Rest & Love

For three months I’ve been hanging on.  I felt like there was something going on with Haddie’s health, but I was ignorant to what it was.  We would go the doctor and find out she had this or that, but nothing life threatening, all manageable and she would be gaining, so all was well.  Her feeding, I thought, seemed primarily difficult.  Even changing her diaper was a huge task.

Peter and I kept telling ourselves it would get better.  One night we finally laid in bed and he said to me, “Well, if it doesn’t get better, we’ll be fine.”  Shaylea took notice.  In all of the hard days, she only once said, “I didn’t know having a sister would be this hard.”   She said it with a smile.  In all the hardship of caring for Haddie Joy, there is such fun in it too.  We are still all so thankful she is here.

The last week and a half have been a blur.  I remember some of it only vaguely.  There were the two nights, three days in the ED getting 1/2 hour to and hour sleep at a time between long, exhausting feeding.  Picture yourself camping out with a special needs infant – only with constant beeping, screaming, talking, lights, etc.  Honestly, we were just thankful for a room and a shared bathroom . . . there were several children in the hall.  And I took great comfort in the fact that we were under the supervision of great care.

Moving into a regular room, which was the Hilton comparatively, last Saturday was wonderful!  By this time there had already been about 7-8 (great) nurses.  Peter and I weren’t exactly sure what all we were responsible for versus those caring for us.  After hanging on for three months, I didn’t easily let go of managing some of her needs.  The nurses or care partner would be changing her diaper, and I would tell them they were doing it wrong and if they did it that way it would make her rash worse.  It was frustrating for me and the staff!  But after a few days I think we began working as a team a little more.  Now, when I show off the bag with all of the diaper creams we’ve tried I think I’m believed.  😉  And I also have a whole new respect for nurses.  Y’all rock!

All of the staff here are great.  There are A LOT of them.  Haddie has more than one team tending to her needs, so that means a lot of people in and out.  But I think Peter and I are finally getting the hang of life at Vanderbilt Children’s Hospital. (Ha!  I say that on a weekend!) It is stressful with the load of traffic in and out sometimes and we sort of go through information overload and get overwhelmed, but we do realize (more and more each day) that is just all a part of what has been best for Haddie Joy.  Everyone wants to help and they ARE helping her . . . and us.  They’ve been extremely patient with Peter and me as we question everything so that we have a good idea of how to care for her once we get her home.

There have been dark days.  Very dark. I miss Shaylea.  I miss home.  We have wondered what the quality of Haddie Joy’s life will be like if she doesn’t resume eating after her surgery.  We’ve felt helpless, defeated, overwhelmed, confused and inadequate all at once.

I wrote this update during the darkest day yet . . .

There are a lot of unknowns, even from the doctors’ perspective. Peter and I are struggling. It IS more than we can bear to see her in pain. We wonder often if our decisions are right. We feel completely inadequate. We are not strong as some of you think, we are actually pretty much falling apart But in all of that, there is the Truth that we cling to: God is working this somehow for His glory. It has never been about us being good parents or strong or anything like that. When you pray for God to use you, you open yourself up to life bigger than you can handle. I am struggling and am a mess, but I can’t help but be thankful. Thankful to be here, broken, scared, anxious -all of it. Here is where I end. I’ve never given more of myself, or been more diligent or loved more in all of my life and it is simply not enough. Praise God. I’ve ended, there is nothing left- but God is still God. He is more than able to take care of it all. Praise Him for the miracle of Himself.

Then came rest.  Haddie Joy had the same nurse for the 3rd night in a row and she was tolerating feeds much better, so we took everyone’s advice and got away for the night.  It’s pretty bad when you tell the care providers you left for the night, and they already “heard”.  Ha!

Peter and I were able to go to chapel together this morning.  It’s the first service we’ve attended together since Haddie Joy was born.

The hymn we sang, really ministered to me.

The Gift of Love

Though I may speak with bravest fire,
And have the gift to all inspire,
And have not love, my words are vain,
As sounding brass, and hopeless gain.

Though I may give all I possess,
And striving so my love profess,
But not be given by love within,
The profit soon turns strangely thin.

Come, Spirit, come, our hearts control,
Our spirits long to be made whole.
Let inward love guide every deed;
By this we worship, and are freed.

Haddie Joy will be having surgery Tuesday.  It is a big deal for a little bitty body.  After a lot of prayer and questioning doctors, we feel we are doing what is best for her.  In all that we’ve been through I pray that we have ministered this kind of love to others.  I know you all have to us – so none of any of this has been in vain.  God is good.

Pray for Dr. Bichelle and his team this coming week.

Love you all,

PS – Thank you for caring, reading, loving, praying, serving, giving – all of it – THANK YOU.  You are all making a difference in our lives everyday and we are so undeserving, but very grateful.

This entry was posted in General Updates, I Was Just Thinking..., Relating with my Jesus. Bookmark the permalink.

7 Responses to Rest & Love

  1. Dawn says:

    How awesome and incredible to know that God has been literally breathing life into Haddie Joy as her eartly temple only allowed 10% passage of air to sustain her. You are absolutely right – God is enough and we can only truly see Him moving when we reach the end of ourselves. My heart wishes to have saved you from the pain of getting to this point – the dark days. Yet, it is only this road that brings you completely and fully into his presence. The freedom in knowing that you need to bring nothing for Him to still be God!! We love you and will continue to pray you through these days.

  2. Gail McKinney says:

    I am praying for Haddie Joy daily. He picture postcard you sent is in my Bible so that when I do my quiet time in the early morning hours I can remember to specifically pray for her and you and Peter and the rest of your babies. The glory that God is getting is the testimony of your and Peter’s love for Him and your baby girl. It makes me so humble to know that I have healthy children and so many others don’t. My son married a woman that has a son who is autistic and that to has been like a slap in my face of how much I have not praised God for the health of my kids and how much I need to pray daily for those less fortunate. Please know that thru all of this, however it all turns out that your family has ministered to so many others just by showing your faith. Prayerfully, Gail

  3. Paula says:

    prayers, wishful, hope prayers. darrell and I did not experience near what you are experiencing today 33 yrs ago but we do understand what it is to have your baby be ill and not know what to do. pray, pray, pray is the best advice and hold on to the faith God gives. love and prayers for you ALL!

  4. Melissa Kieffer says:

    We care for your family and are thinking of you ALL in this difficult time. Wish there was more we could do!

    Robert, Melissa and Madison

  5. Tina says:

    Thinking of you and Peter…loving you all…my heart is with you both…may you feel your Father’s comforting presence and peace in all of this…Father, I lift up Haddie Joy to you and pray for her right now. I bring her to your throne of grace and I pray your healing power to flow over her body. I pray your Spirit to hover over her and surround her with your Presence. I ask you, Father, to guide the doctor’s hands in this surgery, Lord. Father, our lives are all in your trustworthy and sovereign hands. You are good in all you do, and your love endures forever. Father, strengthen Brooke and Peter in every way; physically, mentally, emotionally and spiritually during this time. I lift them to your throne of Grace where we come to find help in the time of need. Pour our your Spirit upon them and fill them to overflowing with your grace, love and power. I pray that they will walk in overcoming power during this trial, and that all the glory would be to you in their lives. Father, I pray you would comfort them and send your holy ministering angels to encamp about them and to encourage them. I ask you to pour out deep rest upon them, and that they would walk in our supernatural shalom. Father, I thank you for Brook and Peter and their witness and testimony of your goodness and your faithfulness, Father. Bless them abundantly, and Lord, please protect and comfort Shaylea during this time as well, Father. I pray you will give her wisdom, patience and understanding beyond her years. May your Holy and Perfect will be done, Father. I bind every work of darkness, every work of the enemy that wants to destroy or hurt in any way. I loose the blessings and healing of heaven upon them, in the name above all names, Jesus Christ. I thank you for my brother and sister, and for this precious baby you have given to them. How blessed they are of you. How highly favored and privileged to be able to have this child, to care for her, to nurture her, for she is a gift, a treasure. I plead the blood of Jesus over them all, Father. Oh, how you love them, Father. I pray they will feel your great love upon them now. Thank you, Father, so much. Amen.

  6. Rachel H. says:

    I know this sounds soo cliche, but your words have strengthened me and reminded me that in our “dark days” we don’t do it for ourselves and our “earthly comfort”. We do it for HIS glory!! Always HIS glory!! I’m amazed how you can keep that in focus in such heart wrenching struggles. You are all very loved and very much in our prayers!
    Rachel and Family ❤

  7. gayle rives says:

    Dear Brooke and Peter and Shaylea,
    I don’t know that I have more words to say than these believers before me have already said. Tina’s prayer was beautifully penned and I repeat it all to you. I do also pray for rest tonight and a sense of peace when tomorrow’s schedule begins. Brooke, thank you for taking your precious time to write to us and allow us to do what we can even when we’re not with you. I love you and will be praying for you–always.
    “Peace I leave with you. My peace I give to you. Not as the world giveth….give I to you.”

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