Moving Right Along

With the impending day of my birth quickly approaching...and coming to terms with the fact I'll no longer be a "twenty-something" I've done some reminiscing of this crazy, blessed life I've got and I must admit, it's pretty darn good.

I have officially been loving this stud for half my life. Yes, you read that right. I've been laughing at his jokes (sometimes sincerely, sometimes...not so much) for 15 years.

These little babes had no idea of the challenges and blessings to come their way.

Since I've had children something happened to time and it now moves at warp speed. I remember adults always talking about how fast time goes when I was little, and I never believed them. All I wanted to do was boycott naps and hurry up and be a grown up. They were right! I swear just yesterday I was kissing chubby baby cheeks..now I'm chasing them, chauffeuring them to school (and an attempt at playing soccer...not our "thing"), racing in the backyard, and listening to their sweet voices read me stories and sight words.

I'm working on understanding that every season of my life is sprinkled with sweetness. Yes, it pains me that these babies are growing, but I know what I will find the sweetness in each stage of life. So I have to make a conscience effort not to mourn the past, but rejoice in the present that I'm gifted and be ever so grateful for the awesome things happening now.

Owen is still loving school. It is such a blessing to see him excited to go each morning, and also to hear the feedback of how well he's doing. Ms. Kate, his personal aid has played a integral role in helping his adjust this year. We are so thankful she was chosen to stay by his side throughout the day and that their fit has been just perfect. His teacher has challenged him, seen the need for schedule rearranging to further help him succeed and grow and we are so thankful for her love and devotion to helping him be a successful student.

Looking so very dapper on picture day :)

Abel is officially enrolled in preschool for fall 2016. This was 97% his idea. The kids loves anything that has to do with school. Anything. We talk about numbers, letters, colors, shapes, math, reading...all of it. All. Day. Long. His numbers and letters go for rides in his toys school bus and airplane. They play in the barn, and ride in the tractor. "Come on letters! Time to eat dinner!" And yes, they are even invited to the table. Abel is so excited to go to school, and would likely just join in with his big brother if allowed. Florida has a great program for 4 year olds that is free to everyone, so we are taking advantage of a great deal, and throwing in so key learning experiences. i.e. Turn taking, waiting in line, sharing, sitting during story time...I'll let his teacher work on those and we will just keep playing letters here at home. :)

I will admit that this journey to 30 hasn't been the easiest, but at my now "wise old age" I can clearly look back and see the works that The Lord was doing in my life. In the valleys, I see so many blessings. The Lord pushed me, and challenged me to see that I can't do this alone. I am thankful for the storms, and so very thankful for two boys who continually show me amazing examples of love. Our life is different than "the norm". Not because we love more or love less. Just different. And that's okay. It's our different, and I wouldn't have it any other way.

"You do not realize now what I am doing, but later you will understand."

John 13:7

Life just Keeps Happening

Believe it or not, I haven't forgotten about this little blog. Although I understand one might be guessing after a 14 month reprieve.

Life seems to just take over, not necessarily "get in the way", but it just keeps happening and there is little time left for me at the computer. I won't complain though, this life seems to just get better by the minute.

I last left with a post about Owen's autism diagnosis. As we are progressing, and feeling our way through this new world of friends, teachers and therapists we have seen so much develop in this sweet boy's life.

Owen started kindergarten this year. Yes, my heart shattered and I was positive I would sit at home, crying and missing him every second of the 4 hours he was away from me. After the first week of us both shedding tears at drop off, we are not only surviving, he is thriving.

Owen's school is a special needs school, specifically caring, loving and teaching those with an autism diagnosis. It is by no accident we ended up here, it was most certainly the will of The Lord leading us here.

This school has multiple campuses, one of them being at the church we attend. When we first moved down here they were having a celebration walk through of it's campus and I made a mental note of the special needs school right down the road from us, "just in case." Fast forward two years of preschool, and our hearts just not being satisfied with the teaching and attention he was receiving in the public system, we needed a new door to open. "Just as it would happen" a friend told me how wonderful this special school is that her son attends. There were many hoops for us to jump through, many doors that I felt were not opening quickly and many, many meetings with us advocating for what we felt was best for Owen.

In the end, not only did The Lord open every door, he provided 100% (and more) of the funds needed to pay for Owen's tuition. The tears of joy would not stop. I knew the moment we stepped foot in his school it was meant for him. The staff at this school not only understand Owen and his needs, but they love him all the more because of exactly who he is. He's just a kindergartner who loves and loves and loves.

Yes, he's autistic.
Yes, he's a transplant recipient.
Yes, he comes with a lot of instructions.

No, he can't sit still very long.
No, he doesn't communicate on the level of most 5 year olds.
No, he doesn't always fit in to the "normal" of this world.


However, he longs to learn. He wants love, attention and affection. He deserves to feel loved, wanted and cherished, along with being challenged, directed and taught by those who devote their lives to expanding the world of kids like Owen.

Every single need of my precious boy is met above and beyond what I had hoped for.

Before school started this year, my dear friend told me that she had never heard me be so excited about school for Owen. And she was right, with the exception of our wonderful homebound teacher, last year was a very, very tough year on Owen, school wise. My heart ached for my sweet boy who wanted to learn, but I felt wasn't just being loved and accepted as he deserves. I had an overwhelming sense of peace about the upcoming year. I knew that every single step, meeting, phone call and email were blessed by the hands of God, leading us to where we are now.

Owen is also determined to continue excelling in speech. We still see our precious Ms. Laura twice a week, after school. The activities he completes and accomplishes with her blow my mind. There is so much information stored in his little mind that I absolutely cannot wait for the day he just explodes and shares everything he knows with me. I'm still praying for that day, and believing The Lord will continue to be faithful in Owen's development.

In addition to speech, we've added occupational therapy after school. Owen is typically excited to see "Ms. Heaber" because he swings, plays messy and runs through the sensory room. :) With speech both in and out of school and OT, this kid works harder than anyone I know- and is happy to do so.

Thank you so much for your constant prayers for Owen, messages and love that covers our family. We had quite the scare in August/September when Owen was hospitalized due to a parasite in his intestinal system. It was the longest hospital stay since transplant and he was very, very sick. The love that we were shown during that time is so humbling and fully demonstrates the love of the church family and body of Christ we share. Thank you, from the bottom of my heart.

The other little one of the house, not to be forgotten is a bundle of energy, laughs, joy and giggles. His eyes open in the morning like every day is the best day of his life. He desperately wants to do everything his big brother does and over the moon in love with him. He loves big and lives big, every single day. His imagination is thriving, and he can't leave the house with his coveted trains, Thomas, Toby and Percy. He loves to laugh, make you laugh and although he talks a big game, he's quite the mama's boy who isn't quite as brave he may think. His day isn't complete with out counting, spelling and plenty of train playing. I feel as if he's grown so far from being a baby this year that I find myself standing back, watching him play (most likely recording it) just so I can soak in every minute of this innocent childhood time. It is a gift I most certainly don't deserve.

Abel is still staying at home with me. We've yet to decide what the future holds for his schooling. I've mentioned before that homeschooling has always been tucked inside my heart, but we also know the benefit of a couple years of preschool as well.

Our year has been spattered with beach trips, amusement park trips, camping trips, zoo visits,  time with family here and in Kentucky and lots and lots of swimming...even in November. (Hey- if I'm going to live in Florida I'm going to soak it up as long as I can!)

I'll leave you with a few pictures from my blogging absence (I know that's what you're really here for anyway). Thanks again for loving our family and following us through this journey of Knowin Owen!

Psalm 37:23

The Lord directs the steps of the godly.

 He delights in every detail of their lives.

A is for Acceptance

A is for Awesome

A is for Adorable

A is for Adventurous

A is for Amazing

A is for Autistic

Owen has autism. This isn't a shock. In fact, deep within my soul, I've "known" for about two years. It was confirmed this week. Even though I was thoroughly expecting to hear those words, it was still a moment where time stood still. A moment where I'll never forget what I was wearing, what the office looked like. Or the pain of the crushing blow to my stomach as I sat in the chair watching Owen play on the floor as my mind carefully etched that moment into my memory forever.

Owen is brilliant. Although I am as just  biased as the next parent, I can assure you his mind holds the capacity to do great things. But, he thinks differently. Everything to him is a puzzle. Something that needs to be solved, or mastered. At the age of  about 20 months he knew his alphabet, could complete a puzzle, newly opened from a package and could recognize numbers to 20.

While receiving this diagnosis is hard, I kept telling myself to just "accept it" and move on. Accept what? He's my son. He woke up this morning no differently than he has anything other morning. The word AUTISM is not stamped on his forehead. There is nothing to "accept" except for the fact that this child, is uniquely and beautifully created. This is who Owen is, and who he will forever be. We will not run from it, nor will we dwell on it as if we have received grave, horrific news.

Let me tell you what Owen is NOT: Owen is not autism, he is not kidney disease, he is not a boy with scars representing a life of sickness.

Instead let me share with you who Owen IS: Owen is a child of God who has a mind that was perfectly created so beautifully and intelligently that we cannot understand it. Owen is a child of God who has a beautiful body with scars that represent a life that has been full of so many miracles, and so many prayers answered, and so many lives that were touched. Owen represents a life that I know was created for amazing things. I am still in awe of the work his life has already done for the Kingdom of God. Whether or not this Child ever speaks a full sentence, his purpose is to do great things, and I have faith The Lord will carry them out.

Receiving this diagnosis actually opens up many new doors for Owen that we have been praying for. Specific therapies and grants for private schools will now be on the table to apply for, because of this diagnosis we can move forward into allowing Owen to develop faster, communicate more effectively and live a fuller, happier life. Because of this diagnosis Owen, is still Owen.

We will return to the Autism Center in November for a more in depth meeting with an entire team to evaluate each step of the testing process that Owen has completed. At that time we will have a better idea of where he falls on the spectrum, any new therapies to introduce and basically where to go from here.

Right now, honestly nothing changes. Owen is still the same, sweet, gentle, loving, sensitive Owen. He is compassionate, caring, smart, and kind. And no, he doesn't encompass every characteristic of what you may know about autism. But that's why it's a spectrum.

 

 

My biggest prayer is that as grows he knows and understands our love for him, and can comprehend the love of Jesus. That his life will be full of joy and love. I am confident that as The Lord carefully created Owen He planned this very well. As I pray over Owen each night, this is one of the few times of the day where he sustains eye contact with me. As we Thank Jesus for dying on the cross and sing "Jesus Loves Me" he fills in the blanks when I stop singing.

So yes, Owen has autism. Yes, he is a kidney transplant recipient under immunosupression and there are tons of germs floating around and he could get sick at any point. Yes, he's developmentally delayed, socially behind.

I "accept" it. It's okay. The Lord chose me to raise this child that He uniquely created, and He does not make mistakes. Nothing about Owen is a mistake.

Instead of worrying about what this means for Owen or our family, I will dwell on the fact that Owen is a miracle from the hand of the Lord, who so many medical professionals doubted would not be here today.

"Difficulty is actually the atmosphere surrounding a miracle, or a miracle in its initial stage. Yet if it is to be a great miracle, the surrounding condition will not be simply a difficulty but an utter impossibility. And it is the clinging hand of His child that makes a desperate situation a delight to God." (Streams in the Desert)

There are many parts of this journey that have been difficult, but as a look back that is when our faith has been it's strongest and The Lord's presence felt the thickest. If I've learned anything from our time with Owen, it's that The Lord is never finished growing us. He's still working on our family. This is a new leg of our journey. And this time, I'm not afraid.

Deuternonomy 31:8

"It is The Lord who goes before you. He will be with you; He will not leave you or forsake you. Do not fear or be dismayed."

He's a World Changer

Growing up, I always cried on the last day of school. Always. I loved school, I loved my teachers, and I was always the one so sad that the school year was over. Apparently little has changed, as I was the one crying on Owen's last day of school this year.

We were so incredibly blessed with the most caring, loving, attentive teachers and sweet little school that I just cannot speak highly enough of. It was such a blessing from the Lord. I was a nervous wreck, sending Owen out "into the world" this year and he did fantastic. This sweet, little school willingly took Owen in, without a second thought and blessed us beyond measure.

Owen fell in love with his teachers, and I'm quite sure they loved him too. :) It was almost guaranteed that I would see him in someone's arms when I came to pick him up from school. My heart was so full of joy leaving him with two teachers who truly loved and accepted him. We will miss Ms. Carol and Ms. Cynthia so very, very much and we are incredibly thankful for the time and love they poured into Owen this past year.

 

 Owen is now enrolled in a public school for the start of next year. It is a preschool for special needs children, specifically with speech delays.

My heart is so very heavy and broken over this.

I have wrestled with this Lord over this decision. Before Michael and I had children we had discussed many options for our future children's schooling, homeschooling, private school, Montessori, none of which included public school. This is simply a decision for our family. I taught in the public school system, it is just the direction we feel the Lord calling our family.

I have researched and researched small, private, Christian preschools near our home. I found (what I thought) what the perfect school. Only 10 minutes form our home, a small faith based school and from my phone conversation it sounded like an answered prayer. I explained Owen's developmental delays, speech delays, and medical concerns, but assured her that no medical assistance would be necessary during the 4 hours he would attend school. We decided that it would be most appropriate to place Owen in the 3 year old room for next year, rather than the 4 year old class, which sounded perfect. We set a time to meet and tour the school and my heart was finally resting easy.

Our visit at the school was short. About 5 minutes into the tour the director informed me she felt Owen was not a good fit for the school. Her school is very structured and children are expected to sit for 10-12 minutes at a time and she felt that because Owen could not do that (among other behaviors) without the assistance of a full time aide, he could not attend there.

I left quickly, without making eye contact so she wouldn't be able to see the tears welling up in my eyes. My drive home I sobbed. My heart was shattered. This is the first time someone has blatantly pointed out to me just how "different" my child is. And it hurt. Deeply. I cried tears not only for the rejection, but for everything Owen endures. The labs, the therapies, the surgeries. The "normal" childhood he is missing out on. I cried because it's not fair that I drag him to therapy three times a week where he is working so intensively when other kids are simply playing outside without a care in the world. I cried because there is a constant pressure of "how many words did he say today?" or "how many fluids has he had?" I cried because it's not fair. It's just not fair.

And then, I stopped.

I have layed my hands on Owen, each night for at least month praying for this exact answer. In fact, my exact words have been that the Lord would "Slam the door where you do not want us to go." Today was for sure a door slamming right in my face. A very hurtful door slam, but it was indeed an answered prayer.

The Lord is hearing me, He is guiding me. And He has yet to lead me astray. Daily I have to lay my sweet Owen at the feet of Jesus, knowing that He holds his future in His hands.

And there are days where I may simply feel overwhelmed, but I am so thankful that Owen does not understand the pain of rejection or the hurt of being left out. As his mother, I, without hesitation bear that pain for him, and once again the miracle that is Owen points me right back to the cross.

I'm asking that you pray with me. Pray that the Lord will reveal to us the perfect school for Owen. And if it happens to be the public school where he is enrolled, that the Lord would steady my heart over this decision. Pray that my eyes will be seeking Him and not be selfish in this decision, but that I would be trusting, knowing that He who created Owen knows far better than I ever could.

I am reminded of one of my favorite worship songs Oceans, by Hillsong United. Specifically in the song the lyrics speak of trusting without borders. This is where I am in my life right now. I am praying that the Lord will continue to lead me, stretch me, guide me, and I will trust Him, without any hesitation.

Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior

 Owen was born to change to world. Yes, he's different. Aren't we all?

Psalm 139:13-16

"For You created Owen's inmost being; You knit him together in my womb. I praise you because Owen is fearfully and wonderfully made; Your works are wonderful I know that full well. Owen's frame was not hidden from you when He was made in the secret place. When Owen was woven together in the depths of the earth, Your eyes saw Owen's unformed body. All the days are ordained for Owen were written in Your book before one of them came to be."

Seems Like Yesterday

It seems like yesterday that I was carefully programming your dialysis machine, just one last time. Putting my mask on, carefully sliding my hands into those sterile gloves, laying out my "field," ever so meticulously as to not contaminate anything.

I could have done it with my eyes closed then. Given the test now, I think I could probably pass. You've lived your life now 4 months longer as a HEALTHY boy than sick. Yet, the journey we walked will never be far from my mind. To this day, I often awake to "phantom" beeping from your dialysis machine. Memories trigger the smell of the bleached down hospital walls, the beeping monitors and nights where I thought sleep would just never come. A journey like our's will never be far from my mind.

Yet, one little giggle and I'm back to reality. The reality that you're here. We made it. I'd be lying to say that I never waivered, because it was rough. But goodness, the sorrow was well worth the reward we've been given. You, sweet boy are well worth every tear we shed, every sleepless night, every heart aching prayer, every single day we spent waiting for your healing, waiting on God. You are worth it.

We're far removed from that. In fact, it's been over a year since our last hospital stay. Yet, in my closet, sits my "emergency bag," still packed, and ready to go. It's that dreaded bag that I quickly threw into the car more times that I care to remember for unplanned hospital stays that I needed to be somewhat prepared for.

Tonight: I unpack. :) I let go. It's time to move on. It's time to really start living, to let go of my fear, because you seem to have none. You are the bravest boy I know and the way you take on the world is so refreshing and encouraging. Watching you live gives me so much joy. I pray that you never lose your zest for life, my sweet, sweet angel boy. :)

 

 

In the 2 years that have passed since Owen's transplant Owen has grown 8.5 inches and gained 6.5 lbs! (Nope- not a typo, that's eight and a half inches!!!) So for those of you that keep commenting on how tall and skinny he's looking- you're exactly right! Before transplant Owen struggled to stay in the 10th percentile for his height. Today, he ranges from 60-70th percentile for height and about 60th for weight! We were told by our doctors in Cincinnati that kids usually experience "catch up" growth with an early transplant...but we did not expect it to be this much growth! However, we are SO thankful for a growing, healthy boy!

Owen has gone from needing 10+ daily medications, including weekly shots, and labs draws to now only needing his 2 anti rejection medications and 2 bladder medications, and monthly lab draws. When we transferred down here to Florida his new doctors could not believe the low amount of medications he requires, even for a transplant kid! His labs have been amazingly stable (except for one random liver snafoo, which seems to be an error, no occurance again!) and his latest ultrasound shows a very happy, healthy kidney and bladder! Praise God!

 

Since we have moved to Florida Owen has begun an intense therapy regimen. He has 4 therapy sessions per week, and we are currently on the wait list for a 5th to open. He has speech 3 times per week, occupational therapy once and behavioral therapy once. I cannot tell you how important therapists are in Owen's life. The Lord has blessed us so much with amazing therapists with each move and this time has been no different. Per the usual, Owen has reeled them in and they have already fallen in love with him. Can you really blame them? :) Speech has been our main focus and his improvements have been so amazing, especially in the past couple months. Owen adores Ms. Laura and tries to give her no less that 10 kisses every time he sees her. In fact he even greeted her with "Wawa pway" (Laura, play) at our last session. Which is such a huge accomplishment in the speech world for Owen!

In fact this is a most recent text I received from Ms. Laura: "Since Owen has started speech here in August, he has met 9 goals and has 4 emerging at present time. He has progressed so much and managed to wrap me around his finger in that short amount of time- I adore him!!"

Owen works so very hard, and my heart just beams with pride watching him learn and really want to learn new things. Hearing his sweet voice say new words just makes me melt! And even though he asks for his Daddy at least 20 times a day, I would listen to it 20 more just to hear that giggle after he says it. :)

 Owen knows his entire alphabet, can count to 20, can spell both his name and Abel's, is working through and entire box of flash cards (pictured), knows more words than I can keep count of (yaaaay!!), knows his colors and shapes, animals and their sounds. I am insanely proud. :)

The past year I have seen Owen morph into this amazing, loving, caring boy. While he may not say much, the emotion he can evoke with his baby blue eyes and biggest, best hug I've ever had are all I need to know that this sweet boy loves me unconditionally.

He's finally coming into his roll of big brother and teaching Abel the ropes. I never imagine my life with two boys. Now that I am surrounded by dirt, worms, sand, sticks, and sweaty, sticky boys....I just couldn't imagine a life any sweeter. :)

I am sure that I will forever find it diffult to adequtly describe just how thankful I am for Carrie. Could you ever really honestly put into words how you feel about someone who voluntarily risked their life, surically to save your son?

Carrie's surgery lasted approximatly 5 hours. Her recovery: at least 8 weeks. Owen's surgery was about 8 hours. His recovery: much shorter. :) (In fact, the chunky boy who couldn't even crawl before transplant was out of his crib and pulling up before he was even discharged from the hospital!) In order for Carrie to donate she had to take all of her sick days from work, kind co-workers also donated their own sick days so that she would have enough to cover her time. Strangers donated meals to provide her family. She needed help with her two children at home: it was provided. The Lord's hand was covering every aspect of this transplant process. But what continues to amaze me is that she never waivered. Yes, it's true you only need one kidney. Your body functions perfectly with only one. But it's not a decsion to be taken lightly. Carrie shared with me that she felt God leading her the moment Owen was born that it would be her. She just knew. Wow. I still get chills. Praise God for a faithful woman, who loves Owen and who I could never, express my love and gratitude for. Not only did she change Owen's life she changed mine too. Without her, I know my story would be very, very different.

 

Jeremiah 1:5

"Before I formed you in the womb I knew you, before you were born I set you apart; I appointed you as a prophet to the nations."

Happy 2nd Kidneyversary!