First we met Elizabeth who shares the same diagnosis as my bio's. She is more beautiful and amazing than I could of ever imagined. She is perfect. And it turns out she has only been an orphan for just over 1 year. That means we found her not long after she was placed in an orphanage. Her mother did not give her up but she died at the very young age of 28. She is in an orphanage for typical kids and she is SO VERY SMART. We fell in love with her instantly. Everything about her is amazing, She was shy at first but warmed up to me really fast. She is a silly little princess who took only moments to take my heart and change it forever.
AND. GUESS WHAT? She will be legally ours this Friday. YES. YES. YES.
She hasn't had the fortune to have proper care and her legs are fixed in a bent position as if sitting on a chair. She struggles to swallow, and during the evening visits she is much much weaker than the morning. In the evenings it is hard for her to hold her head up so she rests her chin on her chest. She is a little chatter box and loves to sing and goof off. We don't know what types of medications she is on or if she is being sedated but I would say something isn't right. It seems more than SMA causing struggle in the evenings, the difference is just to dramatic BUT. SMA does cause you to be weaker as the day progresses I just wouldn't expect this much. Especially going by my own interactions with the disease and the knowledge that I have.
She is very lucky she is in an orphanage for typical children otherwise she would be bedridden, she can't move on her own at all.. She is almost 7 and has had no schooling. Her mom must have worked a lot with her. Her family is from the village far from the city and they were very poor but she was very loved. We kept the name her mother gave her which I can share with you as soon as she is our daughter legally. We decided to do this rather than giving her a new name because we feel her mom was a blessing and a very important part of her story.
I was told that she is in one of the best orphanages in her country and I have to agree but that didn't stop them from leaving her wet clothing on her all day when she had an accident. It broke my heart to visit her later and realize they left her in those clothes, the smell alone was awful but when they swooped her away from us she was freezing from being so wet. This is why children need parents. They need someone who cares. REALLY CARES.
We leave really early in the morning to travel to her region and visit with her. I can't wait to see her again. It has been two weeks now since we first met her. She had the choice in weather we would be her mama and papa and she is already calling us that. It brightens our hearts very much. I am glad she accepted us as her own but it must of been hard to give up everything she has always known and call someone mama who doesn't even speak her language. And I am very thankful that she gets to be our daughter. Just 4 more days and she will be ours forever. This has been so emotional. I cry when I see her and I cry when I leave her. Leaving her is so very hard. And getting to see her makes me so happy I don't know how to contain the emotions I've bottled up for the past 9 months waiting for this time to finally be here. I;m so happy we are here doing this. It is the most rewarding magical thing I have ever been a part of. I encourage you all to ask yourselves this holiday season. Do you have room at your table for just one more... or maybe four.
I can't wait to tell you about our other 3 special children....
to be continued.....
Please read about dopamine responsive dystonia and watch this video https://youtu.be/8YyGrN_evYI God Bless you All.
ReplyDeleteCan't wait to see updates on your new additions. So happy for you and the children.
ReplyDeleteHi! You are amazing! These children are so blessed to have you as their mom.
ReplyDeleteAbout your daughter. It is normal that she hasn't had any schooling by the age of 7. In Ukraine, Russia (where i'm from) and some other countries, all children start school at the age of 7. It's the norm, we go to the 1st grade. Before that, it is the parents' decision, whether send them to kindergarten or work with them at home. So there is that :)
Again, thank you so much for saving those children!