Monday, November 20, 2017

Lily's journey to now

I decided to write this summary of the events of Lily's short 5 years of life to bring a little more context to those who are trying to piece together the recent events and what brought her to our hospital trip earlier this week.
(I am writing this having had very little sleep over the last 3-4 days so please give some grace in regards to grammar, spelling, etc. as you read on!)

I wasn't sure how much I should share or wanted to share since this is Lily's journey. I know my girl and I really believe that she would share all of it with anyone who wanted to know her story. She is the most loving, sweet and joyful child I have ever met even despite all the trauma she has suffered. I have had many conversations with Lily about why she is in the hospital now and that we are communicating with all of our family, friends, church family, school friends, neighbors, etc. about all that is happening and how everyone is thinking about her and praying for her. She is very aware of all of it I know that it truly means the world to her. She is a very sensitive child and even though she has some challenges, she without a doubt is 100% comprehensive and engaged in conversation.

Let  me start at the beginning - her beginning. Lily was born in China. Nanjing, China to be exact. It is a beautiful picturesque part of the country, but for her there was very little beauty in it. Though we are unsure of what she suffered during her first year of life, we know it was not good. When she was found by authorities abandoned she was malnourished, ill and unable to move on her own. She was transferred to an orphanage after no one came forth to claim her and spent a year there, before her file was sent to our family to consider for adoption. Despite how it sometimes is portrayed in movies, tv dramas and even often via other adoptive blogs, vlogs, etc. it was a very scary and intimidating process. Once we had her file we met with the head doctor at Children's Hospital International Adoption Center to go over the extensive medical file she had. We were adopting an "older child" from the Waiting Child/Special Needs list so we knew she could have a multitude of challenges and were doing our best to be prepared for those challenges by reviewing them with Dr. Staat before "accepting her file". We knew that not only did we have to try and decide how many medical challenges we could handle, but how would that affect the other 4 children we had at home and their lives. After speaking with Dr. Staat we knew Lily had a critical heart condition that surgery was necessary sooner than later for her survival. In addition, she was not very mobile for a child her age and had a "questionable" brain MRI.  While they saw some "areas for concern" on the MRI done in China there was nothing conclusive so we had to decide if mental delays, etc. were something we thought we were prepared to handle. After gathering all the facts from Dr. Staat and praying to know how we were to move forward we accepted her file and began to make arrangements to travel across the globe to bring home our little girl.

I could tell you that it was all exciting and again we looked like you see in the Lifetime movies and while we WERE excited, we were also very scared and didn't know what lied ahead for us and for this precious little girl. When we met Lily in China for the first time on September 1, 2014 she was 2 and 1/2 years old. She was handed to us in the lobby of a hotel in Nanjing where she proceeded to scream bloody murder and try to get away from us. Blessedly at that time she was fairly weak and had the strength more like a 1 year old so we were able to hold her until she calmed down a few hours later. For 2 days she wanted nothing to do with Derek and would only allow me to hold her and I had to carry her everywhere because we quickly learned that her physical complications had been downplayed in her medical reports from China. Not only was she unable to walk, but she couldn't even crawl or pull herself up to standing. If we did support her when standing her little legs would only hold her up about 10 seconds at most. We learned so much about Lily during that 2 weeks in China. Mostly we learned that she was super sweet and had gotten very good at surviving in what had been a very cruel world for her thus far. By the time we flew home on September 11, 2014 we were hers and she was ours. She clinged to me, Derek and Tanner (her oldest new big brother had traveled to China with us to bring her home) at all times.

Over the next few months after bringing her home we worked to get her well enough for her heart surgery which took place in December of 2014.  The surgery was very routine and she came through it perfectly with great results. Within months and lots of physical and occupational therapy she was standing while holding on something and was able to walk some with assistance. That turned into her being able to take a few steps on her own and eventually more and more until she could walk with assistance almost anywhere and for longer periods of time. Within the first year home she began to be able to climb up stairs, get herself in and out of bed and even started feeding herself. That led to being able to go to preschool where she could get more interaction and therapies and eventually to being able to go on the potty like a big girl. She has tried to keep up with her big sister (older by 1 month! ;), Gabby, almost since day 1 which has been such a great thing for her physical development. Through all of this she has remained mostly non-verbal other than "ma", "da", "hi", "bye" and maybe a couple of other words that her family understands but most others would not recognize. Regardless, she tries very very hard to get stronger and catch up developmentally every day. Through all of this she has seen numerous experts at Children's hospital with no answers as to why all of this is happening to her. As time has gone on the conversations that were once centered around "developmental delays" have begun to shift to a potential "syndrome" or other neurological or genetic disorder.
Since often children who have not "caught up" by around age 7 probably are not going to we had decided to work on a plan for her that would include going down the very time consuming and expensive road of genetic testing. The plan was that we would begin that process during the summer between preschool and her starting kindergarten which would be the summer of 2018. We had pretty much resigned ourselves to the fact that she more than likely has some limitations due to a genetic issue and if we knew that going into her "school years" it may help us know how to work with her and assist her better.  In the meantime we just continue on with her occupational therapy, physical therapy and speech therapy as we would regardless of what genetic tests may or may not show us.

That brings us to the events of the last several days. Friday morning, November 18, 2018 started like any normal Friday morning. Everyone has school on Fridays except Lily, as preschool only meets Monday-Thursday.  So after walking her sister, Gabby, to the bus stop we went back home to play like normal. Lily was her normal healthy and happy self. No signs of fever, pain or any other sign of anything being "off" or any illness. At 11am her nanny, Kelsy, arrived so I could get ready to run out to some appointments for the afternoon.  I came home around 3pm to get ready for the afternoon plans and Lily was napping at that time, as she always does. Typically Lily wakes up sometime around 3:30, but often she just stays in her room or bed and plays while she wakes up. If she hasn't come out by 4pm we always go in to get her and wake her up if necessary. Kelsy and Gabby came upstairs at 3:55pm to do just that. It was then that Kelsy saw she was having a seizure and yelled for me to come quick. I ran in and gathered Lily into my lap and sit her up to keep her from choking as she had thrown up and was thrashing her arms, legs and head back and forth.  Her teeth were clenched and though her eye lids were open her eyes were darting back and forth and she would not answer my many desperate please for her to look at me. I literally thought I was going to lose her right then and there are she was clearly hyperventilating - and if you have never seen anyone actually not be able to get sufficient air and hyperventilate let me tell you that it is not like I have ever seen in a hospital show on tv or a movie. It was so so much worse. I was just certain I was losing her because of how desperately and violently she was fighting for air and was unable to unclench her teeth or open her mouth to help get more air in. Thank God that my very fast thinking nanny called 911 right away and stayed on the phone with them until she heard the ambulance pulling up outside our home. She also kept me up to date on what she was doing to try and keep me calm. I was hysterical and honestly don't remember much of it except desperately trying to get Derek to answer his phone although I knew he was in an appointment with a client. After dialing him about a half a dozens times he did pick up the phone and was luckily in the area so he was able to rush home before we left in the ambulance.

Holding her on my lap after the ambulance arrived the EMTs made several attempts to get "rescue meds" into her in order to stop her convulsions, but had difficulty getting her still enough to inject them. Once they got those stopped they began assessing all her vitals and prepping to get her into the ambulance. As she was loaded in the ambulance they began having to resuscitate her and eventually had to intubate her to keep her airway open and get more oxygen into her body as she was not breathing on her own. We were not even off of our street yet when I heard the medical team in the back (they had me sitting in the front of the ambulance) call for air care and tell the driver to pull off at Good Shepherd church so a helicopter to land to pick us up.  After what I was hearing registered I realized how much trouble she was really in and how close we were to losing her. I just prayed and prayed and prayed.

The air car unit arrived and loaded us up. Lily and her medical team in the back and me and the pilot up front. Derek drove and met us at Children's trauma center. Upon arriving at Children's they brought her in to a trauma bay and proceeded to work on stabilizing her. They allowed us to stand right outside the open doorway and allowed us to keep an eye on her and kept us up to date on everything they were doing and why. There were 15 people working on her including 4 doctors consulting on next steps as everyone worked. After about a half an hour they stabilized her enough to take us up to the Pediatric Intensive Care Unit. We arrived in a room around 5:30pm were Lily remained intubated and sedated. They ordered numerous tests checking for toxins, bacterial infections, brain swelling, abdominal issues (since she had been repeatedly throwing up since the seizures started, etc). Finally at around 11:30pm they were able to remove the breathing tube from Lily's throat. While this was a HUGE victory once the tube was removed she began throwing up. She was throwing up while otherwise being unresponsive and was causing her to choke as she was unable to sit up or fully spit it out of her nose and throat. Of course, the fear was she would aspirate on the vomit. It was at this time that the decision was made to insert a tube threw her nose and into her stomach to compress the stomach and keep all the stomach fluids coming out through the tube.

Lily finally woke up and became responsive for us around 4:30am on Saturday, November 19th.  She opened her eyes and began being able to answer our "yes" or "no" questions by nodding and even was able to say "dad" in response to seeing Derek sleeping on the pull out chair in the corner of the room. It was a miracle and such a blessing. We still had no results or answers in regards to why any of this had happened. She was getting electrolytes via IV, as well as, antibiotics and an anti-seizure medication through all of this.

Throughout the day on Saturday there were teams of doctors and nurses in her room from different departments almost continuously trying to assess her and come up with some collaboration of how to move forward. During this time she received another CT brain scan and an ultrasound of her abdomen since she had continued to throw up every hour or so despite not eating and having the NG tube and had been complaining of belly pain.  They were also able to determine through urine and blood tests that her electrolytes were dangerously low even though she had been receiving them via IV and they had not been low upon admittance. This could potentially account for abdominal pain and lethargy. This also led to many other questions about why this would be happening. They began high dose sodium and potassium drips and try and balance those back out.
The rest of Saturday was pretty awful.  After being alert and awake for a very short time Saturday morning, Lily fell back into a very lethargic and unresponsive state. At about 5pm we witnessed another seizure, albeit much less intense than the one that brought her here since she was currently on seizure medication. They administered a rescue drug to stop the seizure after about 5 minutes. They then ordered another and more long term EEG test (she had done a 25 minute one earlier in the day). As the nurse from neurology was setting up the electrodes for this 24hr EEG Lily began to have another seizure. They discontinued setting up the EEG and rushed her down to get another CT scan in hopes they may see a change in the brain.  They had to administer another rescue drug in order to stop the seizure. Once back up in her room around 10pm, they resumed setting up the long term EEG. Lily was able to rest some after they got that test set up.

Sunday I woke up at about 5:45 when I heard Lily stirring in her bed. She was alert and awake and even smiling when I went to her bedside to check on her. I let her know that daddy and I had both spent the night with her and he was still sleeping in the corner. She proceeded to sit up, point to daddy and even told her nurse where her daddy was by pointing and saying "daddy".  It was an amazing thing to see after watching her have no ability to use any of her limbs almost at all up until this point.

Throughout Sunday we continued to meet with doctors and discuss next steps and thoughts as to what treatments to follow up on. Her electrolyte levels were back to baseline, she had stopped throwing up so we were able to remove the NG tube and she continued to be seizure free and was able to get the EEG taken off. We began talking with specialists from the Genetics department about seeing if original seizure could have been triggered by a genetic condition. Neurology and Genetics are now working closely with us to try and get some answers since we have exhausted nearly every other possible channels.
Derek went home Sunday evening to be with the other kids and get them off to school in the morning. It was hard to be left here at the hospital alone with my thoughts and fears, but I couldn't imagine sitting here with anyone either as I was too exhausted to think straight let alone have any kind of conversation. I guess that is one of the awesome things about Derek - I get energy and emotional support just being in the same room with him even if neither one of us can get up the energy to talk. He is "my person" and can make pretty much any unbearable situation bearable. Up here on the Neurology floor they only have to check Lily every 4 hours so we were able to get two good stretches of mostly uninterrupted sleep overnight which was absolutely heavenly for both Lily and me! The night and most of the day today have gone super fast and we are rounding our way to the finish line to get home I just know it!

So today have discussed that they did find a small "area for possible concern" on her last CT scan so she went for an MRI today, Monday, November 20th so they can get a better more detailed picture of the brain to determine what significance what they saw may have - if anything.  It seems to be the most viable path to answers since we have known that she could, and most likely does, have an underlying genetic condition. It is most likely what has kept her from being able to catch up fully with her peers developmentally or being able to speak. The doctors feel this may be something that has taken until now while her brain has continued to grow and mature for significant issues, like the seizures, to develop.  I pray that we are able to arrive at some definitive answers over the next few weeks as it will take time for all of the genetic testing to confirm or deny anything they may be thinking unless something definitive and obvious can be found on the MRI from today. While there won't be a way to "fix" anything we find that is genetic in nature, it will still hopefully give us a better understanding or her challenges and allow us to embrace what the future may bring for Lily and for us. We will hopefully have those answers later today after the Neurology team is able to look over and discuss the film.

In the meantime, Lily is growing stronger. She is coming back around from the sedation she underwent for the MRI this morning and is drinking and keeping the fluids down which is great news. If she continues they will allow her to eat maybe tonight for dinner time. She is so excited that ALL of her brothers and sister will be able to come see her in her hospital room tonight. She misses her family desperately! This afternoon we are resting in her room and have no more testing scheduled as of now. It is a welcome break for sure! 

We do not know what the future holds for Lily or our family, but I am eternally grateful that she is still with us. I know that is not always the outcome of such a series of events with our precious children.  And while in prayer today I was reminded that if we had not been sent her file and had not decided to move forward with her adoption that she may not be here today. The chances of her receiving sufficient medical care or maybe any medical care if she had remained in China and had this event there would have been slim. It is almost too much to consider. I was also reminded of how many little children just like her will never get a chance at having a family and growing up surrounded by love and acceptance. It certainly puts things into perspective and helps to snap me out of it when I start to feel sad for Lily or get scared or overwhelmed about any of the challenges that we may be facing in the future.
Regardless of what the answers are that come to us about Lily over the next hours, days and weeks, she is still the same sweet soul that can light up a room with her smile. She is the same little girl who just 3 short years ago couldn't perform almost any physical task regardless of how small and now she can do almost anything her siblings can do even if it means she does it at a little bit slower pace. She is the same little girl that has endured so so much tragedy in her life yet smiles through it all and overcomes everything thrown at her with her joy firmly in tact. She is truly an inspiration to me, Derek, her siblings, extended family and anyone who has ever had the privilege of getting to know her.  All of her nurses, techs, etc. that have worked with her during her few days here so far have all remarked at how incredibly sweet she is despite everything they have had to do to her. She is a strong girl too and continues to fight to get stronger every hour.

Please know that your continued prayers mean everything to us and we are so grateful for each and every one of you reading this.  Our specific prayer right now is that she can get strong enough to go home as soon as possible and that we will have clear answers for how to proceed in her future and in regards to any potential health concerns we may be dealing with and avoid any further seizures.  Please join us in that prayer and in believing for it to be answered. Praising God for all the answered prayers thus far!

Much love,
Jessica (aka Mom :)

Wednesday, April 22, 2015

It's Spring and Flowers are Blooming!

7 months and 21 days. That is how long Liliana has been with us, but I truly can not remember a time without her. And so much has happened in the last 7 months that she is almost unrecognizable as the child that we first met in the hotel lobby in Nanjing, China.

Lily has just blossomed into an entirely different child over the last several months.  I really don't even think that is a powerful enough statement for what we have witnessed!  

When I think back to that first afternoon with her back in our hotel suite I want to cry sometimes. It was impossibly scary (for all of us), completely overwhelming and just so full of emotions I am not even sure have a name. I think we were all racked with grief and mourning all of the loss that came with such a beautiful gift as adoption. Especially in the case of children adopted from a country like China who won't have the opportunity to ever meet their birth parents or even know the answer to any questions of "why" that they will ever have. 

It was scary as we realized just how much more severe her physical limitations were than we had known and wondering what that would look like for her in the future. And just seeing such a precious and beautiful child who is alive but just doesn't have any life in their eyes was devastating. We could see the loss and extreme sadness in her face and it was absolutely heartbreaking. I know all this may sound grim and like such a negative view, but I want to be real. We were so thankful to have her in our arms but terrified at the same time. 

Here we are 7 months and 21 days later and to see a picture of her then to a picture of her now I'll bet you wouldn't be able to tell they were the same child! We are her family and she knows it. She is full of life and joy and health. 

I heard a quote just this morning while listening to one of my health and wellness pod casts that said, "Your brain can only do one of two things but not both at the same time. It either is protecting you or it is growing you." Wow.....The proof of that statement in my daughter Lily's life is unmistakable!  For the first two and a half years of her life she had to protect herself. It was the only thing her brain could and would concentrate on. When we met her we couldn't believe that a child of her age couldn't walk, crawl or even stand on her own. She truly had just been surviving. That has now clearly turned into thriving over these last several months. Once she knew she didn't need to protect herself anymore she began to make leaps and bounds in growing and mastering new skills. The love and protection that her family offers her has been enough to overcome so many of her difficulties. It has been nothing short of a miracle to witness. 

All ready for school and the picture of health and happiness (look at those rosy cheeks!)!

Just last week she started pre-school here in our school district (we now have 5 kids in 5 different school buildings - ahhhh!) and she has been blooming right before our eyes.  Last Tuesday was her first day and she cried and sobbed for me not to leave her - that was very tough. But the teacher stayed in contact via text and let me know that she was doing great throughout the morning. On the 2nd day it was the same thing. On her last day of the week last week, Thursday, I stayed for the first 20 minutes to see how she did and I was completely blown away.  I literally saw a side of Lily that I had never seen before. As the kids sat in circle time and sang the "good morning" song she watched unmoving and emotionless. Each child has a name card that is drawn from a basket and their name gets inserted into the song at which time they get up, grab their name card and place it on the appropriate place on the board. I watched as each child did this and then they got to Lily. I thought she would just sit there as they passed over her name, but she immediately (although still without any expression) got up walked over took her name card and attempted to place it int he correct spot on the board before backing up and plopping back down in her seat. It was AMAZING!!!  After only 3 days in this classroom she was participating pretty much as well as any of the other children. I was a proud momma - and I cried. I am such a sap sometimes!!! ;)

Since that morning I have been getting regular updates from her teacher letting me know how great she is doing and how she keeps progressing each day (she goes Monday-Thursday 9:15-noon). Here her latest note from today:
"WOW!  Lily just had the BEST day!  Ms. Angela's class came to see Julie, the Naturalist from Sharon Woods.  One of the little boys in her class is the sweetest thing ever and he just took Lily under his wing and was so precious with her!  He sat next to her while we saw a turtle and a toad and then played with her at the Sensory Table for a long time and then Lily followed him into centers and they played some more!  She SMILED at him and at all of us today!!  And the sun came out at the same time and we were just thrilled.
She smiled at me from the window at the bus.  She also said "more" and signed more at snack for goldfish crackers!

First day of school

In addition to the new adventure of going to school, while I do drive her in every morning, she comes home on the bus. The first week was a little rough. She managed it, but was clearly upset about it, but we stuck it out. I just returned from getting her off the bus today and I can tell you she was smiling ear to ear. As the bus pulls up I see her sweet little face looking through the window of the front seat and my heart nearly explodes with happiness and gratitude for the gift of being able to witness the blossoming of my little Lily! 

I have seen such a transformation in her just in the last week.  I know my girl pretty well by now and I am certain that she has grown in confidence. I was so nervous to let her start school, but I now think that sometimes I need to learn to just get out of the way and let things progress the way they will. Most of the time I am trying to protect her from things that scare her or might make her uncomfortable. While there is very good reason for that I am now learning that perhaps allowing her to feel those things but realize that she is now in the safety and security of people that love her is what is ultimately allowing her to get over them and heal.  With her increased confidence this week she has begun to say more words, walk with more speed and balance (this is a BIG deal for her), begin to explore new ways of play and be a little more outspoken about what she wants and doesn't want (yep, she is becoming a full fledged 3 year old! ;).  

We also celebrated Lily's 3rd birthday at the beginning of this month.  It was amazing to see how excited she was and how she clearly understood we were celebrating her. It was touching to see the joy and love bursting from her even as we sang her "Happy Birthday".  This girl is crazy about her family and all the fun that it brings! ;)
Happy 3rd Birthday!

We also did her 6 month check up at the beginning of April with the group that first saw her when she arrived home here back in September.  They were all very impressed with the amount of progress she had made and with how healthy she looked.  The same phrase was repeated by every doctor and specialist that saw her, "she looks & acts like a different kid". Lily is still struggling with a few areas including potentially her hearing and neurology, but their isn't anything alarming or scary.  It was mentioned that we may want to explore some genetic testing in the next few months and we will continue with audiology to rule out any issues with her hearing, but for now we are taking one day at a time. I think that she is going to continue to amaze not only us but the doctors and specialists in her life. Lily isn't just a survivor; she is a fighter! Her name may imply "delicate & fragile" but she couldn't be further from that. She is strong, tough and smart. And if I have learned anything from her already over the last 7 months it's that wonders never cease and I know God has some big plans for this little girl and I think she intends to fulfill them! 

And just because often seeing is believing, here is a line up of one pic from each of the last 7 months. Amazing the transformation!!

Lily on the plane ride home from China - Sept 11, 2014

Lily home 1 month 

Lily home 2 months

Lily home 3 months

Lily home 4 months

Lily home 5 months

Lily home 6 months

Lily home 7 months!

Thank you all for continuing to follow along this journey with us and God bless!

Jessy & the Tye Family

Wednesday, February 11, 2015

Half Chinese: 5 months home

Five months...that is how long we have been home with Lily, TODAY!  It is hard to believe it has already been five months but it is also impossible to remember life without her.  Our family has gone through so many adjustments since coming home.  It certainly hasn't only been difficult on Lily although I dare say I can't truly imagine what this transition has been and continues to be for her.

I do want to be super real in the entry while protecting Lily and our family, of course, but I feel so much responsibility to be a voice that other adoptive parents can hear when they are feeling alone or different from what they thought their situation would look like.  I know when we started our journey I poured through adoption blogs, you tube videos of "gotcha days", books, etc. Everything I saw and most everything I read talked about how amazing the entire process was and how the moment they laid eyes on their child it was instant love and bliss (I could almost see them running towards each other in a sea of daisies before embracing and falling together as one big happy family!).

Our reality was so very different than what I had envisioned in my mind and what I knew of everyone else's experience. When we met Liliana she was much more frail than we had anticipated and had more challenges than we had anticipated. She refused to do much of anything the first couple of days with us and that was so scary.  I don't think we had given enough thought and allowance for the amount of loss, neglect and disappointment she had already faced in her young life. We were completely unprepared and I believe the same was true for her.
Please don't read that we were upset or disappointed or regretful as none of that was the case. I think we were really just not prepared and felt that some how we were the only adoptive parents that thought this. The feelings that come along with a journey like this both from the family and the children can be unexpected. We couldn't plug our situation into those stories we had followed from others. Our child, our journey, our struggles, our victories weren't going to fit "that" mold. Maybe the mold didn't really fit anyone's because it was made up - maybe we had subconsciously made it up.

I say all of this because if you are reading this now and have just met your new child, or are planning to bring home your child soon maybe you will need this. Or maybe you have been home for a while with your child and you have felt alone in your feelings and needed to know that you aren't.  At times I have felt so unprepared, overwhelmed, incapable, unloving, faithless, weak, tired, alone, sad, depressed and undeserving.  This has without a doubt been the most trying and relentless 5 months of our lives. With 4 other children and loads of other responsibilities its not as if you can just disappear into a world alone with your newly adopted child (who may very well demand that even if you can't give it) until you both emerge bonded and healed. Man some days I wish I could do just that - at least maybe the disappear part!  HA!
But seriously, let me say that it has also been the most incredible 5 months in so many ways. I want to offer to you that if you can relate to any of what I have written or are able to in the future just know that you are NOT alone and it does get better.

I began a bible study last week called "Believing God" by Beth Moore. It just could not have come at a better time for me. I had been struggling a great deal in recent weeks and really needed what God was going to do for me and through me during this study.  As I was working on the homework portion of the study I was focusing in on what I really needed to be believing God for and I realized that I was really struggling with believing him for Lily's complete healing. Two months ago she was given a life saving heart procedure and we had begun to see her get stronger, but there were so many areas that just were still not developing. Communication with Lily was very difficult at times (and we even have a Chinese Au Pair!) and although she could clearly fully understand anything told to her in Mandarin or English we could not understand her reactions because she would not speak to us or indicate her needs or wants other than ultimately in break downs and fits of crying. Not knowing what the cause of these were most of the time had started to become very difficult to handle. I had begun to question of things would ever get better.What was I doing wrong? Why couldn't I help Lily more?  It appeared no one else I knew out there was dealing with this - at least not that they talked about. I worried all the time and had almost stopped praying for God to do anything to help us.  I was beginning to feel very isolated and alone - even next to my husband who was and is very supportive and also trying to do his best through this process.

So, as I was saying, through the homework I was able to pinpoint that I really needed to get back to praying for Lily and my entire family as a whole and to really just step up and be the mom and let God be God. It was never my job to heal her (or "us") anyway. I started believing and knowing that God would have His will with Lily and our family and that her wholeness (in whatever state that would be) would bring Him glory and honor and that it would be nothing that I could lay claim to. It was that very weekend (just this past week) that we began to see AMAZING strides in her development!  While she is still gaining strength and a bit unsteady on her feet she has begun to do many amazing things physically including climbing steps and playground ladders by herself!  She will go outside, climb the ladder up to our play set, walk across the platform to the slide, sit down and slide down by herself. She couldn't even begin to do that just over a week ago.  She has also begun trying to jump on the trampoline like her brothers and sister. While her feet don't yet completely leave the ground, her heels and now coming up and she is trying harder and harder every day. It is only a matter of time!

And while we are on the subject of  play set equipment I have to point out that when we brought her home she was completely terrified of a baby swing. We would try to put her in them to swing and she would just scream and cry. Then, after a couple of months, we were able to swing her back and forth a few times before she would begin to fuss and want out. Then suddenly she decided that she was all about the swing and it is almost difficult to get her to leave the swings now! She talks and laughs and giggles the entire time praise God!

Trying her hand at Tic-Tac-Toe on the big playset

Some swing set time in the back yard with big brother and sister

There also seems to almost be a changed in her confidence level. It's like a wall has come down and she tries things that she had been unwilling or unable to try before. She has also begun to talk - A LOT. While much of it is just strings of babble she has now started to say things that we say to her in one or two word phrases. And for months she only used the sign for "more" ,but recently has begun using "please" instead of crying to communicate to us that she needs or wants something. It we don't know what it is we can ask her to "show us" and she will lead us to where whatever she may want is. Just this morning Morgan (our Au Pair) and I were playing "tea party" with Lily and not only was she babbling these very long (and serious I might add ;) conversations with us but she began handing us our cups and saying "bay" (Bei) which is Mandarin for cup. Just out of the blue like that! Then moments later we were playing a game where I tell her to "stand up" and "sit down" and we both do the action together (builds her leg and core strength) when she suddenly she began saying "STAND UP" and "SIT"! And if I didn't stand quickly enough she was pushing on my bottom with her hand and laughing...did I ever mention how funny she is? Well, she is hilarious!

Hanging out at mommy's feet while I cook dinner.

My girls!

And then there are her chiropractic visits which we try to see to every week to two weeks.  Lily would always cry and be very nervous when we would go to see the doctor.  Dr. Crisci  was ever patient and persistent in winning her trust - God love him! This past week she was all smiles and even tried to carry on a conversation with the good doctor (between you and me I think it made his week! ;)

She has also started to become genuinely affectionate with us. In the past she would hug us or lay her head on our shoulders and even offered kisses from time to time, but they seemed hollow somehow. Like she was preforming or would only lean on you when she needed you (fiercely independent this one! :) especially when in public and she wanted your security. I mean I know that we are her family and I believe she does love us and is bonded to us, but she just didn't have a desire to be affectionate really or show us. I suspect she has been learning how by watching us as just since this weekend that too has changed. She was reaching for me or Derek or Gabby and hugging us just to show affection (we are still working on the unsolicited kisses!).

My sweet sweet girl

Freshly painted nails!

Forever friends

Sweet sisterly kisses

Writing this update out today has brought on many tears for me. Joyful tears and tears full of sorrow, and sadness and even shame. So much has happened in 5 months and I know so much more is in the very near future. I hope from the very deepest part of my soul that what I have written will help other parents that may be struggling with the reality of toddler adoption and what they may have envisioned or dreamed of....even if your struggles or those of your adoptive toddler have not been as great as what maybe we have experienced.

Whatever the circumstances or outcome of bringing your child home, just know that you are not alone in your struggles or your successes and it is worth it. Every.Single.Minute.Will.Be.Worth.It.......Because THEY are worth it!
And if you are reading this and want someone to talk to about your struggles please do not hesitate to contact me via email.  I would be happy to talk with you, pray with you or just listen.  Being able to talk to someone else who has been there (is still there!) and won't judge can be a sanity saver. We should all be in this truly does take a village. It was always meant to be that way :)

Before I close down my computer I want to say that our life has been enriched in so many ways since bringing Lily home. Our boys love her so much and she loves them right back. Her sister is also her best friend and who she follows tirelessly in everything she does all day every day! Our house is filled with such laughter and joy much more than it is filled with anything else and it is because of these 5 incredible kids who all offer exactly what they are meant to bring to our beautiful family.  And for me it is a total dream come true to be able to watch my two daughters play together every day and see the relationship and bond that is growing between them.  And to see my boys to be as sweet and loving to their little sisters as they are.  For them to say things like 8 y/o Parker did the other day when he asked if his sister, Lily, could come celebrate Chinese New Year with his class at school "since she is half Chinese"?  Oh, God love that boy and how he sees things so pure and beautiful and perfectly uncomplicated. How an 8 year old can understand that adoption doesn't erase or change who you are, but means you are now part of something bigger than you were before. Now she is no longer just Lily, but she is part of a bigger whole that makes up the Tye family. He sees it so simply. She doesn't lose who she is, but has been grafted into something new. Lily will continue to grow and thrive in the love and support of her family. And we will each continue to grow and thrive because of what this journey has and will continue to teach us.

God Bless and thank you for reading!

Tea Party with friends

Giving Ling a ride

Brunch with Grandma

That's some seriously great hair!

Making kale chips with Gabby


Brothers and sisters

What beauties - no doubt!

Sunday, January 18, 2015

Don't Hide Your Light - Our Children are Counting on You!

So if you follow this blog you may remember that about a month and a half ago I drug out the "ole soapbox", climbed up on it and preached (wrote) to all who would listen (read:)! 
It is not something I do often - I think it may be the only the second time in the history of this blog I have ever addressed anything other than my own family's journey - but I decided that maybe it is something I (and many other Christians?) aren't doing enough. I think I am too quiet about my faith and my God and what I know to be truth because the Bible says it is. It is the truth as far as I can understand it and I really want to shout it out from this platform. 
The "world" has no issue giving us all it's opinion. I think largely because if you do not read, know and believe in the word of God then your own opinion and that of others is really the only thing you have to go on. I have heard and seen so many people perpetuating statements and beliefs via social media, blogs and newsprint regarding adoption that I believe are truly wrong and misleading. In these opinions one thing is commonly shared and it is that adoption causes so many fall outs and causalities. Most often that it is a devastating event for birth moms and the children for whom an adoption plan is made and that they will most definitely have "issue" with being adopted as adults. (I am not saying that any of this never applies, but it is certainly not a given)  And they typically go on to imply (or boldly state) that allowing people to believe God's plan had anything to do with our or anyone else's adoption is dangerous and reckless to say the least.  Or at least that it is insensitive for us to discuss it out loud because not everyones adoption ends or starts well and therefore it is best to just not discuss it - at least not details - lest we offend or hurt anyone now or in the future. 
I just couldn't disagree more and I really wanted to get this out there. Maybe there is someone who needs this right now?
 Listen, Moses was adopted - MOSES! Do you think for one second that God didn't know Moses would be adopted and that it would be by the Pharaoh's daughter and the leader of a nation that would enslave his people, an entirely different culture from an entirely different nation, for years? Do you think the unfortunate circumstances of Jochebed having to give up her child were not used for good? Moses went on to save an entire nation of people! God did not cause the series of events that led to the tragic situations to follow, but nor was he surprised by them and he used them for the Kingdom. Can you imagine if followers of Christ had stayed quiet about Moses' adoption or the circumstances that surrounded it? What if people decided there had been too much pain for his birth mother or too much sadness in the fact that a nation of sons were ordered to die by an evil man and that we shouldn't talk about it. Or just leave out details so that it is more pleasant and politically correct? So as to not be insensitive to his mother, his past or his people or the nation he came from. That somehow talking about his life and adoption story dilutes the very real emotions that certainly he and others involved must have gone through. I really don't think that it does. 
 Look, if you are a private person and do want to choose to tell any details of your life to anyone that is completely your choice - you are not a subject in the Bible.  And I am not here to judge those who aren't as vocal as I may be. But why are those of us who want to share told we shouldn't or at least that we should "really think about" what we say or lay claim to? God has not instructed me to be quiet, but to boldly speak of him moving in our lives.  
If you aren't a Christian and do not know God's word then I can understand that you may not understand why adoption is spoken about so freely and openly in the bible and why I believe that as a Christian it is also my obligation to shine a light on this concept as God created it. But for those of us who know the word I can not understand the desire for silence or keeping it so hushed. It can be our very endorsement of such a union that inspires others to look into how they can get in on it. Sharing how God has worked in your life can inspire and influence others - maybe the very people God gave you for an audience just the way he wanted it. We shouldn't be afraid to talk about how beautiful, scary, sad, rewarding and life changing the adoption process may be! 
I don't think there is any room for misunderstanding God's view of adoption if you read His word. If Moses' story isn't convincing to you maybe Esther resonates more?  Esther's parents died - we don't know how, but it is tragic none the less. We are told that her cousin "brings her up" so we would assume she must have been young when she lost her parents. God did not cause that tragic loss and it was not something shameful for Esther or to make us feel pity or sadness for this orphan who suffered a great loss early in her young life. What the Bible concentrates on, however, is the fact that Esther was used for mighty things in the Kingdom - things much bigger than herself.  And that the fact that she was adopted did not define who she was or wasn't, but I believe her story was included to help us see that no matter what your start in life is that God has a plan for you and it is for good.  God knew the days of her life before she was formed (Psalm 139:15) - the good and the bad -  and He knew exactly what she would accomplish for so many people. Esther was a Jewish girl in a foreign land (Persia) where not only was she an outsider, but she was in danger of being killed along with the rest of her people. What she had gone through in her life was used to make her who she was and that was exactly the person she needed to be. She was right where she was supposed to be and God used her and her faithfulness to accomplish mighty things. He did not want this to be kept quite or not talked about, but rather to be used boldly for all of His children to read and know. 
God's words are loud and clear that he knows all of our days....children that are adopted didn't somehow get overlooked in the scripture and to be excluded. They aren't somehow poor children that God didn't love as much. God CREATED adoption. It is a beautiful outcome for what can sometimes be a difficult (and yes loss filled) scenario. This is a broken and fallen world, no doubt. To spread the word that adoption is anything but beautiful breaks my heart! Entire families are build because of adoption. There is and will be hurt associated with the circumstances surrounding many types of adoption for possibly all parties involved. That is part of living in this world. We can not shrink from adoption or advocacy for it because it may hurt someones feelings or because the world talks about it differently than God does. We are supposed to look, act and think differently than "the world". We know God's word and have a commission to share that with the world. It is a light to shine for God and not to be hidden away. God's word is called the "Good News" and we should not forget that!
As Christians we know that our children are not really our children anyway!  Whether, biological or otherwise, we are ALL God's children - even if you don't know or believe that you are still His child. He does not require us to believe in Him for Him to believe in us. If we are teaching the children that God has entrusted to us that we are all His and that God himself said that we are all to be adopted into the Kingdom - we are all heirs - then imagine how little it really matters in who they are and what they can be based on who gave birth to them. I am not trying to diminish the relationship you have with your children or that a birth mom has in a child's life, but I am trying to point out how little it matters to our Creator. You are who you are to Him from before you were even formed.  If anyone feels they are somehow less than because of adoption or that it defines who they are in anyway then just imagine the how freeing it would be to learn that in the Creator's eyes we are all adopted into the ultimate family! Our Father has a "big big house" (in the immortal words of Audio Adrenaline:) and we will all be adopted into it together! In the end all of us are in the same family anyway. Regardless of nation, location, last name,etc.  Thank you, Lord!
 I am and will take that stand for my children, their birth mothers (known and unknown) and my family. I Thank you God for your redeeming plan for each of the children you have entrusted to me, adopted or otherwise! Okay, stepping off my soap box.....for now! 

"Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house." Matthew 5:15 

"Before I formed you in the womb I knew you,
    before you were born I set you apart;    I appointed you as a prophet to the nations.” Jeremiah 1:5

"My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
    all the days ordained for me were written in your book
     before one of them came to be." Psalm 139:15-16

 "But when God, who set me apart from my mother’s womb and called me by his grace, was pleased "Galatians 1:15

"For I know the plans I have for you,” declares the Lord, “plans to prosperyou and not to harm you, plans to give you hope and a future." Jeremiah 29:11

"Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will." Romans 12:2

Religion that is pure and undefiled before God, the Father, is this: to visit orphans and widows in their affliction, and to keep oneself unstained from the world." James 1:27

“I will not leave you as orphans; I will come to you." John 14:18

"Learn to do good; seek justice, correct oppression; bring justice to the fatherless, plead the widow's cause." Isaiah 1:17

Monday, December 29, 2014

All "Patched Up"

**Warning this is a picture heavy post!**

These pictures were taken about 5 months apart - you can barely even tell they are of the same girl! 
The pic on the right was one that our agency sent to us while we were waiting to go get Lily. It was sent to us by her orphanage the month we left for China (August 2014). The one of the left was taken by me this month (Dec. 2014).

It's been a little over a month since my last post and longer than that since my last update and SO much has happened. We have celebrated 2 holidays, traveled out of state twice and even had a heart surgery!  The changes in Lily's physical self has been pretty major. Her surgery was on December 3rd and though it was a very successful procedure overall it took her several days of recovery to even be able to keep down any food. Once she was able to begin eating and drinking her strength came back...... and then some.  Since then her physical abilities have been growing by leaps and bounds. It has truly been amazing. We have watched this beautiful little girl emerge from the shell of her former self. Where she used to sit in the same spot quietly for long periods of time and play she now almost never sits still. She used to lay completely still and quiet when you changed her diaper and now she "helps" and squirms all over the place like you would expect a toddler to do!  She walks almost all the time now on her own - though still with not great balance she will take the occasional spill she is still trying to do it all the time now. Before she would mostly hold onto things or just refuse to try and walk all together. We had actually written down that our goal was for her to be walking by Christmas and that she did! No more counting steps she takes because now her taking steps wherever she wants to go is the norm. Next goal: running!
I am just so excited to see her all "patched up" :)  We also got great news on all other MRIs and tests that we had run the same day as her surgery. All systems are a "go" and everything looks PERFECT!!! Now to get on with the business of healing and moving forward!

Our little patient a couple of days after surgery. We were reading the card that came with the "prayer shawl" that a friend brought us. 
At Lego Land during our trip to Florida (all the siblings together for a pic!)

 My loves at Indian Rocks beach, Florida 
Lily's first time at the ocean!

 Enjoying the pool at our condo in Florida
4 of the 5 kiddos at the Clearwater Marine Aquarium - had to go see Winter and Hope from Dolphin Tale :)

Along with the physical endurance she has clearly gained the heart procedure has clearly helped make her feel better able to take deep breaths and really use those lungs. We had a difficult time getting her to vocalize just a few weeks ago and now she yells and laughs and talks all the time. It seems that she really likes to hear herself growling since that is what she does most often - through a clenched smiled that usually ends up with her chasing one of us and laughing! She also has a pretty good line up of Mandarin words and phrases and a handful of English words as well. Lily is so observant and if she watches someone do anything just once you can bet she will be trying to do it on her own very soon. She is also very tidy and likes to put her things where she knows they belong. Like when we come inside she will take her shoes and coat and walk them into the mudroom and place them in her cubby. Or if there is a book sitting on the floor she will pick it up and place it on the shelf. Or in her room she will pick up her pajamas and put them on the rocking chair where we always set out the girls pjs for that day.

She is still just a super great sleeper, too. She takes a nap easily every afternoon and is always easy to go to sleep at night and stills sleeps a full 12 hours each night - I wish she could teach her big sister, Gabby, how that works! :)

We are also seeing such a blossoming in her personality. Where she used to not voice an opinion on most things she is now very vocal.  I love to see her shake her head no or get excited when she sees something she likes. It is wonderful to see her realize that she is accepted no matter what and that she can tell us what she needs and wants and we will meet those needs.
Rolling out Christmas cookies

 Christmas morning  - playing on the new "rollercoaster" that was left under the tree ;)
Just waiting on breakfast to arrive :)

Christmas Eve at Grandma Jeannie's

Her relationship with her sister is growing stronger every day too. Gabby is one of the only people she will give a kiss to anytime she is asked. She also loves to hug Gabby. Surprisingly Gabby has really been so sweet to Lily (I only say surprisingly because I thought there would be a lot more competition from the very outgoing and bossy Gabby! ;) and I love to see that relationship developing from it. Gabby speaks so sweetly to Lily and is always hugging her and kissing her. As a result anywhere that Gabby goes Lily wants to go and anything that Gabby does Lily wants to do also. One of the best examples of Lily learning from Gabby I discovered the first time I yelled Lily's name from another room. I yelled for her like I yell for Gabby when I am not sure what room they are in. I was in the kitchen making dinner and just yelled, "Liiillllllyyyyy!" Lily yelled "Whhhhaaaatttt!" from the other room just like she had heard her sister do so many times before. Seems like such a little thing but was a defining moment for us :)

The sweetest things I have ever seen! So blessed :)

Having fun and waiting to see Santa at the Montgomery Christmas celebration (this was the weekend after her surgery!)

Just getting another hug from big sis!

Being goofy!  I LOVE this girl's sense of humor!! 

Holding hands........

I am just so amazed every day by all the progress Lily has made an continues to make. It is truly nothing short of a miracle. Seeing her experience so many things for the first time with our family is just incredible. And watching her learn new things and master them is exhilarating and so rewarding! To think that just about 3 months ago she couldn't even stand on her own is unbelievable. I know that 3 months from now we will not believe what she will be doing on her own.  I am confident that she will continue to amaze us!

Look at this bunch! Lily, Morgan (Au Pair & "big sis" :), Parker, Tanner, Max, Daddy and Gabby - Snow Ice Cream is on the menu for tonight :)

Now for a list of UPDATES:

  • Lily has gained 3 more pounds since my last update about 2 months ago. She is now up to 31lbs! That's only 3lbs behind her big sister! She is now pretty much completely average in her height and weight for her age - amazing :)
  • We no longer "count" the number of steps she takes (which was 8 in a row at the last update!) because she walks on her own almost everywhere! While still a bit off balance she now walks considerably faster than before and with much more confidence.
  • Lily's favorite foods right now are yogurt, scrambled eggs, mac n cheese and stir fry veggies with noodles or rice.
  • Lily's English words are: "bye bye", "mom", "mama", "mao" (our cat's name), "more", "hi", "what" and "shoes" 
  • Lily's Mandarin words are (I am putting them in English, but she speaks them in mandarin): "shoes", "cat", "dog", "eat", "baba" (means dad), "door", "stop it" (what she yells at Gabby often!) and many other things that we don't completely understand but are parts of Mandarin words according to our Chinese Au Pair. :)
  • Although Lily has long loved hair bows, jewelry, shoes, etc. we had been unable to get her to "dress-up" in a princess dress when Gabby plays dress-up until Christmas day. Aunt Sarah bought her an Elsa gown and she wore it proudly that day while playing :)
  • Lily loves to worship at church and wants to go up front where she can stand and dance while the band plays music. This weekend we gave her a banner/flag to wave with the other kids up front and she loved it. She walked back and forth laughing and waving her flag during the worship songs! A girlfriend even snapped a picture of her doing it which I included below :)
  • Lily understands everything you tell her whether in English or Mandarin. Morgan (our Au Pair) speaks to her in Mandarin and we speak to her in both English and Mandarin and no matter what language you use she understands and demonstrates it by following directions easily. Even Gabby speaks to Lily in both languages as she has begun to pick up Mandarin and Lily understands Gabby easily :)
  • Although Lily couldn't even fill out size 2T clothing when we first picked her up in China she is now fitting quite well in size 3T and has even outgrown most of the size 2T clothing that she was wearing a few months ago! 
  • Lily is still the best behaved toddler we have ever seen! Even though she has found her voice and now has her own opinion about most things if you tell her no or ask her to sit quietly she will readily listen. She does like to please and just has a very sweet and quiet personality. 
  • Lily is quite good at feeding herself now. She can use a spoon to "scoop" up foods like oatmeal, mashed potatoes, yogurt, etc. And is pretty good at getting most foods on a fork. She is a neat eater and will clean her face and hands with a napkin if need be. 
  • Lily rode the animals on the carousel at the zoo for the first time about a month ago! Prior to that we had been on about a dozen times and she would only sit on my lap on the bench while Gabby rode on of the many animals that go up and down and around and around. Lily indicated to me that she wanted to sit on her own animal and when I put her up there she laughed and laughed. We rode several times that day - glorious!! (see pic below)
We are just so blessed by this amazing little girl and enjoy sharing our experiences so much with you all. Thank you so much for your continued support and prayers and words of encouragement! We know how loved Liliana is, not just by us, but by all the amazing people God has surrounded our family with :)

God Bless!
Jessica (and family)

 First time riding the carousel animals! :)
Look at that smile!!!

First time worshiping with a banner up front at church :)

Philippians 2:13 “It is God who is at work in you, both to will and to work for His good pleasure.” (NIV)

Philippians 4:19 “But my God shall supply all your need according to his riches in glory by Christ Jesus.” (KJV)