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,
My sweet friend!! I'm praying for strength and endurance as you raise little Selah;)! She is beautiful!! Praying for wisdom from Drs, and that there is NO heart problem!! You have been such a blessing to me, so if you need to vent, I'm an email away!:) Love and {{{HUGS}}}
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ReplyDeleteSweet Selah has such a contagious smile. She's so blessed to be part of your family! Even she is probably amazed at how much better she can see with glasses, how much fun it is to express her emotions - instead of holding everything in, and how wonderful it is to be loved unconditionally!
I had a friend in high school with that, it actually ran in her family. She was always slander and had long arms/legs and fingers. She is still doing fine and so is her father who has it. You just have to be careful :) They can live a long normal life!
ReplyDeleteAs for the attachment things hang in there mama! It could be a life long thing or she could heal quickly. The hard work you put in these first few years will make all the difference. We have one that attached the day we met him and the other... well 5 years later I'm not sure how much progress we have made. Many days it seems like he just came home. Every child is different but God knows what we need and He sends us just that. Love & Prayers
Lori, you are an amazing mom with the true spirit of the Lord working in you. I love reading your posts and hearing how Selah is doing. You might not know it, but you are giving others the courage to walk down the same path that you are now treading. It encourages me to see someone taking on all of the issues that can come with adoption and giving God the glory as you go through this journey one day at a time. Rob and I know that we have an uphill climb with our son, several surgeries after we come home, lots of therapy, including speech, possible feeding therapy, occupational and physical therapy, but it is all worth it in the end. Thank you so more for sharing this part of your life with us!
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