October 12, 2010

little boy blue

Who knows where nicknames come from, but Little Boy Blue is my nickname for JF. 

Yesterday when I went to the hospital to visit I ran into the doctor in the hall.  She told me that JF was not nippling (taking his bottle) as well as he had been.  When I asked why she thought it might be, she told me because of the brain.  The feeding therapist had met with him and was concerned.  JF has always been a "disorganized eater" where his arms start to move and he doesn't know what to do and he "forgets" to suck and swallow.  Usually if he is swaddled he does much better but yesterday he just seemed "lost" as he ate.

Maybe he was just having a tough day.  We all have bad days.

But news like this, and especially any mention of the word brain in relation to damage, brings on a whole new cycle of guilt, fear, and grief. 

My mom says that God has healed JF and that He will continue to do so, if only in His time.  She says that JF improved so rapidly for so many days that it's easy to feel like a one day set back is a set back, but it's not.  Mom says that the healing of the brain may take awhile, but it will happen. 

But I am so afraid of the long process.  I feel inapt to parent him once he is home.  I'm afraid of him coming home and I feel overwhelmed when I think of how hard it will be with L, Ben, JF, and JF's special needs.  The nurses and doctors speak so warmly and positively about getting JF home.  I picture myself lying on the living room floor, sobbing, surrounded by my 3 crying children.

In something that is not a coincidence, the Church's recent Sunday readings have been about faith and healing: 

Naaman went down and plunged into the Jordan seven times at the word of Elisha, the man of God. His flesh became again like the flesh of a little child,and he was clean of his leprosy. 2 Kings 5

As he was entering a village, ten lepers met him. They stood at a distance from him and raised their voices, saying, "Jesus, Master! Have pity on us!"  And when he saw them, he said, "Go show yourselves to the priests."  As they were going they were cleansed.  And one of them, realizing he had been healed, returned, glorifying God in a loud voice; and he fell at the feet of Jesus and thanked him. He was a Samaritan.  Jesus said in reply, "Ten were cleansed, were they not?  Where are the other nine? Has none but this foreigner returned to give thanks to God?"  Then he said to him, "Stand up and go; your faith has saved you." Lk 17The apostles said to the Lord, "Increase our faith."  The Lord replied,"If you have faith the size of a mustard seed, you would say to this mulberry tree, 'Be uprooted and planted in the sea,’ and it would obey you."  Lk 17

Blessed he who keeps faith forever,...

The LORD gives sight to the blind.

The LORD raises up those who were bowed down;  Ps 146

When I hear those above passages I feel guilty because I am surrounded by people who believe, yet sometimes it is so hard for me to hold on to hope.  I fear that my faith is not the size of a mustard seed and my son will lack because of it.  I have to keep coming back to Peter's words, "Lord, I believe.  Help my unbelief."  I suppose that's all that matters in the end, though - that I keep coming back.  I don't know. 

The Sunday after JF was born gave us this message:
The person who is trustworthy in very small matters is also trustworthy in great ones;  Lk 16
It makes me think that, if nothing else, God has found Travis and I to be trustworthy in the very small matters.

Please pray that God will heal my son's brain.  Please pray for continued success with bottle feedings.  Please pray for normal muscle tone and no more tremors. 

And please pray for me, Travis, our marriage and our family.  The stress and emotions are often overwhelming.


  1. Lifting you all up in prayer.
    Much Love to you
    :0) Rach

  2. Lifting you all up in prayer.
    Much Love to you
    :0) Rach

  3. thinking and praying for you ALL today. I know we don't know each other well, but please know if you find yourself on the floor crying please call me. I am only 15 minutes away and hardly ever busy. I am happy to help. I can play with the older ones or just cry with you. Hang in there. Lori

  4. Bonnie: When I was in a place where I could not have faith and hope, my friend told me, "Don't worry, we have enough faith and hope for you."

    Be like the paralytic man whose two friends had to carry him to the house where Jesus was at. Then they had to heave him up on the roof, then they had to CUT through the roof. Finally they lowered him down at the feet of Jesus. at some point in our lives, we will all be like that paralytic man. Paralyzed with fear/grief despair and others will have to carry us to Jesus.

    In the meantime, when you are scared, you need to say "In the Name of Jesus Christ, I reject Fear. In the Name of Jesus Christ I pray for the Spirit of Hope." Super important. You are not a passive observer here. You have power, so start tapping into it.

    If God so chooses to heal your son, He will. If not, He will still be present and He will give you sufficient Grace. Remember, His Grace is made Perfect in your weakness.

    God bless. One hour at a time. Make sure you reject the fear. It is not of God. And you know where I have been. Trust me.

  5. Praying for all. Don't feel guilty... it is OK to let those who love you do the believing for you. James is so lucky to have a mom like you and on 9/12/2011 you will look back and be amazed at everything you have learned how to do in 12 months time.

    Remember the first one and how that felt. In many ways parenting a special needs baby is like parenting your first born all over again. Over the months you learn the art of it, and not only can you get it done right, it becomes a joy. You have what it takes! It takes love, which you have in abundance.

  6. I will pray for you and your precious little boy!

  7. Bonnie,
    I pray daily that God heals James. I also pray for strength for you, Travis, and the kids. I'm not sure if you recall what happened with our 4th child Abigail. But let me tell you this, although you may be stressed and overwhelmed, you & Travis will become closer than you can imagine(it will be very trying at times).

    You may feel this is the absolute WORST thing in the world, but better days are to come and good thing things WILL come out of this-if you open yourself up to it and allow it to happen. James will change your lives forever. Because of him you will look at the world differently and appreciate things you may have once taken for granted or never noticed.

    Do not be afraid to seek out support groups or counseling. It helps tremendously with coping and dealing with day to day emotions and feelings. You are not alone. Others have went through similar circumstances and can help you through difficult times.

    If you become too overwhelmed, saddened, and depressed please seek your doctor's advice(I had to in order to be able to care for our 3 other children at the time) I never would've thought I would have the strength to have 2 more healthy children after the tragedy(the head mother at St. Francis knew & actually told me I would have more children)

    There is nothing you could've done to prevent this. Do not feel guilty. It was already in His plans. Now is the time to lean on Him. He is there for you. And He will help you through. Your faith will grow unbelievably stronger as time goes by(although you may have your doubts now).

    Nobody will completely understand you until they walk in your shoes.

    My best advice(if you'd like it)is- talk about, write about it- any form of getting your emotions & feelings out. Do not keep them bottled up. The people who know and love you will always understand no matter how many times they hear about it.

    Praying for you all,