Well, it’s time. I’ve been resisting this for some time, praying over it for a long time, talking it over with our church family, with our small group family, seeking wisdom and checking motives. I’ve long since moved past resistance to acceptance, and then waiting for the right time, waiting for God’s time and for our move to a new home to be behind us.
This week Phoebe faces another endoscopy. This will be her third, and I’m hopeful it could be her last. She has finally finished the three-month dietary course we have been on and now we can take another look inside and see if she has improved. Since her last endoscopy showed extreme and active celiac damage (as if she was still intaking gluten) after a year and a half on a very strict household-wide gluten-free diet (along with a gluten-free lifestyle in all other products we use), the doctors wanted her on an even more extreme elimination diet of no processed foods, nothing that comes through a facility of any sort. Everything she eats has to be fresh fruit, vegetables, meats, some simple dairy sources, honey, olive oil, eggs, etc. Being that she never eats meat or vegetables without gagging/vomiting, it has been quite a challenge to endure for three months. She has been amazing–but it has brought her to tears many times. This diet is for the sole purpose of proving whether or not she is super sensitive to even trace amounts of gluten allowed in gluten-free products (most labeled “gluten-free allow 20 parts per million, and certified GF products allow 5 ppm) and/or whether or not she is considered “refractory,” which means her body is not healing even on the strictest GF diet.
So what we are hoping and praying to see on this endoscopy is healthy, healed, whole villi waving around in her small intestine. Would you pray for that alongside me?
A short time ago a group of strong men, the elders of our church, tenderhearted and gentle, gathered in a circle while Phoebe knelt on the floor in their midst, distracted with some coloring. They held hands around her, some laid hands on Brandon and I kneeling beside her, some laid hands on her. And we prayed. They prayed. They prayed over Brandon and I. They prayed for healing for our girl. They prayed boldly and asked for miraculous healing. They prayed for protection over our marriage. They prayed for financial provision. We knelt and we received it, like being washed in a healing rain.
The thing about having a chronically ill child is that the impact of it happens on so many levels. The emotions and mental anguish over a child don’t stay in a neat and tidy box, nothing really remains untouched by the life change at some point. Everything is affected. The emotional, mental, physical, spiritual, financial, marital impact of it all is continuous, overlapping and crashing into one another like waves on a tumultuous sea. The weight of worry, the gnaw of fear, the spiritual battle for trust and faith and joy in the face of an uncertain future and so much helplessness–it wears on me, it wears on Brandon, it wears on us all, I’m sure. This whole journey with Phoebe–it has changed me in a way that only grief, pain, suffering, and agony can. Those of you who have walked through that dark valley–you know what I mean.
The thing about have a chronically ill child is that you go from just parenting to a heightened level of care-taking. Everything could be a symptom, everything must be watched and monitored. There really isn’t ever a time when your guard can be down and you can breathe easy, except in choosing to trust God no matter what the health outcome of your child may be. The ramifications of having a chronically ill child are far-reaching. The opportunities she misses out on. The things I have to say “no” to for her that make her resentful with me, even while I fight for her life. It is hard and costly and in so many ways, we have borne it out quietly because it feels to soon and too deep and too personal to share all that God has done and is doing in us through this.
We’ve tried for a long time to just shoulder the financial burden, feeling like if God has entrusted this disease to us, surely He will provide all we need to treat it. I think the major and obvious oversight there was that we would be able to do that alone–without the help of the Body of Christ. I feel like God has led us to a point where we must depend on others, on the body at large. We simply have no other choice. I believe He desires for us to see that YES He will sufficiently provide for all we need through the help of others. The church is His chosen vehicle for caring for the brokenness in the world. Christ is in the midst of her, in the midst of us, and the church is His hands and feet to the broken, hurting, sick, needy. It is so much easier to be on the “giving” end of the spectrum, far more humbling and hard to be on the “receiving” end. I find myself far more comfortable with being the one to reach out and help others than being the one asking for help. I have questioned my motives, been in denial, etc. etc., but the reality remains: we have done what we can, we will continue to do what we can to just pay our bills and provide for what Phoebe needs. But we can’t do it all, and we can’t do it alone anymore.
A sweet woman from our church was on the phone with me asking me about how we are doing with all of this financially and when I poured out the reality of our circumstances and how we feel like we’re drowning silently under the load, she so lovingly reminded me that many people love Phoebe and love us and want to help, but don’t know that we are in need in this way. She reminded me that it is a gift and a privilege for those who get to give to our need, that they are blessed to do so and not to steal from them that awesome joy.
These words settled immediately in my soul: She’s our girl. Yours and mine. Yes of course she belongs to Brandon and I in the most basic sense, God has entrusted her to us as her parents. But so many of you who know Phoebe personally and also via what I share of her life on this blog, so many of you love her so. So many of you know she is hilarious, quirky, vivacious, incredibly outgoing, creative, imaginative, bold, and sanguine. She is a delight to know! I think she makes everyone she is around feel like they are her favorite. She has so much love in her heart it bursts and bubbles out over anyone and everyone she sees each day. She is wonderful to know and to love, and so many of you adore her alongside Brandon and I. So many of you have asked how you can help as we battle for life and health for her. Of course we need prayer! We are doing all we know to do for her physically. There is only so much we can do to intervene medically and naturopathically before we realize that there is this great helplessness and dependence on the God who made her body and the God who alone can heal her internally.
So pray with us! But also–if you are able, if you are willing, if you love our girl and want to invest in her life and in this health journey, then consider giving to us financially as well. It feels so icky and weird to say it, and I want to make a ton of defensive statements about the medical bills stacked on my counter, the way we’re managing money, etc., but I don’t feel like I should. I wouldn’t want you to do anything you don’t feel led to do, and I entrust our needs to our great God.
My sister so sweetly began a Go Fund Me for us a few weeks ago. She has shared it with friends and family and some of you, MANY of you, have already donated there! But many of you also contacted me to say that you didn’t want to donate through Go Fund Me since they take a percentage of the funds raised. Some of you have wanted to just send us a personal check, which is wonderful and you can contact me for my address if that is what you would rather do. I am also creating a fundraising link through You Caring as they have come recommended to me by other families who had health crises and raised funds through You Caring. You Caring is safe and secure, and also 100% of funds raised go to the recipient. If you would feel more comfortable giving in that way, the link is here:
Know that every little bit will go to Phoebe’s medical costs and treatments and is a HUGE and tangible way you can help us. She’s our girl, isn’t she?
Thank you guys so much in advance for blessing us with your prayer, with your love for our family and our Phoebe girl especially. Thank you for believing God for miracles for her. Thank you for investing in her life, pursuing her health and wholeness. Thank you for encouraging us! I cannot tell you how speechless and humbled and awed we have been by the money that has already been raised. I want to thank each one of you who have given. It has brought me to tears many times. So humbled, so awed. I just look to the Lord and say, “You bless them, God! You pour out your rich abundance on those who would so graciously give to us. You bless them in ways we cannot possibly. You return the generosity and heap it right back on their heads.” What an awesome God we serve. We can rest in Him. He sees us. He knows. He ANSWERS. I am floored by Him forever. All praise and glory to Him forever!
6 thoughts on “She’s our girl”
I will most assuredly being praying for our girl & her family! I wish I could find better words to leave here as a comment, but you’ve said it all so well, Martha. Harmon is not doing well at all and he is now on a two week gluten free test (plus no dairy) & it scares me. Thank you so much for your words! Gives me comfort. I hope you find the answers you seek & need soon for your Phoebe girl. Happy Easter. xx
Oh, my heart goes out to you!! It’s amazing how going through this journey with “our girl” has carved out this huge space in me for compassion for others walking through similar trials. I hurt for you and know so intimately how that all feels! I will pray for you and your Harmon just as you are praying for me. How crazy to connect over yarn/books via Ginny’s blog and that now our paths might cross in this way. Let me know truly how his gluten free/dairy free trial goes! I’m so sorry for you and for him. It is so scary, the unknown, but what I’ve found and keep learning is that as we walk and go it does get easier. And God is faithful! He is there to sustain, support, comfort, help, provide, and really, it’s what we need more than just the resolution of the problem. But still, we are told to ask for what we need and so we ask boldly for healing for your boy and for my girl! It took us until Phoebe was four to get a diagnosis, even though she had been sick from birth, so be patient if this trial doesn’t produce answers. I’ve heard its not until at least age 3 before they can really test accurately for celiac and maybe other autoimmune disorders. Anyway, I’m truly happy to help in any way I can. Happy Easter to you guys!
Thank you so much for your reply, Martha. I appreciate being to follow along here on your journey with Phoebe greatly. Love love LOVE her sweater in next post, by the way, forgot to mention that. It is strangely wonderful that we connected via yarn, I agree. I will definitely be asking you questions in the days ahead, I’m certain, thank you again for your support!
I know I love her sweater too! Need one in my size! 😉 It knit up so so fast, too. Also.. if you’re interested and it doesn’t overwhelm you, some reading I would recommend or at least you could look into would be 1. http://amzn.to/2o3m95g 2. http://amzn.to/2pBGQ5x They are just helpful in understanding intestinal health and the symptoms that result when our gut flora is out of balance.
Why do you air all this on the internet for the whole world to see? Is it about getting attention and sympathy? It just seems strange to me that people do this. There are so many blogs by parents (mostly moms) that go on and on describing their child’s disease and giving a play by play of their daily lives. I’m just a little suspicious. Why do you need so much attention? If the child could tell you, they would probably say they would rather keep the details within their family.
Do you have Munchausen Syndrome by proxy? If not, why so much need for attention?
Hello Dan. Wow, your words are hurtful. I don’t know you, and I don’t know if you’re a regular reader of my blog. However, I have a fairly small readership so, no, the whole internet isn’t reading what I write. I wrote this particular post some years ago at the prompting of family and friends who wanted updates on my daughter’s condition. Family and friends make us the majority of my readers. If you read the first few lines of this post, you would see that I had been hesitant and reticent to share details and if you are a regular reader here, you would see I spend quite a small fraction of my writing on her condition. However, when I have shared about her disease, it has been with her permission where possible. Sharing about how someone else’s illness affects us, though, is therapeutic and was helpful to me at the time. I can understand your suspicion, there is just a lot of disingenuous stuff on the internet for sure. It isn’t a need for attention as much as it was shared because of a need for the Body of Christ to come around and support us both mentally, emotionally, financially, and spiritually in the season we were in. This post wasn’t about me or a need for attention. It was about opening up a painful part of our lives to let others in on what was going on, to seek support though we felt so many hard and mixed emotions in doing so. Do you have a child with a chronic illness? Curious why you would care to and take time to leave an unkind/accusatory comment on a strangers blog.