Remember “Hard is Not Bad?”

July 21st, 2010

“And my God will supply all your need according to His riches in glory by Christ Jesus.”

When I flip that thought around, it tells me that we can find out what we truly need by looking at what God gives us.

Right now, God has decided to give us “hard.”  And I am finding out that not only is hard “not bad,” but it is downright GOOD.

It is good because it is exactly what we need, and it is coming to us directly from our Father’s hand.

He says to me, “Therefore do not cast away your confidence, which has great reward.  For you have need of endurance, so that after you have done the will of God, you may receive the promise:

‘For yet a little while, and He who is coming will come and will not tarry.  Now the just shall live by faith; but if anyone draws back, my soul has no pleasure in him.'”

There is goodness in the hurting, and there is goodness in the breaks between the hurting.

I want to learn to welcome ALL He chooses to give me, including endurance training!

Some of the hard providences I experienced~

~Verity’s night nurse was a girl with an attitude, and no mistake!  It is next to impossible for me to ask for help from anyone who sends me chilly or resentful vibes.  I felt more like apologizing for our presence than asking her for any help.  My heart just sank the second and third nights when I saw her again.  I would have said that I needed extra nursing support and help through the night hours, but God said otherwise.  And He reminded me that He was more than sufficient for all the emotional support I may have needed.  And gave me the gumption I needed by the third night to ask for what Verity needed.  I will be absolutely open and say that I couldn’t help but think that this nurse might be one who would see a little girl with Down syndrome as a joke, to put it as bluntly as an experienced new friend did.  This friend has two little girls with Down syndrome.

~The sounds of other young patients in pain were difficult to hear.   That included the moans of the little guy on the other side of our curtain who had a serious neurological disorder.

~There seemed to be an endless stream of people who wanted to come into the room and discuss things with me.  Let’s see, there was a patient care coordinator, a lactation consultant, a speech therapist to help with Verity’s feeding issues, someone from dietary, the team of pediatric cardiologists, or sometimes just one of them, or sometimes a woman who was in training to become one of them.  It began to feel like I couldn’t go down the hall for ice water, or carry the pumped milk out to the nurse’s station, or take a shower, without inconveniencing these nice folks who were just trying to do their job and needed me to be waiting for them in my room.

~Someone from cardiology would come in first thing in the morning to check on Verity, and to say that the cardio team was coming in around 10:30 am.  This time came at the end of a feeding cycle, and would have been a prime opportunity to get a shower.  But I felt like I needed to wait for the team, which resulted in me feeling at a definite social disadvantage in all my sweaty and disheveled glory when this team of six or seven professionals would finally show up at any random time between 11 am and noon.  Yes, this is vanity, and yes, my vanity needs this humiliation.

~There was no sink in the shared bathroom.  The sink was on my neighbors’ side of the curtain, and it didn’t have hot water anyway, so every three hours when I needed to wash bottles and pump parts, I had to walk a distance to the patients’ kitchen.

~I also had to take all my pumped milk to the nurses’ station, which was not close to our room, so that they could freeze it.  When I needed some milk for Verity’s feeding, I had to plan ahead to go ask them for it, wait while they retrieved it for me, and get it warmed and fortified in time to give it to her.

~The dreaded NG tube itself.  I had to swallow my tears many times that day and remind myself that this is the new ideal that God has chosen for us, and He doesn’t make mistakes.

~The first time Verity got her NG tube, the nurse didn’t cut enough space out of the “mustache” tape for her little nose.  By that evening, the tape had come unstuck and kept moving up over her nostrils, adding this further insult to her nasal congestion and NG tube injury.  As soon as she would start to wake up, she would go into a panic, gasping for breath and arching her back.  This was the last night we were at the hospital, and the lowest low for me, emotionally.  I did ask the nurse with the ‘tude to replace the tape, but I waited until I could do it calmly, with dry eyes.

~The first two nights, I could keep my eyes open enough to sing to Verity from my hymnal while I fed her.  But by the third night, I kept jerking awake over and over again while giving her the bottle.  I was afraid I would fall asleep soundly enough to drop her.  I did not ask the night nurse to handle the feedings, because I did not trust her to love Verity.  I am positive that babies can pick up on that sort of thing. That night, the little sleep I got was interrupted by a new patient being brought into the other side of the room, among other interruptions.

~All this sleep deprivation is once again resulting in the aches, pain, chills and fever of mastitis.  For the time being, I’m keeping the worst at bay with Ibuprofen.  This time, my milk supply is taking a hit, too.

Some kind providences the Lord has granted~

~All the kindness and concern that was shown to my little baby by nearly everyone who came in contact with her, down to the gentleman who came in to draw her blood every morning and crooned to her throughout the whole process.

~The IV Lasix worked!  We feel like we have our baby back!

~The visit on Sunday from a close friend with a large quantity of good food to keep me fortified without the need to buy the hospital meals.  I ate well, my friend, thank you!  I’m saving what’s left of the non-perishables for the next hospital stay!

~The kind nurse on duty that day who talked my directionally-challenged friend to the closest parking garage and entrance.  She gave me her badge and told me she’d hold “our baby” while I went down the nurse’s elevator to meet my friend to guide her and her three littlest children back to our room.

~The text message this good friend sent to me after she heard the news that Verity was getting the NG tube.  It brought me to tears both then and when it came back to my mind later on that difficult night~

whoever welcomes this little child in my name welcomes me…for he who is least among you will be the greatest. luke 9:48

~I was utterly blessed to witness the pure, sacrificial love and care that my room neighbors gave to their very needy little boy during the hours I observed them.  And I told them so when he was discharged Monday and we said goodbye to one another.

~The set of CDs containing soothing praise music that another friend left with me almost as an afterthought.  I knew enough of the words to be able to sing along, both during the times when my eyes were streaming with tears, and during the times of peace.

~The huge box of fresh blueberries from this same friend.  They are now neatly packed away in the freezer, thanks to Daniel, the current Kitchenmeister.

~Contrary to what Joseph had thought, and posted, I was not able to be online at all while at the hospital, so I was not reading any of the notes of encouragement many of you sent during that time, by email, here on the blog, and by private online messages.  That last night, when Joe called, he read them all to me.  Every single one.  Friends, God used your words to minister His love to this worn-to-a-nub mother that night.

~Two different times, one of the kind nurses found an unwanted hospital meal and brought it to me at no charge, because she hated to see it go to waste.

~The direct answer to prayer I witnessed.  I asked my friend to please pray that the staff would be successful in drawing blood from Verity, after just one more of many unsuccessful attempts.  The very next time someone tried, she was successful right away!  This will be an ongoing request, as Verity will need bloodwork done weekly as long as she is on the Lasix, to check her electrolytes.

~The pleasant conversation my new roommate and I had Tuesday morning through the curtain.  He was 16 years old, Joseph’s age, and had just been diagnosed with Type I juvenile insulin-dependent diabetes.  I heard him tell the nurse that he was a volunteer counselor for a Christian retreat center.  He also heard my friend’s praise music playing and approved of it.  He was a Christian, and refreshingly courteous, using ma’am and sir to anyone he spoke with, including his father.  Our short conversation was about why we don’t need to fear any circumstance God might bring to us.  Later that day, while I was dropping Verity’s NG tube for the first time, he was over on the other side of the curtain giving himself a shot of insulin for the first time.

~A childish homemade card that the daughter of a visiting friend gave me.  My friend apologized for its general condition, but there was a little sticker on it of Jesus holding a young girl on His lap.

~The offer from Joe’s aunt to give the boys haircuts again, despite this being a very busy season for her.  The older boys especially have been asking me for a couple of weeks when they could be de-shaggy-fied.

~The voices of my family downstairs this evening singing hymns in harmony during Bible Time.  It rose up like a sweet aroma to me.  I am thankful for the reports of our older children pitching in willingly to help the family.  We can watch them grow more competent as the days go by.  We are tickled and amused to hear the Pennsylvania Dutch that they are picking up from spending so much time with our friends, who were formerly Amish!

~My dear husband, who is washing up the bottles, syringes and pump parts for me this time so I can finish up this post before the next feeding cycle begins.  His back rub and prayer for me just now that my infection would get better and not worse.  The hot compress he made for me from a ziplock bag and hot, wet washcloth.  The love.

~The sweetness of the little fuzzy head that bobs against my shoulder.  Those Verity-eyes, looking brightly into mine again, now that the new regimen has given her some energy back.  There is so much joy in caring for this little one that it does not feel burdensome.

~The inside knowledge that what looks so impossible is not impossible, if God is accomplishing His work through me.  Knowing how I respond to serious sleep deprivation, who would have thought that my heart would be singing during this time instead of needing to be put on anti-depressants?  That is a work of God from first to last.

To HIM be the GLORY!


I got a few pictures before our camera batteries died!

This was taken Sunday night, snapped by Joe while I gave a phone report to Joseph.  Note the wagonful of food from my friend!

The last picture of her before she received her NG tube~

Worn out from the nurse-in-training’s attempt at putting the feeding tube in, with a poor taping job~

I think she holds her head like this to help herself breathe better~

The little nest I made for her to keep her from rolling over and putting her face against the sidebars~

The very appropriate view I had of her crib from my cot~

We took this one after we arrived home last night.  We plan to keep a visual record of her weight gain. :-) Eight and four tenths pounds converts to the rounded number of eight pounds and six and one-half ounces.  This picture shows the second NG tubing attempt, this one put down by me.

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24 Responses to “Remember “Hard is Not Bad?””

  1. Thank you, bless you.  I needed to read this tonight.  Praise God, He knows what we need when we need it.  HARD.   Thank you!
    Verity is so beautiful, she still takes my breath away.  I am praying and sending my biggest
    Love you friend,

  2. Ruth Einfeld says:

    You are doing so well in such difficult circumstances…your post brings back so many memories…
    I am so glad you were able to come back home so quickly with her and that you were able to place the tube yourself…way to go mama!
    I am praying for you – for strength, health, and restful sleep.

  3. She is so, so precious. Tears and prayers.

  4. Denise says:

    Speechless, tears and prayers……

  5. cindy says:

    You are an amazing mom and child of God.  Your insights challenge each of us.  Praise God for His sustaining strength for you and Verity.  I’m sure you showed Christ to all those at the hospital, even her with the ‘tude.  He will meet your needs, to Him be the Glory!!!!!!!!!

  6. greta says:

    …hard, YES.  defeated, NO!

  7. Colleen says:

    What a beautiful update… and a beautiful girl. We continue to pray for all of you, and especially for your sweet miracle baby. God bless you all.

  8. Joy Horton says:

    Susanna – I started crying as soon as I read your title and haven’t stopped since. Your faith is SUCH a blessing to me. It is so beautiful and simplistic – not complicated the way so many make things, like taking our lives into our own hands, but FULL submission to the Master Potter. Thank you for all of the years you’ve IMMERSED yourself in the Lord and His Word, to be ministering to all of us “out here” through your trial.

    I love you, Susanna – and the “fuzzy little head that bobs against your shoulder” sweet Verity. Thank you for the pictures of her. She is SO precious and it’s hard to believe how much I can love someone else’s baby, but I do!

    Praying for rest for you, grace through the HARD, and for precious Verity. Thanking God for the diligent training you and Joe have done of your children and seeing them rise up in service during these times.

    You all bless me SO!!!

  9. jennifer76 says:

    Susanna, I am in awe of what the Lord is doing in your lives.  I am so blessed by your faith.  Hard is so true.  As I sit here feeling pity for what we are experiencing now I am so humbled as it pales in comparison.  I enjoy reading your blog so much.  I am so thankful that Joseph continued it when you couldn’t.  Continued prayers for your family, my friend.  We take turns leading in prayer each night and my children have been praying for you and Verity and your family.  (((hugs)))  Verity is so beautiful and each picture I see I just want to pick her up and cuddle her :).

  10. Betty says:

    I have read every post on your blog here.  I am praying for you dear friend.  I remember you prayers and words of encouragement when both Hannah and Isaiah were sick.  (((HUGS))) and I know you are doing a great job.  You are blessed to be Verity’s mom and she is blessed to be your daughter.  Praying for some much needed rest!!!

  11. Wanda says:

    Dear sister you know how much we love you and I cant think of the words to describe how beautiful she is when I look at her .Such a beautiful blessing from the lord and has been given perfectly to your family. You are a wonderful mom!! I love you

  12. Lyn (Lynan) Castonguay says:

    smart, sweet, beautiful girl.  the pic where you say she holds her head like that to breathe better –just heart wrenching. 

    You are definitely in the trenches and handling it with grace and obvious God-given strength.  (((hugs)))

  13. April Hardwick says:

    Susanna I have no coherant words right now but your post came at a much needed moment for me. I love all the new pics of her, she is just gorgeous.

  14. Youngwife says:

    Such HARD things are the very thing that the Lord uses to shape and mold us to be conformed to HIS image.  Your sweet smile and faith in our Lord is a testimony to the Holy Spirit’s work in your life.
    May He bring the comfort and strength needed for the days ahead, and draw you close if your heart should grow weary.
    With Much Love In HIM, and with prayers on your behalf,

  15. Stefani Heustis says:

    Susanna,  I remember well how hard the early months were with Naomi while her father was dying…  I remember asking God why things had to be SO HARD!!!  I am finally far enough away from that now to see the footprints in the sand, now that Naomi will be starting Kindergarten this fall.  I remember with tears in my eyes as I do at how hard the first six months with Sarah was as she wore oxygen every day, had lasix doses twice per day, was failing to grow and FINALLY hit 8 lbs at 5 months old.  I remember taking her in for her open heart surgery and having to surrender my baby girl to the Lord knowing how very easily He could take her home in those moments and knowing the risks.  She was on heart and lung bypass for nearly 5 hours and that is a very long time for a baby that small.  The days now aren’t so hard.  I pray I never repeat thos seasons but I wouldn’t trade them for anything.  The precious hand of God is seen clearer in those moments than at any other time in my life in a moment by moment basis.  I am so thankful He is showing you that same precious gracious loving tenderness you can’t see any other way.  We are truly blessed Susanna.  We are blessed among mothers!

  16. Stephanie Blanchard says:

    Susanna, I started crying when I read about the nurse with the ‘tude. I can’t imagine how hard that was for you to endure. And yet, you, my friend. Have the most amazing eye for the blessings. I love the pictures and I am praying for you! I’m so glad that you were able to get your words of encouragement- I think it was divinely planned that Joe read them to you! I know Brandon’s voice is so soothing to me and imagine that you get the same effect from Joe’s voice.

  17. Joni (mamabear) says:

    Thank-you for sharing your heart. You are such a wonderful mother and I know that Verity feels your love throughout all of this. I will contine praying and be praying for the needle sticks specifically, and for that nurse too.
    I am just praising God right now for the friends and wonderful nurses that cared for you! hugs

  18. Kelly Y (kyngbld) says:

    Susanna, I so needed to read this tonight! HARD hit me today, feeling like I’ve had my breath knocked out of me. Thank you for putting it into perspective for me!! You are precious as is your daughter and your whole family!! Love, hugs, prayers and blessings to you all!!

  19. Kerry Shealy says:

    Hello!  I was directed to your blog tonight by a friend.  I had no idea what I was stumbling upon, but I am so glad I came here!  Verity is precious.  I went back to read your story from the beginning.  I know it is completely normal to grieve when a child we are expecting is not going to be what most would consider “normal.”  She has Designer Genes!!!  God has created her in His image.
    I have a very close friend who has a biological daughter with Down Syndrome, and she and her husband have adopted 3 more with Down Syndrome, as well as having two other typical children.  Her bio daughter with DS had open heart surgery when she was 5 months old.  Brianna is her second child.  Her daughter, Emma, adopted from Ukraine, had surgery when she was five and many thought she would never survive.  Meredith, my friend, has been where you are.  If you would like to speak to her I know she would be more than willing.  She is a young, godly woman and God has used her in so many ways to help other moms. Please contact me if you would like to speak to her.
    In prayer for Verity, and her very tired, but loving mommy,

  20. Amy (choochie) says:

    I learn so much from you, Susanna.  The Lord has really blessed you with such a precious mommy heart and I love to read your updates like this one!  SO powerful and precious!  And I tell you, that Verity is one of the most adorable little baby girls I have ever seen.  I love seeing the pics of her in all her darling dresses too.
    Continuing to pray for you as you walk this “HARD” path, full of so many blessings and joys as well.

  21. Shari~hotfudgecustard says:

    Eric just came in and saw the pictures and said, “Awwwwwww!”  Such a sweet, sweet baby!  : )  I’m so glad she’s doing better. 

    I am praying for you and your family, trying to do so for each one by name. 

    You are a good witness for the Lord!

  22. Kim Vance says:

    Your daughter is beautiful…all babies are a blessing and special children require special parents…Verity is a beautiful girl and you are so strong to be able to go through all that you have….love on that baby for me..I wish I could hold her and tell her how much love is in the world for her…
    I pray for your family and others like yours every night as I put my little one to sleep.

  23. Tracy says:

    Our family continues to pray for sweet Verity. Blessings to you!

  24. allison (christianmomoflots) says:

    I just wanted to tell you how very beautiful Verity is!!  Also how blessed I am by you.

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