Help for Hope!

Help our AMAZING daughter get the medical help she needs!

Who can say no to this sweet face?! :)

Our Hope is now 15 months old! Many of you know her story, but for those who do not, here is a quick summary (you can read past posts for more in-depth information). She was born prematurely with Spina Bifida and hydrocephalus, and soon after developed a feeding intolerance and swallowing dysfunction. Her swallowing and feeding problems currently require her to have a trach, a feeding tube and oxygen. She is unable to take anything by mouth and, of course, she can’t audibly speak. She constantly aspirates her own secretions and, consequently, suffers from chronic lung infections and has to be suctioned out A LOT. She underwent 6 surgeries and many more testing procedures just in her first 7 months alone. Our sweet girl has come a long way (she rolled over on her own just this past weekend!), but she has a long way to go.

The cause of Hope’s airway, swallowing and feeding issues is undetermined, and we’ve exhausted our resources locally. Our doctors here have no answers and are mostly just treating symptoms and side-effects at this point. However, we now have an awesome opportunity! The internationally-renowned Pediatric Aerodigestive team at Cincinnati Children’s Hospital has accepted her case and already devised a collaborative plan of testing that will hopefully lead to some answers.

We so long to hear our little girl’s joyful laugh, but there are 600 miles between here and possible answers. Please consider donating to help Hope get the care she needs and deserves. We would be very grateful. Any additional funds will go towards future visits/expenses and an accessible van.

Feel free to join our Facebook group for updated information – Help for Hope.

Thank you and may the Lord bless you!

Click below to donate through Paypal

Rejoice in hope, be patient in tribulation, be constant in prayer. ~ Romans 12:12

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.

 

But You Don’t Homeschool Yet…

Check out my first post over at So You Call Yourself a Homeschooler!

Recently, I was sharing my news about becoming a contributing writer for this blog with a very close relative (whom I promised would remain nameless). I had just received my writing themes and was sharing my excitement about this new endeavor. To which he incredulously replied, “But you don’t homeschool yet.”

After I picked my jaw and my ego up off the floor, I sat quietly for a few minutes thinking about this statement. Stewing over it was more like it.

Then….an EPIPHANY!

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.

Life…as we know it.

I have tried on several occasions to write this post without success. However, just the other day, a dear friend suggested I do just this exact thing. She had no idea when she first suggested it that I had tried and failed several times before to share this information, but at her request, I am attempting this feat yet again.

I don’t know why I’ve been so unsuccessful in the past. Perhaps it felt selfish or self-serving. Perhaps I was afraid it would seem I was asking for pity – which I’m not. What I am asking for is understanding. What I am offering is a clearer picture perhaps than what I’ve given before.

Here’s this friend is understanding. This friend has tried perhaps more than any person outside of my immediate family to understand our situation. We talk often and she asks questions – lots of questions! She has and does try as much as is possible for someone NOT living in our home to understand everything, so when I said something in passing about something I was unable to do without another adult present, this friend was shocked that it had never occurred to her. It was a light bulb moment of “Whoa! I never thought about that.” She then told me that if she, who tries extremely hard to understand, didn’t realize this, then surely most other people really had no clue what our life is really like. Therefore, she thought it necessary that I inform the general public about life….as we know it.

.

.

So here goes.

Most of you know that Hope needs lots of care, but you might not know what that entails. So here, in the best way I know to explain it, is a rundown of the whys, whats and hows of life with Hope.

  • She cannot be left with anyone who is NOT trained in infant CPR with a trach and how to change a trach. Right now, this means my husband or I, a trained nurse, or if necessary, my mother-in-law (who has 39 years experience in Pediatrics, but even she has not had much experience dealing with trachs).
  • She has an oxygen concentrator, a compressor/humidifier, a suction machine, a pulse oximeter, and a feeding pump.
  • She needs trach care at least once a day. It requires 2 people.
  • She has breathing treatments and other meds twice a day.
  • Her clothes and bed linens have to be changed several times a day because she creates so much saliva/secretions.
  • Her feeding pump is turned on and off 12 times in a day and refilled multiple times. The bag is changed daily. Her G-tube is supposed to be rinsed in between every feeding.
  • She sleeps in our room with all of her equipment. Thankfully, at around 6 or 7 months we figured out that the oxygen tube would reach from another room, so we could put it in her room and no longer have our room 15 degrees hotter than the rest of the house. However, we still have her bright glowing Pulse Ox that alarms rather loudly at all hours, her feeding pump that has to be turned on and off at different time, her humidity which is somewhat loud, and her suction machine which is really loud.
  • When we aren’t sleeping, she stays in the dining room – crib and all. We don’t hide her off in a bedroom somewhere. She stays in those 2 places. She can’t be carried around because she’s hooked up to the 3 things mentioned before, plus the suction which must be close by.
  • Want to watch tv or a movie? Get used to reading subtitles because you can’t hear much unless you are on the other side of the room (which I rarely am).
  • I cannot take a shower unless there is another adult in the house because that is enough time for her to plug off and suffocate.
  • I cannot give my kids a bath unless there is another adult in the house because I need to be able to get to Hope if she needs me, yet I can’t leave my other kids in the tub.
  • I don’t feel comfortable doing the dishes unless another adult is in the house. I can’t be elbow deep in dirty dishes when she needs her trach suctioned (which she does frequently).
  • It’s difficult for me to cook at times, for the same reason. I can’t be covered in raw chicken if her trach needs to be suctioned.
  • You might have noticed that I’m online MORE when we don’t have a nurse. That’s because she needs suctioning so frequently, especially in the morning, that’s it’s easiest for me to sit close by. Yet, it’s difficult to hold her without someone else here. Why? Well…
  • That’s brings me to the next problem. My other children. If you have small children you know – the minute you get tied up or busy, the kids will do something crazy, so I can’t just sit and hold her when no one else is here. If I do, the screaming, hitting, biting, wall-coloring, pants wetting, etc. ensues. Sadly, if no one else is here, she spends most of the day in the bed.
  • Along with all of that, she has an hour of in-home therapy 5 days a week, plus a visit from her EI Coordinator every other week. Not to mention, all her appointments.
  • When we travel to said appointments, most of her equipment or a portable version of it goes with us, in addition to her diaper bag, “go” bag (has all emergency items – ambu bag, extra trach, etc.), stroller and carrier.
  • She can’t really go anywhere without 2 adults – 1 to drive and one to ride in back in case she needs to be suctioned. If I have to, I can take her right up the road to the pediatricians, but usually can’t make it without stopping in the neighborhood to suction her.
  • Then there’s the phone calls. Oh, the list of phone calls. Feeding supplies, medical equipment, appointments, Medicaid, medical bills, on and on and on. There is ALWAYS a phone call that needs to be made.
  • And that’s just the stuff I can think of…

Add to all of this that my husband works 50+ hours a week.

When I say, “I don’t have time,” I hope you understand that it’s not just a platitude.

When I say I’m tired…words cannot even express.

When I say I’m forgetful…well, just forgive me, please.

When I am stressed about not having a nurse – I hope you can see why.

But when I say that I don’t want to be pitied, I don’t.

Our life is different. Different than it was. Different than yours. Different. Forever different.

And it’s hard. Oh yes, it is hard.

BUT…

It’s blessed. Very blessed…and it won’t always be this hard.

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Weeping may last through the night, but joy comes with the morning. ~ Psalm 30:5

Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing. ~ James 1:2-4