Lucy's been extremely ill these last few months, with ER visits, suffering from new seizures, living with unbelievable spells of pain, and being hospitalized for c-diff twice, thus far. Henry's suffered from an extreme PANDAS flare, the likes of which we haven't seen in well over a year, mainly because he needs a new round of IVIG - the same treatment he received last year in D.C. and yet, it's simply financially unattainable at this time.
Struggles, fear, doubt - lonliness in the trials, heartache in the journey; a roller-coaster of emotion, thought, feeling, and experience.
Lost Faith
In this post, I'm sharing personal struggles, fears and doubts. I'm sharing these because I believe it is healthy for us, as individuals, to do so. We can help one another and encourage one another by sharing our burdens and our journeys. In making ourselves vulnerable, we make ourselves, "real". There is great beauty in allowing the world to see we aren't perfect, that we are indeed, needy individuals - in desperate need of friendship, support, love, and forgiveness. All of our intimate needs can be met, WILL be met, in and through a relationship with God.
This Summer, maybe even back to the Spring or even Fall, I started to truly doubt God. My heart was hurting, my feelings raw. In my heart and mind, I had spent my entire life, from as far back as I remember, surrendering everything to God, as best I could, and STILL . . . still, my world continued (continues) to fall apart - to fall into pieces, all around me.
The PANDAS, the NKH, as well as the stresses and illnesses coming about because of those things, have held us captive as a family and as individuals. Our hearts have also remained broken for dear friends who've recently suffered the earthly loss of their children, both within our Hope Link and NKH Communities. We long to see God move in miraculous ways on behalf of friends suffering from long hospitalizations, life-changing accidents, and everything in between. Life is hard and it isn't meant to be lived-out alone. Contrary to some beliefs, NO man is an island and no man should try to live as though he is one. It won't work. It's not the way we are made.
Struggling with this lie has been a life-long struggle for me and I'm laying it all out there for you. Sure, I believe God can, will and DOES perform miracles, does good, makes beauty from ashes, but it doesn't really happen for me or won't really happen for me. When Ellie Kate was born with something genetic - something which literally CAME from MY DNA - that only convinced my belief that the "good", the promises, the miracles, the fairy-tales, were all for someone else . . . someone MORE obedient, MORE devoted, MORE called, than me.
Over the years, I accepted this lie (although sad about it) because I really and truly gave God EVERYTHING - from my food to each class at school; from my friendships to my thoughts, from my hair to what clothes I would wear, to every move in my cheer and tumbling practice to every single word that left my lips, every single thought which popped into my mind.
I'm not talking about a pity-party or bouts of depression, although those certainly have been a part of our journey. No, this is something I have really struggled with and learned to accept, even live with. But Friends, this is where FAITH steps in. Without faith, I am nothing - without faith in my marriage and my partner; without faith in our doctors on behalf of our children, without faith in our school system, without faith in our counselors and more - well, we just couldn't survive, living a life of crippling fear and severe anguish. I don't want to live that way. I WANT to choose FAITH, to choose to walk by faith. I CHOOSE a GOD I believe created me, designing me for a purpose.
A Moving God
Around July of this year I chose FAITH, after months of letting DOUBT win, I was enabled to reach out for something more - LIFE and liberty within and without. I did not do this because I felt like it - in fact, I felt the opposite. Personally, I know this faith and the ability to choose God, only COMES from God. I chose to surrender again, because the Christian Life, the life of the Believer, is one of constant surrender. We recognize we cannot possibly handle this life on our own. We accept the fact that we need help, that we would be miserable within the intervention of a Mighty God and all that He is, WHO He is, and He IS who He promises to be.
I've asked the Lord to help my unbelief. I am willing to choose Him and I am in a spot where I desperately want Him - I want Him to take over my heart, consume my thoughts and be established as Lord. I want to see God for who He truly is and I want to fully trust Him and His character. Desperately, I want Him to woo me, to show me His goodness towards our family, to show His provision as He has undeniably done in the past. I've been asking Him to show up like this since July and ya'll, He HAS.
Since July, we've been gifted a washing machine, among other sweet and unexpected gifts. Friends came together for the washing machine, which makes it mean even more to us, especially as some of these friends also walk a continual road of suffering. What a beautiful thing! Having a Lucy Belle (NKH, Cerebral Palsy, epilepsy, diapered, etc) as well as a typical one year old baby, a typical 15 year old boy, and a Henry (frontal-lobe damage, seizures, PANDAS, etc) - well, we have a lot of messes overnight and during the day, doing approximately 3-5 loads of laundry each day. God GAVE us this gift and it moved my heart closer to His.
This Gift sparked something within me and I began to realize God has NOT forgotten me. He has not forgotten my children, my husband or my family, as a whole. In fact, He very much cares about our needs.
Last week, we were able to take an unforeseen trip to Eureka Springs. All four of our children were able to go and Mike's mom (Jayme McLaughlin) met us in Arkansas, along with her dog, Maggie Mae. It was WONDERFUL to see Jayme and the kids adored spending time with her (let's face it - they also loved seeing the MiMi and PawPaw's dog, Maggie Mae). Although we had no idea how taking Lucy would work, it all turned out fine, even if we did continue to trash most sheets, blankets, towels, and clothes because of continued c-diff (no hotel/motel belongings were destroyed/trashed). We brought just enough disposable pads for the trip and didn't forget a thing, which is a big deal for us.
I had no idea God would provide all of this - the time, finances and details for this trip, including a rental SUV so we could safely carry all children and all equipment. In fact, I was so sad we had not been able to get away for the summer. In fact, the boys had only been swimming one time because of the constant illness and more. This Trip is also something GOD has done, something HE allowed and orchestrated. Once again, my heart is moved closer to Him, closer to the Truth and further from the lies my heart has been tied to for most of my forty years on earth. He swept in and swept us away, giving respite, providing joy and laughter we so desperately needed. He very much cares about our needs AND our desires.
The Future
I wish I could tell you that now, after everything God has done for me and for our family this Summer, I am gleefully trusting Him; but that isn't where my heart, mind and body are at this time. I'm still asking God to step in - to sweep in and move things around inside of me and inside my Family. I'm still choosing Him - I'm choosing to believe He loves me and wants good for me and for each my children. I'm asking God to continue to help my unbelief, to continue to deepen my desire for Him. I'm asking Him to do new things within me and within my family, which I haven't been able to do in a very long time.
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SO, there you have it - My heart and Spiritual State as it has been, in many ways, for the last several months. Thank you for allowing me to share it. Thank you to those who've had the patience to read through this particular blog. Even more so, thank you to those who have obediently given and reached out to us, to me, even when it was not deserved or warrented. It is YOU who have shown us God's Heart; it's YOU who have shown us Father, Son and Holy Spirit.
I could not be more grateful for your ability and willingness to be used by Him on our behalf . . .
Ryan
- Jeremiah 29:11-14 (ESV), "For I know the plans I have for you, declares the Lord, plans for welfare[a] and not for evil, to give you a future and a hope. 12 Then you will call upon me and come and pray to me, and I will hear you. 13 You will seek me and find me, when you seek me with all your heart. 14 I will be found by you, declares the Lord, and I will restore your fortunes and gather you from all the nations and all the places where I have driven you, declares the Lord, and I will bring you back to the place from which I sent you into exile".
-Romans 8:28(NLT), "And we know that God causes everything to work together[a] for the good of those who love God and are called according to his purpose for them".
- Jeremiah 9:24(TLB), "Let them boast in this alone: That they truly know me, and understand that I am the Lord of justice and of righteousness whose love is steadfast; and that I love to be this way".
- Lamentations 3:24-25(ESV), “The Lord is my portion,” says my soul, “therefore I will hope in him.” The Lord is good to those who wait for him, to the soul who seeks him.
