Then There Were Four: A Time to Laugh

At 5 weeks postpartum, we are finally getting settled into who our new girl may be. Calm and fiesty and an observer and lover of people. We’ve experienced enough of life with two littles that I now feel qualified, caffeinated, and rested enough to continue documenting our journey.

First of all, I am humbled by the parents who have started following or reached out through Instagram or other mutual friends. My blogging is never for the purpose of keeping an online diary (My journal, my husband and Jesus get to process my raw thoughts. Lord help them all. Lord help, the Lord?) And it’s not my personal cry for help (I’ve got some friends and family who have the obligation of watching me ugly cry ūüėÜ) But I keep writing in hopes that even one person on the journey of disappointment or special needs will know they’re not alone. So to know that people are finding our story and getting encouragement from it is what it’s allllll about for me and our family!

Our oldest daughter Jane has a complex form of epilepsy, most closely resembling Lennox-Gastaut syndrome. It’s not easy to manage and it morphs into all different kinds of seizures, requiring many medications. In addition she has diagnosed encephalopathy. Which basically means ¬†her brain is going haywire all the time. Every day has lots of brain “hiccups”, twitches, spasms, and when we are not so lucky, tonic seizures that freeze her whole body and potentially steal her developmental progress. And for all the inquiring minds, marijuana is not a good fit for her type of epilepsy. Not that anyone has ever asked us about that…

Jane was not born with epilepsy, but acquired it due to a blood sugar incident at 3 days old and mismanagement of medications. Jane was a completely healthy baby in utero and was sent home from her natural hospital birth with a clean bill of health. So when people would ask us about how my second pregnancy was going with concern in their eyes, we would politely answer “Good!”, knowing full well that it wasn’t the pregnancy to be concerned about, it was the hours, days, and months postpartum to watch out for.

This knowledge of what had happened to our first, while experiencing the new life of our second is a tension that we face every day as the parents of a child with special needs, and one without.

It happened only minutes after Haven was born. She looked just like her sister and the same midwife who delivered Jane delivered Haven. The same postnatal Doctor examined me then as he did 2 yrs prior and although Haven was born in a flash and I was told I was “made to have babies”, instant grief to relive, or get back the first moments of Jane’s life set in. The same feelings occurred when we were home with Haven and my mom and I watched Haven gaze out the open living room window, her little mind perfectly aware and her eyesight intact. Such joy mixed with tears of grief since at 7 months old our oldest daughter had experienced such traumatic seizures due to misdiagnosis and incorrect medications that the part of her brain controlling eyesight was for all intensive purposes, erased.

Never before had we experienced such a miriad of emotions. “Redemption” used to be such a positive word but now every time something was “redeemed”, it also pointed to how something was previously lost, and thus, worth redeeming.

But for every milestone we come up against, familiar appointments, faces, or accomplishments, what can be more challenging than facing the grief is allowing ourselves to completely rejoice. In the words of a close friend after my 38 wk appointment with Haven, an appointment that had gone so differently with Jane,

“Breathe in each step in this process of redemption. It’s hard. It brings new grief. But it’s right and it’s what is yours.”

And then I said, “Well put”

And then she said, “I love you”

And it was totally beautiful and it all happened over text message as most meaningful conversations do.

The point is that even in the tension of a disappointing journey that is not over, it is ok to sit back and expect things to go WELL. To expect HEALTH. To laugh when something is happy and clap when an obstacle is overcome. There is a time for mourning but there is a time for dancing. Sometimes the two are separated by days and years, but sometimes they occur simultaneously and you learn to dance through tears and rejoice through sorrow. The victories are that much sweeter and the process is that much richer. It’s a tension not easily managed, but it’s where we’re at and thanks to both of our beautiful, silly girls, we’re getting better at the laughing.

For everything there is a season, a time for every activity under Heaven. A time to be born and a time to die. A time to plant and a time to harvest. A time to kill and a time to heal. A time to tear down and a time to build up. A time to cry and a time to laugh. A time to grieve and a time to dance. Ecclesiastes 3:1

Pain, Holidays & Church 

cropped-img_2170.jpgIt was the eve of Easter 2016 and our family was full (in every sense of the word considering we’ve had meals brought to us for the past 2 weeks), our newest baby was healthy, our girls had sweet matching (but not TOO matchy matchy) outfits picked out, a family gathering was planned for Sunday afternoon, and yet Saturday night I stood crying in our kitchen, facing my husband, my heart aching.

We were each getting ready to attend our Saturday night church services. He at one campus to lead worship, the girls and I at another. It was sure to be a wonderful church service, full of people. And yet all I could say through tear filled eyes was “I’m not sure what to do about Jane”.

It is not uncommon for me to cry in the kitchen, for Rich to have to stop what he’s doing and hug me and listen. Since all of Jane’s diagnosis I’ve learned to be honest as my emotions present themselves. I’m not unfamiliar with grieving at random moments. But the truth is, when you’re dealing with disappointment, holidays are hard and church can be painful.

This realization first came to our family Christmas of 2015. I sat holding our tired child in our blue recliner feeling much the same way as I did before church this Easter, telling Rich, “I just don’t want to go.”

Jane wasn’t as little as she used to be. We couldn’t just hold her silently in her cute outfits anymore. She came with a little more, well, work. I knew that dressing her up likely meant that either throw up or drool would “ruin” what she was wearing in a matter of minutes. Other families would probably be taking Christmas photos with smiling children who aren’t over stimulated by noise or light. And some child who is exactly Jane’s age would probably be up on stage singing all the words ¬†and doing all the dance moves to the yearly Christmas song, looking as cute as ever, talking and mobile. Checking Jane into childcare meant leaving her with babies half her age, hoping someone would know her nonverbal cues of what she needed. They wouldn’t know that she can only sit with support, but you definitely shouldn’t hold her like a baby. They would need to wipe her drool and she would love to be held, but only for a short time since she is much bigger now. But the thought of her sitting alone in her stroller because she was too heavy to hold also tore me to pieces.

In short, what I anticipated to find at church, was an amplification of my lack. Kids who can walk and talk. Parents who have healthy babies and can check their kid into childcare without worrying if they’ll be having a seizure in their absence. It all seems to scream at you when you go to a gathering as large as our church, and even more so on holidays.

And I can only imagine that this rings true for many people dealing with disappointment.

You’ve been unsuccessfully trying to conceive and all you can see are pregnant women and newborns. You lost your job and all you see are wealthy people joyfully leaving their checks in the tithe boxes. You are single and see couple after couple walking in to church holding hands, grabbing seats in pairs. You’ve lost a loved one and all you can see are joyful people, ignorant of your grief. Your lack is amplified.

This is what I expected before going to church this Easter weekend. But what I encountered was much different.

Upon checking Jane into childcare we were greeted by the friendliest faces, who were understanding of her limits and potential needs. While my heart still aches at her condition, my mind was greatly put at ease.

But the peace and the assurance I needed didn’t stop with dropping off my oldest. Within the walls of the main sanctuary, the music began to play, and with my newborn strapped to my chest I sat in one of nearly two thousand seats. A man got on the microphone and began to recite the almost innumerable attributes of the God we were celebrating. It was moving, powerful and all true. Suddenly, as I tried not to fall on the floor and ugly cry, my lack was outshined by something greater — the abundance of Jesus.

I wasn’t just one anymore. One alone in my kitchen, one silent in my car, one contemplating the future of my family- I was one of thousands. Thousands of hurting, broken people who are in desperate need of someone who can heal their hurts, no matter what state they come in. One of a multitude who are in need of a Savior. And amongst the multitude, He had made a place for me. He’s made a place for me in my darkest times. In eternity, in His arms and in the gathering of His church, I have a place.

As I joined the multitude of worshippers that Easter eve, there was a beautiful melding of my lack and His abundance. Of how real my turmoil was but also the scars He bore so I can have peace. An awareness of my daughter’s great need for a miracle and the fact that only He is capable of giving sight to the blind. When all I can think about is the ticking of time, watching developmental milestones pass by, writing down the next appointment on the calendar, He is eternal, timeless and always patient with me. And in my most selfish, insecure state, there is a place for me amongst the criminals, adulterers, lame, weak, confused, desperate people who Jesus loved and is still loving.

His hope can be found outside of Easter, outside of Christmas, and absolutely outside of a church building. But what I don’t need is another Starbucks therapy session, a Doctor’s good advice or an organic diet and exercise in an attempt to heal. I need the unified cry for a risen Savior to come heal the hurts of a desperate people. A cry of which He will never ignore.

Matthew 15:30 Then great multitudes came to Him, having with them the lame, blind, mute, maimed, and many others; and they laid them down at Jesus’ feet, and He healed them.¬†

1 Corinthians 15:17 & 20 If Christ was not raised from the dead, your faith is worth nothing…But it is true! Christ has been raised from the dead!¬†

Luke 24:5-6 Why do you seek the living among the dead? He is not here. He is risen. 

 

Preparing for normal in an unpredictable life 

I believe I have taken about 3 pictures to document this baby girl #2 of mine. And it happens right before bed with tired eyes and bad lighting. At this point in my pregnancy with Jane (I am now almost 25 wks along), I think I had approximately 87 pictures of my “bump”. Oh sweet, second child, I promise I love you.

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While it was not our motivation in conceiving, I think I had the notion that a second child would “normalize” our lives. That God and fate would know that life must be easy for a pregnant mama. Therefore, Jane would get healthier, appointments for her would become more sparce, and I would have an unending supply of super strength and energy to get me through to D-day. And delivery would probably consist of Enya music playing in the background while a midwife brushes my forehead with golden feathers in the comfort of my spa-esque million dollar home. Hilarity.

A few weeks ago, upon finishing my 1st trimester with Baby #2, we noticed Jane’s infantile spasms multiplying from the manageable number they currently were. To add insult to injury, our already underweight Janie started sporadically, and unexplainably, throwing up her meals. ¬†We travelled to Orange County (7 hrs from us) to hear that we should either admit her unexpectedly that evening or plan on returning 4 weeks later for a long term EEG. We chose the latter. At 23 weeks pregnant I journeyed with my mom and my very cranky child back to the Children’s Hospital to see what our next step should be. I was up every 2-3 hrs due to hospital noises and maternal instinct, and had wild Braxton-Hicks most likely due to stress and the super duper comfy hospital cot they let you sleep on.

After 3 days we were sent home on an additional seizure med for Jane, and a plan to get her on a gastro-intestinal feeding tube to aid in her weight gain. A follow up EEG looms for sometime next month. Meanwhile, evaluations, a temporary nose feeding tube and minor surgery for the real deal will all hopefully happen before the holidays.

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Countless appointments, thousands of miles, 4 medications for Baby #1 and approximately 16 weeks until Baby #2 is here. Sometimes you just have to laugh:)

With all that said, on top of caring for an immobile toddler with my increasing belly weight and an ornery sciatic nerve, it becomes more obvious that our journey is not so normal. I wish my biggest concern for my pregnancy was avoiding sushi and sleeping on my side. But that’s just not the case. Thankfully I have seen many a mom and dad go before us, caring for an ailing child, dealing with special needs, and still carrying a healthy subsequent child and rocking out life.

Every day is a battle of emotions, choosing trust over fear, finding rest amongst chaos, and knowing when to fight and when to let go. In hopes that a parent in a similar situation needs this one day, there’s a few things I try to make room for in preparation for this very unexpected journey.

1. Jesus. Faith. Knowing His promises. Believing that they are for me and they are real and true.

2. Thankfulness. There are so many potential worries for our future. I’m doing my best to maintain an attitude of thankfulness for what I currently have, not what could potentially go wrong.

3. Marriage. My husband and I recently started marriage counseling. We don’t want a divorce. We love each other, laugh at each others jokes and find one another very attractive:-) However, when you live an unpredictable life (think hour to hour of unpredictability), it’s important to major on what matters. And for us, that’s our marriage. It’s an honor to grow closer to him when a situation like ours may tear others apart.

4. Healthy diet. So hard. All I want is chips. And biscuits and gravy. And chow mein. And cheese fries. And a mochachinno chocolate fountain of life blast. BUT instead… I prioritize fresh food, and fresh juice, and lemon water, and organic options, and limited amounts of sugar. Not because I’m super trendy and organic (although I wouldn’t argue with you if you said I was), but because I would like to be ready in all seasons for anything. And unfortunately an animal style cheeseburger doesn’t exactly get me ready for game day. (But if you know of an organic/healthy one that does, PLEASE let me know!)

5. Yoga. I’m not a “yogi” ( I only think I know what that means), and I don’t know the proper names for poses, but I do know that during pregnancy I can’t do much of anything without some crazy nerve or muscle screaming at me for sweet mercy. I got some wild hips ya’ll, and yoga seems to do the trick. It’s relaxing (cue singing angels) (Autocorrect offered to make “angels” into “bagels” and now that’s all I want).. Oh yea yoga. It’s relaxing, builds strength, aids in mental focus and and gives you a nice stretch. Hallelujah.

6. Friendship. I didn’t intend to make this one last. I’m definitely that friend who is in need right now. So I really need friends. Being humble and expressing my needs and letting people help carry my burden and lift my spirits is healing and energizing and sometimes all you need. Staying shut up and sad is easy, but letting friends in, while it requires more work, is a much better pay off.

Please add on to this list every other thing a pregnant woman “should” be doing. Aka drinking water, getting rest, not riding Space Mountain, etc.

Heres to fighting and another leg of the journey!

 

Healthy Living for the Warrior Parent

Welcome back. To me that is:) Been trying to keep up and stay healthy for our little goober bug up there. Those aren’t new teeth, that’s oatmeal. This is after one of our big weekly blood draws. Trust me, her face looks nothing like this during those vein attempts. God bless every infant phlebotomist everywhere. (Yes! That’s really how you spell it!)

It’s those moments that lead me to this post. I hear being a parent is hard. Our parent life has been anything but normal, and I’m genuinely curious what that’s like. I will say that being a parent to an “extra-ordinary” baby is very, very hard. Whether it be physical disabilities, mental set backs, or even something as common as ADD or autism, being a warrior mom is no joke, and not for the faint of heart. It’s very normal for us to do everything for Jane since she cannot YET sit up on her own or feed herself. Every little task throughout our entire day requires a lot of physical, mental and emotional strength (for her and us). Seriously, sometimes I wonder how I don’t get a trophy at the end of every day!:) And there are many parents like us, including those who are now tending to their own elderly parents. It’s exhausting. Plus there’s always taxing moments like these:

They are holding a thrashing, screaming Janie down to attach EEG leads to her head. At this point in time I could either A. Crumble into a weeping ball B. Beat these people with a baseball bat C. Take pictures. These are the moments that create warrior parents.

In this lifestyle, of tedious mental strength, full schedules and unknowns, it is possible to 1. Neglect the health of your body 2. Feel run down easily

Which is why I would love to share some simple things I do and partake of to keep my body going and prepared for tough days.

*Disclaimer: This is not an all-inclusive list (ain’t nobody got time for that!), I am not a doctor, and I love cheeseburgers.

 

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1. Water  – NOT sponsored by the CA drought committee – 

Simple! I know! It flushes out the bads, it enhances the goods! You need it! Your skin, organs and body LOVES it. Put it in a fun glass, add some fresh fruit. Do what you gotta do to get on that water hype! (Pretty sure it’s not hype if it traces back to the creation story) I’m not against coffee. In fact, that is one of my absolute treats (iced almond milk or raw milk latte, in case you were wondering). But I do ask that you counter that diuretic with at least twice the amount of water.

2. Eat clean or “Think Before You Eat”.

I love french bread, and In&Out, and brownies. But there is no substitute for eating “real” food. What is that? No one had to mess with it to make it consumable. This can be especially hard when life is “on the go”, or you are frequently visiting hospitals. But it is especially those instances that require the most stamina.

If you can, keep it organic. If it is poison that kills bugs, why do you want it on your food? I understand that can be a big step for some, so maybe start with sticking to purchasing only the dirty dozen organic and go from there. I often abide by this list and feel no shame for buying non organic if it’s considered part of the “clean fifteen“. I know, what language am I even speaking. Just look up those links friends:) Fresh food is magical. It actually contains nutrients that help your body, give you energy (not heartburn), and works together to fight disease! Organic/fresh food is not a fad, its the original plan. Your body will love you.

Think before you eat is one step further, or maybe just the cousin to “Eat Clean”. Stay with me! I’m not asking you to ELIMINATE sugar or fat. Why would I do that!? I’m not the devil! I am asking you to stop and think about what you are putting in your mouth. I love an example I heard from a friend who read a blog. Compelling, I know. The question when eating your food should not be “Is this good, or is this bad”. You then have automatically punished yourself for eating “bad”, when you should’ve had “good” and have entered the world of “dieting”. YUCK!  The question should be “How nutritious is this for my body?” You can eat almost anything. I can inhale the highlighter marker on my desk. That doesn’t make it nutritious. The same goes for a bag of hot cheetos. Eatable? Yes. Nutritious? No. And that’s all I have to say about that.

My favorite has been lettuce wraps, or things on greens. If you can eat it on bread, you can eat it on greens. Nachos, burritos, burgers, mayonnaise-based delicacies… Above is a “turkey sandwich” wrap. Oh dear friends, YUM! Avocado, bell pepper, turkey meat, cucumber, sauerkraut. Yay! (And goats milk brie cheese on Mary’s Gone Crackers, cause I like cheese!)

3. Go outside

There’s that sassy lettuce wrap again. Why outside? Vitamin D, fresh air, fresh perspective, life, peace, hope. I’m not kidding. Sometimes you just need to breathe (Unless you live in my town right now, in which case you would just inhale pollen, in which case you should only go outside if you’re wearing a Hannibal Lecter mask).  Often when Jane is FREAKING out, we just go outside. She usually calms down. Or when living “hospital life”, going outside for just a few moments resets something. Being in nature reminds us that God is creator, we are not alone, and life still exists!    4. Exercise

Move. Stretch. More than wanting a fit bod, or looking good in a bikini, you need to detox and de-stress your weary muscles. Move those bad boys outside pushing a stroller. Do some gnarly yard work (one of my fav’s). Do lunges as you walk into the bathroom. Yoga and pilates your way to a non-stiff neck. Just move. We gotta think long haul, us moms and dads, and staying strong is not for a magazine cover that you’ll never be on, it’s for the benefit of our kiddos. And spouses:-)

5. Supplement it up

If you live in America, you are most likely not receiving all the nutrients your body needs to thrive through your food. I have just a few I try to take everyday.

A. Vitamin Code Raw Prenatal (Cause I’m breastfeeding, not currently preggo) – A solid multi-vitamin

B. Apex Energetics Probiotic supplement – Good for my gut and intestines! ( I encourage you to look up the benefits of a probiotic on your own. Or ask my smart nutritionist friend Cheers to Health)

C. Fish Oil – Good for my brain, heart, and skin!

D. Magnesium powder – I drink this powder before bed in the evenings and I’m loving it. Most commonly known for bone and heart health. If you deal with stress, I’m talking to you every mother in the world!! Magnesium is great at regulating blood pressure, and helps you feel super duper chill dude …

6. Community

I have a couple close friends I have on speedial AKA group text. They are part of my lifeline. Those close friends make up about 6 individuals (I say about because I have lots of great people that love me and I don’t feel like counting right now) that I update atleast once a week on our life with Jane. It keeps me sane. Reminds me I’m not alone. Helps get me out of horrible thought patterns. And simply, helps me laugh. They know when to bring me coffee, or invite me out. Or pray precious prayers for me. Community is everything. It can be hard to let others in when you are a hard working mom, or if you feel different than other moms, but it

7. Meditate

Meditate – to spend time in quiet thought for religious purposes or relaxation – merriam webster  

  Take a moment to quiet your busy thoughts. Your unknowns about the future, and let go. I prefer to do this with my favorite worship music playing and giving all my thoughts to Jesus, since He seems to be the only one who can handle my drama. Many people find other ways to meditate. I like this the best.

8. Laugh

It’s just fun to laugh. With friends, by yourself (maybe not to avoid insanity), at yourself (most definitely). When inundated with medical facilities and practices, boy oh boy do we take time to laugh! Thank you The Office and Parks and Recreation. Leslie Knope you are my spirit animal. Steve Carrell, you are the best uncle I ever had.

Here’s what Google says about laughing:

  • Laughing lowers blood pressure. People who lower their blood pressure, even those who start at normal levels, will reduce their risk of strokes and heart attacks. …
  • Reduces stress hormone levels. …
  • Fun ab workout. …
  • Improves cardiac health. …
  • Boosts T cells. …
  • Triggers the release of endorphins…
  • Produces a general sense of well-being.

9. Date

Be with your honey. If you are a single parent, first of all BRAVO, and second, treat yourself, or make sure your friends do so! Or have your friends read this and they will get the clue! Invest in that love of your life. The one battling alongside of you. The one carrying as much stress as you are. Go eat tacos or file mignon. Or just curl up with some chips and guac and watch Chris Pratt be Burt Macklin again.  Love you babe (Rich, not Burt Macklin).

10. Give

I know, that’s kind of like the opposite of what we’re going for right? Isn’t that all we do as parents? I guess the point would be to look outside your situation. Come up for a little air and realize your little world is not the only little world. Give money away (Ronald McDonald Foundation, Vacaville Storehouse, Three Strands). Buy another mom a coffee, drop off some flowers at her door. Give when it doesn’t make sense and watch how fulfilling it might be for you!

Proverbs 11:25 The generous will prosper; those who refresh others will themselves be refreshed.

Our friends Kate & Paisley & baby Ewing who we had the chance to meet at eat waffles with at our last visit to the Orange County Children’s Hospital. A warrior mom and dad who have faced grueling challenges with little Miss Paisley and are givers to the core!

Hope you feel refreshed this week wherever you are in your parenthood journey. Go team!

HOPE : A Really Big Update

I am so thrilled to be home from a week long adventure to the Children’s Hospital of Orange County. As you read in my last post, we fought hard to get there and it was worth every step! The evaluation and treatment for Jane was well executed with no time wasted, and our hearts connected with some very fine nurses and doctors.

An immediate 5 day EEG told us a lot about Jane’s seizure types, which led to a fantastic drug that has our girl in new spirits. Her demeanor is less cranky and irritable and we watched her go from 10-15 seizures a day when we first arrived, down to only 3 that the EEG picked up. A well deserved break for our little girl. We are so thankful for this discovery and pray that it remains successful and causes no harmful side effects to her blood and liver counts, which we will be checking once a week for the next 6 weeks, and intermittently for the next 6 months.¬†This medication change has been a huge victory!

Jane also provided them with urine, blood and spinal fluid for metabolic and genetic testing, to rule out any inborn or underlying issues that may be contributing to her seizures. Those results will take weeks to return.

The last step of our stay included a very necessary MRI since Jane had not received one since her first week of life. We knew this was a mandatory step but we did not realize this MRI would give us some much needed answers as to what our Jane has been dealing with. Note, I said answers we needed, not exactly answers we wanted.

I should mention that my mom and I intended on being in Orange County tentatively on our own. Rich would only join us if the stay was extended for a lengthy amount of time. But since he’s the best in the whole wide world he surprised us 6 days in and spent the last 3 days of the stay with us. So when our MRI results were presented, he was there.

Our very smart, trustworthy, firecracker of an epileptologist came in with her team and told us some things we knew and some things we didn’t. The MRI, at this point in time, did not look good. ¬†Janie’s brain muscles have suffered great atrophy considering all the seizures she’s endured for the last 7 months of her life. Small infantile spasms had developed into full blown tonic seizures (full body stiffening) and it has taken a toll.

What she explained next is difficult to write, but I know it is only ammo for us all to keep fighting for her. We were told the back part of Jane’s brain is significantly damaged. This is the part of her brain that processes vision. Jane’s optic nerves are well in tact but her brain cannot see well what her eyes are looking at. The epileptologist mentioned the words “clinically blind”. Although, since she is only 1 yrs old, we do not know the extent of what she can and cannot see.

We were told that Jane will be cognitively challenged. We were told she will need special education to get her into and through school. We were told complex thought and analytic thinking will be very difficult for her , to what extent we cannot know.

We were also told that this year is critical and if Jane is not sitting up on her own or walking by age 2, it is unlikely she will ever walk.

We were told to add speech and physical therapy on top of her pre-existing occupational, developmental and vision home therapy visits.

We will have a “long term” relationship with our neurologist as they do not expect her seizure activity to ever go away. We will start by one of many follow up appointments in 6 weeks in OC. (Could be worse. Can anybody say “DISNEYLAND”!?)

Those were the things we were told about our daughter yesterday, on our 3 yr wedding anniversary. But please realize that those are facts, and they are not necessarily truths. These were things that were told to us, not things that are written in stone.

Our hearts are very heavy for our little girl. We don’t know what her future looks like but we have great hope. Great hope that God absolutely does miracles and He will absolutely use Jane’s powerful little life for a purpose we may never know until heaven. We have great hope that these are not impossible obstacles but challenges to be beat and conquered.¬†We are disappointed by not destroyed.

Please understand that we will cry, be saddened and grieved, but our vocabulary will always be one of faith and hope. Not because we are faking it, but because we absolutely believe in it, and it is the only way.

Thank you for always praying for Jane. Stand with us as we watch her plow through her challenges victory by victory. And when she is walking, talking, thinking and playing we can all stand back knowing we were the ones that kept hoping for her, and standing in faith for her life.

Not just in work but in life you must have hope. Weather you have a little or your have a lot you must have it in order to keep going.

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Moments of Victory:

Jane’s seizure medication is supposed to make her very restless and unable to fall asleep on her own. In the hospital she was given melatonin to help her rest. Its been 2 days now of full naps and sleeping at night without any aid. She is taking a deep nap as we speak:)

For 2015 we have been generously supported by a dear couple enabling me to not work and stay home with Jane. This past week before Rich came to see us, he informed me that due to some changing circumstances I would be able to continue not working after the year is over. God had lifted that burden of finances before we even had to ask.

Isaiah 65:24 While they are still talking about their needs, I will go ahead and answer their prayers!

Jane has only eaten her food in a reclined pink bouncy chair (as seen in most of my pictures of her) for her whole life. Sitting up in a Bumbo or on my lap would illicit lots of drooling and hunching, making it almost impossible for her to eat that way. This morning I sat her in a full blown Ikea high chair and fed her her breakfast with minimal drooling and no tears. I woke Rich up by telling him, “She’s in a high chair babe… and she’s eating”

More to come‚̧

We must accept finite disappointment but never lose infinite hope.

My Life Time Movie Moment

Christina2

I’ve never been much of a fighter. I can get heated over some issues, but I don’t care for confrontation. I’d much rather relax and drink lattes and forget our differences. Since Jane, I’ve had no choice.

We’ve watched our daughter lose physical capabilities, as well as mental function, as seizures daily attack her body. She has now failed two medications (Or rather, they have failed us), which in laymen’s terms means there’s only a 10% chance that medication will ever work for her.

Something has to be done.

Last¬†month, I encountered a divine connection through many mutual friends with a lady who will remain nameless for now since I don’t have her permission to blast her business. We’ll call her Katrina. A Russian ski instructor who moved here with her husband who took an analyst job in Silicon valley, but they live in Vacaville. (This whole story is made up for your reading pleasure). At any rate, Katrina’s daughter experienced epilepsy and is now 3 yrs old and on the turn around. Her healing came through care and treatment given by the Children’s Hospital of Orange County. After about a 5 min phone conversation with Katrina it became obvious to me that this was the next step for our Jane. What was not obvious is that this was going to require a fight.

For 3 weeks we worked daily to convince our hospital and every tier of medical staff thereof that they should refer Jane to CHOC, which happens to be a level 4 pediatric epilepsy center (Aka: It’s really really good at seizure treatment!) We were denied this request, for various reasons, a total of 4 times in 3 weeks.

*Cue my Life Time movie trailer* . “The powerful drama based on true events, of a family fighting for the thing most precious to them. In the face of opposition, the relentless uphill battle is proof that there is nothing that can stand between a mother and her helpless child, no matter how high the cost!”

But really, this helped me. So many actresses have fought for their child. Like Angelina Jolie in that movie the Changeling. I never saw it, but pretty sure she played an intense mom in that movie. And imagining myself as Angelina helped me press through.

Everyday was a new reason for declination, a new person to talk to that needed to talk to another new person who would talk to another new person who may find our reasons for referral legitimate, possibly. After almost a month of this we were tired, discouraged and seeking the next best option since our first choice was seemingly not going happen. Just then, the phone rang.

No seriously, like RIGHT then. “Hello Mrs. Harris, I have good news”

No sweeter words. We had been approved for a referral to the Children’s Hospital of Orange County.

This was and is a HUGE victory for us! And we are so excited to get on this track to healing. But the truth is, our battle is not about a hospital, or a doctor, or a referral. The battle is about continually advocating and fighting for our daughter. If it wasn’t this, it would be against the weird preschool teacher or the rude kid on the playground, common core math, or the over competitive dance coach. It’s all training to fight. It’s all little pieces in our own personal Life Time movie.

Our journey has really just begun all over again. We hope to get in to an appointment for brain monitoring, diagnosis and treatment options for Jane. This could take days, weeks, or months.I hope that in the meantime, as we keep fighting, that any parent who finds this blog, who’s child is sick, who needs a boost, will know that they¬†are not alone and they should never give up.

We don’t know what our next fight will look like, but as far as I can project it looks like it may get more intense before it gets easier. But we can do this because we are not alone. Saints and angels are rooting us on. And between the tears there are friends to laugh with and hold your arms up. And for every defeat there are little victories. And for even just a moment, we can breathe in deep rest and satisfaction. Knowing that we fought, and we won this one. But it’s time to gear up because it’s not over. And fighting for¬†what’s best for Jane will never be over.

 

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