Thursday, July 21, 2011

Hard News

Today was my first appointment with our new daughter's future pediatrician. He's a highly recommended Dr. who has an extensive background in international adoption and special needs kids. We were very excited to find him, since many doctors really don't know what to look for or pay extra attention to when dealing with international adoption.

Most parents take their child's medical history in for review before accepting the referral because they want to find out if the child is truly healthy. In our case, we know our daughter has health issues and we don't care. She needs a home, we know that we are it. We will deal with whatever may come. Now, this isn't to say we were flippant about our decision. We had her medical file reviewed by our normal pediatrician and her videos viewed by a social worker to get an idea of what we were in for before submitting the paperwork for her. At this juncture, with us hopefully very close to getting her home, I figured it was time to bring in the big guns. Get better prepared so we can give her the best possible care.

The visit was great - he's an awesome dr. and so great with kids (Pumpkin was with me.) He was very thorough and obviously very skilled in his field. He was also very compassionate and listened well and truly understood where we were coming from. After reviewing her information and some videos I brought on the laptop, though, he had some hard news for me. Nothing major, but he thinks her current developmental delays point to some sort of mental handicap. He can't be sure at this time, but he believes she may be permanently delayed.

Did we already suspect this? Yeah. We did. We know it's not normal for a child her age to be at her current level. I don't want to get into specifics, but she's pretty far behind. We are not experts, but we know enough to know it's not good. Still, we hold out hope that she will "catch up" and that someday she'll be hardly different from other kids. That she'll live independently. Her dr. isn't so sure she ever will be capable of that, but he admits it's too early to tell.

This one was tough for me to hear. Hubby took it better, but for some reason it hit me hard for a little bit. It was sort of like walking up to The Resource Exchange to find out how to enroll in their assistance programs. If you haven't heard of it, every state is required to have a Resource Exchange for the mentally handicapped, to assist them and their families in coordinating their care and education and also to help them get enrolled in public assistance programs and respite care. Going to TRE was tough, because I felt like I was admitting something. Like I was saying that there really is something wrong, something that might not be fixable. Today I had to face that again.

We still have a lot of hope. The dr. does, too. He says that he anticipates that she will thrive in our home. He thinks she'll blossom and change a lot, but he thinks maybe she won't get as far as other kids would. We figure it's pretty soon to tell, and she's not yet in that environment. A re-evaluation after she has been in our home for a while will be in order. It's too soon to declare her limited. Perhaps she'll surprise us.

Today I was advised to enjoy every accomplishment, no matter how small. I think that was going to be our approach no matter what, really, but it's weird getting the same advice that he gives to parents of kids with Down's.

At any rate, this changes nothing in our commitment to her. If anything, it makes me that much more fierce about protecting and caring for her. If this holds true, then she needs us that much more. At any rate, if we don't give her a home she will spend her life in a nursing home. At 7 they would move her into an adult nursing home and she would stay there for life. I can't bear the thought of it. I won't let that happen to her.

It hurts me to think that this situation she is in, something totally beyond her control, may have permanently hurt her. I feel sad for her, a little sense of loss I suppose. Could the time she spent in the orphanage have stolen some of her innate potential? How horrible and sad to think that decisions made by her birth mother could have cost her so much. But then again, her birth mother could have chosen another way and cost her everything, snuffing out her life before she had a chance to live at all. It may not be as bad as it seems, and it certainly could have been worse.

Tonight, I am sad for my little girl. I'm sad that it took us so long to come together. I wish I had known about her when she was born. I wish I had been at the hospital to hold her right away. I wish I had been taking care of her from day one, giving her medical attention and love. I suddenly feel a bit jealous of parents who adopt infants at birth.

Sigh. I can't dwell on this, it's not helpful. I'll give myself tonight to mourn, and then it's time to start looking at the light. There's plenty of hope here to be had, I just have to be sure to keep my eyes on it.

1 comment:

  1. We were hit with similar news about a month after we came home with our son. We learned that he suffers from an extremely rare syndrome that was previously undiagnosed and that he will have life-long developmental effects from it which could be severe. I share so many of your feelings!