Confidence....

Confidence is what I am feeling staring Mithadeline's biggest surgical procedure yet in the face. She seems confident also. The doctor told me today that the better we are able to put our game-face on and not freak out in the face of this scary external fixator, the more confidence Mithadeline will have in adjusting to it herself. I've seen pictures of other fixators and showed Mithadeline a picture one today. I want her to have an idea of what she is going to wake up to in the hopes that she will not be as surprised by it.

A synonym for confident is secure. How can I feel secure in or about something in which I have never experienced? I have a peace about this upcoming prodecure, when some parts of me say I should or could really be freaking out.

Proverbs 3:26 says,

For the Lord shall be your confidence, firm and strong, and shall keep your foot from being caught [in a trap or some hidden danger].

I have many occasion to get caught in a trap in this case. I could be worried about the uknown. I could be fearful of the pain Mithadeline will feel. I could be anxious about being away from home for a few days. I could be scared of the risks of the procedure for Mithadeline.

But instead I sit confident, secure, certain. Certain of the path the Lord is guiding us on. I am choosing to rid my mind of anxious or worrisome thoughts, replacing them with a firm and strong confidence in the Lord.

Promises...

I have not written in a while; partly due to a crazy schedule, and partly due to the fact that life has just been hard the last few weeks.

But as I reflect on the last few weeks, I am reminded of God’s steadfastness and protection.

Mithadeline had a slight cough and some congestion a few weeks ago. So did I. She seemed to have excess mucus making her burps or coughs sound like she was going to lose her lunch, but had been able to keep it down. She went for a routine cast change on the following Monday morning. Upon leaving the hospital and driving home, she seemed to have this same reaction, coughing up some phlegm. We did not think much of it. When she came home she had a snack of pretzels and water. She promptly threw this up. This went on for the next 7ish hours. We would give her tummy about an hour to recuperate and then try something small again. We tried pedialyte, water, pretzels, bread, in small amounts over this time frame and everything came back up, with a whole lot of phlegm. It was not fun. Mithadeline seemed weak from not eating and just miserable.

Here is where my mind started to go whacky. I knew she had a surgical procedure coming up in 10 days. She needed to be well enough for that. If this cough/phlegm issue developed into a full-fledged cold we would be in jeopardy of missing that surgical appointment. I started to worry and get anxious. I wanted her to stop throwing up and be able to keep food down so she would feel better. I was worried about not having a doctor to take her to if indeed that was needed. I was worried she would become so ill, and she would miss that appointment 10 days from now. 

I know this truth. Philippians 4:6-7 says, “Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.” But living this out in this moment had really not occurred to me. I was much better off on my own, in my little corner, worrying my little heart out. 

Unfortunately, worry overtakes my emotions and I can’t think of anything else. So we went through the day, emptying buckets…..and finally Scott came home. I ran out for some pedialyte and we had dinner. Mithadeline stayed on the couch, resting. I decided I needed a few moments alone….so I ran an errand to Jo-ann Fabrics. I was almost there when Scott called to tell me that Mithadeline had thrown up one more time. I was ready to throw my hands up in the air. And realized in that moment, I had not invited God into the situation in my soul. I stopped before going into the store…..and prayed, in earnest; asking God to please take this illness away from Mithadeline and have her be well in time for surgery. This seemed like a big request, but He is a big God. I was feeling like I did not have any choice but to believe that He would take it away. 

I sat for a moment in silence, and then completed my errand. When I got home, Mithadeline was asking for chocolate milk, no begging for it. We know a thing or two about stomach bugs…and decided putting her to bed hungry for chocolate milk was better than giving in and seeing that chocolate milk again soon. This was a good sign though, no more throw-ups and she was hungry. I did remember the prayer I prayed, and was thankful for this first answer. 

So the next morning, she was well, ate plain toast and water and then a snack of pretzels. Had rice for lunch with some juice and then was eating normal for the afternoon and evening. The bug seemed to have passed, but the cough was hanging on. Not sure if it was because she never had a cold with this much mucus or what, but she was trying to hide the coughs instead of using them to get the mucus up. She also might have been afraid about more than just coughing when she had that urge, like maybe throwing up again. I was encouraging her to cough it up though. She was not happy with me. I would ask her to cough when I heard the gurgling in her voice….she would just turn her head away from me. I was sure she was going to get pneumonia. I had to recall the prayer I prayed just 2 days ago. We now had about 7 days until surgery. I continued to encourage the deep coughs….she obliged me sometimes, but most of the time she ignored me. It was very frustrating. 

The rest of the week was horrible, some days I was able to cling to the idea that God had heard my plea and everything was going to be ok. And some days, I worried myself sick. 

Turns out, she was well enough for the surgery and everything went well. She had tendon release on both feet and they now sit in a position like ours. It is exciting to be one step closer to completion of casts. She has about 6 more weeks!

I wrote this as a reminder, for anyone reading and for myself, that God does answer prayer. Sometimes it is immediate and sometimes it is not. But in the time in between, worry and anxiety should not fill our souls, it is dangerous.

1 Peter 5:7 says this: Cast all your anxiety on him because he cares for you.

 

Psalm 55:22 says this: Cast your cares on the LORD and he will sustain you; he will never let the righteous fall.

I can say this is easier said than done and in the midst of a troubling situation, it can be hard to think and believe these things….but God really does care about big and small things. I need a reminder to focus on little things, one step at a time, rather than a huge picture in front of me, knowing God promises to walk along the path with me.

Overwhelmed...

Mithadeline got new casts today. It was a tough morning. Hard to believe or understand that she could come to get used to the removal of the old cast and application of the new one. Her spirits are high now that we are home and she is playing with the boys.

We are in for an unusual week. And I had forgotten that the boys' soccer practices start this week. I am overwhelmed and awed by the kindness of our friends and church family. We are being well taken care of and it humbles me. So many have offered  help this week and it seems difficult to accept.

Why is that? Why when others offer help, is it difficult to accept? Is asking or needing help a sign of weakness? Asking for help or accepting help makes us vulnerable and gives an uneasy feeling. But it is precisely these moments that draw us closer to each other and aid in building relationships.

I am so grateful for this community we are a part of; and these authentic relationships at work, caring for the needs of others. Oh, that we would be in a place to offer our services to others as well. This is the calling of the church, to care for the needs of others, in the same way that Jesus and his disciples found themselves doing. Giving selflessly.....for the Glory of God, not for human satisfaction or recognition.

To God be the Glory!

Holy...

One of my favorite songs is a song by Addison Road, What do I know of Holy. The first time I listened to it on the radio, I fell in love with it. But then I started pondering the lyrics and what they mean. 

“What do I know of you, who spoke me into motion?” 

I know a lot about God. I have read the stories over and over and heard teachings from the word and lived through brokenness and hard times emotionally. Of course I know who God is. But there was something more.  

The song lyrics go on like this:

“I made you promises a thousand times, I try to hear from heaven, but I talked the whole time. I think I made you too small. I never feared you at all. No. If you touched my face would I know you? Looked into my eyes could I behold you? I guess I thought that I had figured you out. I knew all the stories and I learned to talk about how you were mighty to save. Those were only empty words on a page.”

I have witnessed this love running after me more than I have been running towards it. I believe that we are put into positions in life to only be brought closer to the love of the Lord. I have some times from my past, times that I thought I was in fear of the Lord and that He was working in my life. I think I was just standing on the edge. If God had reached out and touched my face then, would I have recognized it? Perhaps I can even say that from last week…..I was so obsessed with my own selfish desires that I didn’t recognize Him right in front of me. There are so many times that I am so inward focused that I lose sight of the bigger picture. The one in which God is working in my life. Finding and naming the joys in life help to bring me out of that and recognizing His hand in so many aspects of feeling cared for and loved by so many.

Over the last 3 years the Lord has really been working on my heart, plunging me into the ocean of His love….preparing me for the here and now. I could have said the same thing 1 year ago. I love looking back and seeing His divine hand in my life. How He directed my path so purposefully. Right from the weeks of summer camp in Ocean City to the path He led me on to eventually meet Scott.

And right where I sit now at my desk in Souderton, PA....I am feeling particularly blessed in the outpouring of love and support from our family and our church family during these last few weeks and in the next few weeks to come. To see people rallying around us, to help us out and make sure that each of us, even the children, are well cared for is so awesome. And I know that God’s hand is in it all. He cares for all of the details, even the little things.

I recognized today that a lot of my mood has been challenged by the situation we find ourselves in. It is a choice to make it a good day or self-pitying day. I think the challenges Mithadeline is facing over the next year are so large that it has been daunting. She cannot even see the big picture like I can and she is feeling overwhelmed with it all. It shows in her mood. And my mood is affected by this also (we all are).

Today I was determined to break free of the rain cloud hanging around here. Late this morning, Elias was reading a book on the couch. Mithadeline was straining from the floor to see what he was doing. So I asked her if she wanted to sit up on the couch. Of course she did, so I motioned for her to move there. (She has not attempted to get on the couch on her own since before the casting began.) She buckled down with all her might and she got herself up on the couch to sit next to Elias. We erupted in cheers and high fives. That familiar smile, with a hint of a tear running down her cheek…it was a moment that took my breath away. We ARE able to conquer things that look daunting….and when we do there is much to celebrate.

This was a big boost to the morale around here. Praying our spirits can stay lifted.

The song goes on to say,

“Then I caught a glimpse of who you might be, the slightest hint of you brought me down to my knees….”.

Here is where the song makes sense. I have seen glimpses of the God who gave life its name. The glimpses come in the form of hands making and bringing us meals or phone calls/text messages/emails of encouragement. People working on our behalf to find childcare for our children during doctor visits, seeing Mithadeline push through with determination to reach an insurmountable goal and those very tiny moments where I can look to this Mighty God and praise Him for all He has done and continues to do in our lives. I fall to my knees, humbled by the love of a God who cares so much.

“All creation knows your name, on earth and heaven above, what do I know of this love?”

I am finding I know more about this love and about holy than I ever could have imagined.

Easy...

This road we travel is not always easy. I know the words I have written here so far may seem amazing. They are just words, the story of how one little girl has changed our lives, and in turn how we are helping to change her life. And when I read back, it seems storybook-like, easy. I have to say this has been one of the hardest weeks so far. There is a lot to adjust to when someone whom you care for has two full-leg casts. It hits me deep in. I am torn. There is a wall. Part of me likes the wall I’ve put up, the one in which I am using to protect myself. I know we have to hand this little girl back to her loving parents at the end of this journey. I know how hard that is going to be, we’ve done it before. She is calling me mommy….and then I have to give her away? We will see her in brokenness and help her heal….and then say good-bye. That is why I have the wall. But the wall is getting in the way this week….and I know I have to tear it down in order to keep on going. I keep hitting that wall, and each time it hurts a little more. Tears are flowing now as I type this. The wall is keeping me from full on love and care…..and the saddest part is, I like the security of that wall. But it isn’t good for me or Mithadeline or the others in this wonderful family. 

Then I come across words so beautifully written, as if they were written exactly for me, exactly in this moment. Ann Voskamp has a wonderful way with words. She writes these things (I read them on an email update called A Holy Experience found here):

“What if plans are better as prayers and what if everything is supposed to happen this way because His Sovereign Hand can make any happening into good?

And what if the harvest of our lives is not in how we earn our bread and butter, but only if we make our lives into bread to give away?

You don’t always end up giving because you love.

Sometimes you end up loving because you give.

How the dying and the giving your life away is always right when a life lights with wings.

Now is always the perfect time to die to self and be broken and given.

And it’s right there out the window.” (Ann Voskamp)

For me, it is this wall I have erected, letting go of fears, dying to my selfish ways, needing to trust that the Lord will hold us up when all is said and done. I don’t need a wall, if I have Jesus. I need not worry about how much tougher things might be in 3 months….but I do need to focus on the now and how I can lean in on the everlasting arms of my friend Jesus, who is asking begging me to be carried by him through all of this. 

Sometimes you end up loving because you give.

First casts...

We spent time waiting for the first casting appt to come by splashing in the pool a lot, as Mithadeline will lose this option once the casts are put on. We also went camping and sent our oldest daughter to a week of summer camp. We are praying she has an amazing time! 

So on July 2, we headed to Shriners to get the first set of casts. The waiting was long, but fun. Mithadeline did a fair share of crying as the casts were put on. They were hot and she was not a fan of any of it. She took it easy for most of the rest of the day, even smiling and getting around on the floor quite a bit after a good dose of Tylenol with codeine. She had a rough first night of sleeping. Day 2 of casts is going well. She is proving she has much determination. She even came down the steps on her own today! We’ve had to adapt how to sit at the table and how to go potty, but we continue to be astounded by this little light of joy. She radiates joy, even with full leg casts! 

playing while waiting for the Dr. 

coloring to pass the time!

 

The week has not been all peaches and cream. She has some sore spots, mostly from where the top of the cast is digging into her leg….but she is a trooper! She enjoys coloring, playing ball, playing with her baby dolls and listening to music!

casts and a thumbs up!

First appt. at Shriners...

Our first appt at Shriners was set for June 18. This seemed like a long time to wait, but we spent the time well. We had been swimming a lot and enjoying having fun outdoors. Leading up the appointment we had finally been given the name of the condition affecting the joints in Mithadeline’s hips, legs and feet. Arthrogryposis. I had no idea how to pronounce it and had no clue what it meant. But soon I was on a search for lots of information. I (we) learned a lot. Arthrogryposis is a condition in which the patient experiences non-progressive contractures that affect more than one part of the body. I had to look up what non-progressive meant. So basically the contractures of her joints will not worsen as she ages. A majority of children affected with Arthrogryposis are affected on all 4 limbs. Mithadeline is affected in her hips, legs and feet. She does not have full flexion on her hips. Her right leg is stuck in an extended form, with her knee cap rotated to the outside of her leg. Her left leg is stuck or flexed in a bent position. She also has severe club feet. If you are as curious as I was, you can go here to find more information about Arthrogryposis.

She is fortunate to be seeing Dr. Van Bosse at Shriners, one of the leading orthopedic surgeons in the field of Arthrogryposis today. His suggested plan of action is to straighten her feet with serial casting, straighten out the bent leg and then work on her hips so she can stand straight up. Seems intense, but we are looking forward to her surprising us with her determination along the way! We will be continuing these treatments over the course of the next year. The plan is for her to walk with some form of assistance. We asked if she would be able to walk unassisted. Dr. VB couldn’t speculate, but did say the kids he sees with Athrogryposis surprise him all the time. This little one has so much determination. We are excited to see the outcome!

Making adjustments...

Adjusting to life with 4 children has had its challenges. Lucky for us, Mithadeline, despite her limitations, is very independent. She goes up and down stairs by herself and prefers to walk on her hands and drag her legs/feet than to sit in a stroller or be carried. She can get herself up to the table and gets dressed by herself. She needs help getting on the potty. Finally after week 3, I decided to put a chair in the bathroom so she could sit on it to brush her teeth and wash her hands. We are amazed at the abilities she has. She is very determined. We know she will continue to amaze and astonish us. 

I guess, unbeknownst to us, our four year old previously ruled the roost around here (ha ha). He has been having the hardest time adjusting to a new person in the house. The two of them have tender loving moments and then some not so classy moments. They team up occasionally to get the rest of us and prove that even though they are small, they matter also! Elias has displayed some bullying behavior. I was concerned about this, feeling like my son was a monster. But then realized that he was having some of the same issues I was having in my mind. The difference being, I am a mature adult and know what to do with these sorts of feelings. Four year olds don’t. He acts on impulse. So we are learning to deal with this, some days are better than others. This is where loving doesn’t  look so lovely all the time. 

This is the 4 of them after having fun in the sprinkler!

A wise person gave me some perspective on this. In a year from now, Elias will have learned many life lessons from having a temporary sibling, that if we never had any other children he would not have had the opportunity to learn. I needed this new perspective, especially for days when I am counting to ten over and over and over again…breathe…breathe…..

Answer to prayer...

The days following Mithadeline's arrival were a direct answer to prayer. Isaiah’s anxiety about hosting had completely melted away. Those first few days, Mithadeline and Isaiah were inseparable. Holding hands and playing together. We could not have asked for more. We knew we would have other challenges and that this situation would not be easy as we moved forward. But that is just the amazing part, we are not in this alone. We have a mighty God on our side, rooting for us and allowing us to draw strength and patience and love from Him. After all, He is the author of all things.

Knowing the extremeness of her condition, which at this point we still did not have a name for, we knew there would be many trips to Shriners and a change in all of our schedules. But seeing her picture and getting familiar with her condition did not waiver us in taking her in. This road will not be easy. I have had some specific times of feeling discouraged and unworthy of this experience. There will be many along our path who do not understand how we can do this, with everything else we do. My sister had some good words of encouragement for me:

 

“Following God is doing things that don’t make sense. Are you busy? Do you have enough things on your plate? Could this hamper your summer plans? yes, yes and yes.....but as we know - most importantly, if God has laid something on your heart - none of the other stuff matters. God will supernaturally give you what you need to make it though each day.....not just surviving but thriving.”

Fear creeps in...

The next week was a bit of a blur. Mithadeline had arrived in the US by now and we still did not have much info about how and when we would be receiving her. We had to fill out paperwork and get references.  And then basically wait. This was hard even though I never voiced my own fears and anxiety. I knew we were doing the right thing, but fears creep in anyway. My biggest concern was what if for some reason we do not get her; we had prepared our hearts and had started preparing our home, but until we had picked her up, it still felt up in the air. We had a whole week of this! We took this time to download apps on our iPods to brush up on our Kreyol. All we really remembered were some basics, one of them being "chita la" which basically means sit down (there)!

So still not knowing many details, the kids and I went to Milton for a few days. We packed up school and work and hung out in Milton. While in Milton, arrangements were made to meet Vanessa on Friday May 11 in Hagerstown, MD. This would be a 3 hour drive from Milton, with 3 kids. Needless to say we were all showing a bit of anxiety. While we were preparing to drive and meet Mithadeline, Scott was at home securing a mattress and getting it set up in Sarah’s room. 

Waiting at the meeting spot was torturous. We were all a little tense, not knowing what to expect. I think I hid my anxiety well. Others of us did not. Finally the van arrived. When Vanessa opened the door and a smiley, happy little girl reached her arms out to me, all the anxiety melted away. I carried her into the Starbucks bathroom to go potty and then we got the rundown from Vanessa and were on our way. We stopped for some chicken nuggets and headed out for the 3 hour ride back to Souderton!!

Meet Mithadeline. A smile that lights up the room!

More information...

So we did get more information. The details were that she was 6. She had a pretty serious medical condition, unknown at the time. She doesn't walk and will likely be here a year. What?!?!

Digesting information = information overload. Still sensing this desire in our hearts, we moved forward. Doubts start to creep in fast. The evil one seeks to destroy the good things we try and do in our lives and we could feel that. We started questioning, was/is this the right decision? I think by day two we were feeling the effects of that pretty hard. Scott and I were both very thankful for the positive affirmation of our friends and family and the immediate support we felt. We needed a mattress, bedding, and clothes and these things were provided in multiples. I was also particularly thankful for the sermon by our pastor that following Sunday; leading me to believe that we really were on the right path, even though it seemed so crazy.

How could we make a decision to help someone when we did not know all of the variables? Doesn’t that sound absolutely crazy? But waiting for all of the details and knowing everything before saying yes also seems a bit absurd. We took a step of faith. Doing hard things requires faith. So we could have determined that this would just be too hard once we were given all of the details. But even after digesting all of the details, we still felt led in this direction. Doing radical things for Jesus and loving like Jesus loved does look crazy, hence the title of this blog! That is also one of the crazier things. I created this blog almost a year ago....but the title is so fitting for documenting these current days of our lives.

Normal life??!?

As if normal life (what's normal anyway?) in this family of 5 wasn’t loving crazy enough, we've decided to add a 6th person to our family temporarily. Here is the story on how that came to be.

She (Mithadeline) is a six year old from Haiti needing surgery at Shriners in Philadelphia. That is all we knew when we first found out about her need for a host family on Facebook. See, we had hosted other Haitian girls through this organization in the past, so as far as hosting went, we were good to go. So we sent an email and requested more information from Vanessa at Angel Missions Haiti. And then we called our brood together on the couch for a family meeting; only the youngest did not have a clue what was going on. Our older two remembered hosting in the past and had some really insightful things to add to our discussion! One of our children was having second thoughts about the idea to host again; remembering a few key things from before, the amount of work it would be for me and knowing about how attached we would get and then have to send her home. Our children were able to articulate these really hard things to us.

We prayed about it together and decided to table the discussion for later, hoping to get some more info and a picture.

After supper we got together again with more information and decided even with one no out of 5, we felt this was something we should do. We have many blessings and lots of love to share and just felt that sense that we should go forward with this. Looking back now, I think we did not realize the gravity of the situation or the immense amount of doctor and hospital visits we would be committing to. But we felt the need to share the love that was so freely given to us with another who desperately needed it, knowing we were not in this alone.

Starting Over....

I started this blog a few months ago wanting to document living, loving like crazy. Then I got caught up in life and felt I really had no place in the blogging world. I was also feeling like I did not have time to blog. Well, now I have even less time to blog, but feel like we have begun an adventure worth documenting! This blog will tell the story of how we welcomed one sweet little girl from Haiti into our lives temporarily. And it will be proof that love stretches and grows us.