Saturday, August 24, 2013

Three Months Home

It was three months ago today that we boarded a plane from China back to the US with one of the most beautiful and amazing little two year olds we have ever known.  This girl has brought countless blessings to our lives and that day, along with so many others, will forever be an unforgettable, joy filled memory.

She has come so far in such a short amount of time.  She has learned to walk (including walking on uneven surfaces), climb, talk, play with toys, eat by herself with a spoon or fork, drink from a cup, blow bubbles or blow candles out, hug and kiss.  She has changed languages, attempted to try new foods, sleeps through the night and in her own bed (still in our room, but we'll take what we can get), plays pretend, and she finally will even pat the dog's head.  She is also filling her role as a little sister soaking in every ounce of attention her siblings lavish on her.

All these things are wonderful and they give us hope for future progress.  We love this girl more than we could have ever dreamed possible.  We say it all the time, but can't help it because it's true, we could not imagine our life without her, not after three months time, not ever.

Here are some pictures of Mercy that have been taken over the past three months. Tell us what you think as you look at them.  Better yet, leave a comment and tell her.

Saturday, August 17, 2013

More Fragile the Fine China

When I decided to blog about this adoption journey I vowed to be honest, and so far I have.  I was honest about joys, anxiety, fear, anger, even my black tongue.  But during the paperchase, the wait, and even during our time in China most of what I have blogged about has only been about me, or all of the positives since Mercy has joined our family.  In the next few posts I want to share a little about the "hard" in adoption, at least from my experience so far.  

I have been so hesitant to write about the "hard" because blogging is permanent and I know some day down the road my daughter could and probably will have access to reading this.  I have wanted to be sensitive and protective of that day coming and what she will read.  So Mercy, if you ever read this I want you to know that while everything I write is true, raw, honest emotion, none of what I write reflects "you" being hard, it only reflects the adoption process being hard.  It reflects the my sinful human heart being hard. This is not about you, it's about mommy.  You are more than worth the hard and I love you more than you will ever know or understand.  It also does not reflect in any way us having any regret in adopting you.  There is NO regret because I can't imagine my life, hard or easy, without you in it as my daughter.

Adoption is hard.  I had a friend say to me this past week that she agreed 100% that adoption is hard.  She even ventured to say that it is the reason so many people don't adopt, because they know how hard it is so they steer away from it.  While I know adoption isn't for everyone (although it should be) if you have had even the slightest whisper from God drawing you to adopt don't let the "hard" scare you away.  Because I can assure you that while it is hard, it is so unbelievably worth it.  The reward is greater than the challenges.

This has been a tough three months for us on so many levels.  For starters we are a pretty active family and lead a pretty busy life, so to live three months with a clear calendar and very little running around has been tough.  One might think that it would be great to cut back activities and running, but it does get old after some time.  Turing down trips, turing down summer picnics, pool parties, invitations here and there and many other summer fun activities has not been easy.  Keeping to ourselves and limiting visitors when you are someone who lives for hospitality has not been easy either.  Keeping family and friends at a distance when you would normally see them all the time.  Giving up your mom coming every Wednesday night so you can get a date with your husband...that was really hard.  Scott and I haven't been on a date in three months.  Which only adds to difficulties.  When do we find time to communicate, connect, be alone?  Adoption is hard on a marriage.  It's hard on a family. 

Bonding and attachment is hard.  Mercy has bonded well to the idea of us being her caretakers.  She responds very well to both Scott and I and is willing to have either one of us meet her daily needs.  But that is where it stops.  She sees us as caretakers, no more no less.  While she is willing to be held by us, fed by us, put to sleep by us, she is still lacking an emotional attachment.  We have been told that we need to remember we are starting from scratch and emotionally we need to see her as a newborn.  But it's difficult to see a 2 year old, who acts like a two year old on a daily basis, as a newborn.  A newborn doesn't need discipline, a newborn doesn't tell you no or throw them self down in a temper tantrum or chuck toys at your head, spit on you (OK, maybe spit up, but that's different), hit you or demand to do things their way.  A newborn sleeps more than twice a day and doesn't require a constant reassurance that you are there as they wrestle to find the peace to fall asleep.  A newborn doesn't leave a room looking like a tornado swept through it.  So while logically I get the idea of seeing Mercy being emotionally a newborn, the reality is she is not a newborn, but a very active, very strong-willed, very needy two year old.  

I have had a few days in the past couple weeks when I have not felt an emotional connection with Mercy either.  Where I have felt more like her caretaker than her mommy.  It stunned me and brought about a condemnation like I have never experienced before.  This past Saturday I sat on my bed crying for hours because the guilt was all consuming that I have had days when I just didn't want to love and care for her with the deep love in my heart that I have had on other days.  I contacted my caseworker because it seemed serious enough to be addressed.  I felt like there was something wrong with me.  It was scary and I did have thoughts of wondering if we had made a mistake. (gasp)  Not because there is something wrong with her, but because there is something wrong with me.  Maybe I'm not capable of loving her they way she needs to be.  Maybe there is a better mom out there for her that can love her everyday, not just some days.  When I spoke on the phone with our agency I was frightened that as I was honest with them they may even think that they made a mistake.  Maybe they would want to seek another family for her right away.  The response I got in return was shocking to me:  "Jane this is very normal."  She reminded me that Mercy has only been with us for three months and emotional attachment for both the child and the parent can take years.  She reminded me that everything with adoption seems backwards.  She even went on to say that so many blog about their adoptions but they don't share the hard stuff for many reasons.  Fear of judgement being at the top (so DON'T judge me), or fear of your child reading it someday (like me).  That is what motivated me to write.  I don't want people to think everything is OK when it's not.  I don't want people to see me smiling as they pass by and think life is bliss now that she is home, because that's not true.

So what is true?  The truth is we have good days and bad days.  I know there are some that are reading this and saying well that's normal with biological children.  Yes, BUT, it really is different.  The hard days with biological children are different because at the end of the day you don't worry about having just destroyed any ounce of bonding and attachment progress you have just made.  I don't want Mercy to see me as her caretaker for the rest of her life, I want her to see me as her mommy.  I want to connect with her emotionally.  I want her to come running to me when she is hurt or scared.  Right now when she gets hurt, I run to her, and when I get there many times she pushes me away.  When she is scared, she screams and I mean screams and seeing my face or touching her does not bring comfort to that fear.  When my biological kids are hurt they find great comfort in a hug or kiss from mom or dad.  When they wake up in the middle of the night scared we walk into their bedroom and our very presence brings peace to their fear.  When thunder roars during a storm and my bio kids are scared they climb into our bed and they can fall asleep while it's still thundering.  Mercy on the other hand thinks she needs to comfort herself, at two years old.  It's heartbreaking.  I mean it is HEARTBREAKING!!!  

Everyday I am faced with the reality that this little girl is hurt and more fragile than fine China. (no pun intended)  It's hard to care for her and not live in a constant fear of breaking her more.  It's like one wrong move and she'll shatter to pieces.  But even though she is fragile, she is also tough.  She has walls built around her little heart at only two years old.  It makes me cry puddles for her.  This feels like to heavy a burden to bear and I feel nothing short of inadequate to raise this precious, sweet little girl.  Yet here I am with her sleeping beside me, faced with the challenge every single day.  A commitment I love and wouldn't change, but fear at the same time.

Here is the thing about this particular hard, it's a good hard.  Good for me, good for Scott, good for my kids, good for Mercy.  I know that while I don't see that on a daily basis I have to believe that there is good coming out of these difficult days.  I have to believe that God knew what He was doing when He chose me to be her mother.  He knows I'm not perfect, He knows my weaknesses, He knows my selfish heart, and He brought her into my life anyway.  I trust He knows what He is doing when I don't have a clue what I'm doing.  And I know that even if I do shatter her to pieces, as fragile as she is, He will heal every last broken piece of her and He will make her whole if she lets Him. 

Tuesday, August 13, 2013

3 Months Since Gotcha

Three Months ago today she was placed in our arms and our hearts burst with love and joy.



Monday, August 12, 2013

A Pretend Picnic

This is a simple post, but one very dear to my heart.  Since adopting Mercy she has been learning what it means to play.  She has learned to stack blocks, she has learned to push buttons to make toys work, she has learned to push objects into containers or open containers to take objects out.  She has learned to turn the pages of a book and is beginning to point to pictures.  But yesterday was the very first time she finally used her imagination to pretend play.  For me this was huge.  I'm not sure why it was so important to me, but I got choked up when it finally happened.  We had a picnic together and for the very first time she picked up the cup and "pretended" to drink from it, and then she picked up one of the food items and "pretended" to eat it.  This is something we have sat down a played many many times and I always pretend and she always looks at me like I've lost my marbles.  But yesterday she engaged, she joined in, she pretended too and we had a "pretend" picnic.  It was so much fun and the smile on her little face underneath that empty cup, for me, was total joy.

I just wanted to share, maybe more for myself then for any followers.

Sunday, August 4, 2013

A Five Minute Genetics Lesson

Jane wanted me to write this post so I could explain the details of our genetics appointment at CHOP yesterday.  So before I start let me say I don't claim to be a doctor, let alone a geneticist.  I don't know even a tiny fraction of what they know, and if we're being honest - they only know a tiny fraction about the amazing structures our Lord has created in the human bodies that carry us around in this world.  So here's as simple a description as I can come up with for a very complex subject:

Our physical bodies are made up of cells that do all the different things that keep our bodily systems running.  And at the heart of each cell are 23 pairs of chromosomes.  These chromosomes contain the genetic blueprint for our entire body in the form of DNA.  No two people have exactly the same blueprint, (except identical twins - but that's another story...)  We're each made unique with all the special characteristics that our creator intended us to have.  This blueprint also serves as an instruction manual that tells the cells how to do all the jobs they need to do.  Our DNA is divided up into pieces called genes.  If the DNA is the whole instruction book, then a gene is like a page of that book that has the instructions for one specific job.

Sometimes the information stored in a gene gets changed from its normal form - this is called a mutation.  When this happens, it's like that particular page of instructions was copied wrong and the cells don't know how to do that particular job correctly.  With around 25,000 genes in our DNA, people typically have many mutations in their genetic code - most of which have no significant effect on our lives.  Some genes though, are more important than others.  If these genes are coded wrong, it can result in diseases, disorders, or even death.  This is part of the reason we have two sets of chromosomes (one from our father and the other from our mother.)  If one set has a mutation in an important gene, chances are that the other set will not have a mutation on that same gene.  As long as one set of instructions is good, it lowers the risk of having problems with the way your body functions, or at least makes the problems less severe.

So what does all this have to do with Mercy, and why did we have her DNA tested?  It's very obvious from her appearance that she has albinism, but the fact is there are several different genetic mutations that can cause this condition, and some bring other medical issues with them.  Two of these which gave us the most concern are Hermansky Pudlak Syndrome, and Chediak Higashi Syndrome.  Hermansky Pudlak brings with it bleeding problems and lung disease, and Chediak Higashi brings severe infections and nerve damage.  Though these syndromes cannot be cured, knowing about them would help us be more prepared for the future - we would know what to look out for and get treatment quickly if any symptoms appeared.

Our prayers were of course that Mercy would not have any of these syndromes, and we are happy to say after the test results we received yesterday: she does not!  A blood sample from Mercy was sent to a specialized lab, where all of the genes associated with albinism and these related syndromes were analyzed from her DNA.  The only significant mutation they found was in the gene called TYR.  This gene carries the instructions how to make a chemical called tyrosinase, which is the first step in producing the pigment melanin, which gives our eyes, hair, and skin their color.  Both of Mercy's chromosomes have the same TYR mutation which short-circuits her body's ability to make any pigment whatsoever.

The great news is that the genes associated with both Hermansky Pudlak and Chediak Higashi syndromes did not show any of the mutations associated with those diseases!  So Mercy's diagnosis is what is called Albinism type OCA1A - which means her body cannot produce any pigment, but otherwise there are no other health concerns that we should expect from her albinism!

Combined with the news that her low iron levels have been rising nicely over the last few weeks, it was a great day for our family!  As one by one our medical concerns about Mercy are diffused, we are just left in awe of our great God who has walked side by side with us all along this journey so far, reminding us not to fear.  We agreed to place all our concerns at His feet, and He continues to amaze us with His faithfulness to Mercy.  Her amazing growth and development over the last couple of months is a living testimony of His power and grace, and we can't wait to see what He has planned next!

In the lobby waiting to be seen.

Ended the day at the Cheesecake Factory for dessert.