Standing on Faith: Oh, to have such joy.

Sunday, February 8, 2009

Oh, to have such joy.

I have been so saddened by the fact that my three year old had to learn about the facts of life so young, but it has brought up some very intriuiging conversations. During nighttime prayer time, Allie is always at the top of his what I'm thanful for list. This, of course, gets his mind on Allie and the thoughts and questions usually start to flow like: When is Allie coming back?, I wanted to play with her, I miss her, etc... It is difficult, but I try my best to hold it all together for him and answer his questions. He doesn't understand everything, and sometimes we have to remind him of things, but I am completely amazed at the wonderful comprehensive conversations I have been able to have with my THREE year old about Heaven and God. I love the fact that he is so curious and feels so comfortable expressing his feelings to his dad and me. The other night when we were saying our prayers, Mason started talking about Allie again. He expressed how much he missed her and that he wished she was here, and then he asked, "Why did the Lord take her? I didn't want the Lord to take her." My heart hurt for him. My husband and I both tried to gather ourselves and then explained that the Lord did not take Allie. We talked about how Allie's body didn't work, and we talked about getting to go to Heaven, and then we talked about how wonderful Heaven is. By this time Mason was so excited he was squeeling. With the biggest smile on his face he said, "I'm going to get to go to Heaven one day! I will get to see Allie, and she is going to say, 'There's my brudder!', and she will be so happy! She will get to run and play with me because she will be perfect!" Through our tears we hugged him and sobbed, "That's right, that's right Little Man." Later, when I had time to look back on that wonderful moment with my son, I thought to myself, Oh, if we could all have such joy about Heaven.

3 comments:

Robin, February 8, 2009 at 11:02 PM: Oh, he is such a precious little man! It is absolutely amazing how much he comprehends about Heaven, and how everything will be so perfect! You are so right, if EVERYONE could have such joy about Heaven.

Love you!
jengallahar, February 9, 2009 at 11:01 AM: I have tears right now, he is so precious! Do you remember me telling you on August 19th that my son had accepted Christ while we were in the carpool line? You know we were talking about Allie and what a miracle she was and that we never know how many days we have on earth; that we may leave here at anytime. He felt such an urgency then to make his decision, not knowing if the Lord would call him home that day. I'll always remember that day. And Allie sparked it all!
Catherine Hamilton, February 9, 2009 at 8:47 PM: You have an amazing little boy. I know this has been very hard for him to understand, but what a wonderful understanding he has of heaven! He has that understanding because of his parents and their faith and belief. What a wonderful world this would be if everyone could have the same understanding and joy as little Mason. You must be so proud of him.

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What is Trisomy 18?

I would say that this is probably one of the most difficult disorders to try to explain simply because every case is different, but I would like to try my best to explain T18 in my own terms from my personal experiences and research I have read. For the most part, unless the child has major physical disorders or you know the markers to look for, T18 babies look perfectly healthy. Most people would probably pick up on their small size and possibly their low set ears, but some could easily go undiagnosed if it was not caught before birth.

T18 is a chromosomal disorder, also known as Edward's Syndrome. There are three different forms: Partial, Mosaic, and Full. In the partial and mosaic forms of T18 only a portion of the cells are affected, therefore having a greater chance to thrive. Allie had the most severe and most common form of T18, the full version, which means that every cell in her body was affected. When the baby is forming, somehow the 18th chromosome picks up an extra copy. Instead of only having two copies of the 18th chromosome, there are three copies. It was nothing that the parents did or didn't do to cause it to happen. This extra matter in the cells causes major complications during development. There is no way of knowing exactly which areas were affected the most or to what extent, so there is no way of knowing what complications each individual may have until further testing is done.

Even though each case is unique, there are many similarities that most full T18 babies have. Most have some type of heart condition (Fortunately Allie's heart condition was not serious, and she was able to live without heart surgeory~ others are not as fortunate). Some of the physical features they may have are small weight, low set ears, small mouth, tiny nasal passages, tiny ear canals, clinched fist, index finger overlapping middle finger & pinky overlapping ring finger, deformed chest, prominant nose, short big toe, and a small head due to their brain not developing to its full size; of course, since their brain does not develop to its full size this causes many other issues. Since every cell is affected in full T18 babies, they could possibly have major malformations with their internal organs. I know it is common for them to have kidney problems. There have been some reports of inverted colons, malformed intestines, esophogus problems, underdeveloped lungs, etc. We did not go exploring with Allie to see exactly what other internal complications she could possibly have. We figured if everything seemed to be working fine that it was not necessary to put her through any further testing.

The reason most parents are faced with difficult decisions is because these babies are not just a baby with a heart problem. You cannot just do heart surgeory and fix them. I would say the biggest complication is the brain. Your brain tells you to breathe, swallow, move, etc. Since T18 babies' brains do not fully develop, that means the automatic sensors that control the body did not fully develop either. Only God knows when this sensor will not be mature enough for the baby to keep thriving. Just like in Allie's case, it did not matter how well she was doing, when her brain was no longer able to send out the proper signals to the rest of her body, she was no longer able to thrive.

There is no way of knowing how long each T18 baby will live. The life expectancy varies for each individual case. Some are not even able to make it to birth, and the ones that make it to birth usually don't live to see their 2 month birthday, but there are a few who are able to thrive for years. Most of their lives are counted in days. These children are such a blessing to know and love, and I feel very strong that each one deserves the chance to prove how long they can thrive in this world. I hope that this information gives some help in further understanding Trisomy 18.

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Sunday, February 8, 2009

Oh, to have such joy.

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