The story this week on KSL about my husbands sisters being kicked out of the resturaunt and some of the comments that we given have left me with some feelings that I didn't know I was harboring. So as in the words of Stephanie Nelson, "This is my blog and I can say what I want!" So here goes!
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| Life is so rough! |
I think there is a huge lack of understanding for disabled people and their caretakers. We are so judgemental of people! And we say stupid things like..."if that were my kid" or "why aren't they doing anything?" Well, as the parent of a child with special needs, I can guarantee you that I am aware of my sons behaviors! I am fully aware that he does some annoying things for no reason at all! I am aware of the disapproving glances that I get because I can't control my child and better yet I am aware of what you are thinking when I don't disipline him the way you think he needs to be disiplined. There are days that Tag could be in time out all day, or I could be spanking him every half hour, but the behavior still persists. It wears me out some days. I hate the look he gives me when he knows he's in trouble. It is so sad...but I also hate the look on my little girl's faces when their big brother is hitting them relentlessly. There just seems to be no ryhme or reason to his hitting. He can be playing really good one minute and it's almost as if he realizes that he is playing good so he feels the urge to hit something or scream just to break the silence. Our house can be crazy sometimes, but I love my Taggert Johnny boy!!!!
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| Playing in the water with Brinley. |
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| This is rare, but I know they love each other(: |
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| He really looks up to Nathan. |
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| He loves Mater and Lightning |
When he was born, there were some problems. Dr. Nygaard, who was on-call, told us his heart was enlarged and that we would need to see a specialist. I was so scared but then two days later, his regular pediatrician sent us home. He had been on oxygen and he was not able to nurse but they sent us home. At home I was still nervous for him but tried to act normal. Within weeks, he started to have these really weird episodes where his heart would just race. I told the Dr. He put Tag on a steroid. They kept happening until one day when he was having one, we raced to the Dr. office. He listened to him and sent us straight to the ER. I was scared but I thought that finally we could get him some help. Dr Nygaard was on-call again, and I consider this no coincedence. He ran every test he could think of, even a spinal tap, but it was the x-ray that showed that his heart was still enlarged. Within an hour we were on a medical plane to Phoenix. Once in Phoenix, they were doing tests too, trying to figure out what was going on. It took them a whole week! The Dr's came in and told us that Tag has several things wrong with his heart, most very minor, but because there were so many they wanted to do a genetic test. We knew it was a possibility that we could have a child like Trent's sisters because Trent is a carrier, but honestly I thought we were there to fix his heart and we could get on with our lives, normally. So when the geneticist told me that Tag did indeed have partial trisomy 18, I was shocked! I cried! Trent and I both did. I don't know if every parent of a special needs child has a defining moment but I surely did. When the results of the genetic test came back, the cardiologists came in and asked us what we wanted to do. I was flabbergasted! I was thinking, "What do you mean, what do WE want to do?" They didn't come in and say this is what we think needs to happen now. Because he wasn't "normal" they asked us what we wanted to do. I guess there are parents who would have said, "let's just make him comfortable because he's not going to grow up and be anything. He's going to be alot of work and quite honestly a burden." But I literally stood up from my sitting position and told those doctors in a very firm voice that we were going to do the surgery that my son was not completely incompacitated. That he would be able to run and play and we wanted to do all we could for him!.
I don't know how many parents of a "normal" child with a heart condition that would have to almost demand that the doctors do their job. There would be no question. This is the problem and this is what we need to do to fix it. So why is it that there was a question with my child? Why is it that because my son was going to be handidcapped that he was considered not worth saving? I didn't know it in that hospital that day that that was the beginning of a war for Taggert's life!
It is heartbreaking for a mother to watch how people, even those who you would hope would treat him the best, brush him aside, ignore him,or look at him with that look that says why are you even here. I've seen it and there is a part of me that thinks he sees it too. It's very difficult, but I have also seen the very opposite and it makes my heart soar. He has this wonderful teacher at school who doesn't consider him less. She actually believes that her life is better because she has had the opportunity to be his teacher, and she thinks that the other kids in his class are also blessed because of him. His current pediatrician is that way, too, although his first one was not. Tag's first pediatrician actually told me that my son was never going to get better.
So, I guess, I not only have to be patient with Tag, but I have to be patient with everyone who comes in contact with him who doesn't understand that he is a special child of GOD. I can't make people see Tag for who he really is anymore than I can make Tag behave perfectly at a resturaunt. So, what's a mother to do? Just the best I can every day, asking for guidance from my Heavenly Father and then asking for forgiveness when I get it wrong. But this just doesn't pertain to my handicapped child. All my children are different and they all need something different from me. I know that with the help of my Heavenly Father that I can be the mother they all need me to be. Motherhood is hard, the hardest thing I've ever done, but when you look at things with eternity as your goal, you realize that this life on earth is really so very short. It's too short to hold a grudge against the resturaunt manager or the other patrons at the resturaunt. Not everyone believes as I do but I know that I can be more like the Savior by treating other people as he would: forgiving them because "they know not what they do".
There is something special about my Tag. He has a lot of love to give. I love it when we are alone and he will just start talking to me in full sentences! And I love, love, love to hear him say, "I love ya, mom" He didn't say I love you for the longest time and I was worried that he never would, but it makes me so happy to hear it, finally!
