The Last Two Years…

Two Years…
What have I learned in the last two years?
The doctors tell me that my Myelin Sheath that protects my Spinal Cord is progressively degenerating at the level of my C-spine (slowly-praise God!). We don’t have a diagnosis for the cause, and I won’t go into detail here about what symptoms I deal with, but feel free to message me if you want to know anything :)
BUT!!
-I’ve seen the beautiful body of Christ minister to us so sweetly and generously time and time again! Our families have been incredible! While we were still homeschooling, other families stepped forward to help so we could keep the kids home as long as possible. And we had an amazing college student who nannied for us that first semester I was so sick when I had to go to bed every afternoon. And the list goes on and on!
*I learned humility in accepting help from others when I really didn’t want to need help.* James 4-“God gives grace to the humble.”
-When we swapped to the public schools for our older two kids, we had a very selfless neighbor who picked our kids up and brought them home every day and – get this- waited in car line at BOTH SCHOOLS. Now that’s a fabulously selfless friend! We had so many sweet people who checked on us throughout our transition to make sure our kids were adjusting well, that it made my Momma’s heart overflow with peace that the Lord knew what He was doing.
*I learned that God is the Perfect Parent and that He was writing their story. I could trust Him.* Jer. 17:7 “Blessed is the man who trusts in the Lord, whose trust IS the Lord.”
-My dear, sweet husband has been a patient and loving friend through it all. Our marriage isn’t perfect, but God is perfecting us through this. We strive to keep God first, then our family, then everything else falls under that. My health doesn’t dominate us anymore. We’ve adjusted to the abnormal, as much as possible, and we’ve just had to accept there are things I cannot currently do.
*Proverbs 3:5-7 has come alive to us through this time and guides our steps: “Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths. Be not wise in your own eyes; fear the Lord, and turn away from evil. It will be healing to your flesh and refreshment to your bones!”
FINALLY…
I’ve learned that EVERYONE is going through SOMETHING and if you’re not currently going through something, you will at some point. So, please know that I am here for you! As someone real that you can talk to. I have bad days and good. I’m not always, “Praise the Lord!” Sometimes I just want to stay in bed and not be positive about our situation. But God is merciful and I’m so thankful that His love for me isn’t based on my day to day performance or acceptance of the “hand that has been dealt me”. We are all in need of His grace – above all, His eternal saving grace, and how sweet that grace is! My greatest need has been met through Jesus! All other needs we have here on earth are secondary to our need for our sins to be forgiven by him so that we may meet Him on the other side of eternity. It would be my honor to pray for you or to help show you in God’s Word some bit of comfort or peace in your time of need.
Psalm 130:7 “O, Israel, hope in the Lord! For with the Lord there is steadfast love, and with Him there is plentiful redemption!”

A Jumble of Emotions

If I could describe our life over the last 8 months, that would be it-a jumble of emotions. For the last 2 weeks, I’ve had really good days! I have begun driving much more, had enough energy to do things around the house and enjoy our family time, and the daily issues I deal with have been manageable without narcotic pain medicine. I’ve been able to go to church, my dizziness has been drastically lessened, and we’re even daring to dream about a more hopeful future where I can take care of the kids more. I still have to rest up in order to do these things, and then rest afterwards, but if I manage my rest/activity time right, I’m able to do so much more than I have been able to do at any other time in the last 8 months! The kids are doing great in school and have been blessed to make friends while still keeping their homeschool friends. God is blessing our family business and Chad is truly enjoying his work. And for all that, we praise God! We feel happy, joyful, lighthearted, and hopeful!

But just a month ago, I had a urinary tract infection that stopped me in my tracks for 2 weeks. Unfortunately, this is an issue that a lot of people with spinal cord degeneration deal with.  My neurologist said, “I told you this could happen…” And when it caused every nerve in my body to flare up and I was in intense pain, my primary doctor said, “I told you that any infection or virus you have will likely cause everything to flare and be more difficult to get over…” Honestly, no matter how gently they delivered those, “I told you so’s,” it hurt. And no matter how great a day I’m having, a phone call from one of my doctors and knowing we are still waiting for genetic testing to be approved by insurance can come crashing in as reminders that everything is not alright. And in those moments, we feel despair, desperation, fear, and anger.

Some days I feel like Dr. Jekyll and Mr. Hyde, with my emotions going from one extreme to another.

God is teaching me not to be afraid of my emotions. I am made in His glorious image and emotions are a gift from Him! The Bible is full of God’s emotions: amazingly tender love, compassion, forgiveness, and even anger and wrath. And the beauty is, God is always in control of His emotions and never sins. Every action and emotion is perfectly justified and executed. I think I’ve been afraid of handling some of my emotions wrong-acting sinfully in anger or getting stuck in despair-so often, I’ve stuffed them down deep and covered them with a thin veneer of thankfulness topped with a smile that has become impossible to keep from cracking.

I don’t always have to be okay, and neither do you. And I can guarantee you this-if we don’t deal with the emotions we are feeling in a healthy way, they will eventually come out in a harmful way.

So I did something yesterday that I don’t normally do. I wept. And I mean, ugly cry x10, sounding like somebody died, kind of weeping. Because I’ve been doing so much better, I’ve felt like I should have no negative emotions right now. I should just be thankful and positive. But I was feeling increasingly frustrated and angry. I couldn’t understand this! What was wrong with me?!?

Through a sermon I listened to on “The Trinity and Christian Prayer,” God reminded me that I don’t have to understand what I need when I come to Him in prayer. The Holy Spirit intercedes perfectly for me on my behalf. This was so freeing for me! So freeing, in fact, that I fell apart in a good way. I let go of my need to “Be OK” and just let myself BE. I read scripture out loud and didn’t rush through it. Psalm 91 and Psalm 103 proclaim so clearly what I would like God to do for me and also who He is so that I am reminded that I can trust him no matter how He sees fit to answer my prayers. And as I felt His loving acceptance wash over me in spite of my imperfections, I wept. My weeping eventually turned to praise, which turned to peace.

God is good, isn’t He?

I’m still learning how to let Him lead me through this maze of emotions and circumstances. I want to handle everything right all the time. But I’m thankful that on my worst days and my best days, I come to Him in Jesus’ name, not my own.

“Bless the Lord, O my soul, and all that is within me, bless His holy name! Bless the Lord, O my soul, and forget not all His benefits, Who forgives all your iniquity, Who heals all your diseases, Who redeems your life from the pit, Who crowns you with steadfast love and mercy, who satisfies you with good so that your youth is renewed like the eagle’s…As a father shows compassion to his children, so the Lord shows compassion to those who fear Him.”

Psalm 103:1-5,13

We are so thankful for all of you who has stuck with us over the last 8 months and interceded faithfully for our family! So many of you ask what our prayer needs are, so I wanted to let you know how you can pray right now.

1-Pray for our kids. Although we are super careful about what we share with them, they have had their lives turned upside down this year and they have just as many crazy emotions as we do. Last week, one of our kids admitted that they are still angry that we can’t homeschool anymore, and from the outside looking in, they’ve adjusted perfectly. But this anger was so intense, it was coming out in hurtful ways toward their siblings. Pray that we will have wisdom as we seek to help them deal with everything and for them, that all this will push them in to the heart of God and not away from Him.

2-Pray for Chad. An incredible weight falls on him and he loves and serves so well in our home! But he has had his own share of physical suffering since November with neck pain and almost daily headaches from bulging and herniated discs. Please pray for healing and clarity about a plan of care for him so that he can have relief.

3-This prayer was sent to me by a dear friend last night, and I couldn’t phrase it better-Pray that I would be on the mind of the doctors, a supernatural intervention where they just can’t get my case off their mind until they do their due diligence in getting the testing approved. Pray the insurance company quickly approves the testing without a huge co-pay. And that as we wait, we would do so with patience and trust.

Thank you, my dear friends! I praise God for each of you and am so grateful to Him for blessing me with you all on this journey!

“The steadfast love of the Lord is from everlasting to everlasting on those who fear him, and his righteousness to children’s children…” Psalm 103:17

And Now We Wait…

“Therefore I tell you, do not be anxious about your life…Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life?…But seek FIRST the kingdom of God, and HIS righteousness, and all these things will be added to you. Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.” Matthew 6:25-34

Let’s just face it-WAITING STINKS

Patience is not one of my stronger virtues. (I can hear my mother laughing as she reads this) Fighting for the contentment to wait on “God’s perfect timing” has been a constant struggle for me my whole life and even more so the last 6 months. This has been a season of waiting. I know the truth: God is in control of when appointments are made and labs results are received. It’s all about trusting Him! It’s nothing more than that and it’s nothing less than that-if that makes sense. Through all this, He is after our hearts, not our happiness. Do I believe God has allowed all this just to teach me patience? Absolutely not. He is a loving Father and in Lamentations 3:33 we are told “He does not willingly afflict or grieve the children of men.” The above verses from Matthew have been some of my heart verses that have kept pulling my eyes toward Jesus when I get them on my circumstances instead. So, while it stinks to wait, God has been good to chip away at my impatience through this to help me see the beauty in today. I’m tired of missing things because I’m caught up in anxiety over things I can’t control.

And then there are days that we get pleasantly surprised…

The day after my neurology appointment last week, my sister, Erin, and I were praying together and she asked the Lord to bring the appointment up in His perfect timing. Originally, my appointment was set for May 6th, but we have been praying fervently for it to be moved up so that we can get a plan of care in place and also so that we can make plans for our kids for next school year. I had such peace as she was praying this! As soon as I hung up with Erin, I wrestled with whether or not to call, as I had just called a few days before and I was trying to be patient. (Again, I’m hearing my mother laughing) I decided to go ahead and call again, and could barely believe it when the receptionist immediately said, “We can get you in next Wednesday.” I was shaking and crying as I called Erin back to tell her what God had just done. This news was just the encouragement I needed after our appointment the day before where we were told I might have more degeneration taking place.

So, yesterday was the big day. The Genetics Clinic at UAB is an amazing place! They see all the people who are referred for genetic testing, from infants to adults. There are several different geneticists who work out of the same clinic. When my neurologist referred me there, my records had to be sent and reviewed to see which geneticist I should see and when that appointment could be set. Appointments take anywhere from one to two hours and they can only see a few patients each day, so you can see that it could take a very long time to get an appointment!

We weren’t sure what to expect, but it wound up not being a super emotional day like I thought it might be. Dr. Lose did an examination and his genetic counselor took an extremely thorough family history. He basically said what my neurologist said, that my labs point toward leukodystrophy, but my physical exam and even my MRI don’t. Without further testing, it’s impossible to know for sure what’s going on. He ordered some labs that were able to be done yesterday, and he also ordered genetic testing. That’s where it gets a little trickier. There are no labs in Alabama that actually do that kind of test, so blood has to be drawn and then sent off. Insurance does not like to pay for such expensive testing, so the clinic actually communicates with the different labs about what tests need to be done, then the labs communicate with insurance to see what they’re willing to pay, then the labs tell the clinic what our amount to pay will be, then the clinic compares the different deals and tell us what the best one is, then we decide if we’re willing to pay that amount, and then I can finally have the labs drawn, which take around two months to get back.

So now, we wait. And actually, I’m okay with that. I want to enjoy this beautiful weather and have fun with my kiddos on their spring break. I want to praise God for the good report form the ophthalmologist this week that my optic nerves show no signs of degeneration. I want to celebrate my Buddy’s 9th birthday today and be able to truly enjoy these moments that I’ll never get back. Fighting impatience and anxiety will always be something I struggle with. But I’m so thankful that my Heavenly Father knows what I need before I even ask, and today what I need is to trust all this to His loving hands and to have a light and joyful heart in the interim. He has given these things to me as gifts and I love Him for it!

“It is good to give thanks to the Lord, to sing praises to your name, O Most High; to declare your steadfast love in the morning, and your faithfulness by night, to the music of the lute and the harp, to the melody of the lyre. For you, O Lord, have made me glad by your work; at the works of your hands I sing for joy.” Psalm 92:1-4

Hard Days and Truth

This is a big week.

Last week I had a check up with my neurologist, Dr. Meador. I was happy to report to him that I have improved in some ways! I am no longer needing a cane for assistance (I mostly used one because of the dizziness I struggle with), my energy level is improved, the dizziness has scaled back some, and I’ve even had a few days when I felt well enough to drive. However, I do have some new issues with swallowing, vision changes, taste changes, and something happened at the doctor’s office when I had to have a nebulizer treatment for bronchitis a couple of weeks ago where my hands drew up, I couldn’t feel them or move my right one for several minutes. Dr. Meador was concerned that this may signal a worsening of the deterioration of my spinal cord and some brain stem involvement.

That brings us to this week. Tuesday I see the ophthalmologist and then Wednesday is the long awaited Genetics appointment. This is the appointment where they will tell us whether or not they think I have a form of leukodystrophy. Leukodystrophy is a chromosomal abnormality where the body is deficient in an enzyme that helps produce white matter, which includes the myelin sheath that covers the spinal cord and the white matter in the brain. People with leukodystrophy have progressive deterioration of that white matter.

So, here I sit, on Monday morning, praying about this week. And to be honest, I’m fighting some anxiety. Because once you know something, you can’t un-know it. Until now, and for over six months, we’ve not had any answers or even any abnormal labs. My MRI is definitely abnormal, but even with that, ignorance has become acceptable. It’s funny how you think you want answers but then when those answers are hard you don’t really want them. It’s like you want to scream, “I take it back! I don’t really want to know!” My mind is drifting to friends who have had hard days like these, and for some, even harder. Cancer diagnoses, children taken from their arms too soon, family members who are self-destructing and they are helpless to help them… How does anyone get through this life without hope of a better life waiting for us when all things will be made new?

Isaiah 25 speaks so clearly and earnestly to me today, urging me to look Heavenward.

“And He will swallow up on this mountain the covering that is cast over all people, the veil that is spread over all nations. He will swallow up death forever; and the Lord God will wipe away tears from all faces; and the reproach of His people He will take away from all the earth, for the Lord has spoken. It will be said on that day, ‘Behold, this is our God’ we have waited for Him, that He might save us. This is the Lord; we have waited for him; let us be glad and rejoice in His salvation.'” Isaiah 25:7-9, ESV

Everyone has hard days. No one escapes from that reality. But I can choose how I respond to the reality before me. So, today, I choose joy. I choose trust. I choose to let go of things that only God can control, and to fix my eyes on Jesus. It’s a struggle to not give into fear, and there’s no doubt that I’ll have major butterflies in my stomach on Wednesday, but my desire is that I will seek Him first. That I will have in my spirit on that day, and on all the other hard days that will come, His truth and promises that this world is just temporary. He HAS defeated death, sickness, and sorrow and He HAS healed me, whether that healing is revealed here or in heaven. HE gets the last word, Him and no one else. He goes before me and I AM NOT ALONE. He is with me and He is for me and how can I not trust He who gave His very life for me? Because of these truths, and so many more, I can have peace in the midst of the storm.

“You keep him in perfect peace whose mind is stayed on you, because he trusts in you. Trust in the Lord forever; for the Lord God is an everlasting rock.” Isaiah 26:3,4, ESV

We Will Hope In Him

We are a family that absolutely loves to be together…

We are a family that loves to laugh together, have dance parties, watch and identify the gazillion birds at our bird feeders, dominate each other at video games, build amazing lego creations, read good books, discuss theology, and spend ample time with our family and church family. We are Chad and Pam and three precious blessings. Our kids love nothing better than for all of us to be cuddled up together, piling way more people on one piece of furniture than is recommended (our dog, Pepper, included), talking and laughing and watching AFV and science videos on YouTube.

kids.snow

We are Christians…

This fact determines everything that we do, how we rear our children, and how we spend our time and resources. God’s sovereignty, mercy and goodness are our anchor and hope. His sacrifice of giving His perfect life so that our sins may be forgiven and we may be His children is the Gospel (literally, the Good News) that saves us and that keeps our eyes turned Heavenward.

We are in a hard season…

One Wednesday afternoon in August 2014, Pam’s face began to have a strange, pins and needles feeling on the left side that quickly spread downward. An MRI revealed a lesion (damage) to her spinal cord in her neck. The review of a past MRI from a similar episode 4 years before, showed the same lesion, just smaller (and no, we were never told it was there-different doctor this time). When that lesion is in an active state of inflammation, it is called Transverse Myelitis, which is a descriptive, not diagnostic, phrase that tells the direction and location of the inflammation. That launched us into a (so far) 2 year long investigation to find the cause. We have been blessed with a neurologist at UAB’s Kirklin Clinic who is unwilling to accept “I don’t know what caused this,” as an acceptable answer. But because we haven’t found a cause, there is no cure for this, and at this time, treating symptoms is all he can do for her while we pray for answers.

So, what has this meant for our family? It had taken Pam almost 3 years to recover from the first Transverse Myelitis flare with only minimal difficulties remaining. In the matter of a week, Pam went from being active, with one of her favorite activities being jumping on the trampoline with the kids, to needing assistance when walking and being unable to take care for our children and home without assistance. After homeschooling for 4 ½ years, we knew we had to let that go so that Pam can rest and recover more fully. We’ve both had to completely change our lives, work, and activities during this season in order to accommodate all the doctor’s visits and our family’s needs.
Now, 2 years into this season, she’s been able to take up homeschooling our older children again and has been blessed with some restoration of her abilities.

We have been called to share…

This blog has been birthed out of a desire to share the gift we have been given: hope in the midst of despair. 1 Peter 1:3-9 says, “Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, who by God’s power are being guarded through faith for a salvation ready to be revealed in the last time. In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ. Though you have not seen him, you love him. Though you do not now see him, you believe in him and rejoice with joy that is inexpressible and filled with glory, obtaining the outcome of your faith, the salvation of your souls.” We believe that everything our loving Lord allows in our lives is ultimately for His glory and our good. Daily, we see his goodness in the midst of pain. We would love to share this walk with you so that you may see the reason that we Hope In Him.

“My soul…is bowed down within me. But this I call to mind and therefore I have hope: The steadfast love of the Lord never ceases; His mercies never come to an end; they are new every morning; great is Your faithfulness. ‘The Lord is my portion,’ says my soul. Therefore I will hope in Him.”

Lamentations 3:20-24