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!

BIG Decisions on the Horizion!

It's been awhile, yet again. I suppose I can mark "be a better blogger" off my New Year's Resolution's List! We have some catching up to do; let's get down to business.

We are truly living in a joyous season of life. Our children are just so darn fun! The laughs and giggles that fill our house everyday keep my heart so full I think it may burst at times.

 

 

We had a wonderful Christmas, and were able to travel back home to visit family for a whirlwind week of squeezing in every minute of family time possible. It's never long enough.

 

However, I should say it was 75* on Christmas day down here and we spent the day playing out side and walking to our neighborhood park. I say, let's meet here next year, okay? We tend to prefer sand over snow. :)

The boys made a trip to visit Santa this year and you can see fun was had by all...

 

 It seems to bear a striking resemblance to our previous Santa photo....

 

I suppose Santa was able to forgive Owen's tears- The Daugherty Boys are on the road!

 

 

Whoever told me these two would be best friends...I'm looking for you. Best friends is not how I would describe these two...unless they are just constantly practicing for wrestling tryouts!

 

I give you exhibit A:

What appears to be a very sweet, tender moment in Wal Mart...

 WRONG! It's a choke hold...granted Abel is rarely innocent. The precious, brotherly moment was ruined.

This didn't end well for either of them. Abel packs some heat.

 

 

 

Big things are happening at The Daugherty House and we have some big decisions to make.

 

 

We are currently seeking The Lord for guidance in choosing the best place to send Owen to school for the upcoming year. He has qualified for a school for language development, which we strongly feel he would benefit attending. He would also receive speech therapy at school. The issue with the school is it is everyday, all day. So, due to his immunosuppresion, medication schedule and cathing schedule it's just not possible. I have a meeting coming up with the school system to set up his IEP (a plan designed specifically to meet each of his needs) and at that time we will be applying for hospital homebound services with co-enrollment. We are praying The Lord will open and close doors, leading us in the direction He sees fit for Owen.

 

We also have the option of sending Owen to the precious, loving school he has attended this past year. I hate the thought of not sending him there again as we have grown to love his teachers so much and have celebrated each milestone Owen has met with them. However, we feel a specialized school would better serve Owen and the needs that he has. But, we are waiting on The Lord to guide us, should he lead us back to our beloved school, we know their arms are open and waiting for us. I was so blessed as I received an email from the preschool director today saying " I want you to know how much we have loved learning from Owen this year! (And I mean that- he has taught us more about love, patience, compassion and innocence that we ever imagined.)" It just warms my heart to know how loved and accepted Owen is at his school!

 

Please be in prayer for us and we seek The Lord while making this decision. We have learned from very early on it is our job to advocate for Owen and this is a whole new realm! Pray that we will receive clear answers and that our hearts will be open and willing to follow where The Lord guides us, trusting that He knows where Owen will best succeed in the upcoming year.

 

 

 

I should brag on my littlest man for a bit, too. He is feisty, fierce and full of life! Quite the opposite of his gentle, (somewhat) quiet brother! This little guy goes and goes until he crashes. I realized the other day that my snuggles with him have become very few and far between. Only after sleeping and occasional boo boo, this little just doesn't have time to stop for his mom. He can count to 10 and knows most of his letters (all compliments of his big brother!) and carries his blankie literally everywhere. He accompanies us to each therapy session and typically behaves as well as a busy 18 month old boy can. :) He brings me so much joy, laughter and even a little frustration! But I just couldn't imagine our family without his crazy little antics and silly smiles and giggles!

 

 

 

 

 

 

 



Aside from choosing Owen's schooling we have a super fun (yet actually stressful!) decision to make very soon!

Last year Owen was selected to be a Make A Wish recipient! We didn't announce anything because we had intended on waiting until Owen could talk and request his very own, special wish. We were contacted in December saying that the time had come, and we had to decide on our wish. So, Owen's wish granters are coming to our house this weekend! We are so, so excited for him! This little guy is so tough, so brave and strong. He's been through so much I would give him the world if I could. So hopefully we will come up with an amazing, super cool Owen wish that will just bless his socks off!

 

 

I recently posted on facebook about needing prayers for Owen. Last week Owen's routine monthly labs showed a dramatic jump in his liver enzyme levels. Right now our doctors are not wanting to take any action until the viral studies (part of the labs that were drawn last week) come back. These labs take a little bit of time to see if any growth occurs to see if he is positive for some type of virus that would be causing his levels to rise. Right now those labs are pending. If those labs are all negative we will then look to other reasons for the change in his levels. Most likely, it would be one of his anti-rejection medications. In this case, we would lower the dose of the medication. Which, could comprise his kidney protection.

 

In all, we hate to see him have to fight off a viral infection because it is difficult on his body to fight infection while on his immunosuppression medications. And, of course lowering his rejection medication just sends shivers down my spine.

 

However, I have to trust that The Lord is in control. He holds Owen firmly in His hands and loves him infinitely more than I do. I can do nothing more than to lay my son at the feet of Jesus, knowing that it is He who holds his healing. Please continue to pray that Owen's levels will return to their normal level and pray for wisdom for our doctors. Also, pray that Michael and I will have peace in our doctor's decisions. This is the first "glitch" we've encountered down here and it's really making us miss our Cincinnati doctors. While we know The Lord has placed us down here and Owen is in good hands, the care we received in Cincinnati is a standard that few will ever match.

 



 

 

Psalm 86:15-17

" But you, O Lord, are a compassionate and gracious God, slow to anger, abounding in love and faithfulness. Turn to me and have mercy on me; grant your strength to your servant and save the son of your maidservant. Give me a sign of your goodness, that my enemies may see it and be put to shame, for you, O Lord have helped me and comforted me."