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!
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!|