Judah's Journey

Monday, March 16, 2015

From the 4th Floor II

I've decided that it's not a bad thing to be remembered, recognized, or known within the childrens' medical field. For the longest time I've really wrestled with that. Who in the world actually wants to have that kind of "status" in a hospital or clinic or doctor's office?? For years I have looked at that as a negative, burdensome thing. Or I've made sarcastic jokes about it. Or rolled my eyes...and sighed. I don't want to do that anymore. I can't change the life that God has called us to, but I can, by God's grace, change the way I respond to it. And I can more fully embrace it. I can have a good attitude about it. I can be an encouragement to others that I come into contact with. I can use my own years of experience to come alongside someone who's new at this and help to carry their burden in whatever small way I can. I can choose to be thankful. Actually, I'm pretty sure I wrote a very similar post to this one 2 or 3 years ago. I've just lost sight of it. Lack of intentionality will get me every time.

I'm thankful that I feel comfortable when I walk through the doors of Childrens. It's not new and scary anymore. There isn't really anything unknown here. It's nice to know your way around such a huge facility. Where the sun shines during certain parts of the day. Where the best place to park is. Where the play rooms are, the cool ball track, the video games, the library, the endless supplies of stickers.

I'm thankful to be on a first name basis with Diane in the lab. She's been drawing from Judah since birth. And when blood draws are a normal part of your life, it's good to "know someone".

I'm thankful for Diane, who sits behind the information desk. It's always nice to see a friendly, familiar face right off the bat. And it's nice to know that she knows us, too.

I'm thankful that I know what to expect from the cafeteria. I know how much to expect to spend on a meal, I know what kinds of snacks will be good to have on hand that I can't get there, and I know how good - or not good - the food will be.

I'm thankful that I've been asked the same questions so many times, that I don't have to think about my answers too much anymore. Instead of the interaction being super clinical, it's become more conversational. And that is a much easier and more pleasant experience.

I'm thankful for all the familiar faces everywhere. Nothing is as unnerving or anxiety-producing as it might otherwise be when you're surrounded with names and faces that you recognize.

I'm thankful for the Chinese restaurant across the street, and the nurses that let us in on their secret. That place has amazing food! For cheap.

I'm thankful for the mutual respect shared between us and nurses that has come from years of shared experience here. We know they do a great job as nurses. They know we do a great job as Judah's parents. We trust them. They trust us. We work well together.

I'm thankful for the thoughtfulness of nurses and care partners here. The white board in Judah's room says, "Welcome back Judah!" Enough said.

And these are just the tangible things that I'm thankful for! This doesn't even begin to touch the things that God has done in our hearts and lives! The people Jared & I are, the people our 4 kids are and are becoming because of our unique experiences with Judah. The ways God has used Judah to shape our hearts and lives and connect us more deeply to other peoples' pain. I can't begin to describe how thankful I am for all of these things, and for all the people that God has reached through Judah's life! And He's not done yet! But that's another post for another day.

For now, as I look at my beautiful, sleepy son, I'm just thankful.

From the Waiting Room I

The last 2 years have been pretty quiet for Judah. No major surgeries, no major illnesses. Aside from health maintenance and minor procedures, it's been a time of huge growth and development for him. Jared & I have enjoyed every victory, no matter how small: every new discovery, every goal met, every new accomplishment...every new word or funny thing he said...every new dance move...every time he's tried to imitate his older brothers, however unsuccessfully...every moment spent in pretend play with his sister...every new day in Kindergarten...every snuggle with Ollie...we're thankful for every day that we get to experience life through his eyes, energy, enthusiasm, and love for the little things. He is one incredible kid, and we are so thankful for these last 2 years God has given him to just rest.

Today we start another chapter. Over the last few days, as I've anticipated this surgery, I have found myself slipping back into "Dr. Mom" mode. It's kind of weird. I mean, in every appt., every minor procedure, every medical thing there is an element of Dr. Mom present. But when something this big hits I definitely find myself looking at the situation - asking questions, gathering information - from that perspective in an effort to protect my heart and my mind. 5 hours in surgery. A complex surgery. One that the dr. can't fully explain what he's going to be doing, because he has to get in there first to see just what things look like. I've sent Judah down that hallway to the OR over 20 times. I fight tears every. single. time.

I said we start a new chapter today. We do. Judah will finally be able to start moving forward towards healthier urinary and renal function. These repairs will prevent his kidney disease from worsening for a time. This surgery is a very good thing! Within the next 3 months we should be able to get rid of a medication; and we're anticipating that within the next year or so he'll finally be ready to toilet train. All good things. A fresh start in this part of his body.

And yet...it is hard to let go and trust. I have to remind myself so often that Judah isn't really mine. He - every one of my kids - is a gift from God Himself that I have chosen to give back to Him, trusting Him to have His good and perfect way with them, whatever that might mean. I remind myself that Judah is not in the hands of the surgeon, the anesthesiologist, or the nurses. He is in the hands of the Healer. Always. I tell Judah a lot that Jesus is always holding him, especially when Mommy or Daddy can't. It's a truth I need to hear, too.

Funny, I wrote that and received a text just a few seconds later that included these words:

"Jesus loves little Judah with a tenderness and passion that cannot be equaled. Jesus is there in the operating room with Judah...taking care of [him] in the amazing and beautiful manner only Jesus can achieve." I never cease to be amazed and humbled by God's infintely tender care for me and for us. In the hardest and scariest moments of Judah's (and my) life He has proven Himself wholly trustworthy, unconditionally faithful, and ridiculously gentle. His lovingkindness never fails.

Just got an update from the liasion. Everything is going as planned up to this point. Thanks so much for praying and supporting us in so many different ways!

Wednesday, September 3, 2014

He's a Rock Star

Well, he's finally tired! Judah has been through 2 1/2 weeks of all day kindergarten, and it's finally catching up to him. I thought for sure he'd be falling asleep at the dinner table, or on the way home from school, or crashing at 7. But no. These last 2 mornings, however, I've been getting him dressed while he's sleeping! And, for the first time, he was not ready for school. I had to walk him in and leave him crying in his classroom doorway. Not fun. Bless his amazing teacher and para:) Apart from this morning, he has seemed to love every minute of school! He made a special hat one day and wore it into the evening at home.

He has filled the side of our fridge with pictures and notes from his teachers.

He is obsessed with his teacher's hair. "It's so long! Her hair is brown!" He LOVES his PE teacher. His whole little face lights up when he talks about Mr. Hesik! Every single day he walks out of the building, runs to me with a big smile on his face, gives me a big hug and says... "Can we go home now?" Ha! He loves school, but he's ready to come home and snuggle.

Everyday I hear various kids saying hi or bye to him, by name. His teacher said that his first week went really well! There are challenges that we knew there would be and were ready for; but there are also things we thought would be a challenge and they haven't been! She said he's happy and energetic about everything and he loves to participate. Yup, no surprise there. His services have been going well, and he seems to enjoy the time he gets with each one of his providers. It's been so fun to "watch" him experience all of these new things through the eyes of Lydia & Ezra who see him at school. AND, he's even telling me things about school and is able to answer some of my questions! This is a HUGE change from preschool! He's grown a lot over the summer. Oh, and if I could just brag about one more little thing. He totally read 27 sight words one day at school last week. This kid is amazing.

We finally moved from the 5 point harness to the big boy seat belt! It was a big day for everyone;)

Friday, August 15, 2014

2 Days Down...and Aced!

Judah is loving kindergarten so far, and has had 2 very good days! His teacher, special ed. teachers, & school counselor have all told me that he's done really well, he's so sweet, & he already has quite a fan club. Not surprising at all considering who we're talking about. That little boy has always been a charmer! He seems to have grown right before my eyes in the last 48 hours. I love listening to all the things he has to say about school and watching him get so excited!

Thanks so much for praying for him - for us - and for all the encouraging notes! It's powerful knowing that we are NOT alone.

Walking to the van with Dad after school

Judah's "I'm excited about school!" face

Thursday, August 14, 2014

Ready... Set... Kindergarten!

As I write this Judah is at school with the most wonderful Kindergarten teacher on the planet (save my sistah moon) and 19 other kiddos. I've been thinking about him all morning; wondering what he's doing, what he's thinking, what the other kids are thinking about him, and how in the world have 5 years gone by?!

I've actually been avoiding this post. We've been in somewhat of a blessed holding pattern these last couple of years with Judah's health and development: no overnight hospital stays, no major surgeries, no major illnesses, and nothing but successes to report from pre-school! I have had the opportunity to take a step back and enjoy a very "normal" life with Judah. He's such an amazing kid - as you know if you've read much of this blog - and it's been a gift to just coast along with him, and eat up just him in all his glory, without having to deal with...extras. I have allowed myself to stuff emotions and fears and live in this state of false security, apathy, and...procrastination I guess. I just haven't wanted to face the reality that huge change is upon us. And though it's good change, it certainly comes with a load of anxiety, uncertainty, and question marks for me.

I was welcomed back to the "Land of the Living with Special Needs" (I hate that I just used that label) on Monday when we went to Judah's MDT (Multi-Disciplinary Team) Meeting. He's got a whole new team of service providers and teachers in a whole new district, so...let's put it this way: 19 people and 90 minutes later I was ready to curl into the fetal position and have a good cry. I love Judah! I am so proud of him! I want everybody to know that he's mine and he's extraordinary...just like my other kids! But there always has to be "those meetings" of explanation, preparation, action planning, and services coordinating; and I just feel like sometimes Judah becomes the diagnoses...instead of just Judah.

That being said, I am confident that God has orchestrated every detail, down to every person on his team, every kid in his class, and every moment of every day he's away from me. And I think he has a really great team. Literally a small village of people who care about him, want to see him succeed, and are committed to doing their very best for him. That's pretty amazing.I also believe that God put Judah in the class that He did for the other kids, too. I think it's impossible to know Judah personally without being positively impacted in some way. I'm already praying for their little hearts, believing that in the next several months and years that Judah is in that class, God is going to work powerfully!

Judah is ready for Kindergarten. He couldn't wait to start! He was so excited he could hardly talk this morning! He marched his way into school, wearing that as-big-as-he-is backpack, and settled into his classroom like he'd already done it a hundred times. All with that huge, beautiful, endearing grin on his face.

And then there's me. And the reason I've been hiding from this blog. Reality hurts sometimes. And fear is a very real and powerful emotion. And I don't like to cry. And writing here has led to some of my biggest cries...ever. But here's the thing. This is also the place where God has met me, held me, comforted me, reminded me, restored me...and I've missed that. By choosing to avoid facing the pain and the "hard" of this next stage of life, I've robbed myself of experiencing God in amazing, impactful ways. My loss. So here's to a fresh start. A Rescuer that waits patiently for me.

My biggest fear is that kids won't like or accept Judah. That he'll be teased, ostracized, excluded, or treated like less of a person. When I look at this picture of him, my heart breaks at the thought that kids (or parents) won't look past the differences to the amazing kid he is! He's just Judah! He doesn't care that he's any different! He's perfectly comfortable in his own skin, and wants so badly to be like any other kid! To do what they're doing, experience what they're experiencing. And he doesn't see any reason that he shouldn't be able to! What if kids put him down? And what if he understands what's happening and begins to believe that there's something wrong with him...or that he's less of a person than someone else...or that he's anything less than exactly who God created him to be and how WE see him? It's hard to deal with this crap with any kid. But there's an innocence and a vulnerability about Judah that is one of the things I treasure most about him! There are so many "what ifs" floating around my brain. It would be easy to give in to the fear and allow myself to become a blubbering mess. It just would. For me, there is a measure of comfort in fear. I am so comfortable with it and the illusion that I have some sort of control over it.

BUT GOD. I choose those 2 words instead. I love Judah...BUT GOD loves him more than I can possibly fathom! I want to protect Judah...BUT GOD is his Rescuer, the Lover of his soul, the One Who knows exactly what he needs at every moment and only He can provide it perfectly. I have a good plan for Judah...BUT GOD has a perfect plan. I want Judah to experience only good (my definition)...BUT GOD has only good (His definition) for him. And ya know what? God's good will certainly include hard things and hurt...but then to God be the glory. Because only God sees how the hurt will be used to glorify Him and to impact Judah's heart, or to impact those around him for the Kingdom. And the hurt will absolutely keep me on my knees, trusting that God is Who He says He is and that His Word stands.

This has been a tough few days for me. It has felt very much like the end of my pregnancy and the first year of Judah's life. I had to decide then that God's glory and His Kingdom were more important than anything else, and then I had to let go of Judah and let God have His way. I find myself facing that very same decision. And I'm making the same one. I choose God and His way and His heart and His everything for Judah and me and my family.

Today I choose to celebrate this amazing milestone! Guys, 5 years ago we didn't know if Judah was going to come home! 4 years ago we didn't know if he was going to sit by himself! 3 years ago we didn't know if he was going to walk or talk! 2 years ago...he started walking! 1 year ago...he started talking in sentences! His whole world has exploded and he's reached almost every goal that has been set in front of him! And the ones he hasn't reached, he just hasn't YET! AND NOW HE'S IN KINDERGARTEN! And let's not ignore the fact that he's TOO SMART to qualify for special ed. K! Judah is off the charts awesome!

So, here we go. I mean, HERE WE GO!!!

"Let the beloved of the LORD rest secure in Him, for He shields him all day long, and the one the LORD loves rests between His shoulders."

Deuteronomy 33:12