Sometimes she leaves us…

One minute she’s with us and then the next minute she’s gone.

 

All is well when she gets in the car after school. I hand her a snack and she tells us she earned a sticker. We make our way to Target and the mood shifts. I can see the manic look in her eyes and my stomach drops. She is defiant and loud. Her movements are brisk, her eyes refusing to make contact with mine. She’s gone.

She’s not Layla anymore. She can’t be reasoned with or spoken to. She doesn’t even hear us. She just screams. We leave and she won’t keep her seatbelt on. Out of desperation, Kevin puts her in the car seat with the 5 point harness. He hopes she won’t take that off. She’s not safe.  She scratches him and yells. I get in the seat next to her and wrap my arms around her tightly as Kevin drives away. I squeeze her arms close to me so she feels some sense of security in the midst of her thrashing around and I whisper “Shhhhhhhh” into her ear over and over. Her body goes limp and she cries. I cry, too. And I silently thank God that her Occupational Therapist gave me the right tools to do something. I silently thank God that it worked. She doesn’t know why it happens. We talk about all the better things she can do when she starts to go to that place. She tells me her brain talks to her and sometimes it says bad things. She is confused and sad and we are exhausted in every sense of the word.

Honestly, on days like this I fantasize about a Layla who was never exposed to drugs in her birth mom’s womb. I dream about a Layla who doesn’t struggle with dark moments in private. My mind drifts to what it would be like without a world of Neurological testing, Occupational Therapists, Psychiatric visits and medications under our belt. The doctor says scarier things than she used to. Like how to look for signs of bipolar disorder. I feel ill-equipped. But the moment I catch myself thinking this way, I stop myself. God has assigned Layla her portion and cup. And he has assigned me mine, too. And if I acknowledge that He is good, (He is, by the way) then I must acknowledge that what He allows is for our eternal good as well. We can do this. One day at a time.

It’s just that it gets so lonely. To most of the world she appears normal. The well-meaning “She seems fine to me” comments are like a punch in the gut. I am grateful that you have never seen the scary side of her and yet simultaneously frustrated that you do not understand. On the other hand, if you HAVE seen that side of her, I am terrified you will compare her to her brother and sister and somehow view her as less. Is there a way for you to recognize she is different without treating her that way? I’m not sure.

Before the night is over she is completely back to normal. And our aching hearts are already on the mend. We have been there/done that too many times before. We may go months before we see anything like this again, or tomorrow may bring another day of pain. We just never know. But we carry on. We know that even when Layla is at her worst, she is the most incredible gift. And when she is at her best, there is not a greater feeling in the world. I wouldn’t trade her or change her for anything. Her story is beautiful and she is a fighter.

 

P.S.-Give grace to the family with the kicking and screaming child walking out of the store. Yes, that child may be a spoiled, entitled, brat. But that child could also be the most pleasant, well-behaved, sweet thing who fights the hardest, darkest battles behind closed doors. And her Mommy and Daddy might be afraid and overwhelmed. One smile and nod can remind us that we are not in the trenches by ourselves. Assign positive intent. It makes all the difference.

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Recent News on Layla

This Friday morning, Layla will have another appointment. It is the opinion of her neurologist, her primary care doctor, her occupational therapist, her teacher, and Kevin & myself, that there is something more going on than her sensory issues. While she has made worlds of progress with self regulating when dealing with sensory stimuli and she is not toe walking as often as she was before, she has continued to struggle with her compulsions, her focus, and her ability to retain/explain information in an age appropriate manner. She memorizes things fairly well, but critical thinking and drawing conclusions from facts is very, very difficult for her. While she is eager to follow the rules and participate in school, she is very behind and is having a hard time with her work.

We need prayers! Kevin and I need guidance. We want to help her reach her full potential, but there are moments that we feel incredibly ill equipped. Please pray that this appointment gives us the answers we need and that we are able to get the school to accommodate her needs. Pray that her medical team is open to us not wanting to medicate her before exhausting all other options. I know the natural route we are wanting to take is not always well received and I don’t want every appointment to be a struggle. Pray for Layla. She gets discouraged and it breaks my heart.

As the kids get older, people are starting to compare Layla with Bryson & Jordyn and that also breaks my heart. For example, the kids had an appointment with the dentist last month. Bryson & Jordyn breezed through their appointments. They understood everything that was being asked of them, they cooperated and they were done. Layla had a much harder time understanding what was being asked of her. She then had a hard time dealing with all the sensory stimulation going on between hands being in her mouth and lights being in her face. She was pleasant the whole time, but still not cooperating well or processing instructions. The hygienist grew frustrated. At first she started sighing after she had to repeat herself over and over. Then she made comments like “I’m going to have nightmares about this tonight Layla,” and then finally saying “Your brother and sister did all of this with no problems and they are younger than you!” And I wanted to scream because I was so frustrated for Layla who was trying her best, whether age appropriate or not. I wanted to share with the hygienist about Layla’s struggles but I also didn’t want to make Layla feel uncomfortable. I also didn’t want to speak out of anger. So I simply looked at her calmly and said “Layla is doing her best right now.” This is not the first time we’ve encountered the “why can’t you just do it like your brother and sister did?” comments from outsiders and it rips me up inside every single time.

I don’t want her to feel different and I don’t want her to be compared to anyone. I look her in the eyes and I say to her often (even though she doesn’t understand me yet), “Layla, you don’t have ANYBODY’S shoes to fill but your own. Be yourself. Do your best. Work hard. That’s all we ask.” And I mean that with my whole heart. I wish I could get everyone else to see it that way, too. I hope to better model to her that failure is never failure as long as she has tried her very best.  I hope to help her grasp that her self-worth and self-confidence can be found in the fact that she was created by a perfect God for a specific purpose and He doesn’t make mistakes. And I hope that people will see her for her passion, her love for life, her energy and her joy rather than her compulsions, her struggles, her inability to sit still. She is such a treasure and it is such a privilege to have her as a daughter. I’m thankful for the opportunity to help her walk out this life that God has given her.

Until the next blog…be blessed!

“Sometimes when you sleep, I watch you dream and I dream, too…”

Layla,

When you came to stay, there were these nights. Ones that I tend to forget. Then, these reminiscent moments hit me out of nowhere and I remember every second. Daddy was working a lot of late shifts, not getting home until early morning hours. And it was just me and you, kiddo!

We were sorting out some stomach issues that you were having and had switched formulas quite a few times to soothe your apparent discomfort. But before it was all sorted out, you would just cry. And I was exhausted. I was in my 3rd trimester, waiting on your brother to arrive and since it was my 1st pregnancy, I assumed I’d get to go to bed at 8 pm and have a nap or two in the afternoon.  Then we got that amazing call that changed our lives and with that, sleep went out the window.

And those moments were hard. But they were so beautiful.

There we were, new baby and new Mommy, late at night all by ourselves. I would hold you against my chest, and your tiny feet would dangle across my big belly.  We would walk laps around that apartment. On good nights, I would sing or speak softly of my love for you and how excited I was about God’s plan for your life. On bad nights, I would cry right along with you, praying God would give both of us rest. But the good nights and the bad nights…the nights that felt like bliss and the nights that soothing you meant ignoring the irregular contractions…they were all a treasure.

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Because soon, the formula issues would resolve and you would sleep. And there wouldn’t be anymore late nights, holding you against my chest, feeling your tiny feet dangle across my big belly. And, as you will come to understand when you are one day a mother, from the moment you first hold your baby in your arms, you begin the process of letting them go. Each milestone reached is a part of the growing up process. And Layla, it is the best process. But it is fast. And there is no slowing it down, so all you can do is accept and appreciate it.

Every day since that period in your life, I have had to let you go a little bit more. Let you go so you could learn to walk on your own. Let you go so you could dress, feed and bathe yourself. Let you go so you could go to school. Let you go make your own friends. Let you go find your own passions and hobbies. Let you go so you can find out that the world, though beautiful, isn’t what you originally thought it might be. Let you go to make your own mistakes. Let you go to dream your own dreams. Let you go have your own deep sorrows and great joys.

And letting go is so hard. But it is so beautiful.

It is such a privilege to watch you come into your own. To watch your independence grow. But I hope you’ll understand that it leaves me, now and then, needing to hold on for awhile.

So I go to your room long after you’ve gone to sleep and I sit on the edge of your bed. And no, you aren’t a tiny little thing who lays across my chest, feet dangling. But when I pick up the whole 50 pounds of preciousness that is you, and your feet hang all the way down past my knees…it’s almost the same thing.

If I could, I would hold you forever. Hold you far away from all the hurts. From the struggles. From the hard work of being who God created you to be. From being misunderstood and made fun of. But I wouldn’t really be loving you if I did that. And I don’t want you to be safe nearly as much as I want you to be brave. So I will take these sleepy moments in and then walk out of the door and give you back to God over and over again so that His will can be done instead of mine.

And, baby, that is so hard. But it is so beautiful.

Because as big as my love for you is, it doesn’t compare to His love. And although I am a writer, no one could be a better author for your life than Him.

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Until the next blog…be blessed!

We’ve come full circle.

Tomorrow is Layla’s first day of school.

5 years ago, it was a hot summer day (much like today). Kevin and I sat together, hands held tightly, with a 2-week-old in between us. Knowing there was nothing else to do, we prayed. Hard. The kind of prayer that is so full of the deep longing to be heard that your body shakes with each word. The kind of prayer that leaves your face hot and wet with tears. We were praying a simple prayer, but one that would mean everything. “Lord, let Your will be done in this baby’s life. Even if it’s not the same as our will, have Your way. We trust You.”

And then we brought that 2-week-old back to her birthmother’s house and waited for the Lord to make His will known. And He did. He is so faithful.

Tonight, we have come full circle.

Kevin and I sat together, hands held tightly with a 5-year-old between us. We stayed there reverently acknowledging with so much thankfulness that 5 years ago, the Lord heard and answered our prayer. We spoke about how thankful we are that God entrusted us to be Layla’s parents. That He chose us when we said “Let Your will be done.”

We talked about how we could have never imagined what a journey this would be. We couldn’t have comprehended how hard it would be, how much work it would take, how many tears we would cry advocating for our little girl. But we also couldn’t have comprehended how much joy one sweet child could be, how hard we would laugh at the silly things she says, how proud she would make us by being who she is. And how kind God would be to take our inexperience and inadequacy as parents and bridge the gap so that we could be what Layla has needed…despite ourselves.

And then we prayed again. With the same deep longing to be heard that we had the first time we prayed over her. The same tears running down our cheeks. A prayer that God’s will would be done in this next stage of her life. She is an independent little girl who is going off to school to face a world that I am not always certain she is ready for. I fear she may be teased. I fear someone will hurt her spirit and she will lose the spark that I love so much about her. I fear school will be hard for her because of her neurological issues. But time and experience have taught us that there are better things to pray than “God protect her from all of that.” So instead we prayed “Lord, make her brave. Make her strong. Help her to be who You have created her to be.” And again, just as we prayed 5 years ago,  “Let your will be done in this baby’s life. Even if it’s not the same as our will. Have Your way. We trust You.”

And we know that He will be faithful. His way is good.

Until the next blog…be blessed.

…because my filling fell out.

It’s amazing to me, how often the ordinary can become extraordinary. A quick trip, a random smile, a simple hello. They can lead to these big moments. We think it’s going to just be a regular day with regular errands but God has a way of even using our mundane tasks for His glory.

My filling fell out. I whined and complained about it- because who has time for a filling to fall out? And why did it fall out? I follow the rules…besides the no drinking coffee rule because, come on. I’m an exhausted Mommy of 3 littles with a never ending to do list and coffee is my saving grace most mornings. On a particularly rough week, I may even wake up a morning or two to find that my sweet husband has already made my coffee. He’ll slide it over to me without saying a word and slowly walk away until it is safe to approach again. He’s a good man.

ANYWAY, so my filling fell out and I went to the dentist. I had what seemed to be an ordinary appointment until I went to the receptionist’s desk to schedule my next cleaning. The receptionist’s name is Jessica and my name is Jesika, so we exchanged pleasantries about how she often wished her name was spelled “cool” and I often wished my name was spelled “normal.” And then it happened. She spilled her guts. I have no idea why. Maybe I looked approachable and safe, standing there scheduling my next appointment. Maybe it was the prompting of the Holy Spirit. Maybe she had just reached her limit and would have put it all out there for anyone that would listen.

Her stepson is 5-years-old. She’s exhausted. She’s tried everything. And then she goes on to describe a little boy version of our 4-year-old sweet girl with Sensory Processing Disorder. She says her pediatrician wants to medicate him and she feels uncomfortable with that but doesn’t know what to do and she just feels so alone. And I got to share with her about all the improvements Layla has made since starting Occupational Therapy and how many tools we have learned that have helped us survive with a special needs kiddo. She asked for our Neurologist’s phone number and I gave it to her. But most importantly, I got to tell her that she’s not alone. That God is always there and that the world of kids with different needs than the average kid seems small and remote but really it’s just private and quiet and not often shared openly. This tired step momma who is doing everything she knows to survive and help and cope is not alone. There are lots of us. And in reminding her I got to remind myself of that very same thing. Behind that pretty smile on her face was a broken, worn out woman just waiting for a good cry. There are so many of us “in hiding.” I thank God she was able to take off the mask for a moment and just put it out there. It reminds me of how important it is for us to do that. I was so happy to share with her that God knows exactly what He’s doing and has a special plan for her boy.

I promised to pray for her little guy. Will you join me in praying for him? I don’t know his name, but God knows exactly who he is! Will you pray for that sweet receptionist, Jessica? Will you pray for me, when I am tired and worn out? This week we feel good. Other weeks I am on the cusp of laying it all out there for a random stranger, too. Maybe we all need to do that a little more often. Maybe then we could stop competing with one another and start loving each other a little better. Maybe we would receive a sweet reminder that we are never really alone in return.

Until the next blog…be blessed!

Layla’s Neurology Appointment

Today was Layla’s 6 month neurological follow up. I’ve noticed that we’ve slowly but surely grown into a family that is accustomed to having some special needs. I remember in the beginning I got nervous a lot. I cried with good or bad news. I refused to acknowledge that Layla had differences and delays. It’s interesting to see how much that has changed. I have no idea when it happened, when we adjusted. We have grown to enjoy her weekly occupational therapy.  I don’t cry often anymore about her neurological disorder. I didn’t spend this week feeling sick to my stomach about this appointment like I would have in the past. Kevin said the other day “I get it now. She has special needs. I felt like I would be cheating her if I looked at her like that, but I realize not acknowledging it was doing her a disservice. It’s better now that I accept it.” And he’s right. It’s better. Thank God, it’s better.

According to her neurologist, while still delayed, Layla has made cognitive improvements and her muscle rigidity causing her to toe walk isn’t as severe (she still does walk on her toes a majority of the time, so we’ll soon be adding in physical therapy once a week in addition to her occupational therapy). Because of these improvements, he feels that she will continue to respond to her therapy in a positive way. That’s great news! She will continue weekly OT indefinitely. As I said previously, we will also eventually add in PT once a week. He said that with processing disorders, not only do people have a hard time getting their brain to process sensory stimuli, but sometimes they have a hard time processing thoughts and words. That seems to be the case with Layla right now, too so we may need to also add speech therapy to the list. We are taking a wait and see approach for 3 months and then we will find out if we need to add that to the therapies we will already be taking her to or if maybe they can incorporate speech therapy in school since her medical team wants her to try public school for a year.

On evaluation of MRI, her spinal cord is not tethered, which is great news! It looks completely normal. There is an issue with her bladder which apparently did not develop properly in her birth mother’s womb as well as bladder distension and so we will have to follow up on that as well. She also has hydronephrosis of the right kidney so after we discuss with her pediatrician, there will be a urology referral.

I feel weird that I haven’t cried about all of this. In the past, this is something that would have made me cry. But I just keep hearing in my head, “God has assigned Layla her portion and her cup…He has made her lot secure.” This is what God has assigned to Layla. So it’s for her eternal good. He has a reason and a plan that is far beyond our understanding and He will give us, and most importantly her, the strength needed to get through. We are getting stronger and more resilient and that’s a good thing!

Please continue to pray for Layla. Specifically, pray that she continues to respond to therapy. There was a point a couple of weeks ago that she was having regressions in OT and that was REALLY scary. We need for that to not happen. So pray she continues to progress. Also pray that there will be no damage done to her kidney and that she doesn’t have long term issues with her bladder. Please pray for continued peace for all of us. Right now, we feel strong…but there have been and will continue to be very weak moments and we will need to feel Christ near all the more.

I can’t thank you all enough for the prayers and for the support you have given us. A big thank you to each and every one of you that remember to ask how Layla is doing or offer to help. We are so blessed to have an incredible support system…it really makes all the difference.

Until the next blog…be blessed!

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UPDATE!

I’m so thankful for a diligent doctor! We already got Layla’s tests results back and they are NORMAL! God is so faithful to us! This means no cerebral palsy and no spina bifida!

So what’s next?

Her diagnosis is now “encephalopathy” which is a broad term that basically just means disorder and disease of the brain. Which, I know sounds scary. However, at this point in time the doctor believes this will be completely reversible with occupational and physical therapy. She will start therapy and if she’s hasn’t had much improvement in six months then the neurologist will reevaluate and consider more invasive testing. They will also take another look at some of her worrisome tendon issues in her legs and consider either bracing or surgery. But we have faith that in 6 months she will be a new girl!  Well, hopefully the same old Layla, just with no discomfort in her legs or gait disturbance and with no more of the issues she’s been having. 🙂

We’ve got some work ahead. Apparently physical therapy can be rough on a 4-year-old. But, as many of you know, Layla is a tough cookie. That Physical Therapist has no idea how much joy is about to hit him in the form of our sweet girl. I was reminded yesterday of the beautiful gift Layla has of just drawing people in and making them smile. There were literally nurses coming to peak their heads in and just look at Layla at the hospital because word got around that there was a cute little girl in room 3.  When they wheeled her bed out of the room and she squealed “wheeeee! wheeee!” like she was on a rollercoaster the whole hospital staff erupted in laughter. She’s got a way with people, it’s really amazing.  I know she will need this physical therapist. But maybe that physical therapist will need Layla, too. God has a way of using situations like this for His glory.

Please continue to pray for our family. Pray that therapy is incredibly effective and at her 6 month follow up the neurologist feels that no further testing is necessary. Please also pray that God will keep our hearts and minds in perfect peace as we wait. Six months is a long time to not know any definites and I know we will have some tough moments. But I also know that in our weakness, God is made strong.

Thank you all so much for the love and support. It has made all the difference.

Until the next blog…be blessed!