. . . from 2 Corinthians 4:7-9,15-18 "But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed;. . . For it is all for your sake, so that as grace extends to more and more people it may increase thanksgiving, to the glory of God. So we do not lost heart. Though our outer self is wasting away, our inner self is being renewed day by day, For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal."
Dear ones, we sought the Lord earnestly in prayer and fasting last week as we continued to pursue various forms of alternative options to treat Hope's scoliosis instead of surgery. We had a very positive meeting and initial assessment from a scoliosis doctor who treats with SpineCor bracing, and were excited about pursuing this. We contemplated putting off the back surgery until next summer, and in the meantime pursue SpineCor bracing to maintain Hope's flexibility in her severely bent and rotated spine and pelvis. . . and who knows. . . perhaps God would desire to heal her through this. . . there is no evidence to suggest this, but if there was no harm in waiting, then why not try. . . the theory behind it seemed to be encouraging! We had a meeting with Hope's school and in discussing the plan for her schooling next year with how well she is doing academically (I can share an update on her schooling plan for next year in another update!), it was decided by all, that Hope's schooling could be done entirely at school, leaving her home time open for a rigorous at home physical therapy plan towards walking/standing. After a year of SpineCor and daily practice at walking, we would have a much better take on the important decision of when the surgery should happen as well as what kind of surgery to do. Hope has been having another big jump in her brain injury recovery progress over the last 2 weeks, since finally feeling better after the Baclofen pump surgery complications and recovery. She had even shown a huge increase in her core trunk muscle strength which showed in how much straighter she was able to hold her back when sitting as well as starting to roll to her left side on her own in bed (prior she could only roll to her right side with the help of a bar). We didn't want to put an end to this kind of growth! Last summer was also a huge leap in Hope making gains, so we wanted her to be feeling well and to have the opportunity to continue in that direction. . . UP! We have a doctor appointment with a back specialist at the Children's Hospital in Phoenix, and had made contact with the Mayo Back Clinic in Minnesota to try to find more cases similar to Hope and thus more data on treatment and outcomes of neuromuscular scoliosis. All this to say, as this information poured in, and after much prayer, we believed the Lord was leading us to postpone surgery for one year and pursue these things while our girlie had a chance to continue to recover and possibly alter the degree of surgery she would require, if any at all! Now we just needed the back surgeon to agree with us. . .
This is where our hearts were at as we woke up last Friday morning. . . unsure, but hopeful and totally trusting the Lord for His faithful leading through our final assessment and appointment with the back surgeon. As my post on Thursday evening shared, we were trying to not just focus on our desire to see Hope healed. . . we were asking, for sure!. . . but we were just as focused on asking God to do a work in hearts. . . ours AND the back surgeon's or anyone else He had a plan for through these circumstances. It was an exciting morning! We couldn't wait to see those x-rays show that God was at work, once again, healing another "NEVER" in Hope's life. . . surely we would avoid, at least for now, the very first PERMANENT procedure that Hope would be required to have. . . God's plan must be in line with what we were praying for and seeing multiple circumstances moving us towards. . . this really seemed to be the BEST for Hope and what gave our souls rest! Yet, we were keeping our hands open. . . we have learned so many times the importance of doing this and preparing our hearts to submit to a different plan even one that keeps you on the altar of trial and suffering. . . but not this time, right. . . dear Lord?!?!
That morning was relaxed as we prepared to take Hope to the hospital for a very long day of pre-op appointments and tests. . . which we were expecting to have the majority cancelled after those x-rays revealed the miracle that God could do in Hope's back! As we were about to head out the door believing that we were early for our appointment which had been confirmed the day before by the booking clerk, I received a phone call from the back clinic nurse that we were actually late for the pre-op teaching appointment with her (a communication error), who was sick and had come in just to do the teaching with us. . . it immediately gave me a sick feeling in my stomach that they were already unhappy with us and this did not bode well for this long day and our hope to see their hearts and minds change. Or was this the moment of increased anxiety before our Lord "walked on water" and calmed the storm with His miracle answer to prayer?!?!
But, the storm grew worse and so did our fears. . .we could relate to those disciples as they were thrown to and fro in the boat wondering what was next! Once there, we started with the pre-op teaching with the nurse, which quite honestly was hard to pay attention to, as we had a line up of appointments and tests, and we were now late for them all due to the pre-op teaching needing to be done first so the nurse could go home. We were thankful to receive Hope's medical information (paper copies of some of the specialty doctors' most current summary reports and spine imaging on CD). When the nurse asked Hope if she was ready for "this," by which Hope thought she meant the teaching, Hope replied, "Yep!" I was horrified. . . our last ditch hope was that the surgeon would feel that Hope was not ready for this! I mentioned that she did have some questions and concerns to discuss with the doctor as she was very fearful of the surgery. After the teaching, the nurse went to take still pictures of Hope's bare back, and it went very poorly. They didn't look anything like the pictures I had taken at home just a week earlier.
As we moved on to the x-ray department for a final series of x-rays of Hope's spine and pelvis, we were stressed and anxious. We talked to Hope about doing her best to trust us with helping her and taking care of her concerns (she has cut her feet on the steel legs of the x-ray chair previously and has a big fear of them now which cause her to be more tense and apt to then get hurt). She was hurt and cried feeling like we were blaming her for things going poorly in the previous still shot series by the nurse. We all tried to get our hearts calm but the x-ray tech called us in before we got the chance to pray. Inside the x-ray room, things continued to go from bad to worse, and so finally I asked everyone to give us a minute. . . I got close to Hopey, forehead to forehead, with her cheeks in my hands, and all beneath mommy's "curtain of hair!" We got into our little "safe space" and prayed together. Hope's heart calmed and in spite of pain and fear, she worked with us and we got the first two x-ray views sitting in the x-ray chair. They even gave us a countdown so Hope could sit up as straight as she could when the x-ray was taken. Phew! Now just the two bending x-rays from side to side while lying on the table. . . these were much easier. However, the surgeon came down with another doctor and they wanted to do an x-ray of Hope's spine under traction to have the most objective view of the flexibility of her spine and the amount of correction possible. . . this would be very important in considering surgery. With all the flurry of getting set up, and instructions flying around from the 5 people working to set up the x-ray, Hope's stress continued to build and we needed another quick moment under "mommy's curtain of hair" to continue. Then the surgeon took Hope's head and jaw, and the other doctor took Hope's lower legs and ankles and they both pulled "as hard as they could," according to the surgeon's instructions. The x-ray was taken, and the group left the room to wait and see if the picture worked.
Hope only let out a whimper, but told us right after they left that she felt such pain that she thought she was either going to pass out or throw up. I was starting to feel like I was going to pass out, and Trevor told me to sit down. . . none of us had eaten yet at this time, as we had all decided to continue to fast together until the 11:30 am surgeon appointment. Only it was now 12:45 pm and we still had 2 more lateral bending x-ray views to take. I told Trevor that it wasn't the lack of food, it was the stress and the sick feeling in my stomach that was building. . . "This isn't going well, Trevor! He's going to say that she needs to have this surgery and that's making me feel sick!" One of us now needed to leave and go pick up our Gabi girl from school, but we knew that would mean one would miss the most important appointment coming up with the surgeon, and that wasn't an option. I left to make some calls and try to figure out a last minute fix. . . we were able to get ahold of a dear family in our church that was willing to pick up Gabi and bring her to the hospital to us! We were so thankful! By the time I got back, Hope's last two x-rays had been completed. Trev shared that it continued to go poorly. . . he explained that he was supposed to pull on Hope's arms to bend her to the side against the direction of the scoliosis curve, and again it was either so painful or distressing, that this time Hope felt as though she was about to have a seizure.
We left the x-ray room and stopped to ask for these most recent images to be put on CD to add to our other collection. However, after filling out paperwork and having the x-ray supervisor come out to hurry us on to the appointment with the surgeon, all while we were being overhead paged to the back clinic. . . can you sense how our stress was continuing to grow!. . . the diagnostic imaging front receptionist explained to us that the machine was broken and we would have to either come back next week for the CD or go to another hospital to submit the request. We left with a half-filled out form, sunken hearts, and next to tears. . . could this get any worse? What was God doing and what was next?
At the surgeon's appointment, he asked Hope if she had any questions or concerns to discuss with him, and Trevor and I, both looked at her with anticipation, hoping that she would say something that would cause him to reconsider the timing of this surgery. . . Hope's response was, "Nope! I can't think of anything." She was exhausted and quiet and definitely was not going to say anything. So I started with asking to see the x-rays that were just taken. And so the storm worsened again, as our hearts broke and spirits sank upon seeing the x-rays. The first one was slightly positive. . . Hope's main scoliosis curve was 110 degrees, which was a bit better than the 126 degree measurement in March. This was because Hope's core trunk strength has continued to improve and she was able to hold herself straighter for the x-ray. However, the rest of the x-rays were concerning. The traction x-ray showed that Hope's main scoliosis curve was only able to be reduced to 60 degrees. . . the surgeon was not thrilled with this and had hoped for a more flexible spine to work with and a better correction than this. With a 60 degree curve still (although much better than 110 degrees!), there is the possibility of future surgeries. And the final and most concerning thing noted on the x-rays was due to Hope's continued spinal growth. Normally that's a good thing, but because Hope's spine is so bent, the growth had not made her straighter, but rather had moved the curve over more to the right part of her chest cavity and it was now occupying the right lung's lower 1/3 lobe space. . . the large curve of her spine was pressing against the lower part of her right lung. The surgeon was concerned that already she would show diminished lung capacity, and this also caused further risk for her during the lengthy back surgery. The news that Hope was already showing an increased rigidity in her spine, as well as the pressure on her right lung was very concerning and discouraging. . . it certainly made our hope to postpone surgery now a serious health risk to Hope.
We had no fight left in us, no hope on which to stand that surgery could be avoided, no idea for a better solution, and no comfort for our own hearts, let alone our devastated daughter who was holding her hands over her ears for much of the discussion. I turned to Trevor, who was still fighting for his little girl with every angle he could think of, and I broke down as I said, "Honey, we prayed that God would grant wisdom through this doctor today and make His will for Hope's life known. And we prayed that God would work in hearts today. We just didn't know that He was going to change our hearts to the side of the doctor instead of the miracle of healing that we desperately hoped and prayed for. I want you to know where I'm at. . . broken-hearted but resigned that this is what we must do. Now you need to ask any more questions you need to, so you can be in the same place." My ammo was empty and I had nothing left to shoot. . . and then I sat numb and hurting as I watched my beloved husband and the father of our precious girlies empty his ammo in a final barrage of questions. . . how I love that he fought so hard for his little girl and her wishes and the hope and dream that he had to work with her to walk again some day! We both looked at each other and with tear filled eyes and devastated hearts, we said okay to the surgery. I'm sorry if I sound like I'm being dramatic. . . my heart is to share in a very open and real way so that God might choose to use our raw emotions and realities of the moments we were walking through to encourage someone else who might be hurting or struggling, help someone who might have similar circumstances (you're not alone!), help you to know how to pray for us, and so that you might see that we struggle and hurt too. So then when you see the faith that God grows in us, you'll know that it is all by Him, for Him, and through Him. . . we are so weak and helpless on our own!
From that moment forward, all attention was on Hope. If the surgery was on, then this hurting, terrified, and stubborn (just like her parents) little girl was going to desperately need support and most importantly God's grace. The doctor tried to start by asking Hope to "think positive thoughts and believe in the surgery, to do her part so it would go well." I wasn't surprised, and was honestly almost a little thankful when she quickly retorted, "No, I won't!" Good girl! That wasn't going to meet the deep needs in her heart at that moment. . . and as much as her heart was hurting, she knew where to place her trust and hope! Trevor and I spent time talking to her. . . reminding her of the amount of prayer that went into this appointment and how the Lord had clearly led as to His will for her life at this point. We talked about all of our need to trust God, no matter what! We talked about the pain of this moment, but the grace that we knew God was already pouring over us and that when it came time to wheel into surgery, we knew that God would give the "grace for the space," as I heard recently from a sweet friend! God would give the grace we needed when we needed it! His grace would be sufficient!
As we hugged Hope, cried with her, and watched her heart start to soften, God did the miracle that we had desperately prayed for all week. . . it just wasn't the miracle that we had envisioned. The miracle was two-fold. It started with a surgeon who was watching our family weep and cling to our only hope. . . God!. . . and then start to search for something online on his phone. He found what he was looking for and then quietly asked if he might read and share something that his father had quoted to him many times as a boy. He began to read words that are, I'm sure, familiar to many of you . . .
"God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference."
The surgeon stopped here to say, "There is actually more to this prayer that I've never read, so let me continue. . ."
"Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonable happy in this life
and supremely happy with Him
Forever in the next.
The surgeon then changed his approach and said this to Hope, "Hope, I need to be courageous to do the things that I can do that I believe will help you, and I need you to be courageous to do your best, and we will leave the rest to God."
Hope softly responded, "Okay."
A two-fold miracle. . . not at all what we had thought was going to be the miracle we would see that day. . . but rather a miracle that God ordained as His will, His plan, and for everyone's best. He did a miracle in the heart of a surgeon and a little girl! A surgeon who went from "positive thoughts" to a prayer of submission to God's Sovereign plan and complete trust in Him based on a solid hope of what is yet to come in eternity! And a little girl who went from "NO!" to "Okay." We don't know where this surgeon's heart is at with the Lord, but would you please pray for him? All I know is that we prayed for God to work in and through this man, and He did that in ways that we would not ever have expected, and as painful as it was, God's hand at work was evident. . . we heard exactly what our hearts needed to hear at that moment, and Hope's heart responded to the call of her Saviour to trust Him in the hardest circumstance!
After the surgeon left, Trev left to meet the family who had brought Gabi to us. I was alone with Hope and this conversation ensued. . . I thought you would be encouraged to hear this. . .
Hope: "Mom, I was so angry. I wanted to say really bad words, but I didn't."
Mom: "I'm so thankful, honey that you practiced self control and didn't say those words."
Hope: "I was fighting back tears too, mom." As her trickling tears now turn into deep sobbing.
Mom: "It's okay to cry, Hope! This is very sad and God understands that and you can cry as much as you need to." As I held her close and hugged her while she just sobbed and shook in my arms. After a few minutes. . .
Hope: "Mom, I was a little angry at God, too."
Mom: "I know honey. To be honest, I am too. I know what we were desperately praying for today, and it hurts so deeply that God said no and has a different plan. And you can talk to Him about your feelings; He already knows. But Hopey, we can shake our fist at God, we can stomp our feet and be mad, we can even refuse to have the surgery done. . . but what would that accomplish?"
Hope: "Nothing. . . I still wouldn't be healed."
Mom: "Your right, honey. So what is our only option to do?"
Hope: "To trust Him."
Our family was about to be reunited as Hope and I left the office. And as we walked towards Trevor and Gabi, there was a sweet little lady. . . the Diagnostic Imaging front receptionist that we had met earlier. . . she was yelling and waving at us, "Hope's dad! Hope's dad!" She had 4 CD's in her hand. She was smiling ear to ear, frantic to catch us, and grabbed me and hugged me twice before she started to explain, "Hope is a special girl, and we need to take care of our special ones. So I sent my co-worker over to the Foothills Hospital and we got these images all put onto CD's for you. Here you go! I am praying that the Lord will see you through this and I know that He will!" Trevor responded, "Amen!" And the woman quickly added, "I am a Christian too!" I hugged her again and told her what an incredible blessing she had been to us today and that God had used her in a very special way to meet a need for our family and communicate His love and care for us at a very difficult time. She said that she couldn't wait to go home and share the story with her family! Later she called Trevor down to Diagnostic Imaging again and had 2 more CD's to add to the stack. When we looked at them later, we realized that she had actually copied every single imaging picture (x-ray, ultrasound, MRI, cat scan, etc.) that had been taken of Hope since Dec 14, 2011. . . the day she entered the Emergency Room! It has over a hundred series and thousands of pictures! We couldn't believe what we had just been handed . . . to be able to look at some of the pictures we've heard so much about but never seen, will be wonderful! How the Lord will choose to use this beyond our simple curiosity, after so long of so many unanswered questions, we will yet have to wait and see. All we knew at that moment was that God was already pouring His grace over us. The pain was still there and our little girl was still having surgery, but His grace was evident in the midst of it all and He hadn't forsaken us. . . He was just working out a plan that was "above our security clearance level." Would we trust Him?
From there we went straight to the surgery clinic for the anaesthesiologist consult appointment. It was a long wait and our family was so exhausted by this point, but God supplied the grace to wait and get through another hard appointment where the doctor shared all of his concerns about getting Hope safely through this surgery. There were a lot of decisions that will not be made until the time of surgery and as they go, because he was so uncertain about how she will respond. I will share more about the details of the surgery, the concerns/risks, and how you can be praying specifically for Hope before, during and after surgery, but this post is long enough for now. : ) We left the hospital after 4:00 pm. . . it had been such a long day and we decided to postpone on the blood work until later. So that is still coming, for those who were already praying about another poke for Hope.
I'll end for now with this last share from my heart. . . I have had many people ask if we have a "peace" now that God has made this decision for us. Maybe I just have a stubborn heart (mmm. . . that's actually NOT a maybe!), but I think that I am learning more about how we obtain that "peace that passes understanding" talked about in Philippians 4:6-7. If you were to ask me if I'm at peace about this decision being made for us, I would tell you honestly, "No." I do not feel at peace. There is an element of this trial that throws us right back to day one of Hope's life changing forever and the deep sense of shock, loss, grief, pain, discouragement and even a bit of anger (among many other emotions that could be added to this list). I honestly don't know what God is doing through this. I don't understand how it is the best plan for Hope's life and those around her, especially those who have faithfully prayed and sought the Lord on her behalf. I feel more uncertain about Hope's future than I have for a while (with this past year being such a positive year). At times when I think about aspects of the surgery and recovery, the pain that Hope will go through, the loss that she is experiencing now and will continue to as the full effects of this permanently altering surgery unfold, I beg God to yet heal her. . . I scream that it's just not fair. . . why her. . . why another loss. . . hasn't she suffered enough. . . take my back instead, please. . . my strength and heart cave into a pile of rubble and I know that if she were being wheeled into surgery at that moment, I would be a crumpled pile on the floor. I am weak to the core. Peace. . . no, that is not what I am feeling dear ones. Devastated. . . yes, simply the best sum of all the emotions that we are going through at various times. But something IS different from before that final surgeon appointment on Friday. . . a decision has been made and we have resigned ourselves to the fact that Hope will be having back surgery, very soon, and we are now walking in obedience to what God has willed for Hope's life. It is not easy, but it is necessary! Peace in this situation, dear ones, is not a feeling. It is rather knowing God's will and choosing to obey it, regardless of our feelings and the pain that is ahead. Jesus has walked to our boat in the middle of the storm, and as we cry out for His deliverance, rather than calming the storm and taking us to safety that is SEEN, He is telling us to hold on and continue to weather this storm based on what is UNSEEN. And how can we do this? Because we know Him! The sheep know their Good Shepherd, and He knows them. It was no coincidence that Trevor's message this past weekend was from John 10:1-21 on our Good Shepherd. He shared with our church family how meaningful and impacting his study of this passage was this week for what we were walking through, while updating our church family on the plan for Hope. A year ago when Trev made his preaching calendar, God knew that he would need this message for this exact time. . . another grace indeed! You can watch the sermon at this link. . .
What do we KNOW of our Good Shepherd? He is faithful, His love is steadfast and perfect, His ways are higher than ours, His purposes will not be thwarted, He will never forsake us, He is always good, His rewards are eternal, His grace is sufficient, His salvation is sure, and the list could go on and on! He is leading, and we must simply TRUST and OBEY! Rather than peace leading us to obedience, it is obedience that leads us to peace because of who God is, and because of what Christ has done on the cross for us!
So although we do not know where the Good Shepherd leads, we can trust and obey Him. We can be devastated in our circumstances, and yet just as the verse I shared at the beginning says. . .
2 Cor 4:8-9 "We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed."
As the serenity prayer shared, we are "accepting hardships as the pathway to peace!" So we have HOPE! Hope in the face of pain and trial (what is seen), because our hope is in what is UNSEEN. . . an eternal weight of glory beyond all comparison because of what Jesus Christ has done for us, and because the Good Shepherd will lead in ways that are higher than ours, and we will TRUST Him!
2 Cor 4:16-18 "So we do not lost heart. Though our outer self is wasting away, our inner self is being renewed day by day, For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.
We will spend these last 10 days celebrating what He gives, in preparation for what He takes away, knowing this. . .
2 Cor 4:15 "For it is all for your sake, so that as grace extends to more and more people it may increase thanksgiving, to the glory of God."
We will obey Phil 4:6-9, "Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things. What you have learned and received and heard and seen in me--practice these things, and the God of peace will be with you."
Thank you Lord for the almost 12 years of flexibility that You gave to our Hopey Bear! She put it to great use in the many giftings and abilities that You gave her. . . swimming, gymnastics, dance, stunts, biking, and running (this is her list of favorites!). And then she put it to great use after her brain injury when she learned to hang over sideways to lift up the feet of her recliner, or curl into a ball to sit up, or stick her feet behind her head, or put herself into a pretzel shape (earning the name, "Pretzel Girl!"), to give a foot version of a "thumbs up," or to talk on her "foot phone!" Hope was very known for the flexibility you gave her. . . and now we trust wherever you will lead, Good Shepherd, as you take it away. . .
Please pray for our hearts! Based on all that I've shared, you know the fragility and weakness that resides there. We so desire to be faithful to trust and obey our Good Shepherd! There will be more posts to follow. . . a note from Trev, a note from Hope, specifics regarding surgery and how to be praying there. I wanted to get this post on first to share the beginning of this next part of Hope's journey. Thank you dear ones for how you continue to walk this with us. . . how very much we love and appreciate each and everyone of you!!! I'll leave you with some fun pictures that Hope wanted to share with you of some of her more flexible moments. . .
|Fall of 2013|
Hope folded in half!
Snuggling with Daddy!
Hope talking on her "foot phone!"
How does she do it and still smile? : )
Hope's foot version of a "thumbs up!"
This was at Hope's School Christmas Concert where she sang in the choir.
This was a typical pose for Hope. . . I asked to take a picture of her, and this was the pose she did for me! A graceful little dancer!
Performing a dance routine in the Santa Clarita Christmas Parade!
Gabs and Hope free-style dancing to music in Grandma's bedroom!
More free style dancing, which usually meant lots of graceful balancing and flexible moves from Hope! Definitely did NOT get that from her mama who is quite clutzy! : )
Cutting the floor with some great buddies!
Dancing with her beloved daddy and getting the ever so fun, dip!
Bike stunts were one of her favorite things to do. . . both legs up!
Eventually this turned into both legs up on the handle bars as mom tried not to stress!
Another bike stunt. . . sitting on her foot!
Hope and Gabs chase after uncle's remote control car!
Hope always loved to run and was quite thrilled that she was starting to give her dad a run for his money to keep ahead of her!
Don't I look great as daddy's belt! : )
Hanging upside down with my buddy, Hannah! : )
Have you noticed that Hope loves to do flexible balance poses for pictures! : )
And another flexible balance act by Hope! : )
Hope was having a synchronized jump into the pool with her daddy!
Hope put everything into sports when she played. . .
Great follow through Hopey!!! That ball sailed into the wide blue yonder!!! ; )
Running basketball drills with my dad on Family Day!
Hope was excited to attend the basketball after school program the last few months before her brain injury!
Hope takes a shot at the basket! Go Hope!!!
Thanks for checking out Hope's more flexible moments over the last few years!!!