Healing

From Jesus Always:

Those who wait upon me will gain new strength.  Spending time alone with Me is so good for you, but it is increasingly countercultural.  Multitasking and staying busy have become the norm.  During the Advent season, there are even more things to be done and places to go.  So I encourage you to break free from all the activity and demands for a while.  Seek My Face and enjoy My Presence, remembering that Christmas is all about Me.
Waiting Upon Me is an act of faith--trusting that prayer really does make a difference.  Come to Me with your weariness and burdens, being candid and real with Me.  Rest in My Presence, and tell Me about your concerns.  Let Me lift the burdens from your aching shoulders.  Trust that I am able to do exceedingly abundantly above all you ask or think.
As you arise from these quiet moments, hear Me whispering "I am with you" throughout the day.  Rejoice in the new strength you have gained through spending time with Me.

Isaiah 40:31; Psalm 27:8; Matthew 11:28; Ephesians 3:20

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Tessa had a rough morning at church yesterday, so I didn't get to listen to as much of the service as I would have liked, but our pastor said something that really resonated with me.  He talked about how we're all broken, and that church is a place for broken people, but that the story we should write is a story of healing, not brokenness (that is a paraphrase, of course).  When I think about Matthew 11:28 Come to me, all you who are weary and burdened, and I will give you rest ~ I think about how we are often able to find healing when we rest.  Our brokenness causes weariness and heavy burdened shoulders, but we have a promise of rest, if we turn to the One that is able to provide the very rest and healing that we need.

I've written about how difficult 2017 was for our family, and as I sit here in anticipation of 2019, I'm saddened by the heavy trends of both 2017 and 2018.  I'm frustrated that so much of me wants to sit here and gripe about all of the sadness and all of the heaviness that exists in the last 2 years.  I want to be angry about all of the changes and resistant to the path in life that I'm on.  I'm not cut out for it.  I want to fold my arms, throw a fit and just sit and ask W-H-Y?!?  Why am I still on a wheel of emotions that ultimately break me down and limit movement forward?  How in the world is 2019 staring me in the face, causing me feelings of regret, and all I feel is an overwhelming sense of complete disappointment?

Random, but I think about the fire making challenge on Survivor.  When they get a spark but they have to be very careful to help the spark grow and not go out.  Striking the flint vigorously and relentlessly in order to get a spark and then ultimately foster a flame that burns high enough to burn through a rope and raise a flag.  I feel like I've spent the last 2 years striking the flint....over and over and over again with occasional success at a spark.  But I feel like the spark never stands a chance.  Ever.  I'm exhausted.  I'm obviously not competing against anyone in this 'fire challenge', except myself.  There's no spot in a final 3 if I burn through the rope and raise the flag.  There's no chance at a million dollars.  But, there is relief for my aching shoulders.  There is a Savior that is waiting patiently as I struggle on my own, just waiting for me to seek Him, and the rest He has for me and allow a renewing of my strength.

I know that relentless striking of flint indeed does NOT properly sum up 2017 and 2018.  I have taken time to embrace the moments and joy around me.  I know I have.  But I gotta be honest, it's so frustrating that the defeat and disappointment tend to highly outweigh all the other.  Maybe that is a benefit of reflection, and maybe it will ultimately give way to growth.  I don't necessarily grow through the joy in my life, but I do think that the joy is what helps protect the spark that we earnestly want to burn into a flame of change.

I can't continue on this path of selfishness...restlessness...sinfulness...success determined by me, but I also can't change if I don't reach the point of surrender. Isaiah 40:31 but those who hope in the Lord will renew their strength.  They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.  

Broken people can have hope.  Romans 15:13 May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.

My prayer today is that I can use this time of reflection, of discomfort and disappointment, to propel me into the hope that I have in Christ...for healing and for rest.  I am broken, but I am not stuck.  I want to walk in the gift of grace that God has for me.  I want to seek Him and find Him and settle peacefully into the path that He has laid out for me.  I believe we will swirl around in brokenness until we take the time to foster our flame of hope and change.  For 2019, I want to walk in healing ~ that's how I want my story to be written.

~Whitney

Grace.

2 Corinthians 12:9

But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.

I often wonder why I'm so surprised that some of the ugliest of days hold the most beautiful outcomes.  This scripture is such an amazing reminder that God can work in and through our weaknesses.  We live in a dark world...full of sin and so much hurt and pain...and it literally can take a deep breath and a prayer for grace and mercy to take that step directly into God's grace.  Sometimes that deep breath is the hardest breath we've ever had to take.  And sometimes that prayer for grace and mercy is said with trembling hands and a broken heart.

I'm incredibly grateful for the gifts of encouragement, support and strength that God has given me. Not gifts of my own, but through those He has championing me through this life.  It is entirely too easy to walk the roads in our life, assuming we are alone.  Assuming that no one would ever understand, or that we are beyond repair.  The little lies that creep in and tell us who we are, pile up in the most overwhelming ways sometimes and it takes being still to understand that our identity in Christ is the only 'me' that matters.  

I am fiercely independent.  I am somewhat rebellious. And I have weaknesses to talk about until the cows come home.  And I realize when I'm not rooted in God's word...when I'm not surrounding myself with people that God has gifted me with in this life to reiterate the Truth about who God says that I am...I crumble.  The weight of each and every lie can cause me to walk through foggy days of suffocation that scream of relentless isolation.

The beautiful part of it all...is that I have a Savior that died on a cross for all of my wayward independence, for all of my rebellion and for each and every weakness that threatens the joy in my life.  The encouragement I'm documenting for myself today, is that the deep breath is worth it Every. Single. Time.  The broken cries for grace and mercy result in the kind of healing that brings light to Christ's power in my life.  

~Whitney

...you wouldn't be here today

Psalm 92: 1-5

1 It is good to praise the LORD and make music to your name, O Most High, 2 proclaiming your love in the morning and your faithfulness at night, 3 to the music of the ten-stringed lyre and the melody of the harp. 4 For you make me glad by your deeds, LORD; I sing for joy at what your hands have done. 5 How great are your works, LORD, how profound your thoughts!

Below are words I wrote for my husband.  It has been a really long time since I have put some of my thoughts down...and once I did, and after I shared them with Darin...we decided this place has been a such a place of growth and healing for me, that I'd give these words a chance to resonate with someone else. 

Very real and very raw, but God's goodness and mercy in my life are what give me strength to praise him for my past, present and future.

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I've been plagued with some really difficult thoughts...I would just say recently, but it honestly feels like it's been over the last year+ or maybe the last 14+, or most my life...I'm not for sure.  I know they only hold the level of truth I am willing to give them, so I've decided to write them down and share them in an attempt to release the hold I've allowed them on my life.

If you wouldn't have been intrigued by the "beautiful mess" I was in college...you wouldn't be here today.  If you would have realized all of the many things that made me that mess that I was...I suspect wisdom would have told you to walk away...not, go near.  If you would have seen me for who I actually was in life at the time you met me, there would have been many more indicators of doom, than indicators of a promise of what you hoped was ahead.  See, when I met you...I saw the picture of what I desperately wanted in life and knew if I didn't grab hold of it in the moment, it likely would never come again. I hadn't seen it in years, and feared I never would again...not with the path I was traveling.  In you,  I saw who I used to be, I saw how I was raised, I saw God and goodness and faith and humility.  I saw honesty, respect, love and patience.  Not that I was EVER patient...but you were made up of enough for the two of us 😏.  I lost my way my senior year of high school thru college. Between 1999 and 2003, I had absolutely lost my way.  I was so angry with God and with how my life had turned out.  The divorce of my parents as a Junior in High School...that was the tipping point...the point I started negotiating with God instead of surrendering to Him.  For just about 4 years I lived on my terms...accepting Christ into my life at the age of 7 meant nothing to me anymore.  I responded in anger and the hurt that fueled that anger, fueled mistake after mistake after mistake.  Four years, alone ~ living an existence that was very foreign to me, but determined to find my own way...a part from God.  I think you saw it, I know you heard me speak of the pain...but damn, if you wouldn't have been intrigued and allowed yourself to open up to me...you wouldn't be here today.

I had a point to prove in our first years of marriage.  I was hateful, controlling, mean, bossy, and carried the biggest chip on my shoulder ...and it was all directed at you.  You were the closest thing I had in my life...and maybe the closest thing I might ever have in my life...at the time, I think that was too much for me.  Too good to be true, kinda stuff.  I guess I worked harder at giving you every reason to leave, than trusting in your Godliness and goodness. If you wouldn't have stayed committed, if you wouldn't have taken all that hatred from me and persevered through it...I would be alone, where I probably should be and you wouldn't be here today.  In 2006, we had moments of a real partnership in marriage when we came together about the relocation to OKC with my job...I do remember allowing God to show up in ALL of that and I remember my attitude and dependencies shifting as I watched myself crumble under the weight of that kind of decision.  It had been awhile since I felt like I needed to depend on God...and He fueled that dependency through you.  But when I sit and think about where we are today, if you hadn't been intrigued by me, or married me, you wouldn't be here today.

I never realized how much weight I would carry as the 'breadwinner' of our family.  The salary I was making in Oklahoma was more than we had ever had and we finally found ourselves afloat.  Over an 11+ year career in the oil and gas industry, we were afforded opportunities of financial relief time and time again.  We had savings and life insurance and incredible health insurance/benefits...we had an ever-increasing salary and bonus and stock at our fingertips.  Until it was gone, I never realized the identity that had been created unintentionally and over time by a career that held me in chains to bread-winning.  You relocated to become an Oklahoma teacher...you are gifted beyond measure to teach, but no doubt another state would have served you much better.  If it wasn't for marrying and relocating with me, you wouldn't be here today.

A year after we moved we found ourselves pregnant for the first time.  The journey to becoming parents looked so bright....for a short season I wondered if maybe marrying me and relocating with me was gunna turn out ok after all.  We took the reigns in our pregnancy and our desire to stand firm in our relationship and support of each other by committing to a natural birth.  Everything leading up to it was perfect and beautiful.  A sweet baby boy was going to make us a family and the future looked so bright.  But that brightness got dim as we realized, the day of...in the very moments of that treasured time of natural labor that we had so desperately wanted and prepared for...that we were not supported by the medical professionals.  In fact, our decision was rather frowned upon and as we both remember so well, things suddenly went horribly wrong.  Not with our sweet baby boy...but with me.  The tragedy that happened in that room that day...changed me. Changed us. The absolute shame and horror I went through in those weeks after birth and the second surgery that I faced just 2 weeks postpartum...it wasn't anywhere close to the script I thought God was finally writing for us.  Not even close.  It was my new tipping point, and again, I fell deep into my negotiating with God instead of surrendering to Him.  If you hadn't married me, relocated with me and created a family with me, you wouldn't be here today.

A year or so later....the longest year I felt like I had ever faced...we wanted to expand our family.  We both knew what it was like to grow up with siblings close in age, and we wanted that for our kids.  We sought medical advice and counsel on how to proceed, because the tragedy of our first birth was not overcome and we weren't even sure if/how to move forward.  We got great counsel and were able to move ahead.  This time we would plan a c-section...it was likely the only way and definitely felt like the only guarantee for a safe and recoverable delivery.  Right after our baby boy turned two, we welcomed a baby girl.  A tiny baby girl.  The situation was a bit reversed this time, I did well and made it through the c-section fine...but our sweet baby girl had huge question marks surrounding her.  I left the hospital leery of sharing pictures or making too much of a big deal about her arrival.  My gut...didn't know what it was, just my gut.  Those next three months we grueling.  Our son had had colic, but just as the doctor's predicted, had grown out of it by 6 months old.  This time around we called it 'colic on steroids'...we were holding tightly to that 6 month mark....begging for it to show up in lightening fast speed.  No one understood, all thought we were overreacting.  Doubt, fear, shame...so many things surrounding the unknowns.  So, birth 1 - baby good, mama not so much.  Birth 2 - mom good, baby not so much.  Still full of anger and hurt by the way things had been playing out in our lives.  We just couldn't catch a break...couldn't catch a damn break.  And if you hadn't married me, relocated with me, or chosen to create a family with me, you wouldn't have endured any of that, and you wouldn't be here today.

As we both know, all too well, the transition from the last paragraph to where I'm going next, is quick.  From birth to just 3.5 months old...we walked into a doctor's office to follow-up on a persistent ear infection and left there headed right next door to the 10th floor of the hospital to be admitted with our very sick baby girl.  Our doubt and fears were FINALLY validated....with what, we didn't know...but it was all soon confirmed.  We went from enduring what we had been told would just be a grueling 6 months of colic....to the diagnosis of permanent disabilities.  Blindness, deafness, cerebral palsy, epilepsy...brain damage.  All the things in my head that had made me fight and scream and cry out ...why can't we catch a break...suddenly fell aside and the reality of our future came into view.  I remember it so very clearly...what God did that day.  What you did that day to solidify our family and our faith and how we would move forward.  You always did that, you have always done that....secured our footing when the ground was shaking beneath us.  But the truth still remained, and maybe the harshest truth of all ~ if you hadn't married me, relocated with me, created a family with me, and now with new knowledge... married a women that had never been infected with a little virus called CMV like most other people in the world had by my same age...you wouldn't be here today.

You know I understand that Tessa's diagnosis is not my fault.  You know I understand that there was nothing I could do about it...the medical profession is even limited in their ability to address CMV...but you also know how realistic I am...and the reality IS...Tessa is the way she is because my body didn't have antibodies to protect her while she was growing in my womb.  It's reality...but reality can carry a very heavy burden with it sometimes.  And the culmination of where we were ending up, proved a pattern of ...somehow Whitney screws it up and somehow Darin comes along and secures our footing.  It's the cyclical nature of our roles that bring with it an intense pattern of emotions for me.

By this time, I had concluded my attempts at negotiating with God.  In many ways, I was able to come full circle with my chain of suffering enough to feel that in it, God had created a strength in me to move forward.  For the most part, I shifted out of my anger and into determination for any and all things that would move Tessa forward in life and I found my own methods of contributing to the securing our footing and to the faith and forward movement of our family.  I was finally humbled enough to say...I can't do this alone.  I couldn't picture the days ahead and God was the only One that could help me figure out how to put one foot in front of the other.  I was still a professional, I was still the 'breadwinner' of our family...I was still mom to a little boy.  From day one of Tessa's diagnosis, it had never been clearer what Christ in my heart was all about.  The giver of life, the sacrifice given for all mankind...He created me and He would lead me and carry me down the path that I was created for...there was no doubt.  And maybe for the first time in my life, there was no doubt what my Savior was doing in my life.

As I read back through all that I have written, we both know that 2017 held the biggest volume of tragedy for us.  I can't reconcile in my head right now...the emotions tied to each of these past events and the emotions that culminated in this last year...but I do know there is a reason for it all.  In short, and for reference, I lost my job in January of 2017, we went to the poorhouse overnight, we lost several precious children in our HopeLink group and Grandma passed away just two days before Christmas.  I hope one day to write about how 2017 changed me and how it finally spurred me to allow GOD to secure my footing...it's my hope and prayer for a conclusion of sorts, that looks that way.  But for now, my heart is broken, my path is winding and there are tears at every turn.  Sometimes we can't make sense of things when we're right in the middle of them...most of the time, in fact.

But out of everything I have covered here...and the reason this is written for you, is because one aspect of myself that I have never grown into, is being a wife.  I don't believe there is any quality or characteristic about myself at almost 36 years of age that attest to a role as a wife.  The reason I have chosen to focus so much on "you wouldn't be here today" ....is because I believe when you set out to date me and to ultimately marry me...you were hopeful for a wife.  A lifelong friendship...a partner, a lover, a confidant...someone that would sacrifice it all to selflessly provide for your needs and help you when life got you down.  There is nothing else I have written about today that I can imagine entered your head when you wanted to choose to walk down the isle with me.  I remember that night at bible study, so clearly.  I was dating the guy sitting next to me...and I was shivering cause the room was so cold...and you got up from across the room and walked your jacket all the way around the group to me...in front of everyone!  Blew My Mind.  We hear about people going on date nights and being 'who they were when they were dating or when they were first married'....but this doesn't seem to hold true for us...date nights or the latter 😉 I don't have very many memories of that time in our lives.  I don't remember what it was like for me to be that person and my excuse is that it's because so much had happened in our lives since we were first married.  Maybe because we don't talk about it or simply because so much life has happened since then.  I guess as I'm typing now, I'm thankful for that precious memory...I'm thankful for the smile it put on my face to type it out just now.  I can remember the "ooo, burn!!" and the "ouch, dude you just got schooled" that came from the group as you confidently walked back to your chair.  But truth be told...when I think back now, part of me wonders...should I have taken your jacket back to you? Should I have refused it in the first place? Would that have been the better reaction to your action?  Would that have been a truer picture of what things would be like if you considered me walking down the isle to you one day?  But, I did indeed accept your jacket and my heart beamed.  My sincerest apology to you today is that I didn't, and haven't, taken the opportunity to begin growing into someone that you would be proud to call your wife.  I want to beam.

Both, when I look back...and when I reflect currently...I feel the overwhelming sense of Satan chasing me with the culmination of my bad decisions in life.  The weight is incredibly heavy.  The cycle of my bad decisions takes shape when I allow anger and hurt to rule in my life, over the circumstances that make up my life.  I know it is a burden that can be lifted if I will hand it over and I want you to know that I am working on that.  I know 14 years later, opposing forces would like for me to believe that it's too late, but I'm determined not to let that be truth in my life.  I feel like I have allowed God to snatch up bits and pieces of me throughout the years...and I'm looking forward to seeing what He'll do once I am able to surrender my role as a wife to Him.

Thank you for loving me.  Thank you for marrying me.  Thank you for relocating with me.  Thank you for standing at my side through the births of our amazing 3 kiddos, thank you for walking with me through the loss of my job and through the loss of so many loved ones in 2017, and thank you for taking on the role as a father to a daughter with special needs, and to two amazing sons, with such faith and finesse.  I'm thankful for your desire to live life with me and I'm humbled by the opportunity to grow into my role as your wife.  It hasn't been anything close to what I pictured for marriage, but what all these words have shown me here...is it's our story, it's our journey and I simply cannot imagine if you weren't here today.

❤ your teammate and wife-in-progress

...almost 4 years ago 😘

Misunderstood

There are so many times in Tessa's life that I have wondered what she's thinking.  Being a parent to a child that is nonverbal isn't really something you can prepare for...it isn't something that ever seems to get any easier, either.  We have been through all kinds of communication approaches with her, but at the end of the day, her means of expressive language is with her eyes....and on occasion, with her hands.

Early on we were trying every potential form of expressive communication with Tessa.  We went from auditory/verbal therapy, to sign language, to pictures, to communication devices...and now, our go-to...which is just plain and simple choice making.  Tessa makes choices with her eyes and sometimes with her hands.  She'll choose from pictures or real objects, but the key is to watch her face and watch her eyes...that is where she communicates from...that is how she is best understood.  And that SMILE!  Man, it is ridiculous how infectious her smile is.  We've heard that since day one and it makes perfect sense...because when people aren't listening to you, they are looking at you...for some kind of indication that things are ok...that you are happy with your current circumstances...maybe that you feel understood and safe.

The most troublesome times for us with Tessa are when she's hurting and she can't tell us how or where. Or when she needs something and we lose our ability to guess correctly.  It is brutal to not know how to care for your child sometimes.  There are so many situations that we have dealt with that have given us more insight and wisdom on how to handle certain situations for Tessa....but there are soooooooooo many that are new, all the time.  What most people don't realize is that Darin and I spend day in and day out working through the process of elimination.  You know, like you do with an infant...have they been fed? diaper changed? burped? are they tired?  It is the self-care side of life where we find ourselves, sometimes pros, and sometimes, complete and utter failures.

The failure part is real, ya'll.  Like for-real.  I am not the most patient person and the inability to problem-solve and the cycle of misunderstanding, can drive me absolutely mad.  And the irony of it all...is that I end up frustrated at the very person that is frustrated with me because I can't figure it out.  Yep...I get so incredibly frustrated with Tessa sometimes.  She's 7 1/2, she has such an opinion, she has likes and dislikes, she's a princess and a diva...I love her with every ounce of me, but when I can't figure out what she needs or wants...I end up frustrated with her.  Who am I to be frustrated?  She's the one that is trying to express to me, but I am the one that can't figure it out.  Sometimes we get it right and sometimes we get it wrong...but what 7 years of life with a non-verbal child has taught me, is that being understood is a messy process with results of love and intimacy that can be achieved in no other way.

See, I may not understand what Tessa wants and needs all the time, but I promise you I KNOW HER.  Inside and out and everything in between...I know her.  She knows that I know her, and she knows that I see her...and in those moments of intense stress and frustration, she can trust that I will keep on keepin on until we Get. It. Right.  It may take a million tries....of which I kick and scream through half...but, we get there.  And it's the messy process of love and commitment that gets us there.

I've spent the last week trapped in a vicious cycle of confusion and misunderstanding.  It has been brutal.  Whenever something goes wrong in my life I am so quick to try and figure out what I'm supposed to learn from it.  Why did it happen? What did I do to cause it?  Did it have anything to do with me?  Or was it inevitable circumstances gone sideways?  I can spiral out of control in a really scary quick way with all of the questions in my mind.  The biggest one of all....How am I so misunderstood???  I'm not sure I will ever know the answer to that one...but I sit here tonight and realize that maybe it is less about the answer to the question...and more about the messy process and the results of that messy process.

All I keep thinking about is being Tessa's mom...what's it like to be one of the two people in this world that knows her and loves her more than anyone else.  God has taught me my greatest lessons in being Tessa's mom...some of the very greatest and very hardest lessons...and while I don't have some fancy wrap up for this...I'm realizing that it's not the answers that matter this time...it is the commitment to be exactly who God created me to be.  If I failed to understand Tessa today...if I missed something that she was trying to tell me, I can lay my head down tonight and know that I will get up tomorrow and try and do better.  If God is working out a plan in my life and I have failed to understand, or if I have missed something He has been trying to tell me...I will lay my head down tonight and know that I will get up tomorrow and try and do better.

It is frustrating to be on any side of misunderstanding....no one wins, but only if it's about the winning.  Cause when it's about knowing someone, understanding someone...and a commitment to the messy process...you get up tomorrow and try and do better.

~Whitney 

A Bull In A China Shop...

I'm more of a bull in a china shop than a delicate flower....

It's weird how many times in the last several months that I have been faced with questions that require me to search my soul in one way or another.  The kinds of questions that make you look inward to discover a little more about who you are...what makes you tick...how you thrive in this thing called life.

It's almost 3 a.m. and I have no idea why I can't sleep or why I can't get this off my mind.  I mean, I've written on this blog all of like 2 times this entire year...you'd think another day passing, of not taking the time to jot down my thoughts, would fall right in line with how I've operated every other day of this year!  But the nudge this time is strong...it's a nudge that's keeping me awake...so I figure, if I can't sleep...I might as well write.  Tomorrow (or today, really) I might be sorry...but for now, my head is full...so we'll give this a go.

This year has been an absolute mess for me.  It has taken me to places I thought I'd never be and I've arrived there just beat to crap...and it's only the end of September.  I'm kinda ready to call it a year.  Have you ever had a year like that?  A month? A week?  Where you survive it...but you're so bloodied up and bruised that you have no idea how it was even worth surviving?  There's growth in pain...I know this.  God has taught me well.  And sometimes I feel like maybe it's a lesson we could go ahead and move on from, you know?...and yet, here we are...yep, still here...still learning...still in pain...still growing.

My year started out with unexpected and intense devastation.  I wrote about it back in April.  I lost my job January, a job I had had for over 11 years. The job that brought us to Oklahoma and the place where I found and established much of my identity.  By April, I was in a good place...I had clarity and was full of gratitude for what I could see that God was doing in my life.  I can honestly say today...that I'm not feeling so grateful.  I'm working on it and I know that the peace and joy that God desires for me is attainable outside these walls of ungratefulness.  But I don't think it's as easy to find, in all seasons of life, as we think it is during those particular seasons where it just shows up.

I'm thankful for God's goodness and that His mercies are new every morning.  Those things are foundational for me...they don't waver with my seasons and my situations.  Even in the most intense pain and devastation, I don't question God's goodness and sovereignty in my life.  Here recently, those very things are the things that get me out of bed each day and keep me mucking on.  I'm not on this Earth for the things that work well for me.  I'm not here to live out my dreams or to conquer all that I set out do.  I am here to be the hands and feet of Jesus...to open my life up willingly in order for His purpose to play out for my life.  I don't get to pick and choose the pain or the successes He has for me.  If I did, I can promise you it would look NOTHING like what it has.  It's His, not mine, and I'm ok with that.

He does Kingdom work with my life.  He does the kind of work that only He can do...the kind that knows the beginning and the end and purposes things in the middle, strategically and very specifically so that, in the end, the glory is His.  He is gracious to give us glimpses of His purpose...of His plan...the unfolding of the inner workings of the miraculous...but I think often times, we end up bloodied and bruised wondering how the hell we even got here. Sometimes we do get to see pieces of what He is doing...other times, we don't.  That's the way things go, this side of Heaven.  It shouldn't be a shock, but sometimes it just is.

I've had battles and demons around every corner since January of this year.  Ugly ones.  The kind that make me question who I am, what I'm doing, and how I could ever be worthy of  Kingdom work.  The kind of battles where you freakin show up the loser, and then you just continue to get pounded. Every second of every day, dealing with doubt and fears that try to convince you that you weren't chosen.  The kind of defeat that tries to convince you that Christ didn't die on the cross for you that day....that there is no way His blood could cover you...everything you've failed at or the disappointment that follows you around like a shadow.  I'm not sure there has ever been a year that I have felt more inadequate or incapable of being someone worthy enough to be called wife, mother, friend, daughter, sister..... 
I literally thank God that my worth is not defined by me and my feeble-mindedness.  I'm thankful that my feelings aren't facts...they are wayward, difficult and fleeting and they hold no defining authority on who God says that I am.

So, to all these questions that keep coming up this year that are causing me to look inward and discover things about myself...on a very simple survivalist level, they have led me to realize...I am a bull in a china shop.  I am destructive to anything and anyone around me.  I am destructive to myself.  I face battles and demons that I have already conquered, but that are crossing my path again. Don't put me in a corner...don't make me squash the power, control and independence I feel that allows me to survive.  Don't throw things at me that require more than what I'm capable of and expect positive results.
As Merriam-Webster says it:

The beauty in this realization is that all I have to do, is let that go.  All I have to do is surrender my thinking...surrender my control...to turn my eyes upward instead of inward for answers to questions that I don't know.  I am honestly in this season of life and I don't know who I am.  It's a fog...a haze of missteps, confusion, intense disappointment and regret.  It's a season that feels stuck in a cycle that I am so ready to be done with...I'm ready wave my white flag, bloodied and bruised and beg for a way out.

Sometimes the next step is to simply shift our thinking from inward to upward.  Sometimes it's to choose thankfulness and joy when it all starts getting too heavy.  And sometimes the next step is a two-step...it's when someone graciously hands you that white flag...and encourages you to wave it. 

I won't ever be a delicate flower...it's just really not my style.  I cuss a little too much and have a rebellious streak that will likely keep me pretty grounded on the bull side of things, but what God does...that's different.  The bull is who I say I am, but I can't wait for the day when I get the opportunity to see who God was in me.

~Whitney   

 

In The Beginning...

The Beginning of our journey 7 years ago...

This is a unique time of year for me...every year, since 2010.  Obviously we are transitioning and preparing for school to start, but it was this time, 7 years ago, that the life we saw ahead began to look so very different.

I made a trip to Amarillo this last weekend with the boys.  We visited my Dad and Karen and I was able to see some of my dearest friends...a middle school/high school friend, my college roommate and a friend from when Darin and I were first married.  It was a beautiful opportunity to be with my boys, share old memories and make new ones!!  I hope to recap that trip here the next time I find some time.

  

But for now, I want to share some old emails I found that I sent out around this time of year in 2010.  The crazy part about it, is that we were packed up and ready to head to Amarillo this time 7 years ago too.  The same kind of trip...headed to see my Dad and Karen and also to visit my college roommate.  Tessa had been fighting a pretty bad ear infection that should have cleared up with the antibiotics...but since it hadn't, we made the conservative/cautious decision to make a quick appointment with her doc before we left town.  We had no idea that the doctor's appointment would be followed by an immediate hospital stay and the news of something that would change our lives forever.

This was the last picture I took of Tessa before we were met with information that would add clarity and change the way we did life from that day forward.

Tessa was NOT a happy baby.  She looked adorable the morning of her appointment, but the look on her face is all we ever saw.  It was her normal...and maybe on this day, a bit worse since she was also fighting an ear infection.  But this was her...never happy, never smiling...just sweet baby Tessa...that took all of our energy, all of our sanity, and had us in a constant state of desperation to calm and help her find peace and rest throughout her days and nights.  We were holding out for the 6 month mark for her to 'grow out of the horrid colic' that had also plagued Parker...but Parker's wasn't near to the extent it had plagued our little girl.

Thursday July 29, 2010

Saturday July 31, 2010

I'm going to caption this one below so that you can see the drastic difference between Thursday and Saturday.  Wow.  This hit me like a ton of bricks yesterday as I was reading through old emails and remembering this time of year, 7 years ago.  This is probably my most favorite picture of all time...with her IV Hat and all.  That GRIN....those CHEEKS....we had NEVER seen those before.  Tessa was born 4/8/2010...and for 3 1/2 months, life had been hell...and for the very first time, after hellish tests...a multitude of questions...and so many mysteries surrounding what plagued her...we had suddenly found ourselves in this new environment...in a place where we were receiving answers....and we got this...and God was gracious enough to allow us to capture it on camera.

Tessa experienced a seizure on Thursday evening...the day we checked her into the 10th floor of Baptist hospital.  We didn't know why we were there...but had been given some ideas of things to watch for and sure enough, after the stress of a spinal tap to check for the possibility of meningitis, I saw something strange for the very first time, a seizure.  On Friday morning neurology was on the team and by Friday evening we had seizure medication on board.  For the first time in over 3 months our sweet girl was able to experience life without seizures.  While our hearts broke both imagining and realizing how traumatic those first 3 months had been for her...our hearts leaped for the relief and new found joy we had with our sweet baby girl.

Here is the email I sent out to family and close friends on Monday August 2, 2010

(Before you read I will say...as you get toward the end of the email you will notice I was dead wrong about Tessa's hearing...it always annoys me when I re-read this email because while something tugged at me since her birth that something just wasn't quite right...I was completely wrong about her hearing.  We are pretty sure the CMV took her hearing completely by 2 weeks old because she passed her newborn hearing screening and around the 2 week mark is when we found ourselves completely helpless to console her.  I realize now, that our facial expressions and our closeness to her is likely how she was finding some comfort...not from any verbal or vocal efforts we were attempting)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Hi everyone, I wanted to take a minute and try and bring everyone up to date the best I can. We plan to start a blog to have a centralized place to post updates, but until we get back home to our computer, I'll have to use my email.

 We have had a fairly peaceful couple of days. Tessa has only had one minor seizure since the scary one she had Thursday night (that we are aware of). In a strange way it was encouraging to see, because it gave us a better idea of what the doctors have been telling us to watch for. She started seizure medicine on Friday night and as long as it is working for her it will be what she'll be on for all her years to come. The only side effect is sleepiness, and so far hasn't been too bad. It has been amazing to get to know our baby girl...since she started the medicine we have seen a whole new side of our precious little angel!  We have had more peaceful moments in the last 24 hours with her than we've had in her almost 4 months now with us.  It is a blessing to have a baby that finally feels good enough to give us some incredibly special smiles !! We got pictures of them last night and I will share them soon.

Tomorrow will be a busy day. She will have an MRI done sometime tomorrow (don't know exactly when yet) and should know results within a few hours. We will finally know the results of the blood cultures from the blood work they did on Thursday. We will know the results of some urine analysis, which will tell us whether or not the virus is still active in her or not. Knowledge that will help us protect those that might come in contact with her that might not be CMV positive (most concerning for pregnant women that don't know if they have ever been exposed to CMV or not- I was CMV negative which is why we are where we are today). Tessa's pediatrician came and visited us tonight and wanted us to know that he is doing his research on all this and has a few things he would like for them to test tomorrow as well. It's a lot of details, so for now I will leave it at that. He also would like them to re-perform the hearing screening that was done at birth and also perform an eye exam. I swore to him that I just know Tessa can hear us..I've been singing to her since day one and I know she hears me :) Darin and I are preparing ourselves for a vision obstacle. I don't feel like she has ever really 'seen' Mommy or Daddy...but it's always been perfectly clear that she's knows by our voices that we are near. We realize that her lack of vision will more than likely be only one of many obstacles to come, but we'll be taking a day at a time and trust that the Lord WILL provide for every moment along the way!

I don't know that any of the information that we learn tomorrow will change anything. The neurologist has said that the damage to the brain has already been done, it will just be more evident to us the more she grows.

I'm not sure I've covered everything I hoped, but I figured there might be lots more to share tomorrow so at least that email won't be near as long now :)

We are so incredibly blessed by, and thankful for, all the thoughts and prayers sent our way. It's like I told my sisters today: I guess we just know that God hand-picked these two precious kiddos just for us and we're here to make our God proud with the responsibility we've been given!      

Thank you all for loving us, supporting us and joining us on this journey with our sweet Tessa Rayne.

-Whitney

Here is the email I sent out to family and close friends on Wednesday August 4, 2010

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Hi Everyone,

I apologize if the information I cover in this email is redundant to any of you, but if you don’t mind, please forward this on to whomever else you believe would like to have the information.

Today has been another very busy day.  In the last couple of days we have been forced to digest a combination of continued test results with discussions of future plans for Tessa’s necessary care. 

Tonight is our last night here at Baptist and tomorrow we will explore our options going forward with The Children’s Center in Bethany. 

Our goal was to begin a blog for Tessa once we returned home, but since we are not exactly sure when that will be, my sisters have offered to help us start and maintain a blog for Tessa until Darin and I are able to take over.  Many of you will notice that the information they have posted thus far is similar to the emails I have distributed to my friends.  I figured I had already gathered my thoughts once for an email, that they might as well use those to get the blog up and running.  As of this evening the blog is not up-to-date, but it will be very soon.

www.bynumfourblog.blogspot.com

All we can ask is that you will continue to share your thoughts, prayers and words of encouragement with us.  We have been overwhelmed by the love and support we have received since last Thursday, but fear that as the information becomes more readily available, we will begin to feel more isolated on our journey.  We have said from day one, that we welcome anyone that would like to join us on this journey ~ please continue to let us know that you are here with us….walking with us….caring for us.  It is my prayer that this blog will not only allow for up-to-date information for everyone concerned, but that it will also allow more time for relationships to form with those that have chosen to be a part of what God is doing in our lives.

Thank you again for the all of the love, support and prayers…they are carrying us through every moment of every day.

Looking forward to building relationships and watching a really special little girl impact our lives!

~Whitney

Tunnels & Caves - - Go Be You

This is so heavy on my heart right now.

There is so much pain and heartbreak going on in this life. It is often a constant struggle to wake up and believe God is enough, every day. It's hard to describe what all I'm thinking...but honestly, NONE of us are exempt from heartache and sin. NONE. The blood shed on the cross wasn't meant for just one struggle, at one point in time in your life. We all have hard and it doesn't mean one hard thing at a time. It can mean many hard things all at one time, and even fear of impending things.

Christ's blood was shed to cover it ALL...all of the mess in all the tunnels we find ourselves in. And I believe we are meant to shine a damn flashlight for others when we have walked through, and can see a bit clearer, in these dark tunnels. As believers....I truly believe at times, the decisions we make, are made out of pain and fear...and are during seasons of life when we lose our way and forget that God is absolutely enough. We don't set out to hurt ANYONE...it is usually our best effort to try and push thru the pain. We all have pain. We all suffer loss. We all deal with crap and regret. It can hit us in moments and we never see it coming, and we can get in so deep that we spin in constant pain and struggle. We are broken and yet we WANT to come out on the other side of the dark tunnel.

Choosing to believe that God is enough...it's not a one time choice...it's every day. Just like we get up every day and we have to choose to live. We have to choose to trust God for our steps throughout the day. The grace in the tunnel???? .....it's that the tunnel is NOT a cave.....it has an opening at the other end if we can Just get thru to it. As believers, I think there can be so much shame placed on us...as if we should somehow be exempt from these tunnels....but man we are not.

Sometimes we just need some grace, we need a flashlight up ahead...or right now...to know someone will shine it at our feet and allow us to share our mess that led us into the tunnel. But we also need those that will stand strong with a flashlight in hand, until we reach the light and the relief of being on the other side. There is another side!!! And there are also more and more tunnels up ahead. But thru each tunnel, if we can grow and learn to believe that thru the struggles, God is always enough...we can learn how to venture down other roads.

*If you're in the tunnel...keep pushing forward and walking in the dark and hold tight to the realization that it's a tunnel, NOT a cave.

*If you've come thru a tunnel and have taken a deep breath, go get a flashlight and shine it at the feet of another.

*If you've journeyed many tunnels and have found grace and forgiveness in each and every one...grab a light, journey with those around you, and celebrate that moment when they breathe in that fresh air.

We have so much to give each other. So many ways to love each other. And the easiest part of all of it...is that all it requires, is for you to be YOU. Go be who God made you, and is molding you, to be...and when it's your time...shine the damn flashlight 😘

This little girl is teaching me something every day.  Because of her, I have incredible people in my life...changing it...all the time!

  

~Whitney

Longevity & Life

Longevity - long existence or service / the length of time that something or someone lasts or continues / the amount of time you work in a given career

It's safe to say that 2016 was a whirlwind.  I missed the opportunity to document so much of life for me and my family and it all makes me really sad.  But I'm sitting here today...on the other side of 2016...thankful.  Genuinely and deeply thankful for what God has done and is continuing to do in my life.

I've been waiting and waiting for the "right time" to write again.  It's been awhile ya'll.  I like to try and have things thought out and be intentional about what I share and when.  But I'm ready for a change.  It's time to be vulnerable in a way that I haven't been in a while.  There will likely be details and moments that might not quite come together for the reader...but for me, it's time to do this.  It's time to hit my re-start button and move forward in this new season of life where God is working so intimately in me.

November 7th 2005.  My first day at a new job...a job that would take me over 11 years down the road.  I didn't realize on that day, that what I was walking into would become longevity in my life.  A job that would move me and my husband to a new state.  A job that would bring the purchase of our first home together...a job that would sustain us through three pregnancies and the birth of our 3 amazing kiddos.  A job that would allow for us to care for the delicate details of our family through Tessa's diagnosis and the very fragile and intense initial years of her life. A job that provided us the ability to purchase an accessible 'forever home' to raise our family and provide ease of living long-term for Tessa.  A job where I spent 4 years in one particular position and then 7+ years in another.  Both related and service oriented...and most days I felt like I was doing what I was supposed to be doing.  After all, we didn't uproot our existence for some short-term gig...I think we had 'longevity' in our thinking all along.

There are so many moments, so many seasons, throughout those 11+ years that God made His plan and His purpose so very clear.  There was incredible provision and we always did our very best to approach that provision humbly...not anything that we did or we deserved...simply God's provision for us and our family.  Having relocated with the original company...at times, there was emphasis placed on my "longevity" at the company.  The number of us that originally relocated, dwindled through the years, and after 11 years...that number had dwindled a lot.  The provision through the longevity was indeed a gift.  And on a surface/superficial level, the direct result of that longevity, felt like financial peace and security.

January 24th 2017.  My last day at the place I had worked for over 11 years.  It was an ending that I could have never prepared myself for...a shock.  The initial devastation and confusion was intense but all-in-all, I would say fairly short-lived.  I was 23 years old when I started and 34 on my last day there. God knew I could have never walked away from that job.  He provided for our needs through that job and it wasn't something I could have given up.  He knew that I cared so much about the people I provided a service for and I loved my job. Many would probably say I wasn't much cut out for 'corporate life'...but I had definitely found my niche.  I have never really been a 'climb the ladder' type of person.  My goal was to do the very best job that I could and to provide the best service I could provide. I was content and I cared deeply about the people...people have always come before anything else for me.

I sit here now, toward the end of April...almost 3 months since my life totally changed...and I can honestly say, that there is no doubt in my mind why.  Even through the devastation that ensued that day, as I walked to my car and left that downtown building for the very last time, I knew it was exactly what God had planned for me.  He knew it all along...and the time had come and He was cluing me in a bit on His plan.

Tessa was having a rough day at school that day, and since it was mid-day and I found myself in shock and with absolutely nothing to do, I went to school to see her and check on her.  I was a train wreck, but her snuggles and the pat of her hand was exactly what I needed.  I waited around and sat with Parker for lunch.  I was visibly upset and when I told Parker I had lost my job, he gave me a hug and simply said "I thought that might be it...because Fridays are the only days you have ever been able to have lunch with me" (it was a Tuesday).  There was much professional stress for me throughout the entire year of 2016 and he was keenly aware of that.  Sweet boy...how he is able to digest the tough stuff like he does, is beyond me.  I mean, God, in and through him, of course.

I knew it was time for me to be still.  I did NOT want to miss this opportunity to hear and see exactly what God had on the horizon for me...for my family.  I made just a couple of intentional contacts initially...but that was all I was prepared to do.  I knew that this change was intended to be pretty huge and I wanted to make sure that I was allowing pieces to fall into place without imposing my own desires and control.  I made the couple of connections, I filed for unemployment, and I started tending to all of the necessary 'business' that comes with losing a job.  But I also woke up daily, desperate to feel the peace that I knew God had for me.  At times, it was the absolute strangest combination of peace and anxiety.  The big picture felt so right...but the details of the day to day were cumbersome. It's funny how that happens sometimes.

Two months ago today, I started my new job.  The two initial contacts that I made, were the only two that were necessary.  God already had His people in place to rally around me.  His plan, it's there, if we realize that it requires us to take the time to stop and see it, embrace it. There is something about longevity that I think can cause the light to dim in our lives. Time and time again, throughout scripture, Jesus is doing a new thing. He is engaging, healing, teaching, encouraging. He is loving a new person and opening the eyes of those around Him.  I realize now that the light had dimmed in my life.  It was time to take my heart and my gifts to another realm...to begin having an impact by allowing God to work through me...through change and transition...and ultimately to grow me through the processes of doubt and insecurity.  To grow me through the loss of longevity and to help me see that the only thing of value in this life, is the longevity in my relationship with Him.  That is where life comes from.

~Whitney

*For the last few months I have been using #brighterdaysahead with my postings on facebook...and I just realized the symbolism with this post...there indeed are brighter days ahead because I believe God is bringing light back to a life that had dimmed.  I don't look back on things with disappointment or regret, I just realize that when God says it's time to change, it's time.

A Picture Captures It All

If the Christmas season is heavy, emotional and overwhelming for you...for whatever reason...I would challenge you to consider this...

Imagine a moment...6 years old...looking up at Santa...unable to speak, unable to whisper in his ear or beg of him to tell you which list you are on, unable to hug his neck or sit proudly on his lap...and yet, you experience the magic of Christmas...

What if you are speechless, at the mercy of his embrace and comfort in the moment of splendor and awe. It's a magical encounter that you find inadequate ability to express the excitement to those around you.

But... as a child of God...the reason for Christmas is the birth of Jesus. It's HIS birthday...the day our Savior came for us. So for a moment, you marvel at the magic of Santa...but you find peace and overwhelming gratitude in the gift that was given and the ultimate sacrifice that was made...for us.

Santa is magical...we all want our 6 year old to experience that awe and wonder...but, Christmas is when Christ was born...a birthday that indicates salvation and freedom.

In this moment...Tessa saw the magic...she found out what list she was on and she spoke her wishes gazing into Santa's eyes. But more than that...she knows the true meaning of Christmas and it's a spiritual magic that can't be matched.

The preciously unpredictable pictures with Santa!!! 

Tessa told Santa with her eyes, she was very convincing 😍 ...

Weston wanted nothing to do with any of it 😒...

and Parker did his thing, holding everything together 😘

A couple of our own pics we got at the Hearts for Hearing Christmas party :)
Love my sweet crew

~Whitney

No Wrapping

Tuesday was an unexpected day.  The kind where I just sit back and marvel at how every detail plays such a valuable part in the beauty of God working in my life.

I was talking to my sister about it all and she gave me the perfect words...it was a gift that couldn't be wrapped.  Nothing anyone could give me...the kind of gift that only God can orchestrate.  The kind that changes you in ways you didn't think possible and to depths that are impossible to describe.

I'm still having a hard time processing and verbalizing it all.  I feel like it might only make sense to a few.  But I just know I have to write it down.  I can't let time pass without documenting it...this gift of perspective has the potential of being a profound marker in my life.

We had an appointment with the surgeon that will potentially be performing Tessa's surgery this summer on her hips.  Darin originally met with him back in August for what we thought was just to get updated hip x-rays.  There was lots of infomation relayed at that first appointment and it was important for us to go back together and do a repeat so we could process the information together.  That repeat appointment was Tuesday afternoon.  I was stressed.  I was feeling very uneducated because I didn't have the specific information to research the original recommendations for Tessa.  The only thing I really had time to look up was an alternative surgery approach that I was told about that's offered in Texas.

This is a big decision.  The last big decision we made for Tessa was to get her Cochlear Implants.  And honestly, it was not a hard decision for us.  We knew without a doubt we wanted to give Tessa the very best chance at hearing the world around her and give her the best opportunity for communication.  She was so young...just 1 year old when she got her right CI and 2 when she got her left.  The surgeries went very well and recovery was not bad at all.  This decision facing us now...a preventive surgery on her hips...feels like a very big decision.  A big surgery and a big 6 week recovery.  One day I may look back and realize it wasn't quite as big as it felt...but for now, it's huge.

I took all this stress in with me to the appointment on Tuesday.  I was so nervous.  I knew I was going to be that mom asking the millions of questions until the doctor is blue in the face.  But I knew I had to.  I also had everything ready to get his perspective on the alternative approach offered in TX.  This was my first time meeting this doctor and I knew I had the potential of really frustrating him with all my questions and especially by throwing out another doctor's name and approach (if it did frustrate him, I will never know it, he was very professional in addressing all my questions and concerns)...but I definitely went in there carrying that stress with me.  I definitely complicated the situation...stress, nerves, uneducated-protective-mama...the perfect combination to result in any number of unpredictable/unwanted outcomes ;)

I went in praying for clarity and understanding about the surgery...the specific surgery that was being recommended, so that we could make the best decision for our daughter.
I came out with clarity and understanding about our life with Tessa...a new perspective that I've never had.

In an effort to describe how it all came together, it may sound like I am being negative or judgmental about the surgeon, but I most definitely am not.  I truly believe every detail about that day was exactly as it was meant to be.  We have nothing but respect for the surgeon and couldn't be more grateful for the time he spent with us and the patience he had with me and all of my questions.

Throughout the appointment it felt like the doctor was answering my questions with a hint of annoyance on his face.  I actually expected that...I mean I did go into the appointment with somewhat of a goal to annoy, I mean, to educate myself ;)  In trying to describe it to Darin I said 'it was something about his facial expressions'...I have no idea if the doctor even realized he was making an expression, but it is something I picked up on and plays a huge part in changing my perspective.  If I could define the expression it would be - 'it's not that bad'.  Throughout all of our discussions about Tessa's CP, her high tone, her spasticity, her 4 1/2 non-ambulatory rating, etc. etc....time and time again, I would sense that annoyance on the doctor's face, as if to say 'it's not that bad'.  It was very clear that the doctor had experience with situations much more severe.  At one point I felt inclined to call him out on his annoyance (I didn't actually say that)...but I did say something like "you know, Tessa is all we know, to us, her CP is severe. I have friends that have kiddos with CP, but I'm not hands-on with any of them.  I don't have any comparison of what the day in and day out care is like for any other child with CP, I only know our experience with Tessa and it feels very severe."  I went on to describe specifics about the things that Tessa's body does, because of the CP, that can be so hard for us.  He validated everything I was saying and was very understanding, but still...the expression.

I know I'm exaggerating it all a bit in my head now that I'm on the other side of it, but I just sit and wonder what must have been going thru the doctor's head.  When you have a profession like he does and you see the extent to which kiddos can suffer from the effects of CP, there is no doubt in my mind it changes you.  He does what he does to help improve the quality of life for kiddos that have a rough road.  And he helped me realize that yes, Tessa has a rough road.  And of course, life with her and how CP effects her, is all we know.  But he knows more...he has seen more...he has offered medical intervention as a preventive measure and as a necessary measure...he has seen much rougher roads.

I am so thankful that God allowed me to sense annoyance from the doctor (whether it really existed or not).  It communicated a perspective that we are rarely offered in this life of ours...a perspective that 'it's not that bad'...there are rougher roads.  CP impacts every child differently.  It gets worse over time because there are huge downsides to growth.  Doctors don't have all the answers...so much is a mystery.  There is always hesitation to suggest what will or won't happen.  It's anyone's guess.  Darin and I definitely feel like the experts when it comes to Tessa and her care sometimes.  Maybe this was the perfect storm of having an experience with a brand new doctor and conversation with someone that has never been involved in Tessa's care.  Maybe this was the result of all of my ignorance and annoying questions.  Maybe I sensed annoyance in facial expressions that didn't even exist.  Maybe our limited interaction with other children with CP has created a sense of isolation in this specific realm of Tessa's diagnosis.  WHATEVER it was, whatever it is, I am so thankful to have walked away from something with more clarity and understanding than I could have ever asked for.  I'm so thankful that someone was placed in front of me with boldness in the fact that 'it's not that bad'.  I am so thankful that I went into the appointment the train wreck that I was...because I believe God orchestrated all of these pieces to change my perspective and impact me.

The details are a mess when I try and write them down...but they are put together so perfectly in my head.  Whenever I come back and read this I will know exactly what it meant.  In those moments when I sensed the doctor's indication of annoyance I will remember...'it's not that bad'.

Instead of adding more words to this mess, I will end with these.  I went home Tuesday after the appointment and I loved on Tessa in a whole new way.  This was me fully embracing a change in my perspective.  Tessa deserves my very best, but I am incapable of that for her all the time.  But on this night, I promised her I would try.  I would try harder than I have been trying.  I promised her that I will let God change me in the way He is trying to change me.  I thanked her for what she is teaching me...for her patience as we journey this rough road together.

She knows, I know, 'it's not that bad'.
I believe the best gifts in life, can't be wrapped.  I think we miss them sometimes, but I'm so glad I didn't miss this one.

  

~Whitney

My Burden Carrier

Man, yesterday was hard.  

Navigating life with special needs is hard.  Being a mom is hard.  Being a working mom is hard.  Planning for things you never thought you'd have to plan for is hard, keeping your head up is hard, juggling decisions is hard, avoiding defeat and managing fear...it's hard.

I'm thankful My Creator is My Burden Carrier.

~ ~ ~ ~ ~ ~ ~ ~

I was giving Weston a bath last night and since it was just the three of us at home for the evening, I took Tessa in the bathroom with us in her wheelchair.  Her bath was next.  

As I am bathing Weston I look up and this is what I see...

My little girl.  

Ears off. Eyes off. Legs off. Sitting a bit awkwardly in her wheelchair and just gazing up.

My thought in that moment:

~One of those nights when you sit and wonder how it is that your beautiful little girl...in her natural state...can't hear, can't talk, can't sit up, can't walk... and yet somehow life goes on...joyfully for the most part. Thank goodness it's not on me.~

We are in the planning stages of a very big surgery for Tessa this summer.  One we had been told in those early years after diagnosis, to plan on.  For some reason I had more of the timeframe of age 8-10 in my head for this particular surgery...not 6-7.  I know it's basically the same...but it hit me like a ton of bricks.  We have been so very fortunate to have had very few critical care moments with our sweet girl...mainly centered around seizures.  And as far as surgeries go, only 3 and all elective: ear tubes, right cochlear implant and left cochlear implant.

~ ~ ~ ~ ~ ~ ~ ~ 

Spastic Cerebral Palsy is a beast.  

It's an ugly and stressful freakin beast.  It is the very reason for the surgery coming up this summer.  On my really bad days, I curse it.  For everything that it is and everything that it does to Tessa.  Between it and Epilepsy...there's a lot of cursing going on in my head.

  

I'm learning more about the surgery as the days pass and we are waiting to have a consult with the surgeon in late November.  It is a preventive surgery.  Preventive in that if we don't do it within the optimal timeframe, it could mean a much bigger, more serious surgery down the road.  

The surgery - Bilateral Femoral Osteotomy

This link seems to provide a pretty good overview of the surgery.  I honestly haven't read much of it because I tend to rely on the information given to us by the medical professionals that are specifically involved in Tessa's care.  I also usually wait to write anything until I have ALL the details (which we'll get in late November)...but for now, this will do.  From my limited knowledge base at this point, the surgery is necessary because Tessa does very limited weight-bearing (standing, walking, etc) and her ball and sockets are not forming and therefore her hips are not forming correctly.  This surgery will manipulate and re-position the ball of the femur in the hip socket.  The bigger more serious surgery we are trying to avoid down the road? ~ hip replacements.  It's a lot to talk about and consider for our 6 year old little girl.

Preliminary Planning has begun.

Again, without having all of the specific details, we have begun our planning around the broader details that we know for now.  We are planning for the surgery to occur at the beginning of the summer and we are planning on a 6-12 week recovery for Tessa.  We are so thankful for Darin's teaching job and the flexibility it allows us in the summer to tend to these very things.  I can't imagine what things would be like if Darin and I were both having to plan and consider time off of work to accomodate a necessary procedure like this.  But ya'll, it's still so hard.  This is when being a working mother challenges every fiber in me.  The reality is, I can't be there in the way I desperately want to be there for Tessa during the entire timeframe.  The desperation in me screams 'drop everything and run...do it...be there...for all of it...whatever it takes'.  But I know God does not desire desperation for us in our lives.  He calls us to trust and have faith that He will provide for what is up ahead.

Thank goodness it's not on me.

It's On God...This Beauty is His...

She is simply stunning! 

6 years old, holding her bottle, ready for bed and ~ Stunning! 

God has shown us that His ways...His provisions often look very different from what we think and expect. We are faithfully anticipating His goodness in this season of planning and preparing.

Psalm 32: 8 (NIV)

"I will instruct you and teach you in the way you should go; I will counsel you with my loving eye on you."

~Whitney

Hope...it's all I have

Because it's easy to assume those around us have it all together. We don't. We ALL struggle. Public and Secret Struggles, alike. This is my attempt at leveling unrealistic views of me and my family. Careers....Family....Marriage....Special Needs....whatever it is, we fail. But there is Hope...and that's all I have.

I had a dear friend message me last night with incredible words of encouragement...but it got me thinking...I've decided vulnerability, authenticity and truth are so very important...so here it is, my sincerest reply back to her:

"Girl you are waaaay too kind! But for real....it ain't always as it seems, you know! I got demons that haunt me and guaranteed bad choices around EVERY corner...just like anyone else. To be an absolute OPEN book would be so freeing....but thus far God has clearly influenced our journey, cause I don't know how it all comes together half the time either. We have so much to be thankful for and are so blessed....but it doesn't have a damn thing to do with my ability....it likely has everything to do with my inability and desperate need for Jesus in my life. I fail all the time. I struggle with self doubt all the time, I suck at being a wife and I have days I question everything around me. God is my sanity....my only sanity...and my saving grace. Just like everyone else...I just do what I have to do and pray each day to somehow lay my head down not feeling like a complete and utter failure."

Honesty. Vulnerability. It ain't always roses folks...it's just not. The truth is dependency...on the One who created me. That's it.

~Whitney

"Tessa Rayne" 6 Years Ago

"Tessa Rayne" - gatherer of provision

A special meaning shared with me by my oldest sister and something that gives us such encouragement and strength:

So when I looked up "Tessa" and what it means I found that it means "gatherer" and when I think about rain it is always provision. So her name Tessa Rayne together means gatherer of provision. And these verses (Isaiah 55:9-12) to me show that it is God alone who makes provision and when He does it is undeniable and is never for nothing but always has purpose.

It's been 6 years since Tessa's hospitalization and diagnosis...6 years of seeing God's immeasurabe provision for Tessa and our family.

The sweet smile on her face in the picture below was the day after we learned of her Congenital CMV diagnosis...it's a treasure and a reminder that God had us in the palm of his hand.

~Whitney