Let It Go

I’m a list maker.

I think it started sometime between my late teens and early twenties. For many years, it was just a way to get all the jumble out of my head. The need increased during the pregnancy of our second child when I began to suffer from serious “pregnancy brain.” (Incidentally, I also turned 30 at that time, so I’m not sure which was to blame.) It never went away, and the dependency on my lists increased exponentially after the birth of our third child.

Read more at my guest post HERE.

You should see the other guy

Last Tuesday, Hope had a broncospy scope. She was put under anesthesia and her ENT looked in her airway for problems and/or progress. Sorry I haven’t shared this or the results. It’s been a busy week and it’s hard to type it all on my phone.

Hope’s airway looks good except for a granuloma in her airway above her trach. It doesn’t appear to be causing any issues right now, but is blocking 50% of her normal airway and would have to be removed if they took the trach out.

The ENT now believes that her inability to manage her secretions is neurological and not congenital – meaning it isn’t something she can just outgrow by getting bigger. The trach is essentially treating symptoms (excessive secretions and aspiration) and if it were removed at this time, her lungs would fill up and she would drown. As of right now, no changes will be made. We’re still hoping to get her on an HME valve sometime in the near future (it’s basically a humidification filter that wouldn’t require her to be connected to anything), but she has to be off of oxygen for that. We had her weaned to the minimum amount during the day, but since she got pneumonia again a couple weeks ago and a nasty case of bronchitis now, she’s on more oxygen than she’s ever been on. It seems as if we are moving in the opposite direction. It is somewhat discouraging, but we continue to trust God.

Today is Hope’s birthday. The Lord revealed something to me today – today is a victory! I woke up this morning looking like I’d been punched in the face after a long, hard night of her bronchitis. I jokingly said to my husband, “You should have seen the other guy.”

I then received messages from my mother that she had been praying since 2am without even knowing anything was going on during the night (God often wakes her to pray like this). She also sent me this scripture:

Keep a cool head. Stay alert. The Devil is poised to pounce, and would like nothing better than to catch you napping. Keep your guard up. You’re not the only ones plunged into these hard times. It’s the same with Christians all over the world. So keep a firm grip on the faith. The suffering won’t last forever. It won’t be long before this generous God who has great plans for us in Christ—eternal and glorious plans they are!—will have you put together and on your feet for good. He gets the last word; yes, he does. – 1 Peter 5:11 MSG

God revealed to me that a spiritual battle is waging, and though my swollen face has a physical cause, I feel it is also spiritual…physical evidence of a spiritual battle. You see, Satan wants to destroy my child and my family. He has set out to destroy her from before she was born. Many of you have told us over and over, and we have said it ourselves, “God has big plans for her!” Well, guess who else knows that? She has touched so many in just her first year, and she can’t even talk yet! Just wait until she gets her say! So yeah, he has tried and is trying to destroy my child…but what the devil meant for evil, the Lord is using for good!

I hold to the words the Lord spoke to me back in July when we were making the gut-wrenching decision whether to go through with decompression surgery to relieve her Chiari malformation, and He reminds me often – “I’ve got this!” God sees the big picture. God saw 6 months down the road when the MRI would show that she has NO Chiari malformation. I see this moment. He sees from beginning to end and on into eternity. He reminds me of this as my human self gets weighed down and burdened for her suffering. When I don’t get the answers I want now. That still, small voice reminds me again, “I’ve got this. I’m in control. Let it go. Rest child.”

Rest. Something I could really use right now. Will you continue praying with us and for us? Help us fight this battle.

 

Created for a purpose

“Before a young couple is faced with the hard news of disability, will they see children with disabilities in your church? Will they see mothers and fathers with disabled children acknowledging the pain yet standing in the strength that God provides?”

This is why I write this blog. This is why I write and speak so honestly. This is why I call myself a missionary.

To read the rest of this post by John Knight for Desiring God – go here.

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“As he passed by, he saw a man blind from birth. And his disciples asked him, ‘Rabbi, who sinned, this man or his parents, that he was born blind?’Jesus answered, ‘It was not that this man sinned, or his parents, but
that the works of God might be displayed in him.'”

~John 9:1-3~

One huge paradox

I’ve felt for a long time that I was called to missions.

I know we are all called as Christians to spread the gospel, but I felt a calling to foreign missions. It was a quiet passion long before I met my husband – who thankfully shared the same passion. In the time since we’ve been married, every time the subject has come up at church and the pastor has said something along the lines of “Stand up if you feel called to missions,” we’ve never even had to discuss it. We both have stood up. It’s something that we both knew was in the future and we were just waiting for the directions.

I knew we had a purpose. I knew one day God would “send us” somewhere special. Somewhere foreign – possibly even remote.

I just didn’t know it would be here.

Every time I hear stories from missionaries or see images, that desire arises, but then I remember – we can’t go. Not right now. Not with our little girl.

Somewhere in that longing though, God spoke. I don’t know when it was. I don’t remember. I just know at some point I began to hear, “You’re already there. You’re in your mission field.”

I felt this, but I didn’t know how to explain it…or even fully what it meant.

Until today.

A dear person gave me a fabulous book this past Christmas called Kisses from Katie. I just finally began reading it.

You want to read this book!

You want to read this book!

The Lord made my “mission field” clearer to me in the pages of this book, and I immediately felt inspiration to share.

While I was reading about Katie’s conflicting experiences as she adjusted to her new life in Uganda, God reminded me of this story I had shared, in which becoming a special needs parent is likened to landing in Holland when you thought you were on a plane to Italy. As I read her story, it was mine. Different place. Different circumstances — but my story.

Allow me to share, as I replace “Uganda” with “special needs parenting”:

If I had to summarize in one word my first weeks and months [as a special needs parent], it would be contradiction. The physical environment of [special needs parenting] is one huge paradox: amazing, breathtaking beauty juxtaposed  against immense [hardship] and desolation. My life–especially my emotions–hung in the balance between absolutely loving my new life… and battling severe loneliness. Not a single person around me understood anything about my life, my culture, or my background. Their frame of reference was so different from mine that even the most detailed explanation hardly helped them understand or relate. Most of the people around me didn’t speak my language, nor did I speak theirs. This communication vacuum left me feeling isolated and forced to work much harder to build meaningful relationships

…During my early days here, I was learning so much…My horizons were being expanded in the most amazing ways; my perspectives were changing every day; and my faith was being challenged and stretched. All of this was so exciting to me. I didn’t want to admit that, in the midst of such a wonderful and invigorating experience, I sometimes felt tangible pangs of loneliness when I thought about how many miles away I was from the people I loved.

Even though I cried often…I didn’t want anyone to know that I sometimes longed for my familiar home while I reveled in the newness of a country so unlike anywhere I’d ever been. I didn’t want to tell friends and family that I could dance and sing and play with children all day long yet collapse in tears at night in the privacy of my…room. I could praise God with all my joyful heart and then later pour out my heart to Him with frustration and weeping when no one could hear.

The contradiction comes when I realize that all these experiences and emotions are real. The happiness that gave me chill bumps was as deep as my loneliness. My sense of certainty about being exactly where God wanted me was solid, but just as firm was the fact that I wondered at times what on earth I was doing here. The frustration that threatened to overtake me on some occasions was just as deep and true as the unbounded joy I felt at other times. I loved my new life; I truly loved it. But compared to the life I had been living, it was hard.

There were many moments when the only way I could keep going was to try my best not to look back but to look only forward, relying on God’s perfect plan. Like so many  other things, this wasn’t easy, but it was the key to conquering the mountains of difficulty that arose on the landscape of my life.

Despite the obstacles, I felt a surprising level of comfort living [as a special needs parent] most of the time. I felt I was born to be there, and in many ways, living there seemed more natural than living in my native country. I had the unexplainable feeling, a settled knowing, that I was where I was made to be. I knew deep in my soul that I was home. (Davis, 2011)

I have questioned God – “What about this desire? This calling? I thought you wanted us involved in missions.”

I kept hearing, you are.

“Yes, God – but foreign missions.”

I’ve waited for the answer. Thinking the silence meant to wait.

Today he answered. This is foreign.

This “land” is foreign. It is foreign to me, but this is different than an other “foreign” place. There are no “native” speakers or indigenous inhabitants. Practically every person that has ever “moved” here has not done so by choice. No, each one is foreign – often landing here quite suddenly and with little warning – and I get to be a missionary in this foreign land. This land where, though no one wants to live here, once you settle in, you find there is beauty in it.

Yes, I am a foreign missionary.

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And he said to them, “Go into all the world and proclaim the gospel to the whole creation.” ~ Mark 16:15

For “everyone who calls on the name of the Lord will be saved.” How then will they call on him in whom they have not believed? And how are they to believe in him of whom they have never heard? And how are they to hear without someone preaching? And how are they to preach unless they are sent? As it is written, “How beautiful are the feet of those who preach the good news!” ~ Romans 10:13-15

From everyone who has been given much, much will be demanded; and from the one who has been entrusted with much, much more will be asked. ~ Luke 12:48

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Davis, K. (2011). Kisses from Katie. (pp. 19-20). New York: Howard Books.

The Big Day

Today was the day we have been waiting for. After rescheduling and waiting and waiting. Hope finally had her swallow study.

Unfortunately, the study didn’t turn out as we had hoped. I’m trying to look at it positively. We haven’t gone backward. We actually have some more answers to her swallowing and breathing problems even if we didn’t see the progress I wanted to see.

I will endeavor to explain what we found out with non-medical terminology. From what I can decipher from the doctor’s handwriting and Google, it’s called oropharyngeal dysphagia. Basically, that just means she has a swallowing problem – which we already knew.

We were aware from her first swallow study back in May or June that she aspirates when she swallows – meaning that when she swallows, some food goes down her airway instead of her esophagus. What we have now learned is that in addition to that, much of what she swallows is also backing up into her nasal cavity. Almost nothing goes down her esophagus.

This explains her difficulty handling her own secretions and why we have to suction her so frequently.

She can have absolutely NOTHING by mouth. Not that she has been allowed to anyway, but even some of the things the Speech Therapist has used will have to be stopped for now. Aspiration puts her at high risk for pneumonia. We also don’t want to stress or damage the parts that are working properly.

We have a consult tomorrow with Pediatric Surgery to schedule a G-Tube placement. That basically means they will put a hole in the side of her stomach to insert her feeding tube rather than continuing to go down her nose. Continuing to put tubes down her nose and esophagus can potentially exacerbate the problem.

We will also be compressing her feeds – meaning she won’t be on a continuous feed anymore. Thankfully, that means one less thing she will be attached to all the time. She will only be hooked up to the feeding pump during feedings. As she gets bigger and we compress them more, it will free her up a little more…especially once she is fully weaned off of oxygen.

We do greatly appreciate the prayers that went up and continue to go up. I know I was praying through most of the test, but as I told our nurse when we left, God had other plans. I trust Him and look for the blessings in all of this.

Hope also underwent an ultrasound this past Tuesday for her hips. That was a great report! Her hips are NOT displaced as suspected, nor does she need any tendons snipped. The only thing found was that one leg is less developed than the other, but that has been apparent from day one just by looking at them. The orthopedist was quite pleased with those results. As for the prognosis, we will just have to let her grow and develop to find out just what her little legs can do. At her age, it is difficult to measure her ability since she cannot respond to commands yet. Right now, I’m believing she will walk one day. Of course, as our enthusiastic Physical Therapist will tell you, she WILL walk. We won’t accept can’t!

The praise in today’s outcome is that I am not crushed. Yes, I was looking forward to having a big cheering party in the radiology department if she had passed, but that’s okay. If I have learned anything in the last year, it’s not to get discouraged. God is still God. This is just a season, but even if nothing ever changed, I’d still be happy and blessed with this little girl.

Our other 2 princesses are joyfully spending a couple days with their grandparents, and I got to spend lots of time with Hope today…so I call it a good day.

I don’t get to talk about my other two blessings much, so I just wanted to share what my oldest said yesterday. “Mommy, when I grow up, and Joy and Hope…we can go walk in the forest (behind our house) and see deer….and I’ll hold Hope’s hand in case she gets scared.”

I can’t help but brag on this 3 year old, tender, sweetheart of a girl. Grace knows just how to melt my heart. I cannot begin to tell the joy it gives me to see the love the 2 oldest have for each other and for their little sister. I can’t wait to see the relationship that develops between these 3 special sisters. It will be a beautiful thing to watch.

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There is surely a future hope for you, and your hope will not be cut off. ~ Proverbs 23:18

As you know, we consider blessed those who have persevered. You have heard of Job’s perseverance and have seen what the Lord finally brought about.
The Lord is full of compassion and mercy. ~ James 5:11

Find rest, O my soul, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken. My salvation and my honor depend on God; he is my mighty rock, my refuge. Trust in him at all times, O people; pour out your hearts to him, for God is our refuge. ~ Psalm 62:5-8

For Your Viewing Pleasure

Just a quick post to share a few videos and show just how much our little Hope is improving.

Here she is laughing with her Early Intervention Coordinator with her nurse and I looking on joyfully.

Reaching for toys and such is something all of her therapists have been working on for several months, and just this past week, she finally got it. You can just see the determination on her face and the joy when she gets it and smiles up at her physical therapist. We were so excited!

Keep Hope in your prayers this week as she will have a swallow study on Wednesday to determine if she’s ready to handle food by mouth. If so, it will be a slow weaning process, but a big, exciting step nonetheless.

Mercies in Disguise

It has been 3 months since our last hospital stay – *deep sigh of relief*- and our little chunker is now up to a whopping 10 and a half pounds! Now that some of the clouds have lifted, so to speak, I can look back over the last months and see God’s hand at work.

I read a blog post last night that resonated with me (surprise, right? I’m always getting inspired by other people’s writing). Though she writes about God seeing them through Cancer, what she had to share was exactly what I’ve said over and over (or thought if I haven’t said it). She writes:

Not only did God provide for our physical needs, He also provided for our emotional needs. Before cancer invaded our lives, I’d look at people going through difficult situations and think, “Wow, they are so strong. I wonder how they’re doing it?” 

Now, insert Hope’s various medical issues instead of Cancer and you’re talking about us.

The funny thing is, we’re now the people others refer to when they say that.

I cannot begin to tell you how many times I’ve heard, “I don’t know how you do it. I could never do what you’re doing.” To which I think, “Neither can I.”

And I can’t.

It is not me. It is Christ in me. It is his strength in me.

The blogger goes on:

But as we walked through cancer, the following  verses became very real to me.

For we do not have a high priest who is unable to sympathize with our weaknesses, but One who has been tested in every way as we are, yet without sin. Therefore, let us approach the throne of grace with boldness, so that we may receive mercy and find grace to help us at the proper time. ~ Hebrews 4:15, 16

Prior to my husband’s diagnosis, I didn’t have that strength, nor did I need it, but God provided it at the proper time.

God provided for me at the proper time.

To every person who thinks they could never do what I have done, or endure what I have endured – you are right. YOU cannot.

But Jesus can.

He has. He will – at the proper time.

Believe me. One year ago, I could never have imagined where this journey would lead, but I am thankful for where I am. Where we are.

Don’t get me wrong. I have prayed, and prayed, and prayed for my child. The desire of my heart has been and is for her total healing, and it hurts that my child has had to suffer what she has. However, I would NOT give up what I have seen, heard and experienced of my God.

There were things I believed about God. Now I know them.

I believed He was my provider. Now I know He is.

I believed He was my comforter. Now I know He is.

I believed He was my healer. Now I know He is.

I have learned how weak I am AND just how strong He is.

I have learned just how small I am AND how big He is.

I have learned that with God, I can endure far more than I thought possible.

I have learned that the Lord has made me far more capable than I imagined. I have also learned that I still have a long way to go.

I am thankful that He chose me for this – that He is taking the time to refine me and build my character. That He sees something worth building.

As one of my current favorite songs – which has become my battle cry of sorts – says, “You hear each spoken need. Yet love us way too much to give us lesser things.”

I can truthfully say, just as my fellow blogger did, that while I wouldn’t wish any of this on my worst enemy, I wouldn’t trade the experience and the lessons I have learned for the world. I, too, feel like Job who after coming out of the storm of his life declared,

My ears had heard of you but now my eyes have seen you. Job 42:5

As one of my current favorite songs – which has become my battle cry of sorts – says, “You hear each spoken need. Yet love us way too much to give us lesser things.”

Thank you for hearing our spoken needs, but for knowing our deeper need. Our need to know you – not to just hear of you, but to see you.

Thank you Lord for the trials of this life. Thank you for your mercies in disguise.

Blog credit: http://www.thebettermom.com/2012/11/he-will-meet-you-in-the-storm/

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Here’s the song if you’d like to hear it. Blessings by Laura Story. One of these days, I’ll get around to singing it.