Tuesday, May 31, 2011

There is a Princess Turning Five!

Selah is turning five tomorrow! We actually had a little mini-celebration on Friday because her grandma was in town from Kansas. She was adorable all day singing "Happy Birthday" to "deewa Sewah"! She didn't quite have the words, but she nailed the melody line perfectly!  A very precious memory.

We decided not to do anything big at all because a lot of people and excitement still seem to really overwhelm her. Even our very small gathering of my parents and Bryan's mom along with presents, a princess cake (that she picked out :-) ), and ice cream was enough to cause her to become very anxious. She was very happy, but we can always see it when she starts to "deregulate". I learned that big word from our therapist! It is the perfect description for when she goes from a somewhat calm state into this place of super hyperactivity which would then lead to a meltdown. At least we were able to calm her by jumping into her night time routine before she had the meltdown and she even slept pretty well.

I know it has been such a long time since I have posted. My weak excuse is that I am simply wore out. I think part of it is that I am not as young as I used to be, and as cute and sweet and adorable and as absolutely crazy in love we are with her, she is a handful! She shows me so much love and affection one moment and the next she is testing me to the extreme. I so wish I knew what her thoughts were. I wish I could tell her just what she needs to hear to give her peace and chase her fears away...but I can't. I am just not sure why she does many of the things she does, but I do know that whatever the reason, she has a very valid reason for doing them. The longer I live out the reality of adoption, I truly understand so much more. I thought I understood before, but not until now, can I fully comprehend everything your child and your family goes through. Selah is a miracle. Her spirit so bright and her smile and joy so contagious. I can't get through a grocery store without getting stopped several times by people commenting on her smile. She seems to just draw in everyone she meets. To think of the life she had, the traumas she may have experienced, the deep grief, and then to see her smile and the joy she spreads to so many around her is simply a miracle. She shines the light of Jesus brightly from within and I firmly believe He will continue to heal her both physically and emotionally.

We have spent a great deal of time with specialists. We, of course, started with our Pediatrician and from there we were sent to a huge list of specialists. We are waiting on some tests for absolute confirmation, but what has been found is that Selah has Marfan's Syndrome. It is a disease of the connective tissue. Read about it here. It would account for the scoliosis that we noticed when we first picked her up, her super flexibility, her super long legs, and dislocated lenses that were just found last week. We see the cardiologist soon to determine the extent of damage, if any, to her heart. With Marfan's, the scariest part is that it can cause the aorta to enlarge and an anneurism to occur. If there is noted enlargement, there are meds to help keep it from enlarging more and then we would have to make sure she does not participate in competitive sports. If no damage is found, she can participate in whatever she likes and we would just continue to monitor to catch if any enlargement ever begins. 

At this time, like I mentioned, Selah's lenses are dislocated and we will need to monitor her eyes closely to watch for detachment of the lenses or of the retina. Right now she can see through her lenses, but the dislocation has caused astigmatism which is why she is now wearing glasses. She picked out the cutest little pink ones (of course!) and really seems to like wearing them for the most part. Praise God!

Other than that, we have begun speech, occupational, and physical therapy. The strides she is making is absolutely amazing! She is a completely different little girl than the one we brought home 8 weeks ago. Again, watching the miracle of our little Selah, is such a gift...the gift of watching God work. There are still times when the load seems too heavy...when she pushes me away or throws things at me for the one thousandth time in a day...when the boys have behavior that is reflective of an exhausted Mom with her bucket of patience on empty...when Bryan's work keeps him gone for too many hours with no relief...or when I find out about one more specialist I must try to schedule into our very full day. Those are the days I cry....and then feel guilty for crying because my blessings are so many. And then, those are the days when I am reminded that in Jesus there is no condemnation and that He really begins His work when I finally let go and simply stop trying to make it all happen myself. Those are the days that He reminds me of His love and forgiveness and He shows me the beauty of the moment. He shows me that He is our Redeemer and Healer of all and He is there with us in each moment.

Blessings and Smiles,

Wednesday, May 4, 2011

One Month!

As I sit and reflect today on the last month, so many things come to mind! I have stared into the eyes of our little princess so many times today and watched her smile and heard her giggle over and over. I am simply in awe of her resiliency and in awe of our awesome God Who has been working so faithfully in her little heart and mind...and in ours. The first couple of weeks pushed us to limits that were stretched beyond anything I could have ever thought possible for any of us. Then progress began. Selah began to lay her burdens down. She began to let us love her in the moments of pain. It was still so hard, harder than I ever dreamed, but God kept giving me glimpes of His work and He worked in so many ways to reassure all of us. He worked through those around us loving us and sometimes just happening to say the very word of encouragement we needed to hear at that very moment.

Last week Selah came down with a cold which she seemed to have the worst. We all had the sniffles and didn't feel spectacular, but I think because her little immunity system was down with all the stress, she caught it and had the worst symptoms. Her nose is still running and she sounds congested. But, when she first caught the cold, she was pretty frustrated with it and it just made her plain old grumpy! Sweet Zach told me that morning that he just knew that this was actually a blessing from God because it would give Selah the chance to see how much better it is to be cared for and loved by a Mommy when you are sick. He said she was just going to love me more after this was done...and followed it with a "You'll see, Mom!". My sweet and insightful little guy...he is such a wise little soul who so often knows just the right words to make me feel better!

Well, anyway, the week wasn't the best...it was very exhausting, but in the midst we certainly did see growth in so many areas! She laid back in my arms for the first time that week. It was only a few moments and she had to jump back up, but she did it and since then has been surrending to my love and care even more. Then came Saturday night. To make a long story short, because of her extreme anxiety and stress and not sleeping for almost 48 hours, our doctor gave Selah something to help her sleep. It worked so well and allowed her to get some sleep so that she could deal with each new day and its new set of stimuli. Saturday night, we needed to start the new bottle which had been refilled. Within 20 minutes her personality changed and she raged and raged and cried and cried. She had an adverse reaction because the prescription had been slightly changed. It was awful. We found out later that a very small percentage of the young and the elderly can have this reaction. We called the doctor and after a few hours figured out what had happened and got the right medication which eventually helped and by Monday morning she woke up with her sweet smile! It was all so scary, though, because we were trying to figure out what happened, what triggered these behaviors, and then finally realized about the meds. Bryan and I and the boys were all stretched to the very limits watching our sweet girl regress so much and not know what to do with all this rage.

We had scheduled and rescheduled and rescheduled family photos with Vicki Lynn who is the most amazing photographer and person! She is beautiful inside and out and talented beyond belief! I was bound and determined to make this shoot...even with Selah still pretty unhappy! Our shoot was at 5:00 pm so it had been several hours for the medicine to get out of her system and for the new one to take effect. I continued to have faith that we would make it and at about 4:00 pm we started getting a couple of smiles out of her that would be followed a few minutes later by her favorite phrase which is "No More Mommy!!!!" said with all the feisty emotion one could create! It kinda makes me smile now, even though I of course always tell her "we don't talk to Mommy that way"! Anyway....we headed out to the shoot and it was a challenge, but we had moments of where our sweet girl was shining happy and moments where she was ticked at the world! But, she did love Miss Vicki and had plenty of hugs for her! At the close of the shoot, I was a bit nervous and wondered how the pictures would come out...and last night Vicki sent me the photos and created a slideshow. I sat there and cried because even with all that was going on she was able to capture our love for Selah and her love for us. It was such a gift to me because it showed me that even in the worst of days, we are all a family and our love still shines through! I won't say anymore...just watch!

O taste and see that the Lord [our God] is good! Blessed (happy, fortunate, to be envied) is the man who trusts and takes refuge in Him.  Psalm 34:8