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

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 

Judah, Judah, JUDAH! part V

January 20: He is his brothers' biggest fan

February 1: Still Mommy's Boy

February 3: His Best Friend

February 4: Showing off his writing skills. Yup, that says "Judah"!

Judah, Judah, JUDAH! part IV

October: family day at Vala's

October: Happy Halloween! (Judah was Ollie Puppy)

November

December: 1st batch of cookies (he picked snowmen)

December: MERRY CHRISTMAS!!!

January 2014: 1st time in the snow...ever!

Judah, Judah, JUDAH! part III

August: got a new Buddy while Dad & Eli were at YFCamp

August: celebrated a birthday & an anniversary in WI

August: back to school & his favorite teacher

September: eye muscle surgery

Judah, Judah, JUDAH! part II

June: Happy 4th Birthday! 

June: visiting cousins in Enid, OK

July

July: 1st fair ride

Judah, Judah, JUDAH! part I

As promised, here is Judah's Pictorial Year in Review!

Christmas 2012

January 2013

March: IMAX at the Zoo

Easter 2013 

Has it really been a YEAR since I last escaped to this secluded spot? That's almost impossible to believe...and yet the dates don't lie. When I think about everything that Judah has experienced and accomplished in the last 14 months, I'm completely overwhelmed! Wanna know one of the best parts? Judah has spent the last 17 months at home - not one hospitalization!!! God has been so abundantly gracious and generous in equipping and enabling us to meet Judah's needs at home, with the help of amazing doctors, so that we have been able to treat every illness and infection without a single admit. I never saw this day coming. I thought it wasn't possible. BUT GOD is the author of Judah's story and his Healer, and He has something else in mind for this little lion. Judah's status could change at any time. He could be admitted today...we have learned to accept the fact that we just never really know with him. But, I am thankful for every day that God gifts him with good health, and I will be thankful that the experts are available to him when he does need them again 24/7.

In the last 14 months Judah has hit a ridiculous amount of milestones. So many things that I have taken for granted with my other kids because they naturally hit them at the "normal" appointed time and without much effort. He has changed drastically in the area of social interaction. He's met fine and gross motor skills. He's running, jumping, marching, dancing, singing, initiating conversation, speaking in full sentences, telling "knock knock" jokes, imitating his siblings to death, talking about school and his new friend, wanting to do everything his brothers do, throwing, kicking, climbing, problem-solving, sounding out words, writing words, spelling his name, writing his name, climbing stairs upright, and, as always, winning the hearts of the people that are lucky enough to come into contact with him. Do you see that  list? There are HUGE things on there. And he does them ALL INDEPENDENTLY!!! Do you see God all over this? Because I do! I see God's fingerprints all over that little fire ball when I look at him! To think that we didn't know if he was going to live...if he was going to make eye contact...if he was going to hold his head up...roll over...sit up...crawl...stand...walk...talk... He's done it ALL, and he's done it on God's time, with his own endearing, adorable style. I'm floored by God's goodness in this journey, and by His work in the mind and body of just one little boy who has been so underestimated and misjudged at times.

 

When I'm able I'll post a blog of pictures and videos from the last year. You won't believe the changes he's made, how much he's grown up! He's still way too adorable - way too sweet and snuggly and funny - but he's looking more and more like a big boy. Just like he is:)

Until next year...

Judah's appointments went well overall.

Our time with the craniofacial team at BoysTown was a breeze. Only [mostly] good reports there! The big procedures that are yet to come are far enough down the road that we still don't really have to think about them much. There will be another palate repair, but Judah's new plastic surgeon is confident that it will be a relatively simple fix and Judah should respond well. That won't happen for at least another year. All the dental work that needs to be done won't start being necessary until Judah hits 5 or 6, and then there will be several procedures over the next several years. Blech. We enjoyed reconnecting with the other specialists we saw that day, and we had fun hearing them "Ooh" & "Aah" over all the progress Judah has made in the last year. They really are a great team.

The round of urology tests that took place at Children's went...well, I guess. I mean, probably as well as they could have, given everything Judah underwent that day. That kid is truly a rock star. He inspires me. There has been just enough improvement in Judah's reflux that we can wait until next year to re-test, and should still be able to put off a major surgical repair until he's 6. Huh. That could be a big year for him. Blech. Anyway, I'm encouraged, because although his kidneys & whole urological system are pretty much a mess, he's staying infection-free & his quality of life is great! Should he end up with any more kidney infections, the doctor would do the repairs then; but so far so good.

Thanks so much for praying that day! I still wrestle with "Why God?" Syndrome sometimes (super frustrating, because I feel like I should be WAY beyond that by now!!!), but I believe that God works in my heart through your prayers and continues to draw me to Himself even as I question. I believe that your prayers are powerful in Judah's life, even though I can't see it...yet.

P.S. Judah is learning how to put his coat on at school! He totally surprised me the other day before school when he almost got it on all by himself! Each time he masters a new task/skill, or even gets close, his whole face lights up! It's so much fun to see. My little boy is growing up:)

The Annuals

There are a few things to be praying about. But before we go there, let's talk about some fun things first!

Judah is dressing himself! Well, very nearly. When it's time to get dressed he insists on doing it all by himself - shirt, pants, socks. The socks he nailed awhile ago. As a matter of fact, any time he sees socks lying around (which, let's face it, is a common occurrence around here) he puts them on. He's usually walking around with way-too-big socks on his feet - too cute! The shirt he's got a handle on...as long as he doesn't try putting it on upside down first. Or feet first. The pants. More often than not he pulls the penguin-two-legs-on-the-same-side maneuver. With a little help and a 2nd chance, he's got it. He likes pulling his pants up while standing, which is a little challenging (read: comical), but he gets it. Eventually. It's so fun celebrating each little accomplishment that is represented in the "simple" task of getting dressed! And Judah is always so proud of himself! We've seen Judah taking small steps towards independence more regularly since starting school. They're so good at teaching him skills that allow him to be more independent, and he responds so well to them. I am extremely thankful for the team he has on his side at school. They challenge him and push him, but they cheer him on and love him well, too.

Judah had a 2nd field trip right before Halloween. All the pre-school kids went to school in their costumes and then visited a retirement home. They sang songs to the residents and had a snack with them. I would have paid money to be a fly on the wall! After their visit they went back to school to put on a costume parade for the parents/grandparents/guardians that could be there. Daddy & Gramps represented:)

I've never seen Super Mario look better!

Speaking of Halloween, we went Trick-or-Treating for the 1st time this year! After the 1st house Judah knew exactly what was going on! He had so much fun being like one of the big kids, going from house to house, picking treats from the bowls & dropping them in his bucket. It was awesome to see him doing so much walking between houses, and walking with one of us up to each door. He had a big smile for every person that gave him candy...although he still has no idea what it is! Not sad about that.

Eli was our resident mechanic (like Gramps), we had a celeb visit from Taylor Martinez, Lydia provided dessert, & of course, Mario:)

She stuck pretty close to him all night.

Judah learned "Where Is Thumbkin" last week at school. Oh my gosh, just when I thought he couldn't possibly get any cuter... He has added it to his repertoire of songs he "hums" throughout the day. I am having so much fun with him!

Judah LOVES Ollie! I'm not sure the feeling is always mutual; but Judah is oblivious and utterly devoted. When he gets off the van after school he has a smile for me, but the 1st thing out of his mouth is always "Ollie"! He's been going through a tough bedtime phase. Last night, for the 1st time, we put Ollie on his bed with him when he was upset, trying to settle down. He got quiet right away and went to sleep, in spite of Ollie's wiggling. I think it's time to train Ollie to go to bed with Judah.

Judah has a new word: "hot"! Whenever I put something hot in front of him at the table he says, "Ha, ha" and blows. We're also working on some new signs. "I'm sorry" is at the top of that list...for all the times he hits his sister to get her attention. At least he's genuine in his apology!

A few things to pray about:

1. Judah has had elevated blood pressure from the beginning. In the last 18 months his endocrinologist and I have talked about it on and off. Last week he recommended taking action, since Judah's BP is consistently in the 95th percentile. We saw the ped. yesterday, and Judah's BP was actually higher than mine. That's not really unusual for him, but it's high for a little kid. I will be monitoring his BP from home over the next 4 weeks, and then he will most likely join a BP clinic at Children's and go on a blood pressure medication. The tricky thing about Judah is that, because of his kidney disease AND his pituitary disease, there isn't an ideal med. for him. He'll need to be watched closely for quite awhile. I'm sad about adding a medication, but it's the possible side effects that concern me. The high BP is probably because of all of his kidney problems, so my hope is that once he's had some repair there, the BP will drop on its own.

2. Next week Judah has 2 huge clinic appointments. On Tuesday we spend the morning in clinic with his cranio-facial team. I think we're seeing 6 specialists, including his geneticist. I'm looking forward to seeing her! It's been over a year since she's seen Judah. I know she'll ooh and aah over him:) On Thursday we spend the day at Children's in urology. I'm already very apprehensive about this one. Judah will be uncomfortable at best for most of the day. Some of this clinic will be downright painful. It breaks my heart; and as he gets older it only gets harder for him. I've downloaded some apps for him on Jared's ipod in hopes of being able to thoroughly distract/entertain him, since he's not allowed to play with Dad's ipod at home. It's just icky. Icky.

I really appreciate your prayers for Judah as we head into next week and this particular clinic especially. I'm also praying for good reports all around from both clinics...although I'm not entirely sure what a good one would be at this point. Even neutral news, without any bad news, would be good. *sigh* I'm so glad God goes with us. I couldn't do this without His sustaining love and faithfulness.