Sometimes there just aren’t enough hours in the day to do all we need to do. And Brooke is at that place recently. So, I am pitching in and blogging for her. I am going to try and put into words what’s on Brooke’s heart.
Last night, when I was on my way home from work, Brooke called me. She does this often. Sometimes to ask my opinion. Sometimes just to talk. Last night was just to talk. But given the circumstance of rearing a special needs baby whose very arrival was a clear-cut miracle from Almighty God, sometimes when Brooke talks, I walk away from the conversation somewhat overwhelmed by what we discussed. Last night was one of those nights. So, nearly an hour later when my husband came home from work, he found me weepy and snotty and barely able to tell him what was wrong.
This is so hard. Nearly everywhere I go, people ask me about Haddie Joy. They ask all of us–Brooke, Peter, her brothers and sister, grandparents, aunts, uncles–everyone. And for the most part, we answer that she is doing well. That’s what people want to hear. They like being in on a grand miracle from heaven. (Pssst! So do we!)
But the truth is, we don’t really know how Haddie Joy is. And explaining that is so complicated. She is gaining weight or, at least, holding her own. But, compared to other babies 14 months old, she is behind developmentally. She is sitting up now on her own; however, can fall back if left alone too long. She squirms her way around the floor, but she’s not crawling. She makes some sounds but nothing recognizable. She sees a couple of therapists–physical and occupational. She is making some progress.
She still takes in very little nourishment orally. Mommie’s milk is still fed to her through a tube in her tummy. She has progressed beyond being on continuous feeds. She sleeps well. She is no longer as timid and fearful of strangers and loud noises as she once was. (My voice, in particular, was pretty scary for a while there!)
Haddie Joy has some kidney issues that still are under study. A biopsy has been advised. The question remains when to do it. She will need surgery on her eyes in the future. Haddie’s hospitalizations have been very, very hard on her. She seems to take steps backwards in her progress after each episode of invasive tests. So, this isn’t a decision that’s easily made.
Most recently, Haddie Joy is experiencing lymphedema. One of her little legs is quite swollen. As I understand it, there isn’t really anything they can do for this except treat the underlying cause. And since they don’t know what the underlying cause is in Haddie’s case, they are left with nothing to do but watch. Researching this condition reveals some pretty scary possibilities.
Basically, this is the hard part. Hundreds of thousands of dollars of medical testing and no one can determine exactly what Haddie Joy’s medical problems are. They only know that she has an unknown genetic abnormality.
And Brooke and Peter want answers. I asked Brooke last night, “Do you want answers because you think Haddie’s treatment will change and things will improve, or do you want answers because you have a need to know?”
Brooke’s response was honest. “I want answers so I can find support from other parents in the same or similar circumstances. I want answers so I can use available resources and don’t have to go out and do legwork each and every time some new issue arises. I want answers so her treatment options will be more clear.”
Brooke also said, “People have put us up on a pedestal spiritually. Frankly, we don’t belong there. We’re normal. We have normal wants and needs. We still hurt and cry and ask unanswerable questions. And we will have normal tasks that need to be tended to–work, homeschool work, church, family. I don’t think people get that.”
So, I guess what I’m doing on here today is trying to clarify some things with those of you who have so faithfully supported this family in prayers and love.
Haddie is better but not well. She still doesn’t get out amidst large groups of people for fear of germs and bugs. She still has major challenges ahead of her. What happens to feeding when Mommie’s milk dries up? Will her developmental delays resolve themselves over time? As she grows, will her kidney issues improve? Are these tests going to cause as many problems as give answers? Are those scary lymphedema possibilities in her future? Are there things wrong with Haddie Joy that will be insurmountable to earthly medicine?
Still, when that little sideways grin (that’s so like her Pop!) appears on that little face, we know we are on holy ground, first-hand witnesses to a miracle. She’s sharp–able to melt grown-ups with a single smirk. All it takes for me is for her to lean into me and touch me with her forehead. I’m putty.
That’s where we are today, folks. That’s where so many parents and families of chronically ill children live daily. Just don’t stop praying for Haddie Joy. For her parents. Her siblings. Her grandparents, aunts, uncles, and so many others who have become family to us.
Philippians 1:3-6 “Every time I think of you, I give thanks to my God. Whenever I pray, I make my requests for all of you with joy, for you have been my partners in spreading the Good News about Christ from the time you first heard it until now. And I am certain that God, who began the good work within you, will continue his work until it is finally finished on the day when Christ Jesus returns.”
Thanks to all of you. Keep up the good work.