Do Not Miss Out

Early early Monday morning in toddles Abbi, crashing into everything from her bedroom across the house to our room. Tired, I lift her into bed next to me and pray she falls back asleep. True to Abbi, she does NOT go right to sleep. She tosses and she turns, she sticks her fingers in my eyes and laughs when I crack my eyes to make sure shes not scheming as I groan inside. LORD I am so tired, please please let this child sleep through one whole night. Then the message from that Sunday came to mind.

                                 

            1 Thessalonians 5:18

18 In every thing give thanks: for this is the will of God in Christ Jesus concerning you.

In everything Lord? I am tired. Josh is tired. If it is not Nina waking us up, it is Abbi or the boys. Lord you called us to this life, you alone know we what we need to raise these children with love and grace, and SLEEP would be at the top of that list, no? Then I stopped...how can I be thankful for this, find it. I watch her sweet face from the dim light coming in from the windows, sucking her thumb trying desperately to breathe through her stuffy nose so she can keep her thumb in, and stirring every time she had to stop and take her thumb out to get a good breath. So that is what got her up in the early morning. She is coming down with a cold and likely doesn't feel good and can not keep a hold of the one constant that helped soothe her through the four years alone. Lord, how far this girl has come! She once would not even be able to stand being in a bed close to me, now she walks through the dark of the house to find comfort from her mama because she needs a mamas love. Someone to be there when life feel yucky, someone to be there at the end of the dark house to calm her fears. Someone to rub her head reassure her that she is safe, she is loved, and she is precious. I get to be that blessed one. Not because I am mountain top, super spiritual Mother Theresa.  Not because I must be super patient or I ambrave in ANY way shape or form.  And not even just because the Lord called only US to this life. He is asking us ALL to care for the orphans. ALL of us! We simply took the step forward, and now we get a front row seat to how the Lord gave everything He could to change our dark nights. Thank you Lord! I see it now! And oh the moment I would have missed if I had chosen to continue to groan inside that I was spending another sleepless night trying to soothe a child to sleep. 

These last two years of parenting children with special needs and adopting have been the most growing period of my life! I have grown in compassion, understanding, strength to stand up for my children, love and so many more ways than I ever thought possible. I have watched Isac go from a child who came to us with the attitude and heart of one who had no choices in life but to simply comply. He laughed, he smiled, he hugged, but much of it was only on the surface. To watching him now these last few months watching him truly love, and laugh and give all of his heart. I have gotten to stand by Nina and grow in love with a child who at first rejected me. Who was hurt so many times that she was very careful about who she wanted to let in. To stand by her bedside hospital stay after hospital stay and doctors appointment after doctors appointment, growing more in more in love and strength to help her fight. And I have gotten to be the one to calm the fears of a sweet child who lived through hell for 4 years and fought and is still fighting many of those fears. I have gotten to watch her love for hearing blossom and learn so many things she was denied for so long!

Christian this is what God has called us too! So many will look at this sweet 17 year old, 10 pound girl and say,  

"GOD WHERE ARE YOU?! WHY DOES THIS GIRL HAVE TO LIVE THIS WAY?! LORD, COME AND HEAL HER, COME AND TAKE HER PAIN PLEASE!!!!! HOW IS THIS FAIR?!?!?!"

Friends, it is not fair. She is no longer available for adoption...this potty seat, in this orphanage is her life now. The small ration of food, the battle lost to other children for food, for blankets, and for attention, will forever be her battle. THIS is her life. For her and many children. Unless we all step out. Listen when I say I KNOW HOW SCARY IT IS! I never never (sad to admit it) had much compassion for special needs. I never pictured myself taking care of special needs children willingly, let alone parent them willingly! It isn't easy. But MAN is it rewarding! It can be SO exhausting and overwhelming, but MAN these children give more than they take! And I know the cost is high to adopt...but where would we be if Jesus said... 

"Sorry God, the cost is much too high, I do not have time and it just does not fit into the plans I had for MY life"

Jesus knew this time on this earth was not HIS. He knew he was not here to live safely and comfortably.  He knew the cost would be a GREAT sacrifice, HIS very life! Friends, this life is not OUR own. We are not here to bring glory to ourselves and live comfortably. The time WE have should be and is HIS! I know adoption is not the only way to live like Christ. But I do know that if as many people on earth who claim to be Christians WOULD obey the call, THERE WOULD BE NO MORE ORPHANS! 

Josh's and my adoption journey is proof that when God calls you HE WILL find a way to make it work. And I have many many other friends who can say the same.  It is just another amazing chance to see Him at work up close and personal!

Look at the faces of these kids....

 Do you see potential surgeries?

Do you see needs your not sure you understand enough to parent?

Are you afraid of what their future may look like and how it may change the course of your family?

Do big sounding needs like cerebral palsy scare you? As I said above I was NOT ready for special needs. When you fill out that form telling the agency what needs you think you can handle I leaned hard towards needs that I thought would keep our lives in the same slow easy pulse of life. But God had other plans. And I am SO glad He did! Our kids, ALL of them, are SUCH blessings! And though it has not been easy, God has gotten us through it all!

Let's meet some cuties waiting for forever!

This little man and girlie have my heart! If we were ready to go back now I would be running to them! Sweet boy has a list of needs that I am pretty sure sound carrier than they are. And this girlie looks like LOVE!

This little guy is 6 (I think) and weighs 10 lbs. and still on a bottle...I have no doubt that he would be in SUCH better shape with the love of a family!

                        All four of these girls have either Spina Bifida or Cerebral Palsy. Each with a sweet twinkle in their eyes..                                     

This sweet girls story breaks my heart! As a young baby the parents were told she needed a surgery that ended up being the wrong surgery and too much was done. The surgery left her incontinent. The parents not having the means to care for her gave her up. She has since lived in humiliation of her special need. Children in orphanages are shamed for not being able to use the bathroom and are not allowed to attend school. A friend's mom sponsored her at a camp in China and said what a sweet sweet girl she is and how much she wants a family!

 Here is another sweet child who has waited too long. Many people who have met her have said what a sweet sweet girl she is! 

 This sweet girl is living in a world of silence like my Abbi. 

I have watched this boy grow older as he waits, Right after we said yes to Isac I saw his face and my heart melted. He file says cerebral Palsy as well but it says he is very on target as far as development!

 These two sweet boys are twins! One is said to possibly have Autism. Because of this China believes the other brother who has no special need will have a better chance at being adopted if they are separated. So heartbreaking knowing how little these kids ever grow up knowing anything about their past, and now it may be further ripped from them!

 This sweet girl had a family go all the way to China and decide she was not meant to be theirs. For one reason or another she was left behind, again. Because of this China is deciding that unless a family comes forward for her they will with draw her paperwork so she can never have the chance to be adopted. She will be termed un-Adoptable. 

Friends, WE have the chance to change the world! WE have the chance to live out what God has called us to do, LOVE. Some needs are bigger some are very very minor, some do not have a need at all (Isac does not have a special need at all!) But one need they all have is a family! Most of us have room in our hearts and our homes if we are willing to give a few things up. I do not pretend that living for God is easy, comes with out struggle and is not scary, but I can promise you it is well worth the journey and WELL worth the blessing to love on these sweet children of God!

For anyone interested even a little bit please do not hesitate to ask questions! 

I leave you with this song that speaks the words of my heart...and I truly believe our Lords.

Be One Natalie Grant

We don’t feel ready, we don’t feel steady

Question what we really have to give

Stay where it’s safer, claim faith but waiver
Is this how we’re really meant to live

We pray but never move
We say but never do

Chorus
It’s time to get our hands dirty
oh oh, oh oh
Be love – there’s a whole lot of hurting
oh oh, oh oh
Calling all hearts, Calling all hands
Calling all feet to take a stand
Why sit around and wait for a miracle to come
When we can be one, When we can be one , When we can be one

A little somethin’ might feel like nothin’
But in His hands it’s all we’ll ever need

To speak life to the broken
Watch the blind eyes open
It’s who He’s calling you and me to be

We can be the change – be the hope
We can be the arms that don’t let go
We can be a light in the dark
We are we are where it starts

Chorus

We can be the light in the dark
We can be the arms that don’t let go

Three Years Ago Today

Three years ago today I watched amazed as few friends brought home children from different parts of the world. Three years ago today we had a one year old who made life...more busy. Three years ago today God stirred our hearts to make a huge change (for us) and leave our church family of seven years (as a married couple, 17 years for me).Three years ago today, God was whispering His promises in my ear that we can do hard things. Three years ago today I doubted His words could be true of ME. Three years ago today, Josh was settling into his job, we were complete with our family (at least for the time) and we had plans to start saving to build our dream home...so one day, we could have the room to adopt children into our family. Three years ago today, that someday became today! With fear of the unknown in our hearts we submitted our letter of intent to adopt our sweet girl and received pre- approval for our sweet Nina!

Thus began a journey of fundraising, paper work, researching, late nights of thinking and worrying about my girl, more paper work and a journey to some of the dearest friends I still have today, my adoption friends. I felt like this part of the journey had to be the hardest part ever! Once I had my girl in my arms, we could get through anything!

But in 3 years, a journey through learning about Tuberous Sclerosis Complex, countless doctor, therapy and hospital visits and three brain surgeries later, I can say that it was for sure only the beginning of learning, growing and honestly, exhaustion.

Nina has grown all of us in our family! If I could only tell you the joy I see on peoples faces when they see her. She is all love that child! Despite all the pain and suffering she has lived through, she still gives more than she receives. There is nothing that makes her smile bigger than being next to and hugging someone.

Nina's life has taught me to enjoy each and every moment of life. There are times since her surgery where I have seen a spark of the Nina before surgery come back. With a word, with an attitude or simply with a small task like climbing up the play ground ladder or the smile a swing can bring to her face! But often times those moments fade and I wont see them again for months, or maybe not at all again. My heart aches for the small moment that was a spark of encouragement and hope in my heart, but each and every time, I hold them more and more precious.

Nina has taught me great patience. The girl is as stubborn as they come. No doubt a life of living in the orphanage, where she was the target of older and stronger kids, fighting over the weaker ones to survive themselves, she learned to hold a little tighter to things she wanted to keep. We heeded the words of all of our adoption reading and training, that food can be a huge trigger for children from orphanages, and even children in the foster care system, as it is something that can be often used as a tool against them, or simply not given enough. And this is a trigger for Nina that as soon as we think we have gotten past it, it rears it's ugly head again. The moment she sees me move towards the kitchen, she starts her pacing from the stove to the table, sometimes crying and stomping her feet or the table when it is not coming fast enough. This was a really eye opening and to my surprise, a VERY tough battle for me to work through. Often lunch and dinner in our home are the busiest moments of the day and by dinner, one of the most exhausting parts of my day. To have to muster an incredible amount of patience, a trial I am still learning to conquer. One I had thought we mastered before surgery very well, but has come and gone many times since surgery. I have learned how to handle the situation with more patience and grace, but it may never be easy. But I have definitely learned how to not react to the moment. To breathe and pray for God to pour extra grace in me so I can spill out onto her.

With all of my adoptive kids, I am overly aware of the emotions they may be showing through their actions, as I know that is how I will be able to see their hearts. This has made me so much more aware of even my biological kids hearts.

Nina's life has taught me to stand up and be the voice that she can not be. I have always been one to shy away from any confrontation, even if it came to medical professionals and my children. Simple things like making phone calls ad scheduling appointments, intimidated me, for fear people could see through the phone to my heart and see how unworthy I felt of the calling to be a parent. But staying alone nights in the hospital with Nina, having to be her voice when no one else was there to stand for her, making appointments and fighting to get her into the therapies she needs, has given me more courage to be the mom she and my other children, need me to be.

Through Nina's life I have learned to look at life one step at a time. to look at the future to plan in advance, but not to stay and dwell there. With Nina's diagnoses it is very hard not to become overwhelmed with how many times we will have to think about brain surgery, or when her kidneys may (or probably will) get worse, or what life with her as a teenager or adult may look like, and just focus on what this week and this day has in store. Because one day that future will be today, and those worries may or may not be what we are facing, but for today I want to enjoy where we are and how far we have come, because today is a gift we will never get to live again.

Through Nina's life I have learned TRUE forgiveness. The same kind of forgiveness I am learning our Heavenly Father has for me. Forgiveness that lives, and feels and experiences the hurt or disappointment of someone else's mistakes or weaknesses, and still truly chooses to move forward with a kiss a hug and the actions of one who has forgotten the past. Oh to be there fully myself would be a great gift!

Next week I will be traveling to Orlando with Nina to undergo another long week of video EEG. A sad reality for Nina to which she is attached to wires and monitored through a video in bed for 5 days to catch seizures. I would be lying if I did not say I am both excited to have confirmed what is going on in her head still, but also terrified at how bad they could get when we are there. (Generally they take her off her seizure medicine so we can be sure to get seizure activity.) After that we will have more information (hopefully) to move forward with surgery again. Going forward with surgery this time was so much harder for us to think about, being we have been through it and saw how much she regressed. But sadly, surgery is generally the best results for kids with TS, and many times they have to do it more than once to rid them selves of seizures. All in all, this is Nina's best chance. We do nothing and her seizures continue to get worse, as they have been on every medicine we have tried, and she does not develop much more than where she is at now, or we try to remove the tumors creating the seizures, in the hopes her body has a fighting chance at progressing. What do you do when your options feel like a lose lose for child. You pray for the Lord to do His mighty work in her life how He feels best and pray as you move forward. These are the moments as a parent that you learn, there are not always easy or right answers, these are the moments you just have to close your eyes tight and trust.

Please pray for Nina, as we have been watching her seizures becoming more frequent and sometimes more intense. They seem to be happening a lot more during the night on these meds so Josh and I have her and Abbi in our room, which means little sleep for either of us, please pray for energy and strength.

As for a quick update on Abbi. If you are not on facebook then you have not seen her super cute video of her hearing for the first time! It is amazing! We go to the audiologist and ENT this week to do a hearing test to check just how much she can hear with the aids, but honestly, I am sure it is still not a lot. She too is still waking up through the night, most the time shes been crying in her sleep.  Pray for her and us as we navigate the roads of  trauma, as she seems to show a lot more symptoms of it. She has been seizure free for more than 50 days!!!!!!!! I can not tell you the relief that brings!!!! Having been on the seizure road with Nina, you can imagine how long it takes to truly feel like you can be ready to announce seizure freedom. But I am so happy to be this far!!!
Isac is doing SO awesome in preschool! Little man knows more than any preschooler should already and seems a little bored with learning lol. Pray for his little heart as I do not think he fully understand yet everything about his adoption, but asks questions a lot about "when he was a baby in China".  It will not be long before the dots begin to connect and he is asking harder to answer questions.

Here are some fun pictures and video of Abbi hearing!

Nina impressing me with her climbing skills

Abbi's favorite game in school!!

Beach time fun!

Hanging out with mama!

Playing with Gak we made in preschool-she did not like it at first but ended up loving it!

Having fun on the ball for a little therapy!

Just looking cute!

Nina LOVES riding the pony!

Abbi rocking the stairs!

Nina lost 2 teeth!!!!

My handsome man!

More Updates on the Noll Clan

*It is a long one but I promise lots of picture at the end!!!

Well blogging just hasn't been in the stars for me this last adoption like I wished it was. But here I am again, getting a chance to fill in more updates with the little time, and many interruptions, as I can.
So after some crazy days in the hospital we were able to get Abbi an, EEG, MRI of her brain, ear structure and liver, a CT scan, draining of her ears, tube placement and ABR. And sense we were in Orlando they ran a MEG scan on Nina. A MEG scan uses magnetic waves to try and find places that there is seizure activity. She and Abbi were both under anesthesia in two different places at once, Josh in one building and me in another, it was nerve wracking to say the least.
Nina's results showed us pretty much what we had already known, major areas in both temporal lobes and right frontal (right behind where they did the resection), but now they had a good visual of it.
The first day Abbi did not even have one seizure. I was not too surprised by this. for one because Abbi's are so random and she could go days without seizures but also because whenever we take Nina off her medicine it usually days a full day for there to be any change. So our neurologist came in and said she sees no seizure activity but she has another day and more test in the morning so we will just keep her hooked up. I was disappointed because I was sure I was seeing seizures and I wanted some answers to what was going on in her little head. I knew it could not be behavior, my gut just told me it was more. Abbi had to go down for a CT so they could get a better look at her liver since the Oncologist was not really sure from the MRI what was going on in her liver. To go anywhere you have to be unhooked from the EEG monitors. And true to seizures, we unhooked her, got in the elevator, and she had a seizure!!! I was screaming inside! But I kept telling myself, at least there are nurses here who saw and can report it, she doesn't usually only have one, and as much as I hate that she is not connected she has to get these other tests done. I just prayed like crazy I was right about her having more that day. Because she had just had a seizure, she slept through the whole CT scan which was nice. We later got confirmation that the mass was what I thought it was, just a benign mass that has a blood clot in the middle of it, making it look like something other than benign. But it was no danger to her.
Through out that whole day my prayers were answered, Abbi had seizures allllllll through the day and night. While I hate that she had to have them I was very happy she had them while she was being videoed and monitored. The neurologist came in the next morning and confirmed that there was seizure activity coming from the left side of her brain, which is completely damaged, and spreading to the right side. And she said like any seizures, you want them stopped so the brain does not make this a learned habit to the point that nothing will stop them. Her recommendation is to try at least three different medicines to try and stop the seizures. If she is still having break through seizures after that, her recommendation is to completely separate the left side of her brain as it does not seem to be performing any other function aside from causing seizures. But , as she said, let's go down the medication road and hope for the best and not think about brain surgery. But how can I not!
DEAR LORD NOT BRAIN SURGERY AGAIN! My mind was completely numb after having that conversation. The thought of walking that road again with another child is...well terrifying! I am praying like crazy and hoping that is not even an option. So for now I focus on the other things I can control...right?
HA! So Abbi goes in to get tubes put in her ears and have her ears drained, and then they do an ABR test, which is a test to see what the brain is hearing. The ENT comes out to tell us the ABR results state that one of Abbi's ears is hearing 100% and the other is hearing moderately! Great news right?!!?!?! Except that Abbi is still not responding to ANYTHING! More mystery. The ENT thinks it is the damage to her brain, so it must be a brain thing as the MRI revealed that the structure of her ears are perfect, and the neurologist thinks it must be the ears as her right side of the brain has adapted to everything else, surely it would have adapted to her hearing...so who knows...we continue to teach her ASL and search for answers.
Last week Abbi had her first physical therapy evaluation done and they want to fit her for a brace to help straiten her foot and leg out. She will start speech this week. And last week I started doing homeschool with Nina and Abbi! (The boys are doing preschool with Nana 3 times a week and me two times a week.) The week of preschool proved to be tough as I am learning to adapt it to the girls because on days of a lot of seizures, neither one of them are awake much of the day. And it did not help that Abbi was covered in a rash from head to toe for 8 days because of an allergy to her seizure medicine. :/ Homeschooling them though is giving me and them the freedom for days when they are having a lot of seizures, to do my own PT, OT and Speech with them (ideas I am getting from their private therapist) and more bonding time with each of the girls. While I struggle with the thought that having them in school all day with professionals may or may not be better than I would be, I also know both girls went a very long time with out a mommy and I want to try and make that time up for them for as long as I can!
Please pray for the days to come. We have follow ups with all of the doctors coming up and I am anxious to get to the audiologist again and figure out our next steps. PLEASE PLEASE pray that Abbi's medicine starts really working well. Since we had to get off her first one because she was allergic we are on drug number two so I am hoping this takes care of the seizures.
Abbi continues to THRIVE as a Noll! It is as if she walked out of that orphanage as if she has been waiting for that day forever and has not looked back! She is super sweet, and happy and such a little toddler!!! She is always trying to please and make people laugh and LOVES to help with whatever task she can! She is still sleeping in our room and has nights where she cries in her sleep often. It is absolutely heartbreaking to not be ale to erase those memories for her. There are those moments when she gets really hurt and you all but have to chase her down so you can love on her so she will understand she does not have to deal with pain alone and nights when I hold on tight to cuddle because she had so many years of putting her self to bed. Often times to fall asleep she would rather find a spot on the hard floor, curl up in a ball and hum and rock herself to sleep. NO MORE baby girl, your mama is here for that!
But I can not wait to see what God has in store for this sweet girl!
Please also pray we can get Nina's seizures under control. While her seizures are pretty mild most of the time, she still has so many of them! She continues to blossom as well and we are always seeing glimpses of who she was!
Isac is such an amazing kid who is doing great in preschool. My mom says he never looks like he is paying attention, but if you ask him a question, he can tell you just what they learned that day! Please pray with us that we can teach him  how to open up more. While I think that Isac had a good life in his foster family I think there is a lot of things going on in his subconscious about his life but he does not know how to talk about it.
I praise God for the journey He has us on everyday! I know in our heart of hearts He is not done adding to our family through adoption. I do not know how or when but some day. For now I continue to advocate when I can and pray for those babies waiting and mamas needing the courage to step forward. If you have EVER felt led to adopt PLEASE PLEASE do not hesitate to ask me questions. The journey is not an easy one, but the front row seat to Gods unfolding of amazing after amazing stories and miracles is astounding!!! You will never regret what He can do in your lives and in the lives of those around you!
Thank you! Love you all!!!!

She is getting so big!!!!

Abbi LOVES watching me put on make up!

My silly boys!

Riding Nana's new pony!

Me and my little girls!

Our family loves having some water fun!

Abbi thinks it is great fun!!!

Signing I LOVE YOU

My 3 four year olds! <3

Physical Therapy for Nina

This girl was so so tough and fantastic in the hospital! Everyone was so impressed with how well she handled everything!

Doing an EEG in style!

Noll dance party!

Look at my piggies!!!

Abbi relaxing with big sis!

First day of Pre- K for these 4!

The boys first day of pre k with Nana and their cousin!

Abbi sporting a hawk

She likes getting dirty!!!

Doing a little PT during school!

Matching colors at school

Finding yellow

LOVE <3