me she aborted a T18 as if there was no problem with that. It all really stung. But as my daughter grew and I enjoy daily the blessing that she is, I have come to accept that not many will ever really know the Verity of the situation :-) Even now during our adoption process it has become clear to me that many who are the closest to us still think my baby girl is a burden and wonder how we can “take on” two more.

    Ah, I am rambling. Welcome to your beautiful girl. I will do a birth announcement for you on my  downsyndromenewmama blog when I get home from Ukraine.

    p.s. LOVE her name.

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