We had our first appointment at our fabulous Children's Hospital about 2 weeks ago. It was a VERY long afternoon, but very worth it! To save some time, here is a "cut & paste" of an email I sent to a friend...
"We finally arrived back home around 6:30 p.m. (left at 12:45). I was ready for bed! It was a long, exhausting afternoon but very good overall. We met first with the doctor who will be the “case manager” who got very excited (as only doctors can do!) after seeing Hope’s extra toe and came back about 15 minutes later with a HUGE medical book and a bigger smile to tell us that Hope had a very rare form of her issues. There are “only 13” in the medical textbooks. As I said, something only a doctor could be excited about. (We know Mimi’s chromosomal deletion has only 3 cases in the textbooks – but we know she isn’t in the textbooks, so we doubt the numbers a bit.) I wrote down the medical term, but there is very, very little said about it other than the extra toe. So not sure how helpful it is. ;-)
The cranio-facial surgeon was very, very friendly. One of our big concerns was that Serenity (and Hope to a lesser degree) had missed so many “windows” of time in which she was supposed to have surgeries done. But he indicated that the “plan” was slowly being changed to wait until the kids were slightly older (in the 3-4 year old range) to restructure the skull. He said all of his previous patients with Aperts who had surgery at a year old, had to have it redone at least once. But those he waited until they were slightly older did not have to have a repeat. That was such a huge relief. As we suspected, her cleft palate was not completely closed. They will also detach at least her pinkies and other pointer on her left hand. It sounds like they do not necessarily detach the two middle fingers as they are usually more misshapen and not as necessary. Then they will move onto the mid-face surgery. I think the skull will be in between the palate and the fingers, but they are still deciding the best plan.
With Hope, it sounds like he will actually wait until she is 7 years old! What a relief! I think that year and a half will be so good for us all. He also said that she is a perfect candidate because she does have 2 fully formed nostrils and has the excess skin between the skull split on her forehead that will provide the “material” to make her nose. I can’t tell you what a relief this was. Ahhh, deep breath. He also indicated that neither of their conditions necessarily guaranteed cognitive handicaps – although the damage done, especially to Hope, from the institutionalization will have a massive impact on their long term progress. No surprises there.
They will also both have their hearing tested and they will probably do a sleep study on Serenity. They did agree with me that if she is having that much trouble breathing at night, she is probably burning all her calories up that way. They did bring in a nutritionist for me to talk with. After hearing what we were already doing, she was full of praise at all we were doing. It was a good “pep” talk for me – but at the same time, I always have to wonder what type of people they deal with day-in and day-out that our family seems so amazing? She gave me a few more ideas at getting calories into Serenity (basically butters, oils, and a drink that is 45 cal per ounce). I was really worried about Hope but she was amazed by what we had done/were doing. She feels like it is just fine, other than adding a vitamin with iron. Umm, okay. I guess I will trust her on that for now.
Overall, everyone we saw was full of praise and amazement. I am very uncomfortable with that, but also do appreciate the confirmation that we are doing it “right”. Next will be the appointments for the CT scans for each girl and then we will meet again with the main surgeon and other surgeons they may bring in. At least I will probably have a few weeks to build up the strength to do it again. They felt that Serenity’s surgeries were very necessary, but not “critical” in their timing in the next few months. They were more than happy to work around the delivery of the new baby, etc."
We are still waiting on dates for the CT scans, but I am assuming we will hear sometime this week.
So those are the "doctor" details - how about the "every day life" details?
Serenity is still just a ball of energy. She is so busy, so happy, so excited to be with people, we are laughing all the time. What a gift we have been given! We have started putting little tiny pigtails in her hair - they are so funny. But she just adores them!
She loves to carry around a little mirror and look at her "sprouts" and gently touch them. She cries when we take them out to redo her hair. She enjoys each of her brothers and sisters in unique ways. One she wants to snuggle with, one she wants to lead around, one she wants to play Legos with (yes, Legos!)...and the list goes on. We know she is getting tired at night when she finally finds me and wants to sit on my lap.
She is extremely smart in so many ways - but so delayed in funny ways. But I am realizing so many of the delays are simply because she has never been in a "normal" home/family environment. She does not know what it supposed to happen, how you are supposed to act, what to expect, etc. because as wonderful as her institution was, it was still an institution. The people there are doing wonderful things, but it still doesn't change the fact it is not a family.
In the quiet moments at night though, as I rejoice over her precious little person, my heart just hurts to think that such a beautiful child - inside and out - was destined by her country (and I am learning, by some in our country by their attitudes) for an adult mental institution (code words for "hell on earth"). It would be so tempting to think that she was in a "good" place. Maybe she didn't need to be rescued....but I realize so deeply that that would be such a distorted and wrong perspective. This beautiful person would be locked away for life because she was not like other people. What a treasure we have been given.
My sweet Hope. I am just not sure how to adequately describe her struggles or the depth of the damage done to her. I know that some reading my blog already don't understand why we would choose a child so significantly "damaged" and I don't want to give them anymore fuel for their mocking - but I also think it is very important for people who really do care to know the struggles in her little life.
There are times that her little soul, her little personality, is so buried under learned "nothingness" from how she was neglected, ignored, abused for her entire life that I have to remind myself of the little glimpses we have seen. The loves she gives to her dolly, the sweet smiles she gives at rare moments, the true laughter that pours out before she can catch it and turn it back to "nothingness" again....When she gets worried, scared, overwhelmed she either screams for all she is worth or just becomes "blank" - blank eyes, blank face, little movement. It is actually very deeply disturbing that a child can do this - that a child has learned to do this to save themselves from the adults around them.
When my soul was most broken over her, I read this post by another adoptive mom. It gives glimpses of what these children have gone through. Her adoptive children can talk. They can tell her of the things done to them. Even though I knew this in general, I really think God let me see specifics, because it helped me to gain a greater measure of compassion and patience for my precious girl. Even though some of the things she does seem to make no sense to me, there are very real reasons she does what she does.
For example, when she first came home we knew she was hungry. Her tummy was growling, it was breakfast time, time to eat! Right? So I would mix up her Gerber food with cereal (the very few flavors she likes) and try to feed her. The moment I picked up the spoon, she would start screaming and swat it away. I would just keep working with her until several bites finally went in her mouth. Then she would relax and eat the rest. The same thing would happen with her drink. As baffling as this was to me, there was probably a very real reason to her behavior - the food she was fed at the orphanage may have been nasty, hot, cold, putrid. It may have been forced down her too fast. It may have choked her as it went down. We assume, as loving, caring people, that someone would never do this to a child - but the truth is shattering. These children are abused continually, except in rare cases like Serenity.
Our biggest struggle right now, as we are just working on the very BASICS of life with Hope, is her sleep. Or more accurately, her lack of sleep. She is exhausted all the time. She has only slept through the night twice at the hotel in her birth country and once in the 4+ weeks she has been home. The rest of the nights she screams and cries. For the first 3 weeks, it could be for the majority of the night. We tried everything we could think of - lights on/lights off, music on/music off, talking to her/not talking to her, feeding her right before bedtime/feeding her earlier...the list goes on and on. A little over a week ago, I moved her out into the family room so we could lay her in her crib at night with family life still going on around her. I am also sleeping in the big recliner next to her with a small lamp on so she can see I am there. When she does start to scream, I pull her in my lap and rock her until she goes to sleep. Sometimes I have also fallen into an exhausted sleep at this point and we just sleep in the chair for a few hours. Sometimes I can lay her back in the crib. It is very slowly getting better...think "minutes" more of sleep, not hours at this point...but still improvement. I am used to not getting long periods of sleep as Mimi has been up and down all her life (but is thankfully doing MUCH better these last couple of months). But with the pregnancy, this is harder on me to do. Right now I just can't think too far ahead - like when I am needing to feed a newborn at night - I am just thankful for some sleep.
But even in that, she is scared. I know she thinks when I lean over the crib that I am going to hurt her. She screams and moves as far away as she can. She screams as I pick her up and pull her on my lap. It is only after I start rocking and singing softly that she begins to relax and stop screaming. I cannot tell you what that does to my heart. NO child should ever think they are going to be hurt for crying - NO child should EVER have this fear. EVER. So as she drifts to sleep eventually (sometimes 20 minutes later, sometimes 2 hours later) the tears fall silently down my cheeks for her. Oh, my Savior, how the world needs You.
My "moment" is gone tonight as I have to get my treasures ready for bed. More will have to wait for the next moment in time....
Until He comes - to Him be all glory, honor, and praise.
I know that there are many reading this blog right now in order to mock our family and choices. I am praying that you will not be able to ignore the hand of God in our lives. I am praying that even as you read to mock, that your soul is touched with the Truth. I would also have to ask, you have spent a great deal of time in mocking us, but how much time have you spent in offering help and solutions to others in need? It is very easy to mock - especially little children who cannot defend themselves - but mockery takes no wisdom. Yes, you may be clever, but you are not wise. There is a massive difference. You can easily change my words and question our decisions,make things into something they are not without ever giving a moment of your life, time, heart, or finances sacrificially for someone else. You friends may think you are very clever indeed. But someday you will stand before your Creator. Someday you will be required to account for your actions. Someday their Defender will demand your debt be paid - just as we all must do. Only those whose trust in in Christ will have their debt paid.
Honestly, you will not ever understand our decisions. As a very wise person once said, "We rescue not because we are the rescuers. We rescue because we have been rescued." We have been saved by the Lord Jesus Christ - we have become new creations. Not just "better" people - new people. We are no longer dead in sin - we are alive in Christ. The dead can never grasp the world of the living. But we all will be called into account.