It Never Gets Easy

As I sat on the ground this morning cradling sweet Ladybug after a fall seizure, during which she hit her chin on the table on the way down, tears flowed from both my eyes and hers. She didn't say anything - she just looked into my eyes with little girl tears running down her face onto the ground and a giant bruise already forming on the bottom of her chin and knees. I tried to find the right words to remind her that she wasn't being carelessly clumsy, but that the great seizure that had taken her down this time couldn't be predicted or prevented. It wasn't her fault, and that even though we had just prayed thirty minutes earlier that God would keep her seizures away and heal her brain this morning, that He had chosen to answer differently than we would have liked. But that we trust Him all the same.

The Bible reiterates over and over how hard times strengthen our faith and to count it all joy as we face trials of various kinds.  It is easy to read and say, but so challenging to live and believe as your hold your baby on the floor after what was possibly her 300,000th seizure. (Not an exaggeration...I just did a quick calculation. If anything, I have guessed on the low end.)  When I'm rocking and squeezing my son as his body trembles from yet another nightmare for an hour straight. When we sit in the hospital and listen to doctors give us bad news yet again about one of our precious children. When people who know a little about my life say, "I could never do it."
Little do they know I can't either.

I believe firmly that we should research what we think to be true and examine all different points of views. We should always be ready to give a defense for what we believe. But there are times when faith has to surpass understanding. I seriously don't know how anyone makes it through life without the firm foundation of Jesus Christ. I would be without hope. He is my rock and my strength when I have nothing left. There are times that despite my constant study and prayer, I don't understand. There are times I have to let faith fill in the gaps between my human comprehension of a situation and God. There are times I have no choice but to trust Him and His ways, even when those ways aren't mine.

But thank goodness they aren't mine. If there's anything that I've learned, it is that we are very similar to my own children. We ask for things that we think are best, and our loving Father says yes or no based on the bigger picture of what is good and healthy. Panda would forego his nightly injection if given the choice, but what kind of parent would I be to deny him the health and greater gain for a short-term reprieve? And so I will trust my Father despite my lack of understanding.

For my thoughts are not your thoughts,
neither are your ways my ways, declares the Lord.
For as the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.
Isaiah 55:8-9

So I will keep on praying, asking for prayer, and trusting. Watching my children suffer is the hardest, most helpless challenge I've ever had to do endure. I have seen trials, but mornings sitting on the floor holding my baby after yet another seizure truly tests my faith and my endurance more than anything else ever has. But I know that God promises that in my weakness, He is strong.

I say all of this partly because I needed to hear it yet again, and partly to share the encouragement. We all face trials and our faith and endurance are stretched beyond what we feel possible. We get just plain tired.

In the end, is it all worth it?
Yes.
A thousand times yes.

Despite the hard days and the mentally exhausting hours, I would do it all again in a heartbeat. I'm so thankful God doesn't do things my way.

1.5 Year Mark - Our Feisty Fella

It has been a year and a half with our special guy! The Duke and I were looking back at pictures and videos of him a year ago and were blown away with the changes - physical and personality. He has grown so much. Check this out- a side-by-side of his baseball get-up. You can just see the change in his face! (Yes, exact same shirt and hat from a year ago!) His dependence on Mom versus his newfound confidence are also evident in the two photos. It used to be tough to catch a photo of him not being held. Today he runs and plays all by himself!

Oh, this is too fun. Let's do more.

A year ago a moment when he would allow Dad to hold him was rare and exciting. Now, as soon as The Duke gets home from work, wrestle time has begun! Panda has so much more confidence in his relationship with each of us. He is willing to separate from Mom (when at home) and is no longer intimidated by Dad. He soaks up every moment with his Daddy.

Sibling love? Still awesome. A little more disagreeing than before as he has found his little voice and opinion, which is a good thing. 

Mr. Panda has gotten extremely funny and feisty - even more than before. Man, that kid's sense of humor is amazing. He loves playing jokes on everyone, and it is just about impossible not to laugh!

Funny story: We had just boarded a plane on our way to visit my brother and his family, when I looked over at Panda and Ladybug. They had both casually taken the safety brochure out of the pocket and were intensely studying it. It wasn't long before Panda yelled (he has no low volume) "Mommy Mommy! Look! The airplane is going to land on the water! Yay!!!" Quite a few of the surrounding passengers stirred. Haha! I answered with a simple, "No, buddy, hopefully not. We will land on a runway." It took a while to convince him.

Quick list of updates:

Growth: Thank God for modern medicine! Our little guy has grown 4 inches in the past year since beginning his treatment. He is still wearing 12-18 month clothes, but the 12 month shirts are beginning to get tight! His feet have grown 3 sizes already. So get this - one of his favorite things in the world is shoe shopping for himself. I hadn't even thought of this, but he's been through multiple seasons of shopping for Ladybug but never himself. (Because he hasn't been growing.) When we finally went to buy him a new pair of tennis shoes, he was beyond excited! He ran up to each person in the store to show them his new shoes and then proceeded to do a very touch-down-esque victory dance. I can't wait to see his reaction one day when we take him shopping for actual clothes. 

Sleep: Still in his Panda Cove in our room, but he is consistently napping upstairs in his own room. This means that during the day he now feels confident Mom isn't going to leave! We are constantly working to build that feeling of safety. His nightmares are always dependent upon what he is currently experiencing during the day as his anxiety manifests itself in his sleep. A couple of weeks ago he had a traumatic doctor's appointment, and thus a few weeks of nightmares. 

Language: Panda is becoming easier and easier for others to understand as his pronunciation is improving. I would venture to estimate his language skills are similar to that of a young 3 year old - full sentences but still a struggle to comprehend for people outside of the family. But due to his age his word choice is unusual for his size. It's hilarious. I went to wake him from a nap and I got a "Oh, hello Mother! Nice to see you." Yes- he calls me Mother sometimes and thinks it's the funniest thing in the world! It kind of is. He has great comedic timing - he doesn't overuse it and waits until it is least expected. 

Physical Development: Panda runs, climbs, and jumps like a wild animal! He's so energetic and adventurous and loves to be as active as possible. Most of the time you'll find him running around the house singing at the top of his lungs with some sort of toy in hand. He has become less sit-with-mommy focused and more play-and-explore focused these past few months. To the point that I will pick him up and he'll wiggle and ask to be put down. This is enormous for him - and a proud moment for this mom! I wish I could insert a play picture right here, but they always just come out as a little blur across the screen.  

Panda has received more responsibilities around the house as he's gotten older, and he takes a lot of pride in it. He loves being a part of the family and contributing just like everybody else. He sets the table, helps put away laundry, and cleans up after he eats. We have figured out a way to move all of the kids' dishes to where he can reach, all of his clothes are within reach on the ground, and we keep a stool by the sink for just this purpose. It has given him an amazing sense of belonging and purpose, so we work hard to accommodate him and anything he needs. 

Three words that would wrap up this month with Panda are rambunctious, inquisitive, and mischievous. He's on the go, and you never know quite what he's up to! He almost never crosses the line into actually getting into trouble. He more just flirts with it, and you gotta respect that. I love his spunk.  

My Hair Might Fall Out

It’s so easy to focus just on the amazing parts of parenting and adoption, or even to just focus on the hard parts. But most of the time the two collide and are simultaneously present.

Allow me to paint a picture:
Ladybug has had a rough month of seizures, on top of a large amount of specialist appointments and procedures. Panda had a traumatic appointment last week when a doctor did a biopsy and stitched him up with no anesthesia. (A very long story, don't get me started). The subsequent effect on him has been quite a bit of regression with his anxiety and paranoia that Mom is going to leave him. Cue the frequent nightmares and the need for Mom's presence and attention almost every minute of the day. And poor Ladybug is about done not being able to be independent - needing help with the restroom, needing help to get a toy or a marker to draw, etc. And Mama is run ragged physically and mentally after so many appointments, procedures, 3 weeks of constant seizure-care, midnight comforts for Panda, and the emotional kiddos that are the result of all of the above.

So this morning I woke up at 5:15 to spend some quiet time in prayer and reading the Bible with my latte. (Yes, I totally still do this when I'm up all night. I've tried sleeping in another hour, but I've learned I'm just in a better mental place if I wake up and spend and hour with God instead. It's counterintuitive, but so true for me.) This particular morning one of my prayers was for the Lord to lead me in my parenting today - for an opportunity to really show my kids God's love and live it out. Sadly, in our recent chaos I had been less than graceful.

Ladybug and The Duke returned home around 7:00 a.m. from her sleep study at the hospital. If you've ever had an EEG, you know there's some major hair mess going on there.

So as soon as she was fed, we went straight to the bath to begin the 30 minute process of cleaning all of the glue out of her hair. She was incredibly emotional (lack of sleep and exhaustion from the anxiety of the whole ordeal) and everything set her off and caused a melt-down.  Panda was a whole new level of anxious with her and his Daddy being gone from evening until morning and not understanding any of it. His anxiety presents itself more quietly but more concerning - when he goes quiet you know that he's losing it. I usually find him in a corner rocking himself violently.

I was kneeling by the tub attempting to sooth Ladybug as I worked the glue from her hair and was giving as much attention as possible to Panda as he was desperately clawing at me from behind, when my phone rang. It was one of her specialists trying to have a deep conversation about something of concern they found. I had the classic mom position going - hiding in the closest closet, phone on one ear and finger in the other, scrambling to find a pen  to try to scribble down some of the medical terminology I didn't understand and to write down the appointment they wanted to schedule. After hanging up, I quickly texted The Duke the important update, and hurried back into the bathroom. Neither kid was thriving: Ladybug was exhaustion-crying (is that a thing?) in the bathtub covered in sores and spots from all the electrodes the night before, and Panda was rocking himself, freaking out because I stepped into my closet to answer the doctor's phone call - without him! Might as well have just left the planet...

It was about this time that it hit me - this was my opportunity. This was the opportunity I had prayed for - to parent them. It is easy to be a loving, patient parent when everything is going smoothly. But it's the moments like these, when chaos is happening and my mind is tempted to be distracted or overwhelmed, when what I say and do as a mom really matters. These are the moments that have the largest impact on my kids - this is what they will internalize. Think about it - what do you remember best about that friends you treasure the most? How they were with you through the good times, or how they supported you during the hard times? What an unexpected but beautiful answer to my prayer this morning - I had asked for an opportunity to show my kids who God is and what love looks like. This was my chance.

I took a deep breath and focused on the moment and meeting their current needs. No, Ladybug didn't calm down much. Yes, Panda was still totally not okay when I was blow-drying Ladybug's hair later and not playing with him. (see picture below) But I was the eye in the storm. I loved them and guided them and explained to them as much as I could as we finished up the process. In the end, I got Ladybug to sleep in time well before the big appointment we had at 11:00 am and got Panda a nice, long Mommy cuddle with hugs and eye contact. God helped me to refocus mid-chaos.

Parenting our children through the tough times is what parenting is all about.  I loved this ah-ha moment today - the word that kept repeating in my brain was "opportunity." I had the opportunity to share God's love with my family.

• Panda melt-down = opportunity
• Sitting on the ground, holding a crying Ladybug after a seizure = opportunity
• Having a  (respectful) confrontation with a doctor with the children present = opportunity
• Breaking up a sibling fight = opportunity 
• Working through therapy when Ladybug refuses = opportunity 

Adoption is hard, in the big moments and in the small day-to-day life, like today. 

But aren't the best things in life usually the hardest? 

Anything worth having is hard. So praise God and bring on the "hard"!

7 Ways We Have Learned to Deal

One of the things I think hits parents who adopt smack dab in the face is the medical life that comes with adopting kiddos with, well, medical needs. It is difficult to describe to someone who hasn't experienced it, and how it takes over every aspect of your lives - waking and sleeping. There is almost no such thing anymore as a "full night's sleep" or a "normal meal." Those every day parts of life you didn't realize you took so much comfort in is all swept away when you have a child with medical needs.

I was recently speaking with a mama who adopted a sweet little girl from China. This was not an inexperienced mom - she already had three children prior to the adoption. It isn't like she didn't understand what raising a child entailed. But what I heard was exhaustion and burn-out. Where was a single moment in which to rest? Days were spent juggling doctor appointments, therapy appointments, lab appointments, hospital stays and procedures, insurance phone calls, pharmacies, unique dietary needs, therapy needs, medicine schedules, oh! and the intense emotional trauma that came along with adopting a child who had been living in an orphanage for years. Head, explode.


It is easy to lose yourself in your baby's medical life. In fact, it seems impossible not to. You go into a special kind of survival mode. One slip up, and your baby is on the floor seizing.  The stakes are high. You have to be on your game all the time. There is no room for error. Life is hard enough when you aren't making mistakes.

How does a marriage survive? How do siblings survive? How do you survive?

I don't have the answers. I've only been at this for about 6 years, so in most ways I'm still quite the novice. I love meeting with parents with kids with special needs or medical needs that have been at this for 10, 15, 20 years. They are my heroes. So full of wisdom, peace, and joy. Seriously! Every one of them. How the heck do you get there?

From my short stint in this medical world, here are a few of the things I've learned. For those of you reading this who know so much more than me, please feel free to add a comment with your suggestions!

1. Always be honest with your kids.
Even with your biological child, trust between a parent who takes you to these painful, invasive appointments, and a child who doesn't understand why they are being tortured, is strained and even nonexistent. My one-year-old daughter had extreme anger with me after undergoing a horrible medical year and wanted nothing to do with me. Building a foundation of trust in the midst of all of this is a very difficult endeavor, especially when trying to bond with your adopted little one.

Never trick a child into getting into the car with you to go to a doctor's appointment. Never tell a child during a blood draw "almost finished" when it isn't. Never tell them something isn't going to hurt when it will. Be very open and honest with them, while providing comfort and love. Something along the lines of "Yes, this blood draw will hurt. If you are able to hold still, it will be over faster. But always remember that I will be right here with you the entire time either way. I will never leave you, and I love you always. We are in this together. Do you know what I do when I'm afraid? ..."

I have even had to correct well-meaning nurses and doctors on this one. They feel horrible when they are doing a procedure that causes fear and pain, and they tend to say things like, "It doesn't hurt! You're okay! We're almost finished! Don't cry!" I will then step in (usually at a yell because the child is screaming) and say, "No, baby. It is not almost finished. It has only just begun. It is going to be another few minutes. I've got you though. I'm right here. It's okay to cry. I know you're afraid and it hurts."

Build that trust and eventually your child will come to believe you when you tell them that this test won't hurt. They will come to accept you as their protector who loves them and wants to do what's best for them. It takes years, but in the long run this is so much healthier than the short-term easy lie.


2. Role play
Kids have to process, and a lot of times they don't have the verbal skills or the emotional maturity to be able to talk things out like we do. What they use for emotional processing is play. It's counterintuative - if the thing your kid fears most in the world is an EEG, why would I play EEG with them at home? It is seriously their way of processing things and is incredibly healthy to do. Of course you'll have to be sensitive to their emotional needs and not push them into anything. Ladybug was so fearful of EEGs at age 1 (and 2 and 3) that if you even tried to touch her head she'd melt-down.  However, it was interesting when I showed her how to do an EEG on her Pooh stuffed animal. Suddenly, she wanted to participate. It opened up a whole new world for her as she tried to work through what was going on and really helped take some of the power away from that fear. Here's some pictures of Panda's new favorite game - drawing everyone's blood.

It used to be shots when we began his injections last year - you never knew when he was going to sneak up on you with an object that resembled a syringe and stab it into your leg! I'm not going to lie, it was creepy. (But healthy.)

3. Schedule phone time within your day and train your kids
This one is hard. One thing a parent new to this medical world may underestimate is the time spent on the phone with insurance and billing departments. Both are constantly making mistakes. Or being stupid. Or both. And pharmacies. Hours a week will be spent on the phone with them. Just accept it now. I highly recommend planning a system for these phone calls. In our situation, we spent time training Ladybug to not run a muck and act out when Mom was on the phone for two hours fighting with people. So we had to role play it. I had to practice with her when it wasn't an important call and apply immediate consequences and rewards. As she got older we practiced doing quiet activities in a separate room. Sometimes I'll try to put on a movie I know she'll sit down and watch. Now that Panda is here the training is back on. I have to physically block out times on my schedule when I will make these phone calls and then prepare accordingly. My calendar looks something like this:

(Don't mock my scheduled art time. I am just not a creative person and if I don't schedule it, it won't happen!)

4. Take photos and videos when possible
This goes along with role playing in with its mental health aspect. For those of you who have heard of a social story, this is similar. Take pictures of your doctors (with permission of course! Don't be creepy.) If there is ever a happy moment during a check-up or a procedure or a hospital stay, capture it on camera! Letting the kids look through pictures and use them to help tell their story helps heal. Plus then I use them the next time around to remind them of an upcoming appointment social story style. It also helps them remember that there were times that they actually weren't screaming.

5. Schedule time for play everyday
It is so easy to get so wrapped up in running from appointment to appointment, keeping kids fed, making sure medicine is on schedule and refilled regularly, and completing their therapy at home that play seems to fall into the background as unessential. Or even a time for Mom to clean the kitchen.  But play is essential for brain development and bonding. As mentioned in #1, bonding with your medically heavy baby is crucial.  I highly recommend the book Play: How it Shapes the Brain, Opens the Imagination, and Invigorates the Soul by Christopher Vaughan. It completely changed my outlook on the essential nature of scheduling play time. There also is a book sitting on my shelf to be read called Fun Games and Physical Activities to Help Heal Children Who Hurt. Hopefully it will provide some practical advice. I'll let you know once I actually read it!
This can be something as simple as allowing your little one to dress up as a doctor and give their specialist an exam at their next appointment. This one makes me laugh every time. The doctors don't mind at all! They love to play along.
Or as extensive as finding a little grassy knoll outside the medical center to picnic between appointments and letting the kids run around for thirty minutes. Run with them! Laugh with them. Enjoy those little moments - they'll get you through the rest of the day. And them too!

Elmo always gets his blood drawn too.

6. Find another parent who understands 
It is like food for your soul to talk to another Mama or Dad who gets it. The ironic part about this is that these other medical parents also have incredibly demanding schedules and getting together almost seems impossible at times! Schedule far in advance, don't give up when you have to reschedule. Play dates, let's face it, are tough while we are all dealing with our children's unique needs. You need adult time. Time to be honest or broken or celebrate a win - just being yourself. Not on your mom-game.

A few suggestions if you don't know where to start - find a Facebook group unique to your child's medical need. Find a church nearby - it is becoming more common for churches to have parent support groups with special needs kiddos. Begin asking around - ask your child's therapists, ask other parents in waiting rooms at your appointments.  Once you actually find a support system of like-minded parents, you won't be sorry for the effort of the search.

7. Don't quit praying.
This is far trickier than I ever thought it would be. There's a fine balance between accepting your new situation and rocking it, and never ceasing to pray for healing and miracles. I'm still learning this one - it's a challenge. When you pray fervently and emotionally hour after hour, day after day, week after week, for months and years, you begin to think the Lord's answer was just a hard "no." But the bible commands us to pray and assures us that prayer matters, so just because Ladybug is still having seizures after 5 years doesn't mean He isn't hearing me or that His answer was no. It is my job to have faith and never stop praying in earnest, and the rest is out of my hands. Prayer is essentially our only weapon in a situation that we have absolutely no control over (no matter how much we may try). I recently read two parables Jesus shared about being persistent in prayer, which my weary soul needed so much.  This one was completely new to me:

And he told them a parable to the effect that they ought always to pray and not lose heart. He said, "In a certain city there was a judge who neither feared God nor respected man. And there was a widow in that city who kept coming to him and saying, 'Give me justice against my adversary.' For a while he refused, but afterward he said to himself, 'Though I neither fear God nor respect man, yet because this widow keeps bothering me, I will give her justice, so that she will not beat me down by her continual coming.'" And the Lord said, "Hear what the unrighteous judge says. And will not God give justice to his elect, who cry to him day and night? Will he delay long over them?" 
(Luke 18:1-7)


I don't think I am at the joy and peace level of those other parents I look up to, but I have noticed a trend that I'm much more that way than I was 5 years ago. Thank the Lord! So if you are brand new to this world, hang in there. It gets better. You adjust to your new normal in ways you never thought you could. You get stronger. The bible says the Lord provides the strength and wisdom to those who ask, and so I'm learning to ask.

Panda Update - 1 year and 4 months

Since we hit the year mark of Panda being home, I haven't been updating regularly - mostly at this point changes are coming slower and healing is more long-term and less obvious in the moment. BUT...here is the latest!

Eating: Our little guy is finally beginning to open up to trying new foods. This is huge when it comes to his health. He's even allowing me to make a green smoothie in the morning to go alongside his eggs, so as to make sure he's getting some leafy greens. I literally took a picture of his plate the other day at lunchtime because it was so beautiful to finally see a plethora of different food groups all on his plate being eaten! Proud Mama over here.

As a side benefit, it has really helped to make our daily lives a little bit easier. Between his fear of foods and yet a constant fear of hunger, Ladybug's medical diet, and my medical dietary needs (which differ a bit from hers) I was making 3 separate meals every time we sat down to eat!
It was definitely a full-time gig. It may be why Panda lovingly dubbed the kitchen "Mama's Kitchen."

 

Panda's first American hot dog. I felt it needed to be documented.

Drinking: Panda is finally drinking fluids throughout the day and even has begun to ask for water when he's thirsty! It makes me laugh to think of the random things we are so thankful for, like our littles finally drinking enough water to keep them hydrated.

Sleeping: He's back in our room in his little panda cove. He sometimes naps upstairs in his actual room in his "big boy bed." We just keep praying that he will eventually want to move there, but we don't want to make the mistake we made last year of pushing him before he's ready. He's healing so much where he is right now, and we don't want to disrupt that process. His nightmares are few and far between these days, and it is much more likely for him to wake us while laughing in his sleep than it is screaming. And if you've ever heard a Panda laugh, you know that it's hilarious!


The Great Outdoors: Whoa!! This is an area that is like night and day from April of last year. Last April being outdoors exhausted our Panda physically and mentally. The sensory input from the wind, the brightness of the sun, all of that strange grass and dirt, the unknown sounds of birds and airplanes - it was all just too much for the little guy. He'd go outside with us, terrified to be set down, and then after 20 minutes go inside and pass out for two hours as he tried to recover.
Today, he willingly walks outside, in the grass, barefoot, to feed the ducks when they come by our house each afternoon. What a transformation! I love that he is learning to appreciate the beauty of the world around us.

Speech/Language Acquisition: While Panda's vocabulary is expanding on a daily basis, his pronunciation improvement has come to a stand still. The doctors thought he needed tubes in his ears, but it turned out he didn't - he just has abnormally thick ear drums, which means they don't vibrate properly. Ladybug's speech therapist has been talking with me about him lately and it looks like it won't be long before he's in speech therapy. He struggles producing certain sounds and his speech has a nasal quality, which points to more serious issues. We shall see! But none of this has stopped our little chatterbox. Learning English has come easily to him, and he speaks constantly in full sentences. He pretty much has a running monologue from morning to bedtime. It definitely earns us quite a few looks every time we are out and about as people wonder why the one-year-old is speaking so well! ha! It makes for fun conversation.

Growth/Age: Our Panda has grown almost 5 inches since being home with us. He receives a growth treatment daily that we administer through injection. I have had to overcome my extreme discomfort with needles - you can literally do anything for your kids. And he's thriving! His endocrinologist is impressed with how well he's responding to the treatment and has high hopes that he has plenty of time to catch up. He still wears 12-18 month clothes, and is most likely (according to doctors) between the ages of 4-6 years old now. We will probably never know his actual age or birthday. That really bothered me at first, but over time I've come to terms with it. In all reality, what does it matter? He has a legal birth date, and we are just planning to stick with that. Not knowing one's age or birth date makes one no less precious or valuable as a human being. His Creator created him for a beautiful purpose and values our Panda beyond measure, and I pray that he takes comfort in these facts as he ages and begins to understand the confusion.

We celebrated his fourth birthday at the beginning of this year surrounded by family. Panda was in heaven! He wanted an airplane birthday as airplanes are totally his thing. His imagination is incredible and at any given time you can pretty much guarantee he is flying a toy airplane around the house, is an airplane himself, or "reading" a book about airplanes.

His love of airplanes comes in handy as we seem to be constantly on one.

He's just too cool.

Panda is rocking it at life. It hasn't by any means been an easy process and there are more challenges ahead, but every moment has been worth it to be able to finally hold my son and love him.

Educating our Children

Why discuss this? How does this relate to adoption? I think the number one thing we are learning throughout this process is to be incredibly flexible. Those of you who know me know that flexibility isn't my strong point! But when it comes to meeting your child's particular needs, that sometimes means going in a completely different direction than you ever thought you could.

I am a certified elementary school teacher and taught in public schools for five years before staying home with our Ladybug when she was born. And I loved it. I mean really loved it. I loved the kids, I loved the day-to-day life, I love just teaching. I still miss my babies I got the amazing privilege of teaching what now feels like a lifetime ago. I really hope to go back some day.This is probably why the decision of where to send our kids to school was so agonizing for me to work through throughout the past few years. I always imagined my kids attending the same school at which I taught, hanging out in my classroom after school doing their homework and playing while I wrapped up the day.

But life likes to throw curve balls at you, and I, being the least flexible human being on earth, have had to learn how to go with the flow.  My priority is to do what is best for my children, even if that doesn't align with what I originally planned.

Our Ladybug has a few diagnoses, but the two main issues we are dealing with is epilepsy and Pompe Disease.  We are very blessed that the Pompe now has a treatment - for this we are incredibly grateful. The bad news is it is a life-long treatment that basically changes everything.  She will have to take a full day out of every two weeks to do her blood infusion treatment indefinitely.  She will have to have a port surgically inserted into her chest to which the treatment will hook up, and as she grows she'll have to continue to have surgery to change out the port that apparently will need to grow with her. She will also have ongoing respiratory therapy, physical therapy, speech, and occupational therapy. Also, from what I understand, the days leading up to the biweekly treatments are a little rough as the patient can be excessively tired and  not feeling well as the body is in need of the next treatment.

All this to say, between the Pompe and her rough seizure days, the Duke and I, along with doctors and therapists, have decided full time school is not the best fit for our Ladybug. She would have an average of one absence a week, which when you are already developmentally behind and needing extra help, sounds like a disaster waiting to happen. We have spent the past three years going through our options, touring schools, and talking to experts. We have attended conferences and meetings, contacting other parents and learning what others have chosen to do. We have finally come to the conclusion that we need to explore a part-time school program.

Luckily for us, university-style schools are popping up all over the place in Texas. This is a full-week program where a student attends the school classroom for two or three days per week. The parents take over the education at home (aka the satellite classroom) the other days of the week following the school-provided curriculum. Considering we spend so much time doing school-like work at home already, this option seems to fit. We can pack up school to take to the hospital with us every two weeks, hopefully learning how to fit the treatments into our everyday lifestyle. We believe this to be the most emotionally healthy route to take for Ladybug, as well as the most educational route that will leave the least amount of holes.

What about Panda? Well, Panda is still four years old, and if I've learned anything, it is to keep our options open!  Right now, it appears a part-time school will also be best for him, at least in the beginning as he learns to be away from the family and from Mom. He is still dealing with his abandonment and healing from some pretty intense trauma. He is also catching up in a major way with his speech and language, so some extra one-on-one time definitely won't hurt. When it comes time, we will make a decision that we feel is in Panda's best interest, whatever that may look like.

On a personal note from Mom's point-of-view...

The original plan was  for me to go back to teaching when the kiddos got old enough to go to school. I'd be lying if I said there wasn't a part of me that was disappointed, although in a way I suppose I am still going to be teaching.  Considering everything that has happened in the past six years (I'm including my pregnancy in that time frame), I have had to put my personal desires on hold to tackle what life has thrown at us. As a mom, of course I do this with love and joy, as we all want what is best for our children! But that's not to say it hasn't been a sacrifice. Teaching was my thing. I loved it. Every single part. I miss my kids I used to teach more than I can express. I still pray for them often. They are constantly on my heart and my mind. I loved getting up in the mornings and going to work, and I was very much looking forward to returning to my job in the classroom.

All that being said, because I do love to teach so much and have such a longing desire for it, I can't help but to watch this transition in our lives with interest and excitement. What on earth does God have in mind for me and our family in the upcoming 14 years of school for our kids? I have a feeling that my continued desire to be in the classroom and teach is there for a reason. I enjoy teaching my littles very much, even if it isn't an entire classroom of kiddos. I love instructing Ladybug and Panda to read and write and think. My joy overflows and it spills out onto the kids. They beg me each day after breakfast to go into the "preschool room" and work. They are both little sponges and they soak up my enthusiasm for those teaching moments. 

Panda has finally learned to sit and listen and focus. (This took about a year to teach him.) Once that was learned, his learning has exploded! He's not only learned his alphabet, but his phonics, counting, shapes, puzzles, etc. I can't seem to teach him fast enough. He craves it all! And Ladybug finds words while reading her books and begs me to add them to her sight word repertoire. She squeals with glee when it's time to practice handwriting, as challenging as it can be for her. They are both little eager students.

Falling into a university style school seems pretty natural for us as a family as it is basically something we are already doing. It will just be strange now to be given a curriculum to follow. (I'm sure I can always add my own flair!) Say a little prayer for us as we try to choose a school that will not only meet the kids' health and emotional needs, but that will be willing to take on a different family with unique challenges.

Just a few pics of the kids being adorable and learning at home...

 Valentine art

Working on those scissor skills!

 Geometry 

 Pencil grasp for Panda and handwriting for Ladybug

Building her spacial reasoning skills like a boss

 Letter Recognition

Proud moment with a puppy photobomb 

Celebrating the number 80

Painting on a beautiful day!

We seriously have so much fun learning at home that I don't know what to do with all of our pictures and videos. One day I'll figure that out! In the meantime, we will just keep using that time for bonding and loving on each other in the best way we know how. 💓