Through the deep waters

March 23rd, 2014

 

Fear not, I am with thee, O be not dismayed,
For I am thy God and will still give thee aid;
I’ll strengthen thee, help thee, and cause thee to stand
Upheld by My righteous, omnipotent hand.

When through the deep waters I call thee to go,
The rivers of woe shall not thee overflow;
For I will be with thee, thy troubles to bless,
And sanctify to thee thy deepest distress.

 

There’s a fun post in the works for you, full of my favorite wedding photos set to the text of the wedding covenant Joseph and Lindsay wrote together and vowed together.

Katie had her twelfth birthday party this week!  More photos and some videos to share.

Yet another fun post is in the works, made up of my older kids’ late-night responses to this friendly challenge from a long-time blog reader:   “I would also love to hear some of your kids’ thoughts of their daily routine. You’ve done that a couple of times before and every time I see a pic like that from Dan shaking the bottle or Laura holding Verity I wonder how things are for them.”

All three of these posts essentially written by others.  <smile>

But we have been in such unremitting distress as a family that I again feel compelled to ask the people of God to pray for us.  Several friends have recently asked how Tommy is doing with his new school schedule, and I realized that it’s been a while since I [gave up a night of sleep and] wrote an update.

 

We are still waiting in limbo.

Tommy still has not started school due to explosive diarrhea.

 

I’ve thought it might be good to map out a timeline here for future reference. Probably that’s all I need to do for our prayer request to become clear.

So here it is, with key events in bold.


Overview of Pertinent Events Since Bringing Tommy Home on June 15, 2013:

June 19th:
-Initial assessment by Dr. Kevin A. Strauss, medical director of the Clinic for Special Children, Strasburg, PA
-We begin increased nutrition in Tommy’s diet, with supplementation targeting his needs.

July 6th:
-Tommy’s bowels gradually grow looser beginning a few days after bringing him home on June 15th, but become a serious problem by three weeks home, the weekend of July 6th; nothing contains his explosions.


JULY

-Tommy has major, life-altering diarrhea, BUT…
-He only takes an hour to eat each meal.
-Daniel is only working one day a week, so I have his back-up help.
-We are on a summer break from homeschooling.
-Although we do very little outside the home other than medical appointments, we have hit a stride and life is manageable.
-We initiate the process of having Tommy assessed for therapy and other needed services.

 

AUGUST, the Golden Month

-We drastically alter Tommy’s diet; his bowel issue begins to improve immediately and is completely cleared up within a few days.
We follow a fabulous schedule and enjoy an idyllic month of homeschooling.
-Daniel is still only working one day a week, so I still have back-up help.
-Tommy takes about an hour to eat each meal, but I can feed him while homeschooling the other children.

 

September 3rd:
-Bowel issue restarts full blast although no changes have been made to Tommy’s diet.
-We alter his diet again with no resulting improvement.
He begins taking longer to eat.
-Between cleaning up random diarrhea, feeding Tommy, and making his food, very little time is left in the day to regroup, let alone make progress in other areas of life.
-In desperation, we begin feeding him on the toilet as an ounce of prevention.   

September 8th:
-We hit yet another learning curve when we change Tommy’s diet again with no resulting improvement.
He begins actively resisting eating, taking two hours to eat each meal.

September 15th:
-Tommy vomits for the first time since coming home.

September 16th:
-His overall condition begins to go downhill quickly.

September 17th:
-Tommy quits eating altogether; he is admitted to the hospital.


Mid-September to mid-October


-Tommy, Ben and I spend just as many days in the hospital as we do at home.
-Full GI workup reveals the reason that his overall health tanked and this is addressed.  However, in the end, we are left with no clue as to the cause of the diarrhea; the two issues are apparently unconnected.
-Tommy receives his G-tube near the end of this time period and begins to make real gains in weight and energy.
-Daniel works every day that I am home during this month, so with homeschooling, I have no breathing space to recover the household from my absence between hospital stays.

Mid-October to early January

-Daniel is now working full time.
-Tommy’s diarrhea is kept under control by medication, but now he is vomiting randomly two or three times each day, adding chaos to a life already without margin.
-I’m feeding him by mouth and doing tube feedings, dealing with various random problems that attend both processes, increasing the chaos factor.
-We constantly tweak his formula and feeding schedule, as per his gastroenterologist’s suggestions.
-We fit therapy/educational assessments and more doctor visits into the schedule.
-I spend a lot of time attempting to track down formula and other necessary medical supplies.
-Mastering the learning curve seems like a distant dream, because about the time we reach a new normal, at least one variable changes and the learning curve starts all over again.
-Every day begins to feel like we’re barely winning the battle just to get the basics done; we see large areas of life start to disintegrate due to the inadequate attention we have to give them.
-Even small areas of life are impacted; with cold weather keeping the windows closed, four children in diapers and one with death breath, our little house stinks; we begin to do our part to support our friend Becky’s soy candle business with ongoing financial gifts, haha!
-Tommy seems stressed and unhappy too much of the time.
-God gifts Joe and me with the opportunity to go away and rest for a couple of days.

January

-Our family’s stress level is reaching critical mass with no relief in sight, we see many areas of critical need among the children that are being left unmet with no remedy in sight; we feel like we are swirling the drain.
-We attempt to add in-home therapy; after one session, we realize that with the time-consuming nature of Tommy’s current basic needs, it will be impossible to add in-home therapy and also homeschool on any given day.
-I am exhausted, weepy, not keeping up, grieving our losses, battling anxiety over the many unmet needs within our family, feeling trapped in impossible, crying out to God for help and provision and for the first time in my life, hearing silence in return; I know He CAN and don’t know why He ISN’T; my emotional state is exceedingly low; I know I am flunking the tests that He has sent me; in this state, all my sins rise up to mock me and I question whether I am really His child…

“My God, my God, why have You forsaken me?
Why are You so far from helping me,
And from the words of my groaning?”

-I see Joe rise to the occasion in unparalleled ways as his formerly capable wife is no longer able to handle the lion’s share of household and parenting responsibility without his help; God begins to work on our marriage and knit our hearts together as never before. 
-We face the necessity of making some drastic changes to ensure that everyone’s needs are being met for the future long haul; we come to terms with the fact that we cannot meet Tommy’s massive needs without massive amounts of outside help but we can see that his needs are met…

… if we had brought home a child who needed ongoing hospitalization for something we could not provide for him at home, like cancer treatments or kidney dialysis, we would not be beating ourselves up as failures, we would simply be grateful that we could get him the help he needed…

-After an indescribably final-straw Sunday, we decide that I’m in an indefinite season of staying home in order to rest up for the challenges of each upcoming week; Sunday becomes a day of rest for me again.
-We begin to pursue every avenue of help and support we can access; this [still ongoing] pursuit takes up a lot of time, but now it feels hopeful; it seems that we are moving toward a glimmer of light at the end of the tunnel.
-After many months of Verity looking at me sadly from across the room, I have hope that the changes we make will enable me to help her as well as address unmet needs among the other children.
-The decision is made to move Tommy to school-based services, a decision that Joe had come to long before my German, hard-headed stubbornness would agree to consider it.
-At the same time we decide to increase Katie’s school schedule to a full week; the transitions for both children require time-consuming meetings, phone calls, emails, and paperwork.  It is obvious at every new step and detail that this is the right decision, affirmed from every direction; we are unhesitatingly confident the change will be best for both children and the rest of our family.
-Somewhere during this time, God begins to show me His face again in small but tangible ways despite the fact that we have left many ideals in the dust and are making decisions we never thought we’d have to make.
-Tommy is happier and almost imperceptibly begins to relax.

February

-God gifts our whole family with the opportunity to go away and rest for ten days.
-Tommy’s bowels begin to grow looser.
-Upon returning from vacation, instead of having Tommy start school, we begin seeking a solution to the now full-blown diarrhea that is keeping him out of school.
-Katie begins a full school schedule with no negative effects on bonding, so we are confident her needs are being met.
-I blog that Verity doesn’t get ugly-stubborn and does respond to my teaching, and as if on cue, she begins to display ugly-stubborn and shows great resistance to my attempts to teach her.
-We embark on one learning curve after another with Tommy’s medical testings and tweakings galore; none of our efforts make the slightest difference to his diarrhea; the glimmer of light at the end of the tunnel keeps moving further away.
-The most basic necessary preparations I must make for Joseph and Lindsay’s wedding happen at the last minute by the skin of my teeth; God reassures me with tangible, unmistakable help to pull off the added responsibilities.

March

-God mercifully answers prayer by keeping Tommy’s diarrhea at bay for two blessed days, the wedding day and the next.
-Life continues a pattern of learning curve followed by a change requiring a new learning curve followed by a change requiring a new learning curve and so on; I hit a good stride for a few days at most before having to work on a new plan; I begin to anticipate the inevitable changes rather than making optimistic long-term plans during the few days that life seems like it may become manageable.
-One Sunday, God gives me a startlingly clear view of what is really happening in our family; someday I want to blog about it.
-Mid-month, God gifts me with the opportunity to go away with Joe and rest for one day.
-My younger sister, an approved respite care provider for us, says that she will be happy to help one Sunday a month to enable Tommy, Katie, Ben and me to be with our church fellowship–our whole family, together!  This can happen after his diarrhea clears up.
Nothing we try makes any difference to Tommy’s diarrhea but a new medication cuts way back on his vomiting.
-The glimmer of light at the end of the tunnel is almost out of sight; we face the real possibility that we will be stuck in this position indefinitely; what then?
-We hear that the three nurses who were trained and ready to care for Tommy during the day while he is at school will have to be re-assigned to other patients so that they can be earning some income.
-We begin to hear suggestions that Tommy receive in-home therapy services while waiting for his bowel issues to clear up.
-Verity is growing sadder and pushes me away when I approach her; she spends more and more time in her own world; it seems that she is shutting down and slipping away from me.

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Where we are now, going into the last week of March

In spite of having taken a recent trip to DuPont to pick up a month’s worth of meds and to have some bloodwork done…

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Bloodwork!  Ouch!

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Me and two of my cuties~

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Jane got some sweet shots of Ben~

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Helping Tommy calm down, over and over and over again…

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Susanna’s roadside G-tube feeds, at your service~

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All set for the long trek back home~

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…within the past couple of days, I’ve taken Tommy to DuPont again, twice, once for more lab tests and to pick up new formula and new meds to try…

The gas money is worth it–we can have all his prescriptions filled for a tiny fraction of the cost of just one of his meds through our local pharmacy, due to the 70% discount we receive from DuPont and their lower starting cost. 

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…and once to the emergency room to have his G-tube replaced when his tube was pulled out and his stoma began to close…and to pick up the rest of his new meds.

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Tommy’s happy as a lark…

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…but Ben is not.

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Until a kind-hearted volunteer lady came bearing toys. 

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Right now we are waiting for further evidence that something may possibly be alleviating the diarrhea.

But we are braced for the reality that God may continue to say “No,” to our cry to Him for relief.

We still believe that…

He can do anything, even when He chooses not to, without explanation.

He has the right to choose for us, without explanation.

He did not make a mistake when He sent Tommy to us.

None of Tommy’s needs and none of our resultant hardships are a surprise to Him.

Hardship does not mean we are outside our Father’s will, in spite of every human feeling within us screaming to the contrary.

He has not forsaken us.

He is always faithful to give us more grace, even when we grow impatient and complain, struggle with resentment, and otherwise flunk the tests He sends us.

He can and will keep His grip on us when our strength is gone and we can’t even see where He is in the dark.

Our hope is still in Him.  We will keep waiting on Him to provide for us and send us help in our time of trouble.

He is still a good God.

 

 

 

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83 Responses to “Through the deep waters”

  1. Megan says:

    I have been a silent reader for a very long time. I just wanted to let you know that I pray all of the time for you and your family and reading about Verity breaks my heart! I will be praying that God gives you wisdom for her and keys for her during this difficult time that she may emerge from this time as the girl that the Lord created her to be.

  2. Kelly Mayr says:

    Sending hugs and prayers to you all.  I really hope you get diarrhea answers soon.  Have they considered TPN for him?

  3. Karen says:

    Our prayers are with you!  Have you tried probiotics to help build up the good bacteria in Tommy’s gut?  An experienced naturopath? 

  4. Lorena says:

    You are holding on to the hard truths, Susanna.  Praying for your perseverance in His faithfulness, no matter what God sends you next.  He IS good.  Praying for so much more for you and the family, too, but mostly for the strength for you to keep clinging until the respite comes.
    “Mercy, peace and love be yours in abundance. … Now unto him that is able to keep you from falling, and to present you faultless before the presence of his glory with exceeding joy, to the only wise God our Saviour, be glory and majesty, dominion and power, both now and ever. Amen.”  Jude 2, 24, 25

  5. Blessed says:

    Dear heart. I am praying (and crying) for you right now.  God IS good, and He IS with you, and hears you, He will never forsake you or your family.
    That said, I am sooooooo sorry for the heartache, the constant trials. We hear your heart breaking for Verity, and I hope God gives you peace about that–that He will hold her and whisper to her spirit when you cannot be there for her. 
    Much love,
    Blessed

  6. Carol says:

    Crying, praying, and trusting with you that God will provide even though the “how” of His provision is impossible to see right now.  We will pray for the hearts of all the members of your family, that God will protect them and cover them with His love. I’m going through a workshop right now for burnout homeschool moms, and the key verse is I Peter 5:10:
    “And after you have suffered a little while, the God of all grace who has called you to His eternal glory in Christ, will himself restore, establish, and strengthen you.”
    I’m crying with you during this time of suffering and longing with you for God’s restoration of you and your family.
    Love and hugs to you,
    Carol

  7. Anna says:

    Susanna, I’ve also been reading your blog for a long time, since you first brought Katie home. This post grieves my heart, also, to learn of the extremely high price your whole family is paying for being faithful to obey God. I am praying for you right now as I type, and I will continue to cry out to God on your behalf. I would like to share with you a suggestion for Verity. I am privileged to be the mother to an 8 yr. old boy who also has DS. I home school him, and I have experienced seasons of him avoiding me, pulling away from me.  When that happens, I have found the best thing to do is to follow the advice of Dr. Jim MacDonald, author of the books “Play to Talk” and “Communicating Partners.”  He is in his late 70’s, but his common sense approach to working with children diagnosed with autism, all kinds of language disorders, and developmental delays, such as DS, really works!  He would tell you to pull back from TEACHING Verity and just learn to be her PLAY PARTNER.  Start slowly, so as not to overwhelm her, with times that most naturally lend themselves to play, such as getting dressed in the morning, bath time, and bed time.  While you are getting her dressed, you can play turn taking games, like play peek-a-boo with her shirt or dress as you pull it over her head, silly games like putting her sock on your head and sneezing it off, tickle games or blowing raspberries on her tummy. It won’t hurt her to take a break from learning to dress herself.  She has plenty of time for that. You need to regain her connection with you.  At bath time, watch what she does and join her in her play, but match her and don’t over talk her or take control of the play. Let her be the one leading the play while you copy or respond to her actions and sounds. What child is not more than happy to engage in playful activities at bed time to delay the inevitable a little longer? Respond to anything she does by copying what she does and you’ve got a game going. Respond to any sound she makes by copying her and you’ve got a game going. Toss her pillow or stuffed animal to her and see if you can get her to toss it back to you and get a game going.  Play “Little Piggy” with her toes and make up different words that relate to Verity’s world: “This little piggy ate breakfast, this little piggy helped Mommy wash clothes, this little piggy cleaned up her toys, …”  Once you see Verity becoming more receptive to you and even loving interacting with you during these natural times like getting dressed, bath time, and bedtime, you can try joining her a few times a day on the floor as she is playing. Watch what she is doing and copy her actions and sounds. Don’t try to teach her, but rather let her be your teacher and teach you how she likes to play and have fun. If you will put teaching Verity on hold and try this for 2 or 3 weeks, I believe you will see her responding to you and reconnecting with you, and you will see that sad look replaced with her beautiful smile! You may discover that playing with Verity gets way more mileage than teaching Verity. :-D   (I’m still learning the art of learning to be Justin’s PLAY PARTNER, instead of his teacher.)

  8. Alicia says:

    I’ve been reading for quite some time. Maybe never commented? But, Susanna, I am praying for you all!! Especially for unexpected, peaceful, joy-filled moments for you & Verity, and for you & each pf your other children too. We all know the Lord is big enough and his grace is PlENTY enough to cover all absences and lacks. He is enough indeed! Much love from Tennessee.

  9. Jen Johnson says:

    We often wonder why we were chosen to parent a child that we have to continually learn how to care for and parent, but we know that God called us to it and that we are to be faithful to his call no-matter-what.  It is a blessing to see others walking that steadfast road.  Though we are not close in proximity, it is good to walk a road of understanding in our trials.  Dear friend, I am praying for you.  Praying for this long-suffering to bear some solid fruit for you and for Tommy.  Much love!  Jen

  10. Fatcat says:

    You may have to find someone who will take Tommy, someone who can focus more on him.  You may have been called just to bring him to someone else.  I do believe that sometimes that happens.
    The end of your post makes me think of Daniel and the lion’s den, when they said our God can save us, but even if he does not, we will still not bow down.   
    I pray that you will see very, very clearly the path that you need to take.
     
    May the God of hope fill you will all joy and peace as you trust in Him so that you may overflow with hope.  Romans 15:13.
     

  11. Leah says:

    Have they thought about trying J-tube feeds instead of putting the formula directly into his stomach? It sounds like he has motility issues for sure. Our little guy was on TPN (which was horrible) for a year because he stopped tolerating feeds threw his G-tube and oral feeds, it started causing him constant diarrhea, and they switched him to J-tube feeds, which helped for a while and then his GI dr realized he needed a formula with low osmolality’s and now he’s on Vivonex formula threw his J-tube and its the only thing that helps. He still has diarrhea, but only 1-3x a day versus 14-18x a day like before. He’s also down to just taking zantac and Carafate for his GI meds. They did upper GI’s and endoscopies and its the only thing they could think of. I hope they can figure something out for Tommy. Praying for you all.

  12. Alicia says:

    First of all, so many hugs. Next, you are being prayed for.
    Thank you for your honest, heart breaking yet hopeful post. The Verity part is very sad to read, but she is only 3 years old, so there is so much time to make up for that and all is not lost.
    I don’t have words of wisdom to give, I do not know what path God has in store for you and Tommy, but even if it is separation  I pray it is really clear for. I don’t know you, but have faith that is not a decision you will arrive lightly.
    You are such an inspiration in both your mothering and faith. I just wish I could help in tangible ways than offering prayers. But I know the Lord God hears prayers, so you are getting an abundance of it.
     

  13. SleepyMom says:

    Susanna,
    Prayers on your behalf as often as I think of it.  Your faith and steadfastness are an inspiration.  Especially I’ll pray for Verity – that somewhere in her heart she will understand your predicament and feel loved and cared for despite the circumstances.  It is so hard to not be able to do everything every child needs all the time.   I commend your heroic effort and will also pray for as many helping hands and hearts as needed.

  14. Lucy says:

    Dear Susanna, thank you for taking the time to write this update. You and your family are in my prayers.

  15. Keely says:

    Prayers for a clear path of action, strength, hope, peace, and help for your family!  Your faith and spirit are inspiring.  Thank you for the update, which I can only imagine is costly for you in precious time.  I will keep praying for you, for Tommy, for all your family!

  16. Rachel says:

    Hmmmmmm, I see a possible disruption. Not that I don’t feel for you because I have also adopted from Bulgaria. My child still has very loose stools and it’s been almost a year. As much as you cried and your heart ached when you thought you were not going to be able to adopt Tommy it sounds like things are getting to you and has disrupted your once perfect and organized life. It’s also not fair for you to blame Verity’s withdrawls from you on Tommy, he was just the final straw. You have also had to give your attention to Katie and Ben. What you need to do is realize you are not super woman of God and utilize the disability Tommy can receive and get a few home health care aides and one that can accompany Tommy to school one on one besides the nurses. It is selfish on your part not to do so at your family’s expense and Tommy’s. Unless you intend to take “fatcat” comment to heart and try to re-home Tommy. 

  17. Ann Bremer says:

    Susanna, I know you have great medical care for Tommy, and since I’m also the mom of a child with multiple medical mysteries I know you’ve probably thought of everything, but I thought I’d share our adventures in diarrhea with you just in case you might get some little glimmer of an idea that sends you down a path to formed poop.  My son, John, has Down syndrome and was diagnosed with leukemia when he was 2 1/2.  One of the chemo drugs he got monthly caused constipation.  He was on chemo for over three years and about halfway through we realized that the constipation causing drug was no longer a problem for him.  Then a few months later it all went the other direction and we were dealing with liquid diarrhea.  I can point to different areas in my house and tell you exactly which way the floor slants because I remember which way the diarrhea flowed.  We visited several different pediatric GI specialists and I collected and delivered stool samples to multiple labs near us.  Every test was negative.  We even had a work up done at the Mayo Clinic.  No one could tell us what was going on.  In desperation we put him on a gluten/dairy free diet even though he had a negative biopsy for Celiac.  That worked . . . for a few months anyway.  Then it all came back again and we were right back where we started.  We ended up at a new GI doctor who treated him for bacterial overgrowth and things improved a little.  Eventually we discovered that he can’t eat processed carbs by themselves.  A bowl of tortilla chips or a plate of noodles without protein eaten at the same time always equals diarrhea.  He eats far fewer carbs then he ever did before and he’s doing great.  I’d love to have him completely off all processed carbs, and maybe some day I will, but for now it’s mostly OK.  I know Tommy is tube fed, so none of this probably applies to him, but like I said, maybe it will give you the glimmer of an idea, something you can do to tweak his nutrition.  I definitely sympathize with you.  We barely left the house as a family for months on end because we didn’t know what might happen.  It’s no fun.
    Wishing you the very best!

  18. sabrina says:

    It is hard to know that you have had such a time this year. I will keep praying. 

  19. Usually I read your posts but don’t comment but as I have two sons with DS one who had a gastostomy and one who had an ileostomy I thought I’d give you the rather drastic advice  to ask for an elective colostomy aiming for reversal when (if) Tommy becomes continent of urine.
    Reasons would be that he has severely impaired quality of life, does he also have medical issues like skin breakdown?
    Obviously other problems associated with colostomy. but many you have sorted by coping with gastrostomy
     
    Cincinatti childrns hospital has the most highly regarded bowel management programme in the US I would suggest contacting them for ideas re current management
     
    also join groups for kids with bowel problems eg Hirschsprung’s disease or short gut syndrome, little tips like eating marshmallows may be helpful here.

  20. Esther says:

    Susanna! My heart is really touched reading this and I cant tell you how much I WISH I could do some thing to help…..bring a weeks worth of freezer meals… come pick up all the laundry ….ANYTHING!!! It would give me such joy! But I’m here in NY, and what I can do is PRAY, and I will!  You are strong and courageous , but even the strong get weary and need help. Please dont for a minute entertain any guilt for seeking outside help for Tommy & Katie. And I just know that sweet Verity will blossom again soon, and it will be a healing balm to your heart!

  21. Rachel says:

    I haven been reading your blog for some time, and I have always been amazed by the evidence of God’s grace all over your life. You just shine Jesus’ love through every letter you type. My heart is aching for you, and you and your family will be daily in my prayers.  You will overcome this valley, and your children will rise up and call you blessed when they see what the Lord has done in your life and in Tommy’s.  Blessings upon you and your children. 

  22. Bethany B. says:

    I wish I could do something more tangible to help, but I will do the only thing I know I can…pray.  I am praying against attacks fom the evil one, for speedy yet thorough answers, wisdom, grace, peace and sweet moments with Verity.   Thank you for this update…I will be praying!

  23. Anna says:

    Susanna, I can hear the pain in your words. I have two suggestions, one a bit of a wild guess, one something that I think you can’t see because you’re so close to the issue.
    Firstly, I have a child with a soy intolerance. She reacts with diahorrea to any soy products, including mixed tocopherols, soy-derived vitamin E and soy lecithin. When I was struggling to nurse her I found that the elemental formulas (Elecare is one) all had soy ingredients. I obviously don’t know the specifics of Tommy’s medical condition, but I thought I’d mention our experience in case it helps.
    The other suggestion I have is that you mention repeatedly in this post that you cannot fulfill Tommy’s needs, Verity’s needs and the school needs of your older children. Since Verity needs you to be working with her, your older children need your emotional support and Tommy needs to be helped by you at home for the forseeable future, why not have the oder children’s school needs be met by someone else? Whether that be school or a tutor, it’s the one thing that can be done by someone who isn’t you. And it will mean that you can save the time you do have for them for fun and loving activites, and be calm and relaxed with them.

  24. Kristi says:

    Oh Susanna. I just cannot even fathom. But I will be praying. I’m sure they’ve done extensive food allergy testing, but just throwing this out there…my boys and I had the symptoms of diarrhea and vomiting with allergens we were eating, before we found out they were allergens. For my boys that was wheat, for me it was dairy and eggs. I really hope and will pray that his medical team can get this figured out ASAP and make it STOP.

  25. Lois says:

    I am another faithful reader who regularly prays for your family. I just wanted you to know I am here. Bless you for never believing that Tommy is a mistake.  I will continue to pray.

  26. Alex says:

     I’m a long-time reader but I’ve never commented before. I’m shocked and saddened to hear how much you are struggling to cope. I see there’s been a ton of good suggestions left already, but I was wondering if you had looked into in-home nursing care for Tommy? If you can become more hands-off with his medical needs then you can focus more on bonding activities with him, and of course the other kids and the house. The other thing I think you should investigate is getting overnight respite care for Tommy, maybe once or twice a month. I don’t know how you would go about this in the US (I’m from the UK) but there are foster parents out there who do short-term respite and are trained to do so for kids with medical problems (If you have a social worker, I’m sure they would know how to get respite set up). This would give you a regular time slot in which to rest and regroup, which I think you really need. All the best for the future, it will get better some day.

  27. Lauren S. says:

    Love that verse.  Thank you so much for the update.  We know how to pray now.  Prayers for your family are going up right now, specifically addressing Tommy’s diarrhea and Verity’s sweet little heart.

  28. Tiffiny says:

    Susanna, you have my heart breaking for you and your family. I know how to pray now and will keep praying for you all. You’ve been given much advice here, and I have nothing new to add. However, I have also been wondering about TPN. When I was working as a medical social worker, TPN was often employed to give a patient with severe g.i. issues a complete break from digestion. It’s nutrition that’s basically pre-digested and delivered via I.V. port. Has this been offered as a temporary fix? Like other readers, I am also wondering if there is more respite services available to your family — or perhaps a nurse/nurse aide could provide personal care to Tommy, allowing teacher/therapists to work with Tommy on his IEP goals in your home? In any case, please know you have my prayers. 

  29. nicole says:

    I have 1 child with special needs, but only had 5 kids. 3 of them were triplets and the oldest daughter was 5 when they were born. Nothing was easy, they were always sick… my life was a non stop turmoil so I just don’t know how you do with 10 children and later 3 more… my special child disrupted all the family, she cried and screamed and yelled and was quite a handful. I would call to the Lord and ask why when He gave us 3 babies at the same time it would be so so difficult. And they all needed special therapy to learn to talk etc… Why was it so hard…. I never got an answer.
    I did my best to be thankful for what was good and happy for what ever fun could come out. 
    Just to say I would rally be surprised if everything went smoothly with 13 kids.
    And a wedding on top of it all would have completly distressed me. conclusion ?
    You are just a human being . The best attitude is to accept things. difficult to say more in english. It would be easier in french !!!  Bon courage !!

  30. Nicole says:

    What I have learned in my difficult life… (I have been very sick for over 3 years and live with pain in hands and feet and no energy) is what Joyce talks about this morning : “It’s not our circumstances that determine our happiness. It’s our attitude during our circumstances that makes the difference.”
    I will pray that you find your peace and happiness in the life you have. (just as I do for myself ! ;)  )
    http://www.joycemeyer.org/broadcasthome.aspx

  31. Galit says:

    Praying for you to  find the wisdom and inner  peace to get through this difficult time.

  32. Gina in Spain says:

    Praying for you…I can not even imagine Susanna…..Hugs….

  33. Deanna says:

    Praying, Praying, Praying.
     

  34. Susan says:

    Dear Susanna, thank you for your transparency.  You and yours are (and have been for some time) in my prayers.  Regardless of how all of this plays out for your family, I am so glad that you know that these troubles do not mean that you are outside of God’s will.  You are walking out the Gospel.  Whether He decides to keep things relatively the same for you or decides to changes things drastically as time goes on He will unfold it for you.  You are in His will and His hands.  You have long been an inspiration for me because I also struggle with meeting the needs of my 3 children with special needs without damaging my relationship with my one child who does not.  I’m afraid that many I have given them some very poor examples of what a loving and patient mother should look/act like.  I have felt like a failure for so long that I began to believe it was true.  But then God graciously let me know that my human frailty and failings are normal and He can redeem them all.  I am relieved to be walking this difficult path with other moms like you and many of your readers.  We are all in good company as we lift each other up.  God bless you today and show you many secret joys with Him!

  35. Jennifer says:

    I pray you will find some relief and that things will “normalize” for your family soon.

  36. Holly J. says:

    Susanna, I do not have your unique set of difficulties (which you do ADMIRABLY at handling…you are a mentor to me,) but I do have nine children and two old,  negative, contrary elderly parents I care for whom also have delicate health situations.  I’m not saying that to be mean, but to say that they fight against everything good I try to do for them healthwise, and find themselves frustrated at my intervention (which they’ve given me by power of health care attorney), and they no longer have the mental faculties necessary to reason or understand or reconcile anything.

    You can obey the Lord and do all that He has commanded you (such as bring your specific set of children into the world and to care for specific, needy children He has called you to…) and a great number of people will look at that and say, “well, you created this situation, so in effect  you caused your own trouble.”  That’s not true at all.  You’re walking the path your loving Father has asked you to walk.  You are trusting Him when you can’t clearly see His plan.  This *is* faith which pleases Him, and you will be rewarded a million times over in ways most will never realize.  God’s blessings – as you know – the gifts of intimacy with him, of great relationships and legacy for your children, of spiritual maturity for all involved – take such a long time to grow.  They don’t come without suffering.  Please don’t be dismayed.  Please know that you are not alone.  Please don’t forget how much He loves you, and in due time He will provide respite and release and vision and blessing for EVERYONE He has given you responsibility over.  I think if you could look ahead 20 years and see how this suffering has been redeemed in the lives of your beautiful and large family – you would stand amazed at what God has done.  And it won’t be a small thing – it will be huge.  God – thru your willingness – is doing a big thing.  :)  And His Will will be done, on earth as it is in Heaven, and He will be glorified. 

    Do not let anyone pull you down or stop you from sharing.  Don’t let the words by detractors above discourage you.  Be strong and courageous and joyful in this affliction.  Yes, be kind to yourself, and take care of yourself the best you can (I know that even moments matter at this point…) but stay the course until He leads you otherwise.

    With continued prayers – and gratefulness for you –

  37. Angie says:

    Susanna, I can’t even understand how or why really, but your raw honesty gets right to my heart. You are at once an encouragement and a rebuke. A true disciple of Christ with nothing to hide. You have blessed me so far beyond what I can even explain just by sharing your life and faith. I pray for your family often.  I know God is making a way, just right now it is hard to see. “Trust in the Lord with all your heart and do not lean on your own understanding. In all of your ways acknowledge Him and He will direct your path.”  I know this is just what is happening in your life right now. None of this suffering will be wasted. Not one Bit. I am so thankful for finding your blog and for the encouragement towards Christ that you are in my life.

  38. Julie says:

    Praying!!  And as the previous commenter said, you are at once an encouragement and a rebuke.  Thank you for your openness and honesty during such a difficult time.

  39. Melissa says:

    When we had my two-year-old foster son with us, I knew I was doing what God wanted us to do, but I was hit between the eyes with exhaustion and frustration (he was a VERY active toddler and I was a first-time mom!). Then we added our little guy (got him at five days old) five months into that adventure, and I dreaded the days my husband and my mom were both working. I thought “Okay, if WANTED this, why am I feeling like this?!” The enemy really had my number for a while. In September our ‘big guy’ was reunited with his family, and while it broke my heart that we may never see him again this side of heaven, I was able to relax a little. I am convinced that he was our ‘trial by fire’ so that anything our little guy does would seem like a piece of cake! Our little guy is very easy to care for, and the more we think about it, the more we are pretty sure that our older boy went through a lot of emotional trauma at an early age and might have had the beginnings of ADD. I know that everyone’s life is different and God is telling me MY story, not anyone else’s…but I just want you to know that you inspire me to pray and seek God and call on His power when I’m facing my own trials.
     
    You were being prepared for Tommy through the challenges of Verity and Katie, otherwise you would not have even DREAMED of bringing him home. Is he supposed to remain with you? I’m not certain, but even if he must go elsewhere, you have given him THE BEST of everything and an absolutely rock-solid foundation upon which to build. If he stays with you, I know he will continue to receive no less. He is a living monument to the sacrificial, get down-and-dirty, Via Dolorosa-walking love of our Savior. I know talk is cheap; I’m not the one with my hands in liquid poop (although my little guy had some tummy issues the other week and I was, ah, anointed) but I know some of that exhaustion, and it feels guilty and awful. You are doing the right thing, and the enemy is NOT HAPPY. I pray the armor of God is upon you at all times. You are in a battle and just remember: GOD WINS.

  40. Mary says:

    Dear Susanna,   I am praying for you and your family.  I cared for my Mother during her last years and she also had very difficult GI issues.  I am wondering if you and your Doctors have ever thought about giving Tommy’s GI tract a complete rest by utilizing TPN through a central line for a time?  I know that he did not likely receive anywhere near needed nutrition before joining your family.  Perhaps a GI tract rest would allow a gradual reintroduction of feeding without negative results?  Have Doctors suggested a GI biopsy?  My prayers for your family continue each day.

  41. Mary Winslow says:

    Oh my dear Susannah, how we pray for you here. Please know that! You are covered and bathed in prayer. May our Lord God sustain you as only He can! We sure do love you! Thank you for taking the time to share as only you can!

  42. Angie says:

    2 Corinthians 12:9-11
    New American Standard Bible (NASB)

    9 And He has said to me, “My grace is sufficient for you, for power is perfected in weakness.” Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me. 10 Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ’s sake; for when I am weak, then I am strong.

  43. Jocelyn Scott says:

    Dear Susanna,  That picture of Verity wrenches my heart.  You may hate me for saying this, but it doesn’t seem right to me to be giving all this attention to Tommy at the expense of your own biological child.  If you can’t handle it all, seems to me she should be your priority.  I hate to say this but if you’re trying to do too much, even if you’re a good Christian, God won’t necessarily protect you.  My sister had 3 boys under 6 with chronic diarrhea and her husband was busy with his father who was dying from cancer.  She had a nervous breakdown and for a year and a half her kids had to be farmed out to relatives and friends.  My cousin Jane had 3 kids under 5, the oldest boy was a handful, and her husband was busy holding down a job supporting them + studying at night school.  She had a nervous breakdown, the hospital gave her shock treatment, and she went into a coma and DIED.  Her husband had an awful time finding a women who would care for the kids + do housework.  (Fortunately he eventually remarried to a lovely Christian woman who loved the kids as her own.)  The WORST thing that can happen to kids is for their mother to be incapacitated or absent.  So limit what you do, even if it means re-homing Tommy, or ALL your family will suffer.  Of course if you can get help with Tommy that you can afford, that would probably be the best.  So use the reason God gave you and don’t try to do too much, even with the best motives.  Clergy burn out all the time because their idealism exceeds their strength.  Sorry to have to say this, but I’m 70 years old and I’ve seen too much.  God bless.  P.S/ I’d come in and help you with the diarrhea, but I live in Toronto Canada.
     

  44. Cheryl says:

    just a question? Are your three special needs children county board eligible.  I couldn’t quite tell from your descriptions of school if that is where they were going to school.  Another question – would it be good for Verity to be the one to have a break – as in being in a preschool setting for a few hours a week. No judgement here, just some thoughts.  I respect all your decisions, sometimes we do indeed feel the abscense of God’s consolations and it is painful.  I experienced that and it was painful.  We (Catholics) call it the dark night of the soul.   love and peace to you.

  45. Jennifer says:

    I’m sure Tommy’s medical issues go way deeper than what has been mentioned on the blog.  From personal experience with gastrointestinal issues I would strongly urge you to look into a medication called Domperidone.  It is also listed as Motilium.  This med has been a lifesaver for me!

  46. Barb says:

    Susanna, I read your post yesterday and heard your pain. As I read all the comments today you have received a lot of suggestions, many of which I’m sure you are already thinking about. Your family is in my thoughts as you find the correct path for everyone. As many others have said, I wish I could do more for you…but from Ohio, I send you strength and wisdom. My favorite prayer is the Serenity Prayer – Grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference. Blessings.

  47. Mary says:

    I will keep you and your dear children in my prayers.  Peace to you all.

  48. Rebekah D. says:

    Susanna, I am so sorry that your family is struggling so much right now. It must be overwhelming and very stressful. I wonder if there is someone (that you trust) who would be available to come over and help your younger children with their school work for the time being? Perhaps one of the young ladies who helped with your housework might be available? Could you simplify their studies for the meantime? Or perhaps each one of your older children could temporarily take on responsibility for planning/supervising the schoolwork of one of the younger children? Being “school buddies” for a few months? (I know a family with 10 children that uses Teaching Textbooks for math… the program does the teaching and the grading for them, and they LOVE it!) 
    I want to encourage you with these verses from Psalm 73:21-26:
    “When my heart was grieved and my spirit embittered, I was senseless and ignorant; I was a brute beast before You. Yet I am always with You; You hold me by my right hand. You guide me with Your counsel, and afterward You will take me into glory. Whom have I in heaven but You? And earth has nothing I desire besides You. My flesh and my heart may fail, but God is the strength of my heart and my portion forever.”
    I also noticed Psalm 71:15: “My mouth will tell of Your righteousness, of Your salvation all day long, though I know not its measure.” What a thought… that we are incapable of understanding the measure of God’s salvation on our behalf. 
    Love to you, dear sister in Christ. Don’t lose heart… for in due time, you WILL reap, if you do not grow weary. 

  49. Holly D. says:

    Dear Susanna, I am praying that things will get better soon for you and your family. There are so many supportive comments and wow one person who I really think is displacing her own feelings toward her own adoption.  I have never gotten the impression that you think your life is “perfect” and or that you think you’re super woman. And furthermore, I don’t think you have a “selfish” bone in your body.  And to the woman who posted about the “biological” child, you obviously have not adopted a child to even remotely suggest they are less important.  So many uplifting and supportive comments from readers…I hope you can overlook the negative ones.  Praying for a turnaround…

  50. Juliana K. says:

    I will definitely be lifting your family up before the Throne of Grace!!! Thank you soooooooo much for being willing to share honestly. I will be praying that the Lord would give you and your husband great wisdom and unity as you seek to walk in God’s will for your family- walking by faith not by sight; and that you would see His grace sufficient for you in each moment, and His strength made perfect in your weakness at this time. I will also be praying that the incredible challenges at this time would be the crucible that causes you and your whole family to draw closer to Jesus and closer to one another! I wish I could offer some kind of tangible help, but I know that God delights in using the prayers of His people to fight battles! I am always encouraged by this quote from Elizabeth Prentiss (the author of the song “More Love to Thee”, who also lived a joyfilled life full of sickness and tragedy)- “Some of His children must go through the fire to show that the Son of God is there with them.”
    Someone asked me if by any chance your family had tried chiropractic help for Tommy since sometimes bowel issues can be connected to an adjustment need. I don’t know if you have thought of that, or if it is even something that you can do with Tommy at this time. But I thought I should mention it, seeing as I am sure you are trying to turn over every stone imaginable to resolve the issues that you are facing.
    I also wanted to encourage you and your family to continue faithfully making whatever decisions and adjustments that God is leading you to make, but not to be burdened by everyone elses’ thoughts on what decisions you should make. You and your family are God’s children and servants, so you should look to Him for you orders and not worry about what everyone else thinks you should do. I am confident that He will guide you, and that in the middle of the dark night He is there with you!!! “Yea, though I walk through the valley of the shadow of death, I will fear no evil, for Thou art with me. Thy rod and Thy staff they comfort me.” ~ Psalm 23
    I will keep praying for you, and will let our whole family know to be praying for you at this time.
    Love in Christ, Juliana

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