Thursday, January 21, 2010


Yesterday we visited the geneticist again to find out about the genetics testing that was done on Daniel back in September when he was getting his feeding tube put in. I had been praying all week that the Lord would give us some answers that could possibly help us with his growth as well as just give us some peace about what the long term may look like for him. I wish that I could say that the doctor had something concrete to tell us but alas he did not. All of the testing that he did both the micro-array genetics study and the metabolic panel that he did came back completely normal. I was initially crestfallen when he said this because I had truly thought that perhaps this would be the day that we finally got an answer. I sat through the rest of the exam which was a complete repeat of the last time wanting to cry and also mortified because Daniel was completely out of control because of nervousness the whole time. The doctor told us that he would like to do an MRI of Daniel's brain next to see what that looks like. When I asked what he was perhaps looking for he said that it would tell more about if we were dealing with Fetal Alcohol issues.

That is when it began to hit me. All this time I have been putting the obvious aside. My son has Fetal Alcohol Effect and that could be the ultimate cause of all these problems. Four years ago when we were first home with the boys I did some research about FAS and FAE and at the time I saw some similarities but I still didn't know for sure if what we were seeing was from the orphanage or just environment or what. Then the psychologist that originally diagnosed Daniel with MR and ADHD also reported that FAE was a good possibility. Again I cast it aside not really dealing with all the ramifications that it could involve. Then we started having so many problems with growth and we began to pursue all these other things not really ever dealing with the obvious. So I began to think while we were driving home and while Robert and I were debriefing about why I have avoided this for so long. I think as I told him it is because deep down I didn't want to believe that this was something that could have been prevented. If there was something genetically wrong that his birthmother wasn't in control of I guess I thought I would be able to handle it better. I guess I also wanted to believe that there might be something that could be done to fix or at least help his condition.

Last night and this morning I spent some time reading from a website and magazine from a wonderful organization called CHASK. It stands for Christian Homes and Special Kids. I have been getting their newsletters for quite some time now but this particular newsletter has truly ministered to my heart. Reading the stories about other families that are parenting children with various special needs has given me hope that I am not alone and also that some of my failings are quite normal. You see I have been feeling very guilty lately about my attitude toward Daniel and not feeling equipped to parent and teach him the way I should be. I get very frustrated with him and I think that I was hoping that perhaps these results might help me to cope better. What God showed me last night and this morning is that all the results in the world are not going to change the reality that God made him to be this way for a purpose and I need to start realizing that there may never be a magic fix - this is who he is. This morning I read some beautiful words that a mother of two FAE children from Russia wrote. Almost everything that she described is Daniel to a tee. I also see some of what she said in Ana and a bit in Peter. While it was hard to read the reality it helped to see that I'm not living something that no one has ever seen before.

Robert and I did some talking yesterday and this morning about this and we agreed that we do want to have the MRI done just to see what it says but then we are done. We are not going to continue to search for an answer that may never come. I think we are finally at a point where we just need to dwell in our reality and try to cope the best we can with the behaviors that Daniel displays. And in turn I need to realize that I am going to fail sometimes just as Daniel is going to fail sometimes. I thank the Lord for these revelations and I have asked Him to help me to love this child as He loves him. And also to help me take each day and really each moment one at a time. I thank Him for the grace that He has shown me and I realize how blessed I am that He calls me His daughter even on my worst day.


the dwellers said...

Oh friend...
I just got home and was going to call you to hear yesterday's results. Alas, the phone line is occupied, so here I am reading instead. I'll call as soon as I can :)

One thought that I would like to type to you is this...
This is not the way that God created Daniel to be. His diagnosis confirms that God's design was much stronger and more complete. Obviously, sinful or ignorant choices- human choices- have weakened that physical design.

But look at what God did for his child. He removed Daniel from a dangerous, worldly situation and delivered him into your home. While you may not be perfect, you are an answer to a prayer that Daniel couldn't even pray for himself.

I know that you will equip Daniel with as much love and strength and knowledge as he can hold. Then one day soon, everything will be redeemed and healed. That is the silver lining, the ultimate hope, that they never tell us... even in the best medical offices.

Love to you!

Krystal said...

Oh Tiffany! Sending big hugs! I'm so glad you found some answers even though they are tough ones. I am confident that God has great blessings in store for you and strength to get through these days.