“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.”
There seems to be at least one moment of every single day that I cry out, “Lord! I just don’t know if I can do all of this another day! This is SO hard!”
Caring for a child with special needs isn’t a cake-walk. It’s a full time job. And when you have 6 other children looking to you for care as well….it’s…just…a…LOT!
BUT it’s brought light and understanding to 2 Corinthians 12:10 – So I am well pleased with weaknesses, with insults, with distresses, with persecutions, and with difficulties, for the sake of Christ; for when I am weak [in human strength], then I am strong [truly able, truly powerful, truly drawing from God’s strength].
I didn’t care for that verse. At all. I mean, it’s really not a warm cozy, feel-good verse. My flesh doesn’t always feel like “counting it all joy” when my son is throwing a tantrum and unable to communicate his needs to us. I don’t want to feel “well pleased” with my weakness when I am spoon-feeding my almost 5-yr-old each and every day. BUT, I am learning how to fall back into my Father’s lap and draw strength. I’m learning more and more how to daily be dependent on HIS strength rather than my own. And I’m learning to take it one day at at time instead of being overwhelmed and consumed with the big picture. His mercies really are new every morning. He’s working. I know He has a plan. And my job is to simply trust Him.
“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds.” ~James 1:2
Between Judah and Malachi we never quite know what our nights will be like. Two nights ago was Malachi’s turn to wake in the night. And apparently last night was Judah’s turn.
For almost 4 years Judah was a perfect sleeper – often 11-12 hours each night. But when these seizures started in May they greatly affected his sleep. For awhile we had the seizures under control but a few weeks ago he began waking again in the night – agitated and having irregular brain activity, sometimes seizures.
Last night was no exception. By 1:00am Judah was awake…and continued to remain awake and quite unhappy til 5:45 this morning.
But in the middle of the night while holding Judah in my arms I had a sweet time with the Lord. Simply chatting with Him about the fact that a miracle is what I’m believing for…Picturing myself seeing Jesus face to face and setting Judah in His lap. Sharing with Him that it seems the ONLY way we’ll see victory in this is from a supernatural touch. We’re doing all we can in the natural – he has a 24 hours EEG on Monday. Doctors are doing what they can to solve this. But even the smartest doctor cannot repair the damage in Judah’s brain.
But God can! I began to replay the miracles we’ve all read about. The man near the pool of Bethesda. He had dealt with his infirmity for THIRTY-EIGHT years! Much longer than Judah, but that wasn’t too hard for our God!
How about when Peter and John saw a man begging by the temple? He had been lame since birth! Much longer than our Judah! Yet he rose up and went walking and leaping and praising God!
How about the blind men? Their vision was far worse than Judah’s yet they received sight!
None of these things intimidated Jesus. None were too hard for Him. And neither is my Judah! Over and over these stories played in my mind. Over and over I replayed the many times He’s already done amazing works in Judah. When the doctors told us he may not live – he lived. When they told us he’ll be brain-dead, blind and deaf he exceeded their expectations. When these seizures did begin to occur, the neurologist said he was more amazed that Judah hadn’t been having them all along. Given the amount of damage in Judah’s brain any doctor would have assumed he had been having them for years. The miracle of Judah’s speech – that his favorite words are Jesus, Hallelujah, Holy, Glory! How alive his spirit is! That songs of praise and worship rise up out of his little spirit on a daily basis…
…And the confidence grew…and continues to grow….that truly, all it takes is one touch — Just one touch from my Jesus.
With a leap he stood upright and began to walk; and he entered the temple with them, walking and leaping and praising God. ~Acts 3:8
You know what a “white lie” is, right? It’s still a lie, yet we justify it as being “ok.” …Right?
How about a “white addiction?” I made it up, but bear with me here a minute…
If I was to say that I’ve been an addict much of my life, what would your mind gravitate towards? Would you immediately picture drugs and alcohol? I would. But I’ve never smoked or sipped alcohol…yet I have a pattern of years worth of addictions…
Are there addictions in life that we justify? ….and that even in our Christian circles we consider to be OK and safe and even normal? A “white addiction?”
An addiction to chocolate, or candy, or sugar in general….
An addiction to comfort foods…
An addiction to soda, especially Diet Coke…
An addiction to video games…
An addiction to Facebook… (Gasp!), or Pinterest!
An addiction to television shows, Netflix, movies…
A coffee addiction…
An addiction to the approval of others…
I could go on, but go ahead and insert here what you, yourself, have been addicted to. I’ve been addicted to each and every one of these ….no, wait, I haven’t… ha! not video games!! But the rest? Definitely, and I’m sure I could name some more.
And looking back I see a pattern – the height of these addictions was always during seasons I was not happy….seasons I was experiencing pain…seasons I was trying to avoid my present life…seasons I was running away. Sure I never left physically…but I ran away mentally and emotionally many times.
I was reflecting this evening on just how different my life feels right now….on the outside it probably doesn’t look much different… I still have 7 kids…I still homeschool…I still live in the same home, drive the same cars…. But I feel different. Yes my health has made a drastic turnaround, but more than that. “White addictions seem to be dropping off more and more….” Why? What is causing them to fall to the wayside one by one? It’s that I have purpose again…passion again…dreams again…mental clarity again…balance…
I don’t know why I have all this on my heart to share with you. But if my transparency will bless one person, it’s worth it.
Are you addicted? What are the “white addictions” in your life? Are you hooked on watching TV to live vicariously through what you see on the screen rather than live out your dreams in real life? Are you addicted to comfort foods? When experiencing pain do you run to the fridge? What are you running from? What are you trying to escape from?
There’s more to life than what you are currently experiencing. God has a plan, a great plan! A life for you that you will enjoy living. A life full of dreams and possibilities. A life you will not need to run away from. It may not always be easy, but it will definitely be worth it.
“God can do anything, you know—far more than you could ever imagine or guess or request in your wildest dreams! He does it not by pushing us around but by working within us, his Spirit deeply and gently within us.” Ephesians 3:20
Judah had 10 seizures last night……. 10!!
…we’ve had two hospital stays….tons of tests…tons of doctors….medicine with plenty of nasty side effects….and yet still, he had TEN! … in ONE night!
Know what?! It made me mad. And sad. But mainly mad…
I don’t like feeling like we took 10 steps back. I don’t like seeing my sweet boy go through this. I don’t like that we’ve spent so much time and energy and emotion in search for answers yet have none. I don’t like seeing Judah hurt, seeing Chad hurt, seeing my kids hurt…and I don’t like hurting myself quite frankly.
After throwing a pity party for far too long today I finally snuck away for some alone time with the Lord…Didn’t even know where to start but grabbed my Bible, plopped onto the bed, and opened it up. Out fell some loose papers I’ve saved over the years. They’re filled with prayers that have been prayed over us, promises spoken, notes I’ve saved, etc. What caught my eye was a page of ripped out notebook paper with my scribbled handwriting from 3 years ago.
“I want to hear the heart of God – know His thoughts toward me. I must obey His correction in my life. No running. No talking the talk. I want to be the real deal – heart burning for Him more than anything or anyone else. Fear of Him bigger than fear of any man! Desire for Him bigger than any desire for His benefits. I want to be addicted Him, His love, His friendship, His presence, His praise, his voice, His Word. Over-flowing out of the abundance of Jesus inside of me….”
You know what I was longing for?? Jesus. Just Him. His heart. His thoughts… Him…But these past couple weeks I’ve been longing for answers…longing for results….longing for a quick fix, as quickly as possible, like fix it yesterday already, God! And not finding the results. Not finding the answers. Coming up short, hurting, frustrated…trying so hard to simply trust like a little child again, yet really struggling.
I was reminded of an embarrassing fiasco from a couple months ago when I spent TWO weeks searching for my wedding ring. It consumed me. I was thinking about it constantly and looking for it everywhere. I knew I had lost it in our home so I tore our place apart looking for it. Every drawer, every cupboard, every couch cushion and it was nowhere to be found. And you know what is so embarrassing about this? IT’S NOT EVEN REAL!!! Good gravy!! I gave my real wedding ring away years ago! So here I was wasting my thoughts, energy, and time on a ring that holds no nostalgia, no precious memories, and certainly no eternal value…nothing! I could hop online and order another fake one for under fifty bucks. ha! Come on now, Krista. Get you act together!
Jeremiah 29:13 says “You will seek me and find me when you search for me with all your heart.” Well, embarrassing as it is, I certainly know what it looks like to search for something with all of my heart…but have I really searched for Jesus with all of my heart? Or only His benefits? Or only his promises? Or only his healing for my boy?
My flesh wants to retreat. Wants to check out. Wants to say, “I’m done. It’s too hard. I don’t know how to stand any more, God! It’s taking SO long!” But today, my heart is longing to “throw off everything that hinders and the sin that so easily entangles” (Heb 12:1) and do a search… not for a ring…not a google search for every remedy under the sun or every cause of seizures known to man. But a treasure hunt for something more…to begin anew with a search for just Jesus. Only Him. Nothing more, nothing less. With the confidence of Matthew 6:33 – “but seek ye first the Kingdom of God and His righteousness, and all these things shall be added unto you.
As you can see by the lack of posts on the blog, the past 6 months since Malachi’s arrival have been extremely busy. 🙂 Chad and I both came to the realization that we were totally experiencing Caregiver Burnout and needed to find help. We weren’t sure what kind of help we needed or what it would look like, but we began praying God would send it. We especially desired help on Sundays and Wednesdays so we could attend church together. In the past month two precious ladies have offered to help us. One offered to push Judah in his stroller on Sunday mornings so Chad and I can be together in the service. Another, who doesn’t even attend our church, offered to do the same thing on Wednesday evenings so I can come to church and attend the prayer meetings (I’ve only been able to attend 2 Wednesday night services in the past 6 months). It’s extremely out of my comfort zone to accept help like this; but at the same time it ministers to my heart and has been such a beautiful expression of God’s love to us. 🙂 Thank you, Father, for hearing and answering our prayers. And thank you, dear friends, for the many ways you all have been the hands and feet of Jesus to our family. We are grateful!
And in case I’m not back on this blog before the end of the year, the Dearey family wishes you a very MERRY CHRISTMAS!
“Lord, I LOVE him! I absolutely LOVE him!! I recognize that others may see an imperfect shell and see ‘disabilities’ but I don’t care about any of it. I just love him. I don’t need him to be perfect in order for me to feel love towards him. I really really love him…so much!”
…and in the quietness of my heart the Lord whispered back…
“And I LOVE YOU! I don’t need you to be perfect. I don’t see your disabilities. There’s nothing you can change to affect how much I love you. I just really really love you!”
“What marvelous love the Father has extended to us! Just look at it—we’re called children of God! That’s who we really are.” I John 3:1
I don’t like making mistakes…at all! As a girl I’d often fall asleep at night praying God would help me the next morning to have a perfect day with no mistakes. I’d plan to make my bed, put my clothes away, obey everything I was asked to do (with a smile, I might add), perform well in school and in music and simply be perfect for one whole day. Inevitably within minutes of my feet hitting the floor the next morning I had made some sort of mistake and I’d spend the rest of the day beating myself up over it. The day seemed ruined.
It seems funny, but I lived that way for so long – a frustrated perfectionist. Having children exemplified it. Now, not only can I make mistakes that hurt myself, but mistakes that hurt my children. Lord, have mercy!! Like the time I was in the back room of our house lost in a phone conversation with a girl friend not realizing my two little boys were crying and searching for me, sure their mommy had left them. Or the time our family walked into church only to realize we had left a toddler strapped in her car seat still sitting inside the minivan. Sure, it was only a minute, but my heart broke to think she was sitting there so patiently watching us all walk away. Good golly!
Chad has been so patient with me, often saying, “Krista, repeat after me, ‘I FORGIVE KRISTA.'” I’d smile and repeat, “I forgive myself, I forgive myself, I forgive myself…” But often in my heart I knew I hadn’t. I replayed my mistakes over and over. I think one of the hardest things for me to do is simply forgive myself.
My struggle grew out of proportion two and half years ago when I made a decision that some doctors would later tell me they believed could have prevented Judah’s brain injury. This is something I have not shared with many, yet it’s been the darkest part of my journey with Judah. So why do I share it now? Because I’m determined to expose the enemy, the thief, the accuser of the brethren. Because I know that freedom comes in revealing truth, not hiding pain in the dark. Because I’m determined that 2014 is the year the Lord heals my heart, and this is an action step. And I pray that my story will be a blessing to at least one person who may struggle with the same kind of regret.
Judah was born July 15, 2011. We had called him our “praise baby” for months and his labor lived up to that nickname. We praised God for a quick, smooth, beautiful water birth. The children woke up soon after he arrived. They all loved on him for a while then a precious friend stopped by to pick them up for a day of fun so mommy and daddy could rest and bond with Judah. Chad helped pack everything up for the kids while my sweet midwife helped me fill out paperwork and get everything in order. As you know, there are decisions to be made after your baby is born: when to clamp the cord, eye ointment, hepatitis B vaccine and the vitamin K shot, to name a few.
My midwife asked if I’d like to have the vitamin K shot. I said, “no.”
I found myself hesitating for a brief moment. Chad was busy outside of our room so I didn’t have time to confirm with him whether this was still our decision. I dismissed my hesitation and stuck with the answer we had chosen for our past five children. None of my children had received the shot and they had all been fine. . . why was I hesitating? Until Judah, my children had been SO, so healthy. I praise God for their health and see how easily I had taken it for granted. We had never needed an antibiotic in those 10 years prior to Judah. We never experienced an ear infection or anything more than a common cold or seasonal flu. We might have used Tylenol a total of five times in ten years. I truly took for granted how healthy we had been. And my justification continued….I knew I didn’t have the typical risk factors… My labor had been smooth without complications… And did God make every baby deficient in vitamin k? In that moment I didn’t even remember all the reasons we had chosen not to do the shot. I knew that way back when I first had Josiah there was speculation that the vitamin K shot was linked to childhood leukemia (that since has been proven false). I did not do a good job researching the pros and cons of this shot, let alone praying about the decision. And I did not think there was even the slightest possibility of anything wrong happening because of that choice. Certainly a brain hemorrhage was nowhere on the radar.
Fast forward to our 911 call, our 10 days in the NICU, and doctors questioning us. We are thankful they found answers and determined the cause of Judah’s brain hemorrhage to be Vitamin K Deficiency Bleeding or VKDB also known as Late Onset Hemorrhagic Disease of the Newborn; but that news came with a sting. “Had you given your baby the shot, this probably would have never happened….” Those words would replay in my mind hundreds and hundreds of times.
Some days are good….others are hard… Some days I feel such grace to see the positives in Judah – the joy and laughter he brings – and to celebrate what he CAN do instead of what he CANNOT do. But then there are days that are so dark I feel paralyzed by the pain of regret. It’s as if the enemy is on my shoulder saying, “Your life would be normal and easy if you would have just given him that one shot. This is all your fault. None of this would have happened if it wasn’t for you.” When I’m not regretting skipping the newborn vitamin K shot, my head fills with other regrets. Why didn’t I catch on sooner that something was wrong? Why didn’t I call 911 sooner? If only we had sought intervention sooner the injury would not have been so devastating. Maybe he’d be fine! Our life would be normal!
While two doctors have blamed Judah’s injury on not administering the vitamin K shot, I’ve had other doctors say that it cannot be proven. They’ve looked me in the eyes and said, “Krista, you cannot live this way. You cannot live with that regret. We don’t know what caused it. And we don’t know for sure if the shot would have prevented it.” Chad has held me in his arms countless times reminding me I cannot live like this. I appreciate all of their words; but I know that freedom from the regret has to be supernatural and from the Lord. It is too big of a hurt for mere words to heal.
Coming into 2014 my one prayer was, “Lord, heal my heart.”
And He’s been working….I sense it….each week becomes easier… I’ve been able to open up and share with others of my struggle and recently able to go forward and ask my pastor for prayer as well. The only words I could get out through my tears was that I was living in regret that I had opened a door to the enemy to so strongly attack my son. He laid hands on me with compassion in his eyes and allowed the Lord to work. As I soaked in the presence of the Lord my heavenly Father started speaking to my heart. “Daughter, every decision you have made for your children has been made out of love. You did not make that decision to harm Judah. You made your decision out of love for him and out of what you thought was best in that moment. You love your children. You love your children. You love your children.”
It was such an epiphany for me. Simple, yet profound and true. In that moment after Judah was born I made the decision out of love. I didn’t wish these circumstances on my son or our family. If I could go back in time and change my decision, would I? Absolutely. But I can’t. I need to move forward.
I have to remind myself that Judah’s injury was not a surprise to God. It’s not like He and His angels were up in heaven wringing their hands in despair when Judah was born saying to each other, “OH NO! What will we do?! They didn’t give Judah the shot!” No, instead, they sent in re-reinforcements. Countless people who were praying and have been praying and standing in the gap for our son, for his complete healing, and for our family. Instead He sees Judah healed, whole and complete, lacking nothing. And He sees Judah’s little spirit that is SO alive unto God. He sees that Judah’s future surpasses his time on earth and this temporal body he’s in to an eternity in heaven with eternal purpose.
God’s working. Not only is He at work in Judah, He’s at work in my heart. And He’s at work in your heart as well. He sees you. He knows you. He is absolutely head over heels in love with you. Every sin, every mistake, whether intentional or not, is completely forgiven and washed in His blood. You are free as well!!!!!
I love you! Thank you for being a part of Judah’s journey….and my own.
“…being confident of this very thing, that he who began a good work in you will perfect it until the day of Jesus Christ.” Philippians 1:6
Ready for a Judah update? 🙂
We are gradually easing back into “normal” life after being gone for nearly 3.5 months. It was a much needed getaway for our family. The Lord did so much in our hearts – we are forever grateful! But now it’s time to jump back into therapy and doctor appointments. 🙂 I’ll be taking Judah to Gainesville next week for 4 days of therapy. The following week he’ll see three doctors in Lakeland, Orlando and Tampa. Soon after that he’ll see his rehabilitation specialist and hematologist. Thank you, again, for the support you’ve shown our family to help us cover these medical expenses. Your generosity has blown us away!
We’ll also be jumping back into the hyperbaric chamber soon. Chad has been busy, busy setting it back up. I look back and wonder how in the world I spent two 1.5 hour shifts in that chamber every day. Yikes! But I know we’ll get back into a good routine.
Judah’s social skills seem to improve every single day. It’s a lot of fun seeing his personality continue to emerge. He’s imitating new words and sounds. He’s interacting with his siblings more and even with strangers (if you catch him in the right mood) 😉
“I say yes”
“I see ya”
“Butts” – compliments of his Daddy – Judah loves making us laugh by saying “butts”
He tries his best to sing along with us as we sing “Wheels on the Bus” and “Jesus Loves Me” – it melts my heart!!!! I absolutely love hearing him try to sing. 🙂
His vision continues to improve. He notices when we walk away from him and lets us know he’s not pleased. 🙂 And when we come into his visual field he says, “Hi!” It’s the cutest thing EVER!
He is more vocal about his preferences, specifically when he wants to go outside. There are times he hears the front door open and close when the other children run out to play and he gets very angry if he’s not immediately taken outside as well. I love that he’s showing us his desires and preferences.
My biggest prayer request at the moment is Judah’s eating abilities. During our trip Judah developed thrush in his mouth. It was painful for him to eat so he figured out a new way of eating. When we’d put the food in his mouth he put his pacifier in his mouth to sooth himself and suck down the food. At the time we were thankful he was eating – in whatever way he needed to. But it’s become a habit that is proving hard to break. We’re looking for a speech therapist who can help Judah learn to eat correctly, to eventually chew and eat textures, and to drink. He doesn’t currently take a bottle or sippy cup. Please agree with us for wisdom and divine direction. All of our steps are ordered of the Lord.
And last but not least, the biggest update of all!! Next June Judah will be a BIG BROTHER!!!! (GASP!) This came as a complete surprise! I admit I’m overwhelmed at the thought of a new baby coming along when Judah still has so many needs. But I also know God can do so much in Judah in the next 7 months. Our children are absolutely thrilled that we are having another child. Isaac cried when he found out and admitted, “I thought you’d never have more babies after what happened to Judah, but I’ve really wanted another brother or sister.” We are thankful for LIFE. We love all of our children dearly – it’ll be exciting to fall in love with Dearey baby #7.
Thank you for being a part of our journey. 🙂
We love you!
“Children are a blessing and a gift from the Lord.” — Psalm 127:3
Here are some before and after pictures from Judah’s MRI. In the back is the original MRI at 3 months old. On the front screen is the MRI from Wednesday. The white area that you see is fluid that filled in where the brain tissue died away. You’ll notice that in the original MRI there is a little bit of brain tissue in the frontal lobe, but the rest was gone. In the front picture you can see considerably less fluid and lots more brain tissue!!!! Our doctor said Judah has grown almost 50% of his brain back!
Praise THE LORD!!!!!!!!!
And further good news is Judah’s vision has improved and his prescription was reduced! Oh Look What The Lord Has Done!!!!!!
Look what the Lord has done for me! Luke 1:25a
200!!! 200!!! Can you believe it?! Today at 6:30 am I climbed into the chamber for our 200th dive! Amazing!! In less than 6 months we’ve spent approximately 400 hours in the chamber.
Some doctors and therapists have told us not to expect too many results before completing 200 dives; but to expect our best improvements post 200 dives. We are already so thrilled with the improvements we have seen in Judah; and we fully expect to see continued progress in our little man. God is at work!
The most notable changes we see in Judah are:
* He can see! The changes we have seen in Judah’s eye sight have been amazing!! He recognizes us, scans the room, and looks at his toys. It’s thrilling to our hearts! On top of that, MY eyes have improved! My contact lens prescription has reduced and the astigmatism in my eyes is GONE! Praise the Lord!
* He transitions to change easier.
* His overall disposition is happier.
* He desires to move! It is a joy to see Judah strive to move across the floor ~ to roll to his tummy and dig his toes in the carpet in effort to move forward.
* He’s rolling SO WELL in every direction.
* He’s interested in toys! In the past Judah only liked toys that made an interesting noise because he was so dependent on his hearing and not his vision. These days Judah will grab anything he can find (a piece of cloth, a teddy bear, a plastic bowl, a blanket, or a toy) and hold it up in front of his eyes to look at it.
* Not only will Judah look at the toy, he’ll then put it in his mouth. This is a great step to eventually learn to chew and eat textures. I’m so happy to see him explore textures (and fingers) with his mouth.
*Judah babbles! We love his little voice. Sometimes it’s as if he’s carrying on a little conversation with us. SO FUN! He can say hi, dada, mama, doodah (repeats when we tell him to say Judah), stinky, yucky, ya or yes, and shake his head no. And many times a day he is imitating our sounds. When we sing to him he’ll often try to sing along. I love it! 🙂
Throughout the day, it’s common to hear Judah calling for Daddy. 🙂
Today I told Judah to say, “Ha, ha, ha! ” He repeated perfectly! Next I said, “Say Ho, ho, ho!” And he repeated perfectly! He’s learning EVERY day! And he’s interacting with others more and more.
Thank you, from the bottom of our hearts, to all of you who made the dream of purchasing this hyperbaric oxygen chamber a reality. You are all a part of these victories!!
Here’s a little clip of our celebration in the chamber this morning. 🙂 “Weeeeee!!!”
But thanks be to God! He gives us the victory through our Lord Jesus Christ. I Cor. 15:57
We had a fun, successful weekend of six ABM sessions in Gainesville. Judah responded well and was an absolute delight. It’s hard to remember that when we first started our trips to Gainesville he often cried and needed lots of comfort. Now he shows excitement to see Mrs. Josie and enjoys his appointments. It thrills my heart!
Last night when we returned home from Gainesville Judah was playing with his toys on the floor. He’d roll to his tummy and kick his legs to try to move. (Looked like a fish out of water- so cute!) He was acting frustrated that he wasn’t getting anywhere so I knelt down next to him and showed him how to move forward as he learned during his ABM sessions. As soon as I helped him move forward he was happy. This is the first time Judah’s shown enjoyment and desire to move like that. In the past we’ve forced him to move and crawl, but now it’s HIS desire and motivation.
For in him we live and move and have our being. Acts 17:28