Thursday, May 27, 2010

Carlos and Maria - an Update

I wanted to give an update on how things have been going with Maria and with Carlos.  We've had quite a journey with these little ones these past couple of months.  First of all, they are precious!  My heart tonight was just filled with so much love for both of them.  We had such a fun, relaxing, and enjoyable dinner together, and it just felt so right.  This family of four that God put together...wow...it's amazing.  He knew from the beginning of time what our family would be.  And what an awesome responsibility that is for us as parents to reflect upon.  God specifically chose Kevin and I to be the parents of Carlos and of Maria.  Out of all of the people in the entire world, He chose us.  Who we are and who we will become will impact these two little lives like no one else will.  Please God, give us your wisdom and strength.  Guide us as we partner with You to teach and encourage and discipline and love. 

So as you know, Maria was diagnosed with Agenesis of the Corpus Collosum, which means that she is missing the middle section of her brain that connects the two hemispheres together.  This is a pretty rare condition, and the effects of it can be very severe impairment or, as we're learning, no impairment at all.  We said yes to God to welcome this little child into our home not knowing what our journey with her was going to look like, not worrying about the potentially frightening realities of parenting a child with moderate to severe special needs.  No parent knows what their journey with their child will look like, yet we did know some possible scenarios regarding Maria based on what we've read about most kids diagnosed with ACC. 

And I think that's the key word right there: diagnosed.  Most kids who are diagnosed with ACC were diagnosed because there were problems or indicators that something wasn't functioning/happening like it should with typical development, and so they underwent testing and an MRI to determine what was going on.  So the infants and children who were showing signs of difficulty are the ones with ACC who are most often diagnosed.  What we've found out recently from several doctors is that there are thousands of people walking around this earch without their corpus collosum and don't even know it!  There have been many, many cases where a person went in for an MRI for something later in their life and through that process found out that they have ACC.  They have been functioning normally their whole life and no one knew or would have suspected that they were missing such an important part of their brain!  Amazingly, we think that's what's going on with Maria. 

The U.S. Embassy doctor in Colombia whom we saw in order to be allowed to exit Colombia and come back into the States said that he would never have known or suspected that she has ACC if I didn't tell him or if he hadn't read it in her medical file.  He said that she is functioning normally and he has no concerns for her health!  Although this was good news and confirmed what we were seeing in her while with her in Colomiba, we still didn't know if that was completely true or if that would remain true of her.  We took her to the pediatrician's office about a month ago though, and he said the same thing!  He said that he would never have ordered an MRI done because he never would have suspected that there was anything atypical about her.  He did want us to have her MRI scans over-read by a pediatric radiologist at DeVos Children's Hospital though, just to get their perspective and expertise.  They confirmed that she is missing her corpus collosum, but also said that there are cysts in her brain and that there is something not quite right with her optic nerves.  Our pediatrician said that he wasn't concerned, but wanted to refer us to a pediatric neurologist anyway since there are several things going on with her brain and the neurologist would be the best person to check her out to see what if anything is going on. 

So we went and saw the pediatric neurologist two weeks ago.  Once again, he confirmed that Maria is developing well, is alert and bright, and he doesn't forsee any problems with her due to her ACC.  He can't make any promises of course, and we have to wait and see what she'll be like regarding academics once that comes into play for her.  But for right now though, she is doing very well! 

He did say that although she is doing really well right now, there are three areas of potential concern in people with ACC that we all need to be aware of.  One is seisure activity.  People with any brain malformation are at a higher risk than the general population for having seisure disorders, so we just need to know the signs and keep an eye on her.  The second area of potential concern is optic nerve disfunction (Disfunction is my word, not his.  He had a much fancier term that I can't remember!)  He is referring us to a pediatric opthamologist to get her checked out since her optic nerves are a little on the small side.  (Although he did say that it could just be the angle of the MRI scan of that part of her brain that is making them look a little smaller, and that possibly they are not smaller at all.)  The third area of potential concern is regarding her pituitary gland.  Since the pituitary gland is located in the center of the brain, people with ACC often have trouble with their pituitary system.  They either hit puberty really early or really late or not at all.  So, he is referring us to a pediatric endocronologist as well, just to get a baseline on Maria and so that we can establish that relationship now and can keep an eye on things as she develops. 

Although going to all of these specialists sounds like she is unhealthy and has a lot of challenges to overcome, she is actually doing great and seeing all of these specialists is just to be proactive. 

We had her evaluated by early childhood specialists in our district last week and they said that she is functioning at about 19 months old right now pretty much across the board.  We knew she had developmental delays before we got her, and that many children who have lived in an orphanage have delays.  They were not concerned with her development though, and feel like she will catch up to her same age peers over the next couple of months.  Already since she's been with us she went from speaking no words spontaneosly to having a vocabulary of around 25 words and counting.  And she is a fast learner!  If we show her how to do something once, she has it.  It's amazing.  She's like a little sponge!  :) 

Maria is sweet, funny, silly, bright, and curious, and we love her very much!

Carlos has been having the hardest time out of all of us with this transition of becoming a family of four.  He is struggling with some deep, intense emotions, and so we have started seeing an attachment and family therapist.  This was our third week, and already we can tell that this was a very good decision.  Carlos is very open with us about his thoughts and feelings, but he opens up to Mr. Ellis even more so, and it's so helpful to witness.  If we look at what the past few months have been like for Carlos, he is doing remarkably well and has grown so much.  Yes, there are still times of intense emotions from him and times of difficulty and challenges with him, but things are so much better than what they were the first couple of weeks in Colombia.  Praise God for that!  Please pray with us that he continues to open up and share during therapy, and that he will be open to hearing the truth about who he is in Christ, who God made him to be.  (One of the issues he is struggling with is identity, as most adoptees do.)  And please pray that Kevin and I will have open hearts and minds and ears to hear what Carlos is really saying through his words and actions. 

Carlos is doing really well at school, and is continuing to amaze us with his capacity to learn in two languages!  Last week he read part of a book in English, and part of a book in Spanish!  And he is writing complete thoughts in Spanish, two sentences about the same topic.  In Kindergarten!  We are very proud of him. 

Carlos is a thoughtful, inquisitive, curious, sensitive, kind-hearted, funny, quirky, creative boy, and we love him oh so very much!

What a gift God has given us in our children, and what a journey we are on.  We thank Him and praise Him through both the good and challenging times.  We shall see what unfolds for our family as we try to just take life a day at a time.  :)

Saturday, May 15, 2010

It Was a Crappy Day

No, I mean literally.  The stuff was coming up out of our drain in the basement.  Apparently the flushable biodegradable inserts that I've been using to cloth diaper Maria haven't been flushing down the toilet as beautifully as I thought.  So as of this morning, any time water goes down a drain in our house, unpleasant waste comes back up into our basement.  Nice.  Kevin called our neighbor down the street who's a plumber and he said he'd be able to come by later in the afternoon.  Kevin decided to rent a machine that would clean out the pipes from the basement to the street.  The rental of the machine is available for four hours or if he waited until 4:00 p.m., he could have it overnight.  We decided we could wait so that he and our neighbor wouldn't have to rush to fix the problem.  Well...our neighbor did come by and was able to help Kevin get the machine down to the basement.  He showed Kevin what to do, and said he should be fine.  Unfortunately he had a lot of other things going on tonight.  So...Kevin was on his own.  But it turns out that the job wasn't quite as easy as it seemed.  The snake like pipe thingy would go no further than a foot down the hole.  Tried as he did, he just couldn't get it any further.  So now it's after five o'clock on a Friday and we have to call a plumber who will undoubtedly charge us double for having to come out on a weekend night.  Ugh.  So much for saving money trying to do it ourselves. 

The guy is actually finally here right now - at 10:00 p.m. 

It's just been that kind of a week.  We've had SWARMS of crawling and flying ants trying to start new colonies in our roommate's bathroom, a toilet that overflowed with - you guessed it - and flooded the bathroom floor, leaking down into the aforementioned roommate's bedroom, our bathroom has been out of commission for over a week due to our reglazing of the tub and sink (it's been chipping so much that the chips were getting stuck under the kids' nails during their baths) (it was only supposed to take three days), our phone, cable, and internet went out yesterday for the entire day, and we found out that our insurance will not add Maria to our policy even though we were told by our agent before we left for Colombia that she'd be added as soon as we were home.  We now need to have a new policy for the four of us but anything related to a pre-existing condition of Maria's will not be covered until December.  So our visit to the pediatrician's, the two blood draws she had, the visit to the pediatric neurologist, and the upcoming visits to the pediatric opthamologist and endocronologist will have to be paid out of pocket.  Ugh again. 

Now any one of these things on their own is simply an inconvenience.  (Okay, except for maybe that last one.)  But I must say that all of it piling up together like it did this week feels pretty stressful to us. 

And then the really bad news is that Kevin's sister Kristi's cancer is back in full force, and this has been her first week back on chemo.  She's been sick.  And her husband Brian had to go to the hospital yesterday as he woke up covered in hives.  They asked if he's been under any stress lately.  Ummm...just a bit. 

We would love your prayers.  For strength and peace for us and for all of our family.  The good news is that the ant guy was finally able to come today and spray, the tub guy came today as well to finally finish the job, and the AT& T guy came first thing this morning to replace our modem.  So that's all been good.  Tomorrow is a new day.  And we'll be able to use our toilets and sinks.  It's going to be okay. 


"The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged."  Deuteronomy 31:8

"Be strong and take heart, all you who hope in the LORD."  Psalm 31:24

"We wait in hope for the LORD; he is our help and our shield."  Psalm 33:20

"Why are you downcast, O my soul? Why so disturbed within me? Put your hope in God, for I will yet praise him, my Savior and my God."  Psalm 42:5

"But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."  Isaiah 40:31

Thursday, May 13, 2010

Only Love

So the night that I wrote the previous post was the absolute worst night of sleep I can ever remember having.  Maria was up most of the night.  Fussing.  I have no idea why.  She has progressively become a worse sleeper as our time together has grown longer, but Sunday night was the worst.  I spent the entire night feeling angry.  And numb.  It really sounds as though it is not possible to feel both, but somehow I did.  I have come to dread going to bed each night because I don't know how many times she'll wake up and fuss throughout it.  But tonight, when I went upstairs to comfort her in her tears (before even going to bed), I scooped up this beautiful wet mess of a girl and just hugged her tight.  As I lay in bed with her, her fussing quieted down and her breathing slowed down to normal, and I couldn't help but think how amazing it is that God chose ME to be her mother.  This precious little girl never had someone to hold her and rock her throughout the night before if she needed it.  Never had someone lay with her in bed, holding her tight, and kissing her sweaty little curls.  Until now.  And so tonight, the memories of the other night are fading in importance in my mind, and tonight have been replaced with only love.  And gratitude to our loving Father for putting our family together.

Sunday, May 09, 2010

Reflections on Mother's Day

The only thing I wanted today was to not have to cook or clean.  I wanted a day to just be, and not do.  A day that I can take a nap if I want to, and not feel guilty about it.  A day to relax and enjoy.  But as the day has progressed, although my wonderful and caring husband did his very best, the day just didn't unfold as peacefully as each of us hoped.  It was a tough day.  Carlos is really struggling a lot with all of the huge changes in his life right now, and his behavior and attitude are reflecting this.  (We are starting counseling on Wednesday...more on this later.)  Leaving church today I just felt so down.  It feels like there is no place for us there right now.  It's way too soon to put Maria in the nursery, and Carlos doesn't want to go if Maria doesn't have to go.  And since he's been gone from it for over two months, we don't blame him.   So as soon as the songs are over, we have to leave the sactuary.  They are just too noisy, even when they are behaving well.  They are just being two and five, but we don't want to disturb others so we leave.  There is a cry room off of the sanctuary, but it's really meant for moms with babies who need to be fed or rocked to sleep.  They tolerate us in the there when we've tried that in weeks past, but we know it's not meant for us.  And the lobby has speakers, but they are so quiet we can't hear what the pastor is saying.  So where do we go?  Back home.  I know that this is just the phase that we are in right now, but I miss being at church.  So today leaving church I just cried.  It's frustrating and difficult for our family right now.  We're just in a really hard place, with so much going on, so many emotions involved.  And I know that Kevin felt bad that this was Mother's Day and it wasn't giving me the relaxation and enjoyment he wanted for me, and that I wanted for me too.  The more I thought about it though, as the afternoon progressed on, the more my heart began to change.  I don't know why it did, but I'm very thankful for it. 
As I stood there doing dishes and baking a cake with the kids (Kevin was taking care of the curtains that fell off the wall in our bedroom - a very frustrating and draining home repair!), I had this thought: Maybe today isn't about me, as far as having a day to do whatever I would like to do, a day to rest and relax.  Maybe it's a day about completely embracing my motherhood.  Maybe it's a day to strive to be the very best mom I can be.  Yes, I know I should do that every day, but maybe on Mother's Day that striving should be extra sweet and full of meaning.  It's a day where I should be counting my blessings, not looking to be blessed.  God has given me two beautiful, amazing children, and has trusted me with their care.  Mother's Day should be a day that I intentionally look at them through His eyes and see them for who He has made them to be.  And rejoice in that!  And enjoy being a mom - with all the ups and downs that that entails - and do all the mom things that I normally do, but on this day, with a renewed passion for why I do them.  Motherhood is a blessing, it's a gift, and today I am very thankful to be a mom!