A Blessing

I am sitting here at the computer, starring at our NEW monitor....thank you Auntie Katie. It is AMAZING!!! What an awesome blessing today to arrive in the mail. I am so appreciative. We have been using a really old monitor that you could barely see at times. And now everything is HUGE and crystal CLEAR. Thank you.

So, my attempt to keep up 2 blogs backfired. Who was I kidding? I can barely manage one, let alone two. So I imported the posts I had from the blog about Luke, and I figure you all will understand if I post a little more about him as I process what we are going through.

I have to share how proud I am of Grace. She is reading little books and doing an excellent job. She read this little book to me tonight and after she finished reading it she exclaimed, "Now I can start learning to read." I said, "Gracie you are reading!" She looked at me and asked, "I can read now? I CAN read now." Then she shouted down the hall to Luke that she knew how to read, to which he replied back, "well..you can't read as good as me." And from there, I am afraid, a shouting match between who could read and not read. Why can't they just get along sometimes? Ugh...the constant bickering is difficult on me sometimes.

Luke is still crying over the eye drops. Some nights he is a champ and some nights I almost have to wrestle him to get him to hold still long enough to insert the drops. I wish I knew some magic trick to make things better.

Bella will be 11 months old tomorrow, and I can't even comment on that :( Time is rushing by at lightening speed.

Our First Moment

(How Luke looked the first time we met...2003)

We faced each other, starring eye-to-eye. He looked at me so intensely, almost like he knew me. I starred back, unable to move, my breath catching shallow in my chest. I had never seen him before, nor had he ever seen me, but in that moment, I knew without shadow of a doubt I was looking at my son. I stood facing him, and he studying my face so intensely, for what seemed like hours. Finally, his sweet foster mom's voice broke the silence, "I just thought you two should meet." "Thank you," was all I could whisper. I was too caught up in the importance of the moment. And then as quickly as it began, she was gone, he was gone.

I had been working at a small store the day Luke walked (well carried) into my life. He was 8 months old and had already endured more struggle, heart ache and challenges than I could relate too. I questioned my ability to be everything he needed, but his happy disposition left me feeling as if he were saying, "Come on mom. I've been waiting for you. Let me introduce you to my life and we can figure it out together." So, I did what any good mom would do. I took a blind leap of faith and jumped. Since that moment, I haven't looked back. We keep pressing forward, him and I. One therapy after another, one doctor's appointment after another, one tear after another. We stand hand in hand, mother and son, walking a path neither one of ever intended to take, but one that neither of us would have ever wanted to miss. I have the privilege of being your mom Luke. I count it the biggest blessing in my life that somehow God saw me fit to be your mother. People have told me that you are blessed to have found us, but I am the one that has been enormously blessed to have found you. Luke, thank you for letting me be your mama.

An Answer

I just had to share the most incredible news. Less than 24 hours after posting about Luke's therapy, I received a message from my good friend Maryjane that one of her staff assistants has a pair of therapeutic listening headphones that she is going to GIVE to Luke!!! I am so excited, humbled and grateful that a perfect stranger would offer an incredible gift to Luke. I am so thankful for the kindness and generosity of this lady. Thank you for helping Luke have a much needed tool.

Therapy Thursday

Every Thursday, the four of us (Luke, Grace, Bella and myself) make the drive up to Legacy Salmon Creek Hospital. We park our well loved green mini van in the parking structure, hall the stroller and diaper bag and anything else that we might have brought along, across the sky bridge. Walking across the sky bridge immediately brings back memories of going to my doctor's appointments during my pregnancy with Bella. Therapy and my OB-GYN are located in the same building. When the automatic doors open up, the kids fight over who gets to push the the button for the elevator. After breaking that argument up with talk about turn taking, we proceed down one floor. Our large entourage enters the little waiting area in Suite 200: Pediatric Rehabilitation. They know Luke by name so check-in is a breeze and he begins talking with all the other kiddos waiting their turn for therapy. Luke knows no stranger.

Luke eagerly anticipates Joy's arrival. Joy is his occupational therapist. Occupational therapy is designed to help kids with challenges in fine motor movements (such as writing), vestibular difficulties (such as balance issues) sensory difficulties, etc. She helped me realize that Luke had tics, which lead to a referral, which resulted in a diagnosis: Tourette Syndrome. This particular Thursday, Luke was having a lot of tics. His therapy began with work on a swing. He had to propel himself through space using his core muscle groups. He played a bean bag game which required visual tracking and motor coordination. (See picture).

Next he cleaned up the bean bags by having to make baskets into the container. He thoroughly enjoyed the challenge of this activity and was exuberant about his participation.

Next Luke was put into a "body sock". This helps give pressure and information to his body about where it is in his environment. This "body sock" began calming his sensory system down after all the excitement with the swing. He did several activities while in the bright blue sock. Isn't he cute? This mama thinks so!

The last part of therapy was conducted in Joy's room. Luke practiced shoe tying (which he was successful at), writing and letter formation. Pictured below, Luke is using a therapeutic listening program. There is very soft/faint music playing in the background in specific tones. This helps with attention and concentration. He is working at unscrewing these nut and bolt type toys. This help his fingers with dexterity and helps his brain get his fingers in the right mode to work on handwriting. They are always so good about giving Luke rewards and fun breaks that keep him motivated to keep working and improving.

Before I knew Luke, I never knew places like this existed. I didn't know about therapy and rehabilitation. Luke introduced me to this world. A world that he has always known. Luke was 5 months old when he began therapy and has been in therapy every since. We did take one year off last year, and unfortunately this mama knew that he needed to be back in therapy so we jumped through all the hoops to get him to this new place (which I LOVE!) I have been all over to many different places but this therapy center is awesome. The staff is so supportive and they love Luke. I am so grateful for the help he receives and the support I receive. They are truly a blessing to our family. So you might be wondering...what does therapy like this cost. Well...it is $340 a session. A session is 1 hour. I praise the Lord that we are blessed to have insurance that cover most of the cost. Somewhere I need to find $135 dollars to buy the listening program for him. Unfortunately, things are tight for us right now, so the program will wait, but I have faith that Luke will get the listening program in the near future. I heard I can try craigslist for the headphones and cd's. That would make them cheaper. I think as Luke's mom, that is one of the most difficult parts of raising special needs kids...money. I see things that can benefit him, like the listening program, but everything costs money. And I am one that has a difficult time feeling guilty and then it makes me feel like a bad mama because I know something that would make life better for him, but I can't afford it. Money, or lack there of, has been the main drawback to me staying home this year. Ugh. So... there you have it. My first big vent about what would make things better for kids with special needs. Money...a necessary resource that is in short supply at our house :) I know money isn't everything and I am truly thankful for everything I have, but some days it would be nice to buy some of the things that would help Luke.

The Great School Debate

I have come to the conclusion that there is not a perfect option for Luke and school. Basically you have 3 choices. Public, private and home school. Unfortunately, we have tried all 3 options already with Luke, none proving to be a match. As his mom, I long for an answer to this issue that keeps me awake in the middle of the night, that causes me grief and anguish over how to provide the best learning environment for Luke. An environment where he is supported, cared for and feels safe enough to engage and relaxed enough not to tic as much. But alas...I feel defeated. I feel as though I have failed him in this area.

Private school affords Luke the luxury of small class sizes and a caring and supportive staff with students who like him, but there are no special therapies, classes or teachers trained to guide Luke through his disabilities. Private school is also expensive and adds stress to our tight budget. Not saying that we wouldn't sacrifice. We would. Unfortunately as time continues on, and Luke's diagnosis' keep on coming, private school becomes less of option due to the disabilities and special needs.

Public school offers a free and appropriate education (according to the law). This is the realm to which I am most familiar...in fact trained in this realm. Unfortunately the class sizes are large, kids are cruel and hurtful with their words, and fighting special services tooth and nail can be discouraging. The last thing I want to do is crush Luke's spirit. He already is vocal about his dissatisfaction of school. The other issue is the massive amounts of budget cuts that are happening throughout our state. I have a difficult time figuring out what else they are going to cut. It seems to me is that our students are the one's that are missing out.

Home school is an option, and an option that I read many children with Tourette syndrome choose. The downside of home schooling Luke is motivating a child to work with all the distractions of home. It was like pulling teeth to get him to decide to work. The other is the lack of down time for me and time to recharge my batteries before racing 100 miles an hour alongside Luke. This is not to say that I wouldn't home school him if it was the best choice. The problem is...I DON'T KNOW WHAT THE BEST OPTION IS! Why is it so difficult to figure out.

Currently Luke is in public school. He is going through testing to re-evaluate him for additional services through our school district on his IEP (Individualized Education Program). I need to know as his mother and educator where he tests at. I am hoping this information will help me make the best placement/decision for Luke.

If there is anyone out there reading that has a suggestion, I would love to hear it. I open to any advice at this point.

Recovery Update

I am currently on day 11 of my recovery. I am finally starting to feel better and not be in so much pain. I am sick of taking the pain medication. It makes my head feel so funny. The toughest part of this recovery hasn't been the pain, but not being able to pick up and snuggle Bella. She is mad at me right now. When I go in to her room to comfort her or rub her back, she shakes her head "no" and pushes my hands away and screams for her "dada" to come and rescue her from the big bad meanie mama.

I got to spend some time with just the older kids today. We took Luke to therapy and then I took Grace and Luke to the Dollar Tree (which is the coolest place to go when your a kid). Everything is a dollar!!! They each selected some toy that will no doubt be broken and or missing by tomorrow. Oh well. I love how excited they are to go to the Dollar Store.

I started another blog. This one is about Luke and the challenges he is facing. I started it because I need an outlet to process this crazy journey of ours and hopefully connect with other families that have similar stories. I also want to raise awareness of Luke and the disabilities that he faces and what help is available to us. You can link to it at the top of this blog...or go to www.luke-thislittlelightofmine.blogspot.com

Tourette's, Glaucoma and a Tonsillectomy

Life, as usual, has been busy. Although, I have been taking time to process the news of Luke's new diagnosis'. For whatever reason, I wasn't expecting a diagnosis of Tourette's the day we went to the pediatric neurologist. But there it was "Tourette Syndrome", seemingly thrown into my face quick and painful. The worst of the news was that there wasn't anything that they were going to do to help Luke (as the tics are not severe enough). The doctors words were, "you are just going to have to help him learn how to deal with it." "Deal with it"?!? My head has been swarming with all sorts of things, but most of my processing has been put on the back burner, as I had my tonsils burned out of my throat last Monday, in a process that has render me helpless and useless to my family, especially my 10 month old, who won't even let me rock her to sleep now.

The glaucoma diagnosis came 4 days after the Tourette diagnosis. His eye pressures are rising and he scored below average on his field vision test. Next appointment in 6 weeks, not 3 months. The new game plan is to treat with eye drops to lower the pressures. Luke HATES eye drops. Crying and pleading with me not to put drops in. How do you explain to your 7 year old that if you don't put the drops in that you may lose your eyesight? I tried to "ham it up" telling him that the eye drops were super secret special drops that gave him "super hero powers". He liked the pretending, but still screamed and protested when the time actually came for the drops to be inserted. Ugh...my heart breaks for him. School is difficult and kids are mean. Unfortunately he has a tic right now that cannot be hidden. He is being reevaluated for a new IEP through our school district. I am not certain what is going to come up but it will help me understand how to help him more effectively. I long for his little heart and soul to be protected.

Last Monday, I bid farewell to my tonsils, who I will not miss in the least. The procedure went well and was short. I was still extremely scared and cried in the operating room. I know, big baby I am. The recovery has been long and painful. The pain can radiate at different levels. At some points my throat has felt like shards of glass have cut it up. Fun. Not. I am on my second bottle of liquid Vicodin. The pain has been a little better today, but I am still in pain. The doctor said the back sides of my tonsils were covered with infection and puss. Nice. I guess that explains why I have been in so much pain off and on for the last six months.

Grace is doing well. My heart has hurt for her too as the place she holds in the family is one of the most difficult. I worry about her not getting enough or pushed aside because her needs are not as emergent as Luke's and the baby's. I have had some time to really think about things and there is one decision I must make for Grace so that I know that she is getting the best. She loves ballet and tap. She is practicing for a Showcase in the end of June. When I am completely healed I want to take her to see the movie Tangled.

Bella is mad at me because I haven't picked her up in a week. I would be mad if I were her too. Ugh..I just can't wait for all the craziness to subside and life to continue on. It also would be nice to eat something crunchy again. Just saying.

Mr. L

(Mr. L & the Christmas after we adopted him 2005)

My days are full, and night time is the chance I have to catch up on everything. Lately, life speeds by at full force and I am left just trying to hang on. Life can lead you on some interesting journeys and no journey has been more interesting and full of surprises as the journey of parenting Mr. L.

You see, by all accounts, he is a MIRACLE (all children are), but him in particular MIRACLES abound. Mr. L was adopted on May 20, 2005. It was by no chance that he became our son, but through faith and GOD's PLAN. I remember the judge saying "Do you claim this child as your own as if he had been born to you?" After the adoption was finalized, I was listed as mother on his birth certificate (even though at that point I have never gave birth). He was two years old at the time.

Lately, everything with Mr. L has seems like a struggle. Any parenting manual you might have, you can just throw it out the window. He challenges the traditional sense of parenting and requires you take the creative approach. Mr. L has been in some type of therapy since he was an infant. At one point it was written that there was "probable hearing loss". He has had ear tubes placed 3 times, adenoids removed, and heart surgery to correct a PDA. He has seen a geneticist, 2 developmental paediatricians, pediatric cardiologist, ENT specialist, physical therapists, occupational therapists, special educators, psychologist, glaucoma specialist and now we are adding to our list orthodontist and pediatric neurologist.

(Mr. L & Christmas 2010)

Amongst Mr. L's diagnosis' are: developmental delay, ADHD, microcephaly, pre-glaucoma. I have to be honest, sometimes it is incredibly tough. Sometimes I throw my hands up in the air and feel defeat. We try things and they don't work, but we keep going. But despite all of the above things listed he is HAPPY. He is a LIGHT to all who meet him. And actually, that is what his name means "light". He is an excellent reader and loves Star Wars and NERF. He LOVES to ride his bike and play outside. I constantly remind myself that I need perspective...Even on a bad day, I am privileged to parent him because I know what the alternative would have looked like. I will advocate for him, I will make sure he has what he needs, and let's be honest (most of what he wants), and I commit to making life positive and good to the JOY and LIGHT that he brings it.

Catch-Up

I have been a really horrible blogger lately. The holidays and sickness have kept me fairly busy...but let us back track to November and HAWAII...

We had the most wonderful time in Hawaii (Maui). The kids were so good and such good travelers. They were happy on our long 6 hour flight as long as they were eating or watching movies. The little miss did great. She slept and played a bit. Between Miss B and Grace I must have made 10 trips to the little tiny airplane bathrooms. Fun! It was funny because when we boarded the plane in Portland the flight attendants wanted to make sure that everyone knows where they are going on the plane. Isabella was a lap infant so they wanted to check that. I said yes she is lap infant and the flight attendant said, "good luck." I thought that was really positive. We didn't need much luck because Bella was such a good traveler.

Miss G and I cruising at 39,000 ft.

Dad, Miss B and Mr. L on the way to the Island.

The beach right in front of our condo.

My kids playing in the ocean while the sunsets. Incredible!

This was their favorite activity to do on the entire trip.

Mimi and Luke

The crazy faces of Miss B.

2nd Breakfast at Mimi's condo.

The 3 munchkins!

Aloha Mixed Plate. YUMMY!!

Maui Ocean Center

Our Favorite Restaurant Ever!

I can't believe this long anticipated trip is over and has been over for several months. It was everything that we hoped it would be and more. We have plans to return next November and stay a little longer. It was amazing and we felt so blessed as a family to be able to take this trip together.

Depraved Indifference

This is my heart...

Living a FAITH that Bleeds...

I promise I will post all about our trip to Hawaii with pictures soon...but tonight I have so much weighing on my heart I wanted to focus on this...

I have been struggling lately with life in general. I have had my bout with postpartum issues, been learning to juggling parenting 3 children, adjusting to a job change. At first I thought things were just randomly happening, but now I am able to sit back and see that even amidst the kayos God is moving, in me, through me and is positioning me to where HE wants me next. For the last several months I have thought that there is NO way that God would want to use broken, hopeless, jumbled up me. BUT He has been speaking to my heart, and His PEACE has covered me.

I guess my faith has been challenged since Mark brought home the 30 hour Famine box. A box I pass by and look at daily. I have yet to open it. Because...I KNOW what awaits me. Every year I organize the famine for our youth group. It is something I feel called to do. So when the box arrived it sparked something in me that is difficult to describe. I KNOW that in that box there is information that I don't want to read. That I don't want to know exists. In the box is a tangible reminder of children dying daily of preventable causes like hunger, dehydration, and disease. In America....the land of opportunity, plenty and everything else we can imagine...we can pretend that those children don't exist. We can try and justify the reasons that we don't need to, or can't be bothered with it...The TRUTH is that those children DO exist and whether or not I see them or don't see them....they ARE there. Waiting... Waiting for me to act.

There was a time that I operated daily in FAITH. I had doors swung wide open to me and was reaching the least of these on a weekly basis. I marvel at how natural and rewarding it was and how BIG my faith was. I see now that I have put God in a box and have focused entirely on myself. I have tried to put limits on myself with how useful I can be for God. I have looked at the picture in the wrong way. He wants more than just a sliver of my heart...HE has given ME (us) everything...HE also requires everything in return (not just what I feel like). Either GOD is Holy and good or HE is not. Either we TRUST Him with everything or we don't TRUST Him at all. Either the Bible is true or it is not. Their is NO room for mediocrity.

I am not certain what God has in store for me. In the last 8 months I have been through major changes. I have had a baby, quit my job, recovered from postpartum issues, traveled, and now I am going to be homeschooling our children. Homeschooling was not just a "good idea" for our family...although it is...it has come as CALLING from God. I never imagined myself a homeschooling mom...but GOD did. As time goes on I feel as though HE begins to peel back layer by layer revealing His plan. It might be difficult and hard sometimes. It might require risk. He might be asking me to dig deeper and trust Him through things I would rather avoid. It might mean embracing the least of these...denying myself certain things or making changes. ONE thing I know is that I will say YES to God....whatever the cost....whatever it takes.