Finding out your sister is disabled

Hi friends!  This summer was crazy and several of you have asked for a family and  "Abbey update."  First of all, I managed to develop two pre-ulcer spots in my stomach over the summer that caused me much grief!  After my first endoscopy, I had a blood pressure reaction and spent some time in the ER. Ryan was away with our youth group, and it was an extremely difficult month.  I made some major changes to my diet (no more soda...or regular coffee..or tomatoes), and started some medication that really helped.  I'm happy to say that as of two weeks ago, I am all healed up!  Thank you for your prayers and calls over the summer.  You have no idea how much I needed them.

In addition to that, we sold our house and are closing on that sale sometime next week.  What a whirlwind.  We were THRILLED to find a house in our town that is a short-sale, and has good accessibility for Abbey.  We are still waiting to hear back from the bank on that house, but will be in a transient state for at least a month.  All of our things are packed up in storage or at Ryan's parents, and we move our final things out this week.

Abbey is doing fantastic.  She did end up with pneumonia in September, but recovered well and is back to her sweet smile and disposition.  She continues to go to therapeutic riding and loves it.  School has been a welcome routine, and the teachers and staff there are amazing individuals.  She has made some good progress at school with the i-pad for speech, but still prefers to use sign language and gestures at home. This brings me to the topic for this post.

Our youngest son has just realized that Abbey doesn't talk, and at three and a half is very happy to do it for her.  For instance, the other morning he says to me, "Abbey would like a drink.....we want some chocolate milk."  The things that he says for her are so funny. If someone talks to Abbey directly, he promptly lets them know that she is disabled and can't talk. He makes an adorable moment out of something that was frequently awkward for me. He has become quite the interpreter! Occasionally I will catch him watching her intently...he will turn to me and say, "Abbey is disabled."  It's sinking in like it did with our older son and I know in the next few years the kinds of questions I will be asked.  But while he's still so young and innocent, this awareness provides many laughs and tender moments.

Yesterday the kids were in the living room while I was packing boxes and he came running in.  "MOMMY!  You bedda come quick!"  I asked him why and he describes in his adorable lisp how Abbey is "pretendin' to be the mommy and makin' a BIG MESS!"  I found her at the sink with a paper plate, plastic fork, and an empty yogurt  container she pulled out of recycling.  I was so proud of him for recognizing that she was getting into things she shouldn't, and how he came so quickly to get me.  The sweetest moments are when she is upset though.  He will come and tell me that Abbey is crying and why.The compassion and empathy he has for her are growing more every day.  It's amazing, when you think about it, that despite her lack of words, Abbey has grown to trust all of us to interpret what she needs, wants, and feels on a moment to moment basis.  Every day of her life will be spent leaning on the capable mind and voice of someone else to speak and act on her behalf.

I don't know about you, but there are times in my life when there just aren't words to describe what I'm feeling and my prayers feel like they are so empty.  It's in those times that I'm encouraged by Abbey to learn to trust the capable mind and voice of the Father God who is always acting on my behalf. Romans 8:26-27 says, "²⁶ In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. ²⁷ And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God."  She follows with enthusiasm, she trusts that we will meet her needs, she sleeps like a baby without worry or fear and yet has no voice at all.   I want to learn to live like that.  You can learn to live like that.    Knowing that the Spirit sees our hearts, with compassion and empathy, and goes to the Father to intercede for us can give us the strength we need to learn how to trust that the Spirit of God sees our weakness and knows how to interpret what we can't find the words to say.
 

Funeral Rainbows...no accident!

In June of 2000, the day before Ryan and I were married, my Aunt Alona passed away from a brain tumor.  I loved her so much, and she was always quick to give a hug and a smile.  Occasionally she would come to visit with my mom and only I would be home.  I would do my best sign language and finger -spelling to have a nice visit.  You see, my aunt became deaf at the age of five from a case of the mumps.  My mom tells a sad story of watching her put her old records on a record player and just watching them spin around, but hearing nothing.  She was unexpectedly disabled. 

There are many things I could say about my aunt, but since this is the anniversary of going to the Lord, I wanted to share with you a “phenomenon” that happened on the day of her funeral.  On that day, our family saw a gigantic rainbow stretched across the sky.  Many people might think of it as a “sign” from their loved one.  But the Bible is very clear about what a rainbow is.  It was placed in the sky for the very first time by God himself as a sign of his promise to Noah.  Genesis 9:12-13 says, “ And God said, “This is the sign of the covenant I am making between me and you and every living creature with you, a covenant for all generations to come:  I have set my rainbow in the clouds, and it will be the sign of the covenant between me and the earth.”

So a rainbow is a sign…from the very creator of the universe.  

So, I think it’s no coincidence, that on the day of my aunt’s funeral, the Lord saw fit to show an extravagant diffusion of light across the sky.  A sweet reminder to our family, that for thousands of years, he has kept his promises.   I believe God has a special place in his heart for the disabled.  In the book of Luke there is a parable about the kingdom of heaven where a rich man invites all the “upper-class” of his time to a lavish banquet, but no one can seem to make the time to come.  He tells his servant to go into the streets and bring the crippled, the lame, the blind, and the poor so that his house may be full.  I’m overwhelmed at this analogy to the kingdom of heaven. Heaven will be FULL of these beautiful people! And they will be completely healed.  How special that the first voice my aunt heard since the age of five was Jesus?  The first choir, a heavenly host? 

If one rainbow isn’t enough to convince you that this was a sign for us…how about two?  Last June, Ryan and I traveled to New Brunswick for the funeral of a friend’s daughter.  Little Emma lived with severe disabilities and a seizure disorder for seven years when the Lord decided to bring her to his banquet table.  In June of 2013, just over a year ago, we attended that funeral.  We drove the hour there in almost complete silence. Parents who share this road of disability have a special connection to each other.  We are tied at the soul to people we’ve never even met in person.  We went because we HAD to celebrate Emma, and we NEEDED to hug her mom Alison.  We felt so grateful that she was with God in her new body, and so sad for her family who already desperately missed her. As we were getting ready to leave the funeral, we walked outside only to see an enormous rainbow stretched across the parking lot.  Its peak was literally over our heads. I was speechless….there it was again.  I felt like God himself came down and kissed me on the forehead.  Reminding me that he’s still got the whole world in His hands.  That little Emma was welcomed into his presence with great rejoicing because she was uniquely created to bring him glory.  That her mind and body were no longer captive to this broken world. That He keeps his promises…

I don’t know what you are going through today.  I don’t know what obstacles you’re facing or trials you are enduring.  But as the anniversary of these two are in June, I can’t help but think of those rainbows and be reminded that God is faithful.  Be encouraged that He cares about our lives and our losses, and that he keeps his promises.   If you don’t have a relationship with him beyond an occasional prayer or check in the offering plate, I strongly urge you to build a relationship with the God of the universe who also uniquely created you to bring him glory.  He loves you so much! Perhaps he is drawing you in today?

Jeremiah 31:3 “The Lord appeared to us in the past, saying: ‘I have loved you with an everlasting love; I have drawn you with unfailing kindness.’ ”

Psalm 145:13 “Your kingdom is an everlasting kingdom, and your dominion endures through all generations. The Lord is trustworthy in all he promises and faithful in all he does.”

Starting Over...Again

Monday nights are therapeutic riding lessons for Abbey.   We drive about forty five minutes  to get to an amazing facility that offers equine therapy for disabled children and adults.  Abbey is in one of her favorite places on earth.  Her instructor Kathy has been with her since the first lesson.  We still laugh about how she  kicked and screamed and didn't want to get on the horse. We decided we were both okay with just throwing her up there and start the horse walking.  Within seconds she was squealing with delight.  Smiling, waiving...my happy girl.  It's been three years since Kathy lugged her up onto a saddle.  She has made great strides and continues to surprise us with how much she is capable of and aware of despite being a non-verbal child. But, she has this bad habit of throwing the reins down to be funny.  Unfortunately, on a horse, this is not just a bad habit but a very dangerous one.

Kathy has been working hard to get her to stop this and to provide both adequate stimulation to keep her attentive, and consequences to eliminate the behavior.  She never gives up on her though.  They stop the horse, have a talk, and start again.  They do this over and over if they have to. Abbey is learning that if she drops the reigns, the fun stops.  If she holds on, wonderful activities and challenges are waiting for her. The goal is to keep her safe, and to grow her into a more mature rider.

I couldn't get this out of my mind tonight. How many of us are just like Abbey with those reigns?  We have habits and hang-ups that could be passed off as just "bad," but they are really so dangerous.  We might even think they're funny.  But they aren't funny. I'm sure the point isn't lost on you...you know where I'm going with this.

God isn't just some out there in the universe, all-knowing, but un-involved type of creator. We're his kids!  He's very invested in how well we're doing.  He wants nothing more than to give us wonderful activities and challenges that can shape us into more mature believers.  But it requires a tight hold and a close relationship.  There are no amount of routines and rituals that can replace a genuine love relationship. You can't just coast through life's lessons and drop the reigns whenever you feel like it.  He has so much more in store for us if we hold tight, learn from the best instructor, and keep walking.  If you don't have that kind of love relationship with Him, then I encourage you to seek out a local church, pastor, or friend that can help you through figuring that out.

I'll end with a prayer that came to mind while I was driving home tonight.  I hope it encourages you.


Lord,  help me.  Help me not to make light of habits that keep me from enjoying the ride we're on together.  Help me to hold onto you and to be safe in your care.  Help me not to let go of you, or to buy into the lie that sin isn't that big of a deal, especially in a world that thinks sin is funny. Thank you for stopping me in my tracks, for having a talk with me, and for letting me start over....again.

The List

I’m a horrible blogger.  I should be fired.  Can you fire yourself?  Anyway, it’s been too long!   I was thinking this morning as I was scheduling appointments that I might not make it through the month of June.  The list just keeps getting longer and longer.  I’m an appointment binger.  I schedule nothing for a couple of months and pretend that everything is completely fine and normal. Then it happens.. I get a sticky note home from school and suddenly there is a frenzy of phone calls to insurance and doctor’s offices. I’ve been on the phone and computer all morning. 

Of course it never goes as planned.  There is an extra slip of paper needed, the doctor is only here while you are on vacation, what you thought was no big deal has morphed into a really big deal, someone didn’t get your e-mail, Abbey’s back-pack ate your hand written note since the school’s e-mail provider is apparently is not speaking to yours, and the list goes on and on.  There must be at least a hundred different obstacles to keeping it all together.   I could, quite literally, go insane sometimes. Don’t think for a second that it hasn’t crossed my mind to just take that file of paperwork, the phone, and my insurance card and toss them all into the wood stove.  It has!   If it weren’t so lovely and sunny this morning I might just go back to bed…for a week!

I’m sure many of you can relate even if you don’t have a child with disabilities.  Plenty of people have a job, or difficult family relationships, a stack of bills, or personal struggles that make you just want to walk away and pretend there’s nothing going on. Things in your life that are easier to just ignore then tackle.  But as a popular song on the radio says, “we were made to be courageous.”  Abbey’s needs don’t care if I’m exhausted, emotionally drained, or fighting over insurance.  They need to be met now.  Today if possible!  

So right now, in this moment, I’m clinging to Joshua 1:9

 

“Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.”

I hope that verse encourages you too.  If the Lord goes with us, then there is no need to feel dismayed and every reason to feel empowered with strength and courage. I can tackle the list, and so can you!

Covered in White

All this snow is so crazy!  When I was growing up, they called my class the "blizzard babies!" I'm wondering how many September birthdays we'll have in church??? LOL

Before I launch my thoughts, I wanted to let you know that Abbey's potty training is going very slowly.  She has had three successes since Monday, so that's great.  I've been told by many other parents of children with special needs that it takes TIME.  So, with God's help, I will exercise my patience muscle.  I will surrender my will and make the most of it.  But I so hope you will keep praying for her.  We have such a big God and so many of you who love Abbey and pray for her.  I really feel that our petitions make a difference, and so while it seems like such a "small" thing, I know even the tiniest of details matter to Him.

Anyway, we are leaving with our youth group for their winter retreat later today.  We will load them all up in the bus and travel to New Hampshire for our getaway.  It's there that many of our students will encounter Christ in a whole new way this weekend.  One of the most beautiful things about working with these teenagers is their openness and spiritual transparency.  You would not believe the depth of spiritual conversation that can happen with a fifteen year old.  They amaze me. Truly.

Ryan has been working hard for over a month to write his lessons, and to share God's word with them. We have a weekend FULL of fun, and some amazing Bible studies ahead of us. This weather reminds me of what will happen this weekend. Ryan will quickly shovel through the fluffy snow on the surface, and start working on the ice that's underneath.  At this very minute he has been working for almost  two hours just to get us out of the driveway!  This is NOTHING compared to the work that God does to try and remove the layers we have built up against him.  Excuses, sin, laziness, desire, a bad "church experience", or intellectual questions about faith pile up on each other and try to separate us from God.  Satan's number one goal, is to make sure that the ice is so thick between us and God that nothing can get through. But our God says in Job 38:22 that He is the one who keeps the storehouses of snow and hail.  They obey his very word.  He has power over the ice.

 The best part of being involved in the youth ministry is when you get to see a kid realize how great God's love is for them.  When they recognize that Christ's work on the cross covers them like a blanket of white snow...wow.  It's humbling to watch, it's exciting to be a part of it.So, looking out my window and seeing every inch of earth and most of my house covered in snow reminds me that he did the same for me.  With a mighty wave of his arms, he cast a blanket of forgiveness over my life. I'm so grateful.  So very grateful.

Isaiah 1:18 “Come now, and let us reason together,”
Says the Lord,
“Though your sins are as scarlet,
They will be as white as snow;
Though they are red like crimson,
They will be like wool."

Potty Matters

So, we are embarking on a new mission this February…toilet training.  If you could see my face as I type this, you would see mix of fear, dread, and a tiny glimmer of hope.  We have tried several times throughout the years to help Abbey toilet train, but it has been very discouraging for her (and for us) and not remotely successful. But, it’s been a few years and since she’s growing and quickly developing into a young lady, we felt it was time to try again.  I’m writing to ask for your prayers…this would make a huge difference in our lives, and in Abbey’s life, for her to gain a level of independence in this area.  She is getting so big, and it’s hard to find places to change her diaper that are private and comfortable.  With puberty breathing down my neck, I feel anxious to see her win this battle. It’s not only important for comfort reasons, but it can quickly become a health concern in the future.  For the next two weeks, she will wear underwear beneath her diaper and at school and home will be put on the toilet in regular intervals.  After the two weeks, the school will do an “evaluation” of sorts to see how she is doing it and what we may need to do to move forward, or if she is a candidate for being toilet trained at all. Will you pray with us for her?  

Please pray that her body and her brain can communicate, and that she would understand the urge and need to “go.”

Please pray for her ability to communicate her needs.

Please, please pray for success!