I Have a Little Secret...

Ever since Nina's surgeries I have suffered from an anxiety disorder that apparently I have always had...but never saw signs for...until now.

So why do I share this with my small group of very sweet followers and the blogging world?? Because I feel like there are many who suffer from anxiety. Some who know and feel those moments when time seems to speed up and slow down all at the same time. Times when you feel like you can honestly see your heart beating out of your chest because it is pumping so fast. Moments when you feel like all sound and light are at their highest extremes and blind out your thoughts and sight. Those times when you feel like you are sweating though you know you have put in little effort of movement and when your world starts to settle, you feel like you just ran the biggest race of your life. But then there are those like me, who had NO idea what in the world was happening?! Am I drinking too much caffeine? No I only had one cup and most of it spilled on my lap when little Jonny insisted that Hulks head just HAD to be put on again for the hundredth time. Am I coming down with something? If I am, what of the hundreds of possibilities do I chose from WebMD's long list of scenarios?!?! 

So with some prodding from friends and my hubby, I made the dreaded doctors appointment. And sure enough, she said it was anxiety. I wish I could say that the journey down medicine lane was an easy one, but it was a trial and error, and some of them did the vast opposite of what I was desiring. But when I compare it to Nina's journey of medicine changes...I have no room to complain. 

Friends, special needs moms, adoption moms, any and EVERY mom...our jobs are HARD HARD HARD! Some a little harder than others, in different ways, but still just plain hard! And as much as I know how easy it is to forget about our selves in the name of, "I am tired and too many other people need me right now", we end up doing the very opposite of what we claim. We spend every drop of what and who were are and never refill enough to give more for tomorrow. And before we know it...we are burned out, crying to our girl friends in the closet, eating our hidden chocolate stash begging someone will come to us with a strait jacket! (No, just me? ...ok then) We HAVE to take care of ourselves. We HAVE to find something, ANYTHING that will help us focus on ourselves. A time to breathe, a time to reflect on who you are and changes that we can make to make tomorrow even better, a time to just rest in something that we feel gives us a new joy and a new desire. Now I know, I hear many of you already making your excuses..."I do not have the time and what little time I do have, I like to veg in front of the TV"...I get it! I SO do!!!! But think, how many of us LOVE to save money? Most of us do not! If we have that extra $50, $20 whatever in the bank account, we want to spend it! BUT if we take the time and discipline to save it, we end up with a greater reward! Think of this as saving up for yourself so you can pour out more of what you want onto your children! 

So with my councilor's advice, I worked to find something I would enjoy. But for me, it had to be something that was surrounded by worship and devotions. I knew I needed to spend more than 15 minutes a day with God and I really wanted to add more quiet time in worship. So I took up Bible journaling. If you have not already heard, it has gotten pretty popular in the Christian women circles.  Basically you can take a verse, or a devotion and really reflect on what it means to you. Listen to what God is trying to tell you through it. Then write or draw or color or paint, in your Bible what comes to your mind. I have seen all kinds of skills from people. From those who are amazing true born artist, to those who really just enjoy it has a past time and never intend to share any of their work. To those who can draw the details of a human face, to those who stick to the stick figures. Jesus sees your heart through whatever you make of it! And HE thinks that is the most amazing art He has ever seen! It has made me draw (pun intended) so much closer to the heart of God as I meditate on the words that I read and not just read them and put them aside for the day, but really hide them in my heart. And spending time with God, and doing something I did not really ever think I was even good at, and thortoughly enjoying it, has put more energy and focus in my bank to give back to my family!

So I thought it would be fun to share my journaling through the Bible on here! A way to encourage others that as a mom of 7, if I can find the time, then we all kind carve out time for ourselves some were. Because mamas, IT IS IMPORTANT!!! Our families need the best of us we can give, and we can not give, what we are not saving up for.

So here are a few of mind that I have already done. I do follow Bible studies, but I do many at the same time. Sometimes I will journel sermon messages, sometimes a study I am doing now with a bestie from The Armor of God by Pricilla Shier (VERY good btw!), I have one I am doing with my girls, Beautiful Me by Stasi Eldredge, which is SO good!!! And I like to do the She Reads Truth, which right now they journeying through Acts devotionals I get through email as well!

Just a recap of the kiddos.

Nina's last doctors appointment left me feeling frustrated and sad. They said, at this point it is finding quality of life for her. Words no parents EVER wants to hear. But as we are coming up on her 6th birthday she is smiling, laughing, running and even beginning to potty train again! This girl is a fighter! And she truly inspires me to be stronger!!!!
Abbi is coming up on her 1 year mark! WOW! One year!!!! It feels like she has always been a apart of the Noll family!!!! She had her cochlear implant surgery three weeks ago, and this Thursday we go in to have the outside piece put on and turned on! Soooo...stay tuned for an update!!!!!!!

As always thank you for reading and for your love and support!!!

The Miracles of Our Sweet Girl BUT the Realities Of Our Tomorrows: The Answer to How is She

So we are home! What a great mix of emotions! Some of you know what a roller coaster we were just on with Nina. Having two brain surgeries that were rougher than anticipated, then being sent home only to have to go back because she was having 7 to 8 seizures a day, then facing yet another surgery.

After grid placement surgery

not thrilled about therapy

after resection

Trying to hug her way out of therapy

Good bye!

Got a chance to break out of the room for a little walk!

Miserable at home

Learning to eat again...after just a few days she has been using her fork again!

A few visitors

Surgery number 6 here we come :(

 After many days (or it felt that way anyway) and going back and forth they saw that the pressure on her brain was too much and she needed another surgery to put in a shunt to drain the fluid from her head. Something I wrestled with since our surgeon said, shunts served their purpose but came with their own set of problems. And if you know anything about Nina's story, it seems like if it could go wrong...it probably would. They also did an EEG for a day and found that seizures were now coming from the LEFT frontal lobe... :( So they changed up her seizure meds to get more control. We were released from the hospital and I surprised my husband and kids by showing up without them knowing. Sadly though the surprise was over shadowed by the fact that Nina had thrown up the whole way home and now had a huge lump where her incision was on her belly from the shunt... You can imagine how worried and heart broken our kids were. They sent us home after many tests and thought maybe her body was just getting used to the new pressures, come back if she is still throwing up...yes because we so enjoy 4 hour car trip with a puking and miserable child.
Needless to say she was still puking so the neurologist and surgeon just told us to come in the office and they would look her over. They turned down the shunt to keep as much fluid pressure off of her belly and gave us a plan to keep her "regular" thinking the two was probably putting too much pressure in her abdomen, and also added a second seizure med since she was still having at least 2 to 4 seizures a day. Her left hand is still very weak and she will not use it for much but seeing how much her leg has gained its strength back, I have no doubt her hand will follow soon.
I am happy to say she is now home, NOT throwing up and has NOT had a seizure since!!! And beyond all of that we see our girl coming back!!!!! Since the last surgery Nina has not laughed much, and if she does it was not usually appropriately. Now our sweet girl is enjoying being chased by siblings, cracking up for zooburts and tickles and just seems SO MUCH HAPPIER! It is amazing to watch! She is actually trying to communicate with us! She is still so far from actual words, but we can tell she really is trying so much more than she did after the last surgery! If she sees a toy she wants she runs excitedly to it! And in so many ways she is still a lot like an 18 month old. She still has the same obsession for food but I am seeing far less tantrums over not getting what she wants right away! I am truly seeing the girl we lost after the last surgery! I am thoroughly enjoying my sweet girl and seeing such light behind her eyes!

Two weeks since surgery! I look great!

So why the BUT? Well, while we have only lived with Tuberous Sclerosis for 2 1/2 years, we know the journey. While I would love to continue to bask in the success of the surgery, I know the reality of what we are facing. Nina has so many tumors on her brain that they are constantly fighting for position of top dog in her brain. So while she has 4 less tumors, there is now the one in the left frontal who is now top dog. our prayer is that one is controlled by meds. And that no more grow any bigger to fight for more control. Sadly, this just is TS. And while we could eventually hopefully one day see nothing growing in her head, they can pop up anywhere, and are most common in the kidneys. I have many TS mamas who face this same battle. You wrestle with the thought of major brain surgery, go through with it and wait. They get excited over seizure free days and moments of time where their kids can be kids! Where they can learn to take their first step or say their first word/ Where they finally get a chance to break through the cloud of seizure activity constantly attacking their little brains and can acknowledge their love for their mama or realize these people living with them are siblings who are fighting along side of them. Only to be hit with a seizure that charges up their brain and often times takes back all the ground they had gained. It is heartbreaking. It can be paralyzing waiting for the shoe to possibly drop. It is overwhelming knowing any new seizure that starts popping up can look and act like no other seizure they have ever had, making you second guess almost every new move your child makes. But this is just her reality with life of TSC. It is a waiting game, not usually, it seems, for if they will come on again, but when.
But we are not without hope. Our Father has SUCH great plans for Nina's life! You can not even imagine the number of people who remember Nina and her story from her last surgery! From recovery nurses, food service, cleaning ladies to nurses, doctors, therapist and anesthesiologist! All of the lives this girl is touching! And all of the ways we were touched through this hospital stay. I can not even beginning to describe how overwhelming the love was for our family and our girl! Josh and the kids, and I had meals delivered almost daily from friends and family! A friend of ours and his mom came to our home and cleaned it all and gave the kids new bed comforters! Then his mom came back for a day and folded all of our laundry! That was the day we ended up going back into the hospital. The two of them then went to our church and told them we needed a new washer and dryer (guess they did not love cleaning the same load 3 times before you could dry it?) and they surprised us with the biggest washer and dryer made for a home! (THEY ARE AMAZING!!!) We had calls, texts. visits and messages sent daily to encourage us! Thinking about how God's hands and feet stepped up was overwhelming! And we can not THANK YOU enough!
There is still a lot of adjusting going on to life resuming, and I would be lying if I did not say that adjusting back to life outside the hospital has been tough and a million days of constant catch up. But we will get there! I deal with a lot of anxiety since her first surgery that the stress of this new surgery brought back, and though Nina is so much a happier child, she is still like an 18 month old at the height old a 6 year old, able to grab anything and everything she possibly get her hands on.

So pray our family finds its grove again. Pray for a cure for TSC. Pray for strength for me. Pray for continual healing for Nina.

Oh and Abbi has her cochlear implant surgery in May! Excited and nervous for that!

Thank you all for your love and support!

To all those watching from the outside...

To all those watching from the outside...

I would love to tell you my strength was that unlike yours. I wish my heart and mind help the patients you think some how I possess. The kind that could handle a whole room of young kids and never want to throw in the towel, to throw my hands up and say I surrender. I would give anything some days to be that person so many people think I must be to walk the journey we are on in adoption, in having a big family and in handling special needs kids. But I fear you see me. That strength, that patience and endurance, is not me...it is Christ. This is a concept that I am only now really understanding more and more about myself.

You see it is tempting to believe you. It is tempting to think I must be patient to have so many young kids, or I must have such strength to agree to bring more children into our family and stand through the fire with Nina's surgeries and battle Epilepsy. But I am just as flawed, just as weak and just as impatient as many of you are. It is in those moments that I become more disappointed in myself because I am relying on ME to be those things...when I am not. Those are just moments I took the reins of my life thinking I CAN DO THIS by myself.  I can promise you I never imagined my life journeying the way it has turned out, I never thought for a second that I myself held ANY of the right qualities needed to be where I am today. And you know what, I do not think God cared if I did or not either. He saw me, His child, created to be a vessel on this earth to be used to bring Him glory. He does not need ME to be strong, or enduring, or even patient because HE is all of those things. He just needed me to be willing to be filled with HIM to walk this journey.

I say this friend because I do not want you to miss out! I fear so many are missing out on AMAZING LIFE ALTERING journeys on this earth because we are waiting to be what we think God needs us to be. Do not wait friends! There are too many people counting on you! Not just waiting to be adopted but there are homeless waiting for you to start that kitchen so they can see the love of Christ's church and a smile. There are children waiting for adults to step forward and mentor them, walk with them, and be the adult they never had in their lives. THERE ARE LITERALLY opportunities EVERYWHERE around you! Do not wait till you have time, MAKE TIME! What are you here on this earth for anyway? To serve Christ or to serve yourself?

I will never pretend this journey is easy, that saying yes was not as scary as all get out or that I did not and still do not doubt that maybe I am not all I need to be on this journey. But that is exactly what Satan what's to use to paralyze God's church. And we can not let him win! God CAN and WILL equip us if we are ready willing and able-THAT is all you need!!! So whether or not God only has planned for us to raise the seven we have or adopt 20 more, I know I can say yes, knowing it is HIM who will give us what we need to be that vessel. It will NOT be easy! Our human flesh WILL become weak some days and our hearts will break. We may see more sadness than we ever imagined and we might doubt from time to time whether we did the right thing or not...but all of those things only prove we are still human. Olympic gold medalist can do amazing things to their bodies to win that medal...but do not think they do not have their moments of wanting to give up, of feeling weak, broken down weary or overwhelmed. But that does not make them any less an Olympic medalist, it just makes them human!

So go out friends and allow God to use you because it is not a matter of whether or not you are the one good enough to perfect His plan, because you are a child of God you already ARE part of that  plan and equipt with all you need to fulfill His plan! If you will allow yourself to be.

Friends the road up the mountain is not an easy climb, but I promise you DO NOT walk it alone, you will be given everything you need to climb and the view-oh the view is BREATH TAKING and so worth the climb.

Yet Another Hard Journey

Friends today we embarke on the journey yet again for brain surgery, we leave for Orlando today to start Nina's pre-op fun and then her surgery is Monday morning. We plan on having a little fun as a family in Orlando to help calm nerves.

I can not tell you how much like I feel like I am being dragged kicking and screaming even more this time than before! I simply want to go pull the covers over my head and pretend theses plans are a dream! But alas...I shall pull my big girl panties on, and arm myself with the Armor of God and be the mom God needs me to be for Nina!

I plan on keeping her regular updates to her page so if you want to follow here is the link --> Praying For Nina and hopefully giving more general updates here for any that do not have facebook.

Thank you for your prayers. comments and offers to help where ever it is needed. I have amazing family and friends and my church family is surrounding us as well!! (Part of the Armor of God)

Here is a list of things we would love lifted up!

Obviously pray surgery is done well and she pulls through great!

Pray she does NOT lose more than she has already lost and PLEASE keep what three words she has gained!

Pray only two surgeries are needed and that if three are needed that it she will bounce back quick!

Pray for her siblings who will be back here with Nana and Papa especially for Abbi as this will be her first night without both of us.

Pray for me, Like I said KICKING AND SCREAMING inside!

And most of all please pray her cough subsides this weekend, her cold is really not bad at all, but I am nervous they will say no-go, and I just want this part of her life to be over and done with!

That is all for now friends! Thank you for your prayers!!!!

I leave you with her sweet 3 words!!!

It Should Not Be Me

Being an adoptive parents comes with so many feelings. We have been high and we have been very low. We have been happy and had heartbreaks, we have seen amazing victories and tasted the bitterness of regressions. There is no doubt that when you say yes to adoption, you really do not know what you are in for...no matter the child or the experience of the parent, the winds just blow and sometimes you never know which way your emotions are going to go.

Every time Abbi opens her eyes from a nap or in the morning, her first reaction is always every time without fail, to wipe her eyes, look around the room, as if to resure her that being out of the orphanage is not a dream, and then a huge smile comes across her face as her eyes catch mine, her arms stretch out to me and she giggles then wraps her little arms around my neck. (Then of course she jumps up and starts her day at about a million miles per hour!)

To see her light up and smile normally really brings me such joy! To know that she is genuinely happy with not only her home, but so very happy with her family! It is what all adoptive parents hope for!

But like I said, sometimes the winds of emotions can knock you back unexpectedly. I walked into our room to wake her, ready to see the smile on her face. I sat next to her on the bed watching her sleep, and all of the sudden a wave of reality rushed over me, a thought that I had thought before, but I guess maybe never really felt.

                                          I want her eyes to open and her face to light up, but her eyes should be looking at the mama who gave her life. The one who bravely carried her. Her arms should be wrapping around the woman who has her eyes and knows her little soul as well as she knows her own...it should not be me. Now do not get me wrong. I am beyond happy she does not spend another day in the orphanage! NO child should be there! But this is the reality for my babies that I can not change. A reality I can never give to them, and that breaks my heart to pieces!

**And as a side note, these are not feeling I linger on, or think about for long. I refuse to believe my kids are without the hope of growing up joyful and loving and confidant! My God is big and I have seen Him do great things in so many lives!

This is the fate of SO many children! SO MANY, EVERY WHERE!

This is Cassie. So many that have met and played with Cassie from American groups say how sweet she is! Sweet Cassie has woken up behind the bare cold walls of the orphanage for far too long! Cassie is now 11, the same age as my oldest. When I think back to the 11 years I was privileged to parent her I remember all the sweet moments this girl has missed having a mom.  She will not have any one there to sing Happy Birthday and help her celebrate a new year of life. Sweet Cassie does not know the smile from parents proud of her achievements big and small. Her hard work has been met with nodding heads and empty stares for far too long! My heart aches to watch this girl age another year without a family. The videos show her talking, walking and says she is very independent. She does share the same special need of cerebral palsy and looks like she too is rocking it! If adoption is something you have EVER thought about! Please please pray about it and do not hesitate to ask any questions! I would love to be of any help I can!
Please share this post and let's find Cassie a family!!!!!!!!!!!!!!!!!!!

PS-someone asked a question on my blog last week about a girl they are looking to adopt, the comment got deleted before I could read it, some how. :( Please feel free to reach out again!