It's been a Year

I was shocked when I sat down and opened up my blog and realized it's been almost a solid year since I last wrote anything. At the gentle coaxing of my sweet husband and the previous year's reminder of our Hospice Chaplain to be writing everything down, I finally am sitting to write. I have honestly been afraid to write for about a year now. So much had been going on in our home that I didn't know where to begin and I also wasn't allowed to write most of what I wanted to anyway...at least not publicly. I don't know honestly how to start. So much is muddled around in my head. So much grief. So much joy. So much loss and yet so much gain.
Since the unexpected death of Ariel, our move, moving several family members, graduations and weddings, I have been unable to really stop and think of anything other than "get it done" "check it off" plow ahead." Well, now that it's all done and the kid's school is almost out, I find myself in a terrifying place of what to do. Who am I? I have either babysat, worked in Day Care or taught Swimming and then Foster Care since Ben was 11 months old. I have always had other people's kids plus my own to care for. I have often had to do several of those at once to help make ends meet and pay the bills. For the first time in our married life, I don't have to and the one thing Luke and I had chosen to do together--Foster Care has abruptly ended.
Tonight the kids had their last night of Art Therapy at Circle of Life Hospice. The weekly trips to and from therapy have been both a welcome relief and exhausting. We've had one child refuse to participate that we thought would do well and another child that we anticipated to fight therapy, thrive. Tonight said child begged to continue and we are at least going to visit the Therapist's other office to say "hello." This time has been exactly what our kids needed and we are so thankful that Hospice provided this for them is such a safe and loving format.
Grief is exhausting. It is physically, emotionally and spiritually exhausting. Luke and I typically have dropped the kids off at therapy and then drive to a Shake place near Circle of Life to sit and talk and have a little one-on-one time. Often we have attempted to converse but instead sit together in comforting silence. Each understanding the other that words don't express the tumult of emotions that are flying around in our heads.
Tonight it was warm and we walked to the park behind the Hospice House and sat on a park bench together observing the ducks and geese swim around on the pond. We both expressed how we have been surprised at the exhausting side of grief. The mind-numbing/thought jumbling tumult of emotions that come and go at the most inopportune times. We knew a year ago that she was dying but her extensive improvement and the talk of the Hospice Agency about discharging her last summer had left us hopeful. She had improved so much. We had unexpectedly grown to love her like one of our own.
Several people have kindly said that God won't give us more than we can handle. They are sadly and grossly mistaken. The whole year-and-a-half with Ariel was more than we could handle. That is why I think we felt closer to God than we ever had before and closer in our marriage than we ever had before. We were an exhausted-beyond-ourselves-overwhelmed mess carrying for her intense needs. But. BUT. God gave us what we needed for each day. Not the next day or the next week...but that day. And in each day, we learned to trust Him a little bit more. One thing that this whole process has taught us is that shielding your children from difficulties doesn't make them stronger. It makes for weak adults. We had discussed extensively with each one of them since she has passed away if maybe we shouldn't have said "yes" a year-and-a-half ago. Was this too hard for them? Each child has looked at us like we have just asked the most insulting question in the world and resoundingly exclaimed "no!" They wouldn't have traded life with Ariel for anything. That has brought us comfort as we walk through this grief process.
Speaking of grief, different things jump out at us when we are out in public. It might be a wheelchair that looks like hers before she had outgrown it or the Elsa necklace I saw around the neck of a friend's daughter that I had bought for Ariel as well and had her buried with. One day it was a pink I-pad I saw a teacher carrying down the sidewalk as I was dropping Timmy off at school. It was all I could do to get back to the car before breaking down. Friends talk about their little girls and the latest Tinker Bell movie that just came out and the continued obsession with all things Elsa and Anna and Frozen. What they don't know is that those were Ariel's favorite movies too. I have every line and song from Frozen memorized. Ariel may not have talked but she had her decided opinions and just like every other little girl in the nation became obsessed with Frozen and Tinker Bell. She too loved all things sparkly and shiny. I walk past the little girl clothing section in the store and catch myself browsing for outfits for her for the summer.
As a family, we laugh until we cry at the silly things we remember and the often ridiculously difficult situation we had found ourselves with her extensive care. We were counseled more than once to walk away and let someone else care for her. We begged God to make it clear as to what He wanted from us in her life and we always felt the strong call to continue the journey with her. It wasn't until the last month that we began to think otherwise. We began to ask how much longer we could continue. When IS enough...enough? What do we do when we can't go any further? We asked God for clear direction and answers because the ones we were given broke our hearts and we knew would break our children's hearts as well. Did we truly trust God? He had gotten us this far. Did we truly trust Him with her and with our family? The thought of her suddenly dying didn't cross our minds. That had honestly been pushed to the back and so many hopeful things were happening for her that she was responding to in amazing ways. But under it all was a fragile little girl who was physically and mentally severely disabled, and that was why she had been placed in Hospice Care. God knew what He was doing when He placed her in our home even though I still ask "why us?" I don't think I'm meant to understand now and I am becoming ok with that. I want to continue to write about her and us and our continuing-on lives. It's often not pretty and right now we (well me) is a bit of a mess but I hold onto the verse, "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." --Jeremiah 29:11

Our Life as of Today

I had all these cute pictures downloaded last night and the blog half written when, for whatever reason, everything shut down and nothing saved! So, this is a quick update for those who have been asking on how we are doing.
We are all doing well...if you count the lack of sleep and that Luke and I were joking about the other night. We feel like we're back in college. We sit in the hallway after kids are in bed and before we go to our respective rooms at night. We reminisce about the day: stuff we need to know, how each other is doing, etc... Yes, we are in separate rooms now because Little Miss Mermaid thinks that her favorite time of day is night and has the night life of a drunken partying college student who forgot they are in school. No worries, the child still gets sleep. She just does a chunk of that during the day when the rest of the world is going about their everyday lives. We've tried to get her switched. It ends up causing fairly significant medical issues. Think heart and oxygen monitors going crazy and keeping the whole house busy instead. So, we take her good days when they come and at times she can get out for short trips into town and she's a happy little girl. The kids have adjusted to her wacky life and Nater Mater has taken full advantage of her night life. The other 5 year old (Nater Mater) who we had just sleep trained has now figured out that mamma's too tired to care if he crawls in bed with her every night while she keeps an eye on his little party friend. If I'm dozing but she is quietly watching Curious George, he can crawl over and join her and the two together can watch numerous episodes of their favorite cartoon at 3am. I am looking forward to the end of Pre-school when he will no longer take naps. That way we can wear his little 5-year-old self out during the day and he should go back to sleeping through the night again. Maybe. And, maybe his love of Curious George will keep his night life going.
Speaking of Pre-school, Nater Mater has LOVED this year. His teachers have been fabulous and in spite of my apprehension of having him in full-time pre-school all day, it has been wonderful for him. He's the only child I've done this with. I like having my kids home until Kindergarten and I've never liked the idea of full-time pre-school because I still view it somewhat as Day Care. But, his school and his teachers have instilled in him a love of learning and he is already trying to pick out words and write letters to people and tell me that he can count to 100...even though he routinely misses #16. He would have been bored out of his ever-livin' little mind if he'd stayed home with me this year. Little Mermaid can't exactly run around with him and I don't have any Day Care kids now. At his graduation I was a little teary. My last baby on his way to Kindergarten and somehow every time my kids move up from the fabulous teachers they've had, I feel the loss as well.
Good Lookin' has done phenomenal this year as well. His teacher has also been a wonderful fit for him this year. She was constant, firm and structured and full of sweet compassion.
His reading has taken off and he is excitedly reading chapter books to Nater Mater when he feels generous enough. Gone are the days Luke and I can spell in front of him so he doesn't know what we are saying. We had a rough patch in March right around the time some beloved friends were moving and we had also gone through a Care Giver change with Little Mermaid. He liked hanging out in her room with this particular Care Giver and when he lost both in the same month, he seemed to revert back about a year in behavior. After discussing it with his school counselor, we figured out it was honestly just grieving and he was having difficulty expressing it (unlike myself and other openly emotional criers in this house). His grief came out in hiding in closets and me having to drag him out by his feet every morning and hauling him to the car to go to school only to have him scream and kick and punch anyone who was within arm's reach. Which is nearly everyone when you drive a mini-van. His counselor started meeting with him and gave him some goals to focus on and work towards and we also worked on getting him to cry instead of hit whenever family came within 5 feet of him. Surprisingly on his last day of school when we were saying goodbye to his teacher, he got teary and said he didn't want to leave. This is the child who begged every day to home school! His teacher and I assure him he could walk downstairs and visit her before school.
Mr. Smiles has wrapped up 2 amazing years in the all-boys class at his school. These 2 teachers make putting your kids in Public School an amazing experience. For this Lego-loving indoor-preferring child, having these male teachers and their personal love of the great-outdoors and experiential learning, public school has been the best choice we could have made. We had originally been told not to put him in the all-boys class because of his difficulty with being easily distracted and that he was already so far behind in reading. But Luke and I knew these 2 teachers and decided to request it anyway. Hands-down best decision ever. He has blossomed in the last 2 years. I cried when we left his school building as well.
Precious Jewel had the hardest start to her school year and the most shocking. She had gone from all girls to home school and recovery back to Public School and was placed in a rough class full of some pretty difficult boys. We debated the entire first semester whether to pull her back out and bring her home and I spent many hours praying and crying my own tears of frustration that things weren't progressing. However, we didn't have a peace about bringing her home either, so we continued to pray for her and help her walk through it all. Two things happened that helped her. First, around her birthday we started her on an Essential Oil that helped her regulate anxiety levels and calm her down and second, in January her teacher started an after-school tutoring class for students who were struggling. Much to her horror she got the "you could use some extra assistance letter." She begged us not to humiliate her and send her, but we did and we all discovered that the handful of kids who were in tutoring were the better behaved kids who were struggling because of the chaos of the classroom. The teacher did this on her own time after school. From then on, she loved school, was able to find a solid group of friends and the tears virtually stopped. Can I get an "Amen!" for that teacher?
What does our summer hold? Not sure. I am really happy that school mornings are over for a time. Does anyone else hate getting everyone up and ready and dressed for the day on a time schedule? It is doubly hard with Little Mermaid. I never know if she is going to be sleeping, awake or having a medical issue while I'm trying to get everyone fed, dressed and ready. Good Lookin' and his morning antics drive me to distraction and many days I want to scream and cry. But our last school morning was just plain hilarious. Everyone was their usual cranky. I was my usual "lets get going and guess what? It's your last day of this!!!"  I was headed down the driveway feeling smug and confident that no one had yelled at or slugged anyone else and that this was our last chaotic morning when Abigail started frantically smacking the back of the driver's seat and yelling (as if I couldn't hear her right behind me) "MOM!!!! Alli is running after our car!" Alli is our morning help that arrives in the middle of the chaos of getting my kids to school. My heart dropped. I thought, "this is it. This is the day we've been dreading. Why today of all days?!?!" I yanked the van into reverse and sped backward down the driveway.
"Mrs. Haak! You left a child!" is what I heard when I jumped out of the car. I looked again into the backseat and noticed that a certain curly haired child was missing. I mean seriously, I've made it to school without his shoes before, but I've never made it to school WITHOUT him! Such is the life in our house this year. Keeps me very humble...or is that humiliated? Meh, whatever. Here's to summer!!

New Year

Since it's been over a month that I've written anything, I thought I might want to give a little update on our family.
It's a New Year and almost Valentine's. Life has begun to settle into a tentative routine with our new family. We are getting the hang of parenting 4 crazy and active kids and one sweet, little, bed-ridden girl. Our kids are beginning to settle and even Good Lookin' who has always taken a stand-offish view with Little Mermaid has begun to warm to her.
Yesterday he walked into her room where I was sitting rocking her in the recliner and reading her Brown Bear Brown Bear. He perked up and asked if she liked that book. His kindergarten teacher last year had read it to his class and he had apparently really liked it. He walked over to her hospital bed and picked up her new little Elephant Toy and handed it to me. "She likes this mom. Let her play with it while you read to her." I nearly cried because it seems that he goes out of his way to avoid her most of the time and I had no idea that he had noticed that she liked her knew toy. I asked if he wanted to play with it with her while I read. He did a quick jerk of his head and stepped back then sat on the floor to listen and watch while I continued reading. I think he's beginning to actually like Little Mermaid! Baby steps. Baby steps.
I had my birthday a couple of weeks ago. Luke took me to Broadway on Ice with some dear friends. I could have died and gone to heaven. Dear Luke is not one who really goes for the artsy side of life. He doesn't dislike it but it's not really his thing either. So when he surprised me with these tickets for my birthday and then also told me that he'd invited friends because he knew I'd like a double date, I about had a heart attack! I could hardly wait! Best night ever! Luke's parents took our kids and Little Mermaid's Case Manager came and stayed the evening with her so that we could get out. It was nice just being out and carefree for an evening knowing everyone was cared for and we could just "be" and have a fun evening.
When I look back over our past year, I am amazed. God has taken us on an amazingly difficult and yet rewarding journey. I read an article that a friend had posted on Facebook a short time back that made me pause and think. The title was "God Will Give You More Than You Can Handle. I Guarantee it." I'd always heard the opposite: God will never give you more than you can handle, but I could never find that in Scripture. I know it says He will never allow us to be tempted beyond what we are able but I always wondered how to explain the other phrase. There have been many times in the past 5 years as I've struggled with depression that I thought I might not be able to take another breath for fear of falling apart and cried out in utter desperation for God's help to just make it through the next 5 minutes let alone the rest of my day. And after this past fall I have definitely come to believe that He WILL give us more than is humanly possible but that's what makes it so beautiful in the midst of the desperation. We are placed in a position of absolute TRUST that He has our Best in mind. And like any parent who has to explain to a child that they truly know what is better for them and they need to trust even though they don't understand, we are like that as God's children. It may seem too hard, too long, impossible to go on yet another day with the way things are, but we can TRUST in Him and His carrying us over the hot sand is the best place to be. He's got a greater plan that what we can see.
We've been told by several people "you are amazing for what you've done. Or, you have to be great parents to do what you're doing." In reality I end many days in exhausted tears and looking at the ever-expanding circles under my eyes from lack of sleep and want to quit it all. Many days are just too hard. Little Mermaid still has the weirdest sleep patterns of any child I've ever know. Last week she went a record 30 hours awake with a 1 hour nap. I am finding that my idea of sleeping during the day since I am the one awake with her most nights, is much harder than it sounds. The rest of the world is most active at day and if I want to get anything done it most likely requires daylight. That leaves me with an average of 2-4 hours of sleep at night and sometimes even less.
We have support staff that comes to our house during the day and that has been a tremendous help. But I find that even with them helping to care for her, I still need to take care of my house, cook food for my family, take kids too and from school, etc... It's hard to do all that while sleeping. I yell at my kids just like anyone else only I have people who aren't a part of our home hear me. Luke and I fight just the same as before only now we have to be extra careful about what we say because we're both so tired. So when people say "you're so amazing," I really just want to smack 'em and prove to them were not. We've simply been called to love on a little girl who desperately needed someone to care for and about her. We stepped out to answer that call and He's taking us on a roller coaster of a journey.
 

These New Days

I haven't written in a few weeks because it's been difficult to put into words what the last month has been like since our sweet girl came back from the hospital. Having her in our home and in need of 24/7 constant supervision and care came as even more of a shock than all the other things that were introduced into our lives the moment she was carried through our front door.

Life has begun to settle into a tentative routine with her and our family is learning more and more what it is like to live with a family member who has special needs and is seriously ill.

She is quite the delightful little handful.

She requires constant supervision since her favorite game is to pull off her oxygen tubing and wave it victoriously in the air. She also delightedly grabs her g-tube any chance she gets and we are constantly pulling her shirt back down to hide it from her curious little fingers. This also gets her favorite toy into her hands to help keep her distracted.

She is smart. She is learning that if she fusses when we leave the room, we will turn around and come back to her. She is learning that crying will get her rocked. She is learning that if she whines in the dark we will sing to her at 1am, 2am, 3am...you get the idea. She had already perfected the art of kicking hard enough that her toe probe flies off...much to her delight.

We have learned that most of these activities take place at night. : S

We are learning to be flexible, open, gracious to each other when the other half hasn't slept that night, patient, kind (in spite of the exhaustion) and that when we are reaching our limit that it's ok to say we need help.

We hit that point 2 weeks ago right after an ice storm hit our region of the south and we were isolated for over a week with no help whatsoever. When a person only sleeps every other night, sanity begins to crack.

 

We had spent the Sunday before celebrating Precious Jewel's and Luke's cousin Cody's birthdays. We'd met for the day to celebrate and just be together.

Nater Mater had brought his newest creation: a cardboard surfboard. He was convinced that if we took it down to the creek he could surf. (We had just watched Soul Surfer and he was begging to go back to the ocean and this time with his new "surf board" in tow).

 

 

His cousin decided she needed to help with the surf board decorations and added her flowery feminine touch.

We now have an 11 year old. It does not seem possible!! 



 

 

Cody's birthday is just 2 days after Precious Jewel's. Nater Mater is convinced that makes Precious Jewel older than Cody and I finally gave up trying to explain it all to him. 

 

Later that night we went to see the City Christmas Lights.

It'd been a long fun day and a certain 5 year old whined the entire time that his legs were too tired to take another step even though he had just stepped out of the car. I had all these grand visions in my head of beautiful pictures of each child set against a sparkly winter backdrop. What I got was this: A picture that I literally had to threaten their lives with if they didn't at least all sit on the same bench together so momma could capture this "happy" moment.
Children have a way of keepin' life real and parents down to earth. 

Sweet picture with the grandparents? I think everyone was just begging to go home.

 One day I will get to go to the town square and stroll leisurely around taking in all the Christmas lights. For now, I'll have to be content with the more drive-by light gazing stage that we're in.  

 

A little peek into our children's lives:

 Mr. Smiles came home from school that week and was so excited to share with Little Mermaid what he had learned about the candy cane. He sat sweetly on the bed next to our little girl and detailed out for her what the colors and strips stood for. He'd tell her a little bit, lick the candy cane and tell her a little more. She was enraptured by his attention and I think the smacking sounds as he worked that candy cane. But, his sweet heart shone through as he told her the clear message of the true Christmas story.

A couple days later we were hit with a rare early winter storm. It's rare for here anyway. I grew up in the Midwest where the first snow is commonly around Halloween. Here though, we don't get snow or ice until at least January or February. It snows so little that no one knows what to do with it and the world around us shuts down.

Now that we have our little girl, our concerns for loss of electricity are great. She is plugged into too many life assisting machines to lose any power. And considering that our electricity has been lost more than once when there was snow or ice was and is a great concern to us. We discussed with our agency and the State our options and came up with an action plan of what to do if this impending storm did hit us. As soon as we saw it moving in, the call was made and she and I were picked up and moved to a different facility where they had plenty of back-up generators to keep her safe.

I had this fierce determination that welled up inside me to keep her healthy and safe until we were given the "all clear" sign.

After arriving at the destination, there was an overwhelming sense of relief and I struggled to hold back tears all day. She was safe. I was safe. But Luke and the kids were at his parent's house without me and I missed them.

Honestly, the other ice storms where we have lost power have been a little challenging but fun at the same time. We made it a big adventure with the kids and without the distraction of electronics the kids got along better. Sleeping all piled up in the living room in front of a the fireplace added to the sense of adventure. We got a little sick of sandwiches and dried fruit, but it was fun. 

 

I came home exhausted 2 days later to a very icy and cold winter wonderland. The snow pants I'd bought all the kids 2 years ago finally got put to use and they still fit! (I'd bought them 2 sizes to big on purpose).

 

Later that afternoon, I took a teary-eyed Good Lookin' on a hike down to the creek. All the kids have struggled with our new total lack of routine. I didn't realize how routine oriented we all were until all our plans have constantly been pulled out from under us in the last 9 weeks. Each of the kids has responded differently, but Good Lookin' has his own unique and challenging ways of letting us know it's been rough. A mother/son hike down a slippery hill to the creek below is just what he and I both needed.

I love where we live. We see several bald eagles every day fly right over our back deck and house. The creek was quiet and peaceful and he and I just sat on the bank, not talking and chucking chunks of ice into the water and watching it melt as it floated away. A lot can be said in the unspoken. 

 

Our motto now is to make plans, but plan on them being changed and learning to be gracious about it all.

We are finally getting some help with her care. We realized when she had been discharged from pre-school that we couldn't continue all of her care and still parent our four kids without help. After weeks of sleeping every other night (I take one night to sit up with her and Luke takes the other) and then being snowed in for 8 9 days with no help whatsoever, I cracked. I told them we couldn't continue what we were doing unless we had more help in our home so Luke and I could simply get some sleep. Our agency specializes in children with special needs and has bent over backward to get us that help and get staff trained to work with her. This allows me to either sleep during the day while some else takes care of her and or I can get out and do the normal things that comes with raising a family with 5 kids.
Everyone who has met her falls in love with her. Once you get over the shock of all her equipment and needs and can look into her deep blue eyes and see the beautiful little girl behind all the disabilities, it is hard to not fall in love. 

With My Song I Praise Him

"The Lord is my strength

and my shield;

my heart trusts in him,

and he helps me.

My heart leaps for joy,

and with my song I praise him."

Psalm 28:7

 

Yesterday was a quiet and reverent Thanksgiving full of family, cousins, laughter and some tears. Luke and I both felt a sense of reverence over the day as our 4 children and their 3 adorable cousins ran around the grandparent's house together. My sweet little niece shared a quiet moment with my Mother in Law snuggling into her neck and just being allowed to be held and gently rocked. I choked up as I thought of Little Mermaid who in the last week has returned to our home and is now deemed too medically fragile to travel anywhere outside our four walls. A caregiver had given up her day so we could spend a day with family down the road after the last 8 grueling weeks since becoming her foster parents.

It's been a physically and emotionally exhausting week and a half since her first release from the hospital and then she was re-admitted just 4 short days later. She is again back home with a sense of relief and at the same time a sadness. During her second stay we again met with her team of Doctors and her bio parents and it was agreed that she be assigned to Hospice-type Care within our home. A court order has gone through as to her care and what she will receive from now on and it brings us a sense of sad relief knowing that she can finally rest.

Our house has become a mixture of quiet reflection and intense crazy love since we fully explained to our children what this all means for our Little Mermaid. Waves of emotion ranging from rage to gut wrenching grief to curious joy have uttered from all 4 of them. Heaven is no longer a place in the clouds where cute little angels sit on fluffy clouds and strum their harps. It is is becoming tangible, real and beautiful even to the smallest of our family members. Questions such as, "Will she be able to walk mom? Could she run around outside like me? Can she play in the sandbox in heaven? She's never touched sand. Will she be able to fly? Can she teleport?! Will her fingers be straight and she be able to hold her toys? Will she finally talk? Will she know us when we get there? Can we still count her as our little sister even after she's gone and even though we never got to adopt her? Will she like dogs or cats better do you think?" Important and real questions from those others who have grown to love her. Death is now a passage to New Life. It is becoming a topic that brings up people past remembered and yet still loved. Heaven has become as exciting as Disney World and the Ocean and playing in the surf. It's tangible and real and the angels that live there don't float on clouds all cute and cuddly. They are mighty warriors greater than any Power Ranger and ready to do battle for their King. The topic of Little Mermaid's life and our role in her passage has dropped the Gospel which is that Jesus is the Good News and our ON.LY salvation onto our front doorstep in the most tangible and real way we could have ever imagined.
 

We've been asked if this is fair to our kids. We were again given the choice a week ago by DHS to step down as her foster parents. Again, we said we'd stay and fight with and for her. We had discussed it at length with our kids and each one of them were upset at the thought of her leaving our home even knowing full well she may not live more than a few months at best. They embraced the act of selfless love far quicker than Luke or I did. Do they know what hospice looks like? Yes,two Christmases ago we lost Luke's Grandma on Christmas Day. Hospice Care was a part of that. The Christmas before that it was his Grandpa. They know what this all means.

Luke and I are very pointedly learning in the midst of all of this what it means to truly be thankful. Circumstances cannot dictate our hearts. Circumstances right now seem unfair and life appears cruel when you look at the surface. But it's God's love and grace that shines through the hard walk. The grace and thankfulness for what and who He has brought our way has brought us a joy that all I can liken it to is childbirth. We may cry and groan under the weight and pain of it all but the end result is beauty and fresh life that can't be explained and are only really understood by those who've walked through it all. So can we say "thank you" this Thanksgiving? Yes, because Jesus is the author of life and has already defeated death. Death will not win.

So yesterday was a day to re-charge and re-fresh and let the stress that has built mountains on our shoulders slowly melt away for a time. We played games, watched the traditional Thanksgiving parade and ate the wonderful food Luke's dad had grilled (yeah, we grill for Thanksgiving).



Luke's parents had built a bonfire across the road for the later afternoon and the kids ran around playing in the wide open field laughing and rolling in the grass and running across a long sting of hay bales.





We ran home in the middle of it all and brought a heaping plate full of Thanks to the woman who sat the day with Little Mermaid and we pray that Jesus' love shined through. Last night we kissed our 4 goodnight and left them with cousins to have a sleepover at the Grandparents. We came home to a quiet house, handed a plate of Thanksgiving pies to our helper and said goodnight.

As I lay hear listening to the hum of Little Mermaid's Oxygen Concentrator, I feel a deep sense of tearful joy. Jesus is actively working and present in this home. It is something I have prayed and longed for and begged for. His presence fills every nook and cranny of this little home in the woods and I can honestly say that we are thankful for this unexpected journey He has placed us upon.

Hands and Feet of Jesus

I am trying to figure out how in the world to write what I want to write and at the same time keep things confidential on the part of our new sweet little girl.
Honestly things change by the hour right now, so what I write may not even be entirely relevant tomorrow.
I'll start with two weeks ago. I had taken our sweet little girl to one of her first big Dr. appointments where I was hoping to get some more answers to the questions we had about her. Honestly, in the 3 weeks we had had her, we were becoming more and more puzzled with some things. It was during that routine appointment that she had "an episode" that resulted in a life flight to a Children's Hospital nearly 4 hours south of us. She had been fighting a little cold for close to a week and coughing a lot, but had been happy and alert and "talkative" the day before. 
Over the course of the next 48 hours, I met numerous Specialists, Nurses, Therapists and Case Workers who did their best to explain things to me. THEY knew her I found out. They knew her well and were very very concerned. Terms I had never heard before have now become familiar to Luke and I. I felt like an avalanche had just buried us and we was trying to sort through the rocky mess we were discovering.
BUT, something had also clearly and profoundly happened smack in the middle of this that left both Luke and I in a place of total, if not frazzled, trust that we were doing what God had asked us to do.
Many of you have asked in the last couple of weeks how my Vertigo is doing. God took care of that the day our little girl crashed on the Dr's table. I was not allowed to ride the helicopter and therefore had to follow it down in the car leaving late afternoon and not arriving until close to midnight. This was me driving alone, in the dark, through the mountains and on winding roads when I haven't more than driven to town and back. Soon after leaving my house and collecting my stuff, it became very apparent that my driving alone in the dark while still struggling with vertigo was not going to work. I began to pray. I have prayed for specific things before and some things have been clearly answered and many things have not. At least, not in the way I had asked for. This was different. For whatever reason God chose, the vertigo is GONE. It was gone the moment I asked while driving south to be with a little girl who was fighting for her life. Had I asked for it before? Yes. Had He answered it then? No. Is it gone now? Yes. His timing is perfect.
So what is happening now? I've had many people text, call, facebook, and e-mail asking how this sweet little girl who captures the heart of anyone who sees her is doing. How are we doing? How are the kids doing? Honestly, it is a very difficult question for me to legally answer. Sweet little girl would not normally have been placed in our home with what has since come to light. She will never live the normal length of life that other children live.
We have been asked if we want to step down as her foster parents. Both Luke and I know that they most likely won't find anyone else who will take her. Not at this point. We have also come to love her deeply. For whatever reason, God has placed her in our home. Is she aware? She is aware of love. She is aware of interaction. She smiles and squeals when you hold and talk to her. She laughs when you tickle her or when she knows she has once again ripped the oxygen tubing out of her nose when she isn't supposed to. She cries when she is scared or hurting. She "sings" along to music when it is played for her.
Our prayer, Our hope is that we can be a home that lavishes the love of Jesus onto a little girl who will soon be running and laughing and talking like the children around her. Only she will be laughing and talking in the arms of Jesus. We pray that our children will see it as a gift to give her some of the love she has lacked and to show her who Jesus is in their hands and feet. We pray that our children can see the Gospel lived out in front of them in their own home and that they will not experience trauma (not the same as sadness) but be able to be part of that very Gospel we try to teach them.
Does this scare me? Yes and no. The fear of what others think and judgment is more what I fear. That is more selfish. I believe God placed her with us, not as an accident, but for us to learn and our family to learn better what it is to be like Him.

Is this hard? It is the hardest decision we've made in a very very long time. It is not just Luke and I we have considered. We've taken into careful consideration each of our children. We've had to weigh in jobs, lifestyle, family time, relatives and our church. We don't know what it will look like.

For now, we take each day at a time and rely on His strength to carry us through.

Risk and Possibility

"Sometimes in life one has to take a chance. Without risk, there's no possibility. Without potential loss, no prize."

I had someone ask me shortly after we got Little Mermaid if it was wise to have taken her when we were still unsure of my own test results. And, that now that I knew what my own issue was, if I shouldn't take more time for me to heal. I wasn't sure how to answer that. None of us know what our future holds. None of us can say if we're even going to be here tomorrow. Why should some potentially bad news stop us from continuing on a path we've been directed down? None of my answers were conclusive yet and when they would be...well, we'd cross that bridge when we came to it...not quit as if already condemned.
When we got the call about her, we were given just an hour to decide. It was the day after I was given the devastating news that I either had a tumor or a life-long disease. Not IF I had either or, but that I DID have one of them. But both Luke and I knew that God had clearly led us down this path and that when we had started this leg of our journey He had been loud and clear that it was time to get started. We nearly had refused to follow His leading. Fear nearly kept us from being Foster Parents. Fear of experiences in the whole realm of working with at-risk children in the not too distant past. Fear (on my part) of judgment that we wanted to Foster Handicapped children. I've already had more than one person tell me that "normal" kids need families too. Why not take them? Ummm...because NO ONE wants them? Isn't that a good enough reason?
But taking anyone at that time was risky. We didn't know anything about her, how long we'd have her, if we could actually handle her, etc... We stepped out and said yes. And yes, we were more than taken aback when they walked in our front door with her. But can I say that after having her for just 3 short weeks in our home, that we are more blessed than before? She has blessed us! Our prize is her smile even when we're at the Dr once again or even waiting in the ER. Every nurse and Dr has been taken by her smile and sweet chuckle. Our prize is her laugh at our kid's antics when they're interacting with her. Our prize is that even though she has no recognizable sleeping pattern that we can figure out, she is at least singing happily at 3am instead of screaming. (Our 4 children screamed at that hour). It is very hard to get angry at a child who, even though everyone else is sleeping and she is not, is singing and laughing to herself in the dark. She is a happy girl. She is full of life. She is a creation of God just like the other healthy and mobile ones in our home.
Is it hard? My Lands yes!!! In 3 weeks, I've slept 1 night through. That is only owing to my sweet other half who slept on the floor next to her crib all night so he'd wake up to the sounds of her alarms instead of me. We take turns getting up with her at night. I get one night. He gets the other. But dear Luke has always had the gift of sleeping through a hurricane and sometimes I feel it's pointless to wake him up to go take care of one of our kids when I'm already awake. A couple of nights ago though I'd had it. It was his turn and he was in her room asleep on the spare bed and in his exhausted state did not wake to her coughing (she has to be suctioned). The first time I stumbled into the room my thoughts were kind, "oh poor guy! He's so tired! He can't even hear the machine or her right next to his head!" I willingly took care of her and walked back across the hall to our room.
Thirty minutes later was another story. "cough cough" BEEP! BEEP OF THE FRIEKING ALARM!!! I laid there for about 15 seconds waiting for him to hit mute on the alarm and take care of her. BEEP! BEEP! BEEP! Now my head is filling with "bleep bleep bleep @#$%#0@#!
This time I stomp into the room, hiss loudly for him to wake up, purposefully step on him and take care of her. I about gave the poor guy a heart attack. Yeah, it's hard and I had to swallow my pride the next day and apologize to him.
I had secretly hoped we would be given a Down's Syndrome Child. I swear they are walking angels among us and would fit in nice with all our kids. Down's Syndrome is not her issue. But she is just as sweet.
So I'm glad we said yes. I'm glad we trusted that He was in control and we took a leap of faith. I'm glad we risked it and said yes. Our children are learning to step up and take more responsibility. They are learning that even though someone may look or act different that they have just as much value. I am learning to be more compassionate towards my husband who has been so patient with me this entire last year. I am learning that even though a person, young or old, may be totally dependent on you far past they age they should be, but they can be one of the biggest blessings you'll ever encounter.
"Without risk, there's no possibility." I'm glad we took "the risk." We have a prize named Little Mermaid.