Levi Check-In: November 2015

It has been 4 months since Levi started going to Easter Seals and receiving full time therapy there. In a typical week, he goes from 9:30-5:00, four days a week, and receives Speech, Physical and Occupational therapies once a week each (he was prescribed twice a week but because of stupid insurance, we can only afford for him to do once a week). PT was something that we added on in September at the recommendation of his teachers and his pediatrician, because he was still falling a lot and wasn't walking very well. As of today, he only falls 2-3 times a day (as apposed to 10+) so we have seen huge improvements since placing him in PT during the week!

From the very fist day that we signed Levi up to attend Easter Seals, we doubted greatly whether it was the right thing to do. To be honest, since Levi's official diagnosis in June, we have felt like we were picked up by a tornado and never placed back down. Although his Autism diagnosis itself was quite overwhelming, I think the hardest thing we have struggled with so far has been making decisions. As I am sure with most medical concerns, there are about a million different types of therapies, intervention plans, and organizations surrounding Autism. There are also about a million differing opinions about what works and what doesn't. And frankly, all of the different therapies seem pretty hostile towards other types of therapy. So here is a little sample of  how my and Mitch's conversations have gone the past few months:

Amy: Let's just try __________ therapy.
Mitch: That's what I was thinking until I read that this organization says that therapy will cause PTSD.
Mitch: Why don't we go with _________ program instead.
Amy: Hmmm. Looks really good, but then this organization says that therapy will never help our child to fit into the world around him and he will end up having no quality of life.
Amy: Also, this study says that we have to get our child in an intense therapy program by age 2 or he most likely never talk.
Mitch: ........................... (bangs head on table repeatedly)

Levi learned how to go down a slide by himself! (Thanks PT!)

Okay, so maybe the headbanging was me. Point being, all of the options have been extremely overwhelming. However, after praying and consulting a lot of people, we decided to just jump in and place Levi at Easter Seals and hope for the best.

For the first 3 months, Levi screamed and clung to me as I dropped him off in the morning. He had to be pried off of me, limb by limb, every. single. morning. For those 3 months, I walked around with a pit in my stomach wondering if he was trying to tell me something. However, since Levi is nonverbal, we just had to hope and pray that the Lord would assure us that Easter Seals was the right place for him and that he was being well cared for. And do you want to know what the Lord said?

Nothing.

For those 3 months, the Lord didn't answer us. In a culture where you can have anything and everything immediately, silence from the Lord on this subject was HARD. However, it was also GOOD. For 3 months I was forced to trust. For 3 months I was forced to individually dig out fears that had embedded themselves so deeply in my heart and give them to the Lord. And for 3 months, we saw no improvement with Levi.

BUT GOD (Don't you just love those life moments?)

But God, finally in His perfect timing, assured us a thousand times over. In the past month, we have seen more improvements in Levi than we have seen in the past year almost. Not only is he no longer crying at drop off, but he is actually happy to be there. His teachers said that he has gone from sitting and playing by himself, to interacting and running around with several of the little boys in his class. He has also started interacting more with his cousins at home. (As per Lucas, Levi sat on him this past weekend... does that count as interacting?)

In addition, Levi has started playing with several toys appropriately. Where he use to take a toy car and just throw it or spin it upside down, he is now rolling it back and forth on the floor and walls. He has also started "following the light" on his play drum set and playing along with the songs it sings (rather than just throwing it on the floor so it will light up). And last, but certainly not least, Levi has learned how to kick a ball!

Up until a month ago, we never read to Levi because it would result in a huge tantrum. He absolutely loathed reading because the words just confused him and he couldn't understand. However, this past month Levi has been bringing us books (okay just the same few books over and over and over again) to read him, signing "more, more, more!" (His favorite books are Sandra Boynton books, particularly "Pajama Time" and the "Belly Button Book") For a mommy who loves to read, this has been SO special for me.

Although all of these improvements are great, the most amazing (and shocking) improvement we have seen lately has been with Levi's signing. We started him in speech therapy in February of this year. It wasn't until the end of May that Levi finally learned one sign, "more". As of the end of October, "more" was still the only sign that Levi would use. Because of this, Mitch and I were pretty ready to quit with the attempts to communicate with Levi via sign language. However, this past week, Levi started signing "please" and has now starting even signing "more please" together! THIS. IS. HUGE. And we are so thankful and excited.

All of these things have happened because the Lord is using Easter Seals to do wonderful things in our son's life. We are relieved, grateful, and in awe of the many ways that the Lord is assuring us in this journey. Thank you so much for those of you who have been and continue to pray for Levi's development! The Lord is answering prayers, but more importantly, He is showing us how to more like Him and less like the world.

Lucas: 0-3 Months

I think this has been the fastest 3 months of my whole life! When Levi was a newborn, plagued with with a terrible case of colic and reflux, every day felt like 1,000 years. When he turned three months old I remember thinking "Only 3 months?! Surely you are at least 9 months old." But with Lucas, time seems to just fall through my fingers no matter how hard I try and hold on to it. Now, some of this is probably because we are so busy lately. However, I think a lot of it is because Lucas is SUCH a good baby.

Lucas came home from the hospital sleeping 4-5 hour increments at night. By 1 month, he was sleeping 6-7, and by 2 months he was sleeping 8-9 hours at night. Mitch and I have treated Lucas exactly how we treated Levi at his age. Levi woke up every hour until he was almost 7 months old and yet Lucas slept 9 hours in his crib every night this past week. What I'm trying to say is, I have absolutely no parenting advice or sleep advice! The Lord blessed us with a terrible sleeper the first go around, and He blessed us with an AMAZING sleeper this go around (and we are SO grateful that He did!) There are a million reasons why I am so thankful that Lucas is good sleeper, but the main one is that I went back to work full time when he was 6 weeks old. There have been a lot of really hard things about going back to work so early, and I am so thankful that I wasn't having to function on no sleep on top of everything else.

Our friend Paula came to visit!

In addition to being an amazing sleeper, Lucas is incredibly laid back and happy about 80% of the time. This is another blessing from the Lord that I did not deserve but I am so thankful for! When Levi was diagnosed with Autism in June, I started praying begging the Lord to make Lucas an easy baby. Between having a (newly diagnosed) Autistic 2 year old and both Mitch and I working full time, I was terrified of adding a colicky newborn to the mix. Thankfully, Lucas is as far from grumpy as they come! Although he does have his fussy moments, all in all he is really the happiest baby.

Lucas smiled for the first time at 5 weeks and has smiled every day since. Most of the time, all you have to do is look at him and he will immediately grin back. At around 9 weeks old, he started giggling and has now developed a pretty cute little laugh. Currently, his favorite things to laugh at are fake, exaggerated sneezes and Daddy's high-pitched helium voice. So if you see me in public, I do not, in fact, have a cold. I just have an adorable baby with heart-warming laugh that I need to hear all. day. long.

Levi's adjustment to Lucas has been realllllllllly slow, but he is getting better week by week! For the most part, Levi just ignores Lucas all together. Sometimes, Levi ignores Lucas so well that he doesn't even see him on the floor under his feet. Or on the bed as he rolls over him. Or in my lap as he smacks him with a book. Did I mention how resilient Lucas is? In all seriousness though, Levi truly has done amazing with Lucas. In the beginning, I really feared that he would feel threatened and might lash out at Lucas, but he never has and I couldn't be more thankful or proud.

Adjusting hasn't just been hard for Levi, but has been challenging for all of us! Between Mitch and I both working & being really involved in our church, life has been pretty crazy for the Jaeger clan lately. Not to mention, going back to work at 6 weeks postpartum was tough on this mama's heart (and milk supply!). However, the Lord has been so careful with my tender heart and has given me good bonding time when I feel like I need it most. He also has allowed me to finally establish my milk supply and continue to exclusively breastfeed, which is a huge answered prayer and completely the Lord's doing (I was ready to give up by my second week back to work!)

Life has been exhausting and wonderful,. Overwhelming, yet so rewarding. And we wouldn't have it any other way!

Levi: 2 Years

Two years. Twice as many years as last year. Twice as many grins, twice as many laughs, twice as many falls, twice as many tears. And, if it's even possible, twice as much love. Sweet Levi, the Lord has given us another year together and I am so immensely grateful.

I dreamed about you for a long time. Before I married your father, before I had even met your father, I imagined what you would one day be like. I imagined your precious smile, your sweet voice, and the joy in your laugh. I imagined your likes, your talents, and your future.

 You are not what I had imagined or hoped for.

You are so much more.

I always imagined your laugh would be contagious, but I never imagined how joyful and free it would be. I always imagined your smile would reach your eyes, but I could never have foreseen how deeply it would reach my heart.

I imagined your voice would be soft and sweet, but I never imagined that words would never need to be spoken to know the immensity of your love.

You are brave. So brave, sometimes, that I just have to close my eyes and not watch as your dad flings you {what seems like} 20 feet into the air. Your shouts of delight let me know you are okay and I often open my eyes again to see you frantically signing "more, more more!"

You are bold and outgoing. You love when people sing to you or shake your hand. You love when people enter into your world and play with you. Basically, you love being the center of attention {and I indulge you way more than I probably should.} However, the moment you are asked for hugs & kisses you suddenly pretend to be shy- bowing your head and putting on a cute little smirk as you oblige. You will break hearts one day with that little routine, and I will probably scold you for it. But for now, I will treasure it.

You are a lover of sleep and a proud new owner of your own queen size bed {until we have guests, that is}. A queen size bed seems a little ridiculous for a 28 pound little boy, but when you account for the glow sticks, your blanket, 2 body pillows, and your sleeping acrobat routine, it makes a little more sense.

You are a lover of pizza, chicken, bread, & french fries. Your doctor calls it the Autism food pyramid, which makes me laugh because it's SO TRUE. The health nut side of me wants to cringe, but you are healthy and thriving and that is good enough for me. {I also sneak veggies into your food, but you don't need to know that part.}

You are still a master of spinning Frisbees and often times have 4 going at once. If you don't have a Frisbee handy, you will spin Tupperware lids, bowls, or anything that is disc-shaped. You are extremely observant. You study each Frisbee as it spins; correcting mistakes if it doesn't spin long enough and finding just the right spot in front of the window so that light explodes off the walls around you.

You are a hoarder of glow sticks. Glow sticks in the bath tub, glow sticks in your bed, glow sticks with dinner, and glow sticks on the way to school. Over time, having served their purpose, the bright glow of your "sticks" begins to fade and they become dull and lifeless. But to you, they are just as beautiful. Even though they have nothing else to offer, you still treasure your "sticks" just as much because your love is neither selfish nor superficial. Your love is deep, whole and unassuming. Your love reminds my sinful heart daily that we are called to love even in the moments that the glow fades.

You are such a hard worker. Every sound, every sign, every point, and every daily task you work so incredibly hard to achieve. Even when you fail, you continue to try over and over and over again. Sometimes for hours, sometimes for days, sometimes for weeks, and sometimes for months. But when you finally achieve something, and you will achieve it, it is such a glorious moment that makes it all worth it. What a picture of perseverance you are, sweet boy.

You are animated, you are energetic, you are quizzical, and you are comical. You are passionate, you are determined, and you are incredibly stubborn. You are rough with your toys, but gentle in spirit. You are easily angered, but quick to forgive.

You are celebrated. You are prayed for. You are treasured. You are loved.

You are you;

More than I ever imagined and so much greater than I ever dreamed.

Christopher "Lucas" Jaeger

Friday, July 24th, we welcomed our second sweet, little boy into the world and became a family of four! Over the past month, I have been reflecting on our last year and how wonderful that the Lord allowed us to bookend this past year with such a beautiful blessing. This year has been filled with miscarriages, specialists, therapists, and an Autism diagnosis. This year has been filled with walking with many, many friends through times of suffering. And, this year has been filled with deep suffering in our families. Although there have also been many, many wonderful times and blessings, this year has been one of the hardest years Mitch and I have encountered. BUT GOD did not allow it to end there. He graciously allowed us to bring gladness and rejoicing into this year through the birth of a sweet, wrinkly, healthy baby boy and we are so overjoyed and thankful.

Almost a week over my estimated due date, after the quickest labor and not even 4 pushes, Christopher "Lucas" Jaeger joined us at 4:32pm on July 24th. At 6 pounds, 13 ounces and 20.5 inches long, Lucas came into the world looking EXACTLY like his older brother & daddy (Apparently I only bring them into the world and that is where my contribution ends). Because of my Myasthenia Gravis, Levi's difficulties after birth, and the fact that sometimes babies can take on symptoms after birth (i.e. respiratory distress, etc.), the NICU team was present for the delivery and Lucas was immediately handed to them to be evaluated. Thankfully, he passed inspection with no problems and I was able to hold him a few minutes later. We are so thankful for how well the staff at Midtown Medical Center and especially Dr. Ted Thorne cared for and took precautions with Lucas and I!

Every single detail of our birth experience was so different this time! Since we were living in Mississippi when Levi was born, we had barely any friends and almost no family (except my selfless mother) around during his birth and the first few weeks. However, Lucas and I had constant visitors at the hospital and for weeks after his birth. I cannot even put into words how precious having our friends and family around was to Mitch and I!

In addition to having so much support, Lucas' clean bill of health was an incredible blessing! After Levi's rocky delivery and first month of life, we were fully prepared to walk the same path with Lucas. However, not only did Lucas have no Myasthenia symptoms, but he also was free of Jaundice AND he was able to eat on his own immediately after birth. The Lord is so gracious!

We came home late Sunday afternoon and introduced Levi to his new brother. It has been a slow adjustment, but overall Levi has done incredibly well with Lucas. Although he is not interested in him at all, Levi is slowly learning to be aware of where Lucas is and that he has to be gentle around him. We have had 2 or 3 hitting incidents, but we have had so many sweet moments between Levi and Lucas as well.

In the last month, Lucas has put on a whopping 3 pounds! Overall, he is an incredibly sweet baby who is a GREAT sleeper compared to his brother at his age. Since coming home from the hospital, Lucas only wakes once at night and then again around 6:00-6:30am. So if it looks like I am well rested, it is because I am! (For any mothers reading this and wanting to hate me right now, go back and read my blogs about the TERROR that Levi was as an infant and you might not hate me as much!)

Sweet Lucas we are so thankful that the Lord gave you to us according to His timing and not our own! You have truly been a cool spring in the middle of (what seems like) an unending desert.

On Autism and Being Blessed

Autism.

We have had a slight idea in the backs of our minds that this was a possibility. But alas, Satan is so good at convincing us that we are invincible and that our "perfect little worlds" are untouchable. So, when the diagnosis of Autism came out of the doctor's mouth, my world stopped and my mind exploded with a million thoughts, questions, and accusations.

How did this happen? I took my prenatal vitamins, Levi has never been involved in any kind of trauma, and gosh-darn-it we are good parents! I can't handle this. I have no experience with Autism. What is Autism? Is it genetic? Wait, what about Lucas?!

And then, the accusations started rolling.

God where were you? How did you let this happen? Why would you do this to a child? Why would you do this to ME?

The past week has been so full and so heavy. Mitch and I have grieved the loss of our "perfect little world". We have grieved for Levi and for the fact that things will not be as easy for him as we had hoped/expected. We have grieved over our pathetically sinful hearts and our immature reactions to this.

Because there are so many unknowns right now, Satan has taken full advantage of my mother's heart and has assailed me with fears of the "what ifs."

What if Levi never speaks? What if Lucas also has Autism? What if Lucas doesn't have Autism and he always resents Levi? What if Levi ends up being the "weird" cousin/brother/classmate that nobody wants to be friends with? What if I cannot give Levi all that he will need? 

And the list goes on, and on. And on.

 However, just in the past week, I have already seen such a change in my heart as the Lord is moving me towards acceptance and joy. There are so many unknowns with Autism, true. But, there are so many more KNOWN things with the Lord.

"Call to me and I will answer you, and will tell you great and hidden things that you have not known" (Jeremiah 33:3)

I do not know what Levi's development and progress will look like. I do not know where he falls on the "spectrum" as of now. I DO know that Autism makes up part of who Levi is and his "Autistic characteristics" are some of the things we find the most endearing about him. I DO know that our love for him will never change. Levi is a sweet, funny, affectionate, normal little boy in an abnormal world.

I do not know if Levi will ever talk. I do not know if he will ever say "mama" or "I love you."  I DO know that audible words are not necessary for one to know love or for one to have a relationship with God.

I do not know if Levi will develop epilepsy, or other conditions that Autistic children are more prone too. I DO know that the Lord has blessed us IMMENSLY with Dr. Steinwachs, Dr. Rubin, and all of the staff/therapists at Easter Seals who are taking care of Levi so well and will continue to do so.

I do not know if Levi will get better or get worse as he gets older. I DO know that the Lord will give us strength for anything that comes in the future. ("Fear not, for I am with you;  be not dismayed, for I am your God; I will strengthen you, I will help you,  I will uphold you with my righteous right hand. Isaiah 41:10)

I do not know how in the world we are going to handle a newborn being thrown into all of this in about two weeks. I do not know if Lucas will also have Autism. I DO know that the Lord has blessed us by surrounding us with friends and family who are loving and serving us so well. I DO know that while it might be overwhelming, the Lord will give us the ability and the strength to live joyfully. ("I can do all things through Him who strengthens me." Philippians 4:13)

I do not know how many times I will fail to love Levi the way he needs to be loved. I do not know how many times I will lose my patience. I do not know how many times I will be heartbroken because I cannot protect Levi from the way other people might treat him.  I do not know how many days I will live crippled by fear. I do not know how many times my sinful heart will wish things were different. 

I DO know that God's grace is sufficient. I DO know that God's power is made perfect in my weaknesses (2 Corinthians 12:9). I DO know that the Lord loves Levi more than I ever could and the Lord can protect Levi better than I ever could dream. 

And in these truths and promises, we are resting. In these abundant blessings, we are going to chose to be joyful. 

Levi has Autism and we are so blessed.

Great Expectations

After being apart for 2 weeks, the longest time span Levi and I have been apart, I couldn't wait to pick him and Mitch up at the airport this week. I stood at the top of the escalators at the Atlanta airport waiting to catch a glimpse of the man wearing a baseball cap and a baby (because I know my husband well enough to know he would be wearing a hat). As soon as I spotted them, Levi got a huge smile on his face, ran to me, and said "Mama!" for the very first time. It was one of the greatest moments in my life.

It also never happened.

This is what I had imagined my "welcome home" greeting with Levi was going to be like. I imagined it and I would say a small part of me, in the depths of my heart, expected it. Because I am his mother and he should've missed me. Because I am his mother and I deserved a greeting like that. Because my son is almost two and he should be able to say "mama". 

Instead our airport "greeting" consisted of this: Levi not knowing/pretending to not know who I even was, staring at me like I was a stranger, crying when Mitch forced him to go into my arms, and fighting me to try and get out of my arms and back to Mitch. Hurt would be an understatement to how I felt standing there in the airport and for the past day as Levi has slowly been working on warming back up to me. 

However, as in most times of hurt, the Lord has been faithful in showing me the true source and reason for my pain and disappointment: Myself. Levi himself and his actions did not hurt me, his failure to live up to my (deep-down and hidden) expectations of him did. Expectations that I never had the right to place on my son in the first place. As this has been revealed to me, I have realized that almost 100 percent of the times that I have been most upset about Levi's development have been when the expectations I had for him, hidden in the darkest corners of my heart, were not met. As Mitch and I excitedly awaited Levi's arrival this time 2 years ago, we did not imagine him going to specialists and therapists. We did not imagine him getting passed by his peers and even by kids a year younger than him in development. What parent does?

Instead, I imagined him as smarter, faster, and more advanced than his peers. And, deep down, what was the true motivation behind wanting my son to be the best? Because it meant I was the best. My son being smart, advanced and well behaved meant I was a great mother. Pretty disgusting, right?

But, I am ashamed and humbled to admit, THAT is the dark corner of my heart that my expectations come from. Expectations that are unrealistic, unfair, and deeply prideful. Expectations that poison my relationship with my son, my relationship with my husband, and ultimately my relationship with God. How often do I find myself asking God "Why are you letting this happen?" or "How long until you fix ________?" Or, "Why does Jane Doe have this or that when I am going through this?" (I would need a whole other blog post to cover the deep core sins that this question comes from.) And laying at the heart of all of these questions is the same thing: expectations I have placed on God that have not met my approval. 

Proverbs 11:23 says "The desire of the righteous ends only in good; the expectation of the wicked in wrath." My expectations are ending in hurt, in anger, in disappointment, and ultimately in broken relationships with the ones I love most. My expectations have caused me to be disappointed in my son. And, I cannot stand to even admit much less write out that I have felt this, but my expectations have cause me to at times be embarrassed about Levi's development (literally the worst thing I have ever had to write.) My expectations have caused me to question the Lord, to accuse him, and to belittle His sovereignty and holiness. 

BUT GOD, who is more gracious and merciful than I could ever fathom, has chosen to love me through this time and in spite of these awful thoughts and feelings. Praise the Lord.

Praise the Lord that he knows the depths of my heart and loves me the same. Praise the Lord that His plan is so much bigger than mine. Praise the Lord that He loves Levi & Mitch so much better than I will ever be able to. And praise the Lord for granting me a renewed heart and mindset on Levi's sweet, beautiful, and right-on-track development & personality. 

Levi: 21 Months

As much as I hate still referring to Levi's age in months, "Levi: Almost 2" as a blog title sounded even worse. Not to mention, he really won't be 21 months until June 10th (which means I am AHEAD on my blog posts for once!)

Easter 2015

First day of school/Last day of school

Although the last few months have had some really challenging moments, the wonderful moments have far, far outweighed the hard ones. Levi's personality continues to surprise us and make us laugh. Although he has regressed in all verbal communication, he has started to show signs of understanding certain words and phrases that we use daily such as "Dance, Levi!", "Give kisses", and "Are you ready to go night-night?" In hindsight, maybe we should spend more time on practical commands but he just looks so darn cute when he "dances".

Last week, Levi and I spent the week in Destin with most of my side of the family (Mitch had to stay back and give finals.) During that week, my older brother Josh was able to teach Levi to "fist bump" and to shake his hand when Josh said "Put 'er there". This was HUGE. A.) Because Levi was associating words with certain actions, and B.) because he responded to someone who was not Mitch or I.

In the last few months, Levi has made some great strides in his social skills as well! For the longest time, he wouldn't even respond to anyone who was not Mitch or I and he pretended like most kids his age and adults did not exist. However, he has started watching and playing with his cousins a little bit more and has been interacting with his aunts and uncles a lot more as well! He also continues to steal his cousins' food, but that is a lesson to be learned another day.

Levi laughs all of the time and mostly during rough play or being "scared". He loves wrestling with Mitch or being hit in the face with pillows (seriously, it's his favorite game). He also loves loud noises and suspense games. His new favorite toys are two Frisbees that were given to us at a restaurant in Destin in March. He will spin the Frisbee for HOURS. His favorite thing is to get both Frisbees spinning at the same time. It's really quite impressive. When we are outside of the house (in the car, running errands, at daycare, etc), his favorite toy is his "MP3 player" with his strap attached to it (the strap is just as important as the toy we have discovered!) The toy has buttons that will play music and he constantly presses the buttons while we are out because it soothes him. One day he is going to look through all the pictures that we have of him from this time and will wonder why he has a toy with a ratty old strap attached to it in EVERY picture. But it works and he loves it. Therefore, we love it.

My Cousin & my MP3 player, what more could a boy need!

In the last few weeks, Levi has also become very attached to blankets. However, since he does not have a "blankie", he insists on carrying around our full size fleece blankets (which is hysterical). He also insists on having ALL of the blankets. I cannot even count how many times Levi stole his Aunt Laura's blanket from her at the beach last week but it was just too funny to stop him. I am thinking purchasing Levi his own blanket is in our future!

Although we still have not heard any words yet, Levi is slowly beginning to communicate in his own way and it has been such a joy to be able to sometimes understand what he is wanting or feeling! So until the words and talking come, this mama is completely content to continue with the hugs, kisses, and happy arm flapping!