Lastnight I was laying in bed thinking about things as Kayden's transplant anniversary is coming up. As I lay there thinking about everything that has happened over the past 4 years I am always so grateful and amazed and always brought to tears over our journey that we have traveled.
I know that Kayden looks and does very normal things. His development is right on track with him being at the lower end of the growth curve and the weight curve. Overall he is doing great. He does have some issues with strength in his hands and eating issues, but we are working on those and I know that they will improve over time.
At one time things weren't so normal. Things weren't always right on track. I had a little boy who was very sick. He would not eat from a bottle and had to have an NG tube in order to make sure he had the nutrients and the food that was needed in order to grow and develop. I have told a few people this and don't know if I have wrote about it so I am going to put it out there now. Up until Kayden received his NG tube I never grasped how sick my little boy was. I knew he had a problem but for some reason I did not fully grasp what his illness was. At that point it was a probem inside him. I couldn't see it so in my mind it wasn't really that serious. Once we got the NG tube everything changed. After 3 months of pretty much not facing the complete seriousness of the situation I had a reality check. My child now showed signs on the outside that he had something seriously wrong with him. It could no longer be a secret or avoided as he had a tube going up his nose and tape on his face keeping the tube in place. Once I realized that and faced that reality everything in my eyes changed. My whole outlook on life changed. I needed to do what I could to keep my child alive until he could do it himself or he received the transplant that would help him. I had to have a positive outlook on everything and make the best out of a really crappy situation. This is what I was handed I had to deal with it. I had two choices either be angry and upset and have everyone else in my life angry and upset or make the best of it. I chose the latter.
Kayden had to take a medication called Calcitriol. This medication was given to him to help his body absorb the Vitamin D. Because his kidneys weren't working right it made other things not work right. One of the things his body was not doing is allowing for it to absorb the Vitamin D and the calcium. This caused his bones to basically suck and not be strong at all. Most babies when you hold them up on they will put weight on their feet and try to stand. Not Kayden. He refused to do this and would not put any weight on his legs whatsoever. We would have to put him in a stander to help him stand up and cause the muscles and bones to get strong. This would really wear him out and literally cause him pain in his bones because his body was not doing things correctly. Later down the road we got everything taken care of with his medications and things started to improve. I never thought that he would walk, but he did. He started walking 2 weeks before his transplant and 2 weeks after he turned 2yo. (Yes I was carrying a 2yo and a new baby around for a long time). So when I see Kayden running down the hall to go to class, jumping off the curb outside or running and playing outside I smile because I can remember all that we went through to get him here. I honestly did not ever think that it would happen. He is climbing and running and jumping and walking and rough housing and I never thought that it would happen. But it has.
Some people probably look at my child and see a normal 4yo but I look at my child and see a miracle. I look at my child and see him doing things that I never thought that sick little baby would ever do. I am so proud of him. I will sit and hold him on my lap and I am so amazed and proud of the progress that he has made. I know that this is going to be a controversial statement, but in my life it is so true and it is from my own experience, but those who don't have to experience this type of trial (whether it is kidney failure or some other issue that may cause delays or other growth and development delays) don't fully understand and appreciate the little things and don't look at certain things in amazement and awe and gratitude. I know that I didn't with Lexi, it was just something that happened and I didn't have to worry because everything happened. The same thing with Koy, the milestones and the development just happened and there were times when I didn't even know that they happened because it was the natural way of things. But when you have a child that strugges for every litte thing, those things are appreciated in different ways. I was much more excited in a different way when Kayden started walking than when Koy and Lexi started walking.
I look at my little 4yo and I am so amazed at the strides that he has made. But we are not out of the woods. We have to worry every time he gets sick and find out why he is sick rather than just let it run its course. We have to get blood draws on a monthy basis to make sure that his kidney is functioning at the same rate as it was last month and that his medication is the right dosage since it can damage the kidney if it is too high. We need to screen for certain cancers caused by his anti-rejection meds, we need to be diligent in putting sunscreen on since he is more susceptible to skin cancer because of his meds. We need to continue to get urine tests to make sure that he does not have any viruses that can kill his kidney. We have to diligent in different ways that others don't need to worry about. There are times when I wish that I didn't have to be so excited about the little developments or the 2lb weight gains and that I could be the same type of parent with him that I am with my other two and not question every little thing that happens and not question my ability to be his mother. I wish that I could take him to pre-school during the winter time and not worry about what illness he is going to come home with and if it will put us in the hospital or not. I can't wait for the day when my son will sit down and eat a meal. I can't wait to see him actually eat more than two bites of something, or to actually eat something and not just lick it, or to get his nutrition from food and not a feeding tube. I wish that the 4T pants that I just bought for him would fit his skinny little body and not have to be rolled in order to stay up, but the 3T pants are too short. I wish that he outweighed his little brother by more that 5 pounds. BUT......That is not my life and right now I LOVE my life.
One thing that I always think of when I think about all that Kayden has gone through is how awesome the human body is and thankful we should be for a body that works and functions correctly. How smart and wonderful is this creation that Heavenly Father made. He is such a smart man and how awesome he is to have created something so perfect yet so fragile and so wonderful.
I look at my little boy in complete amazement......do you?
