The joy of life…

June 13, 2007 | Updates

Well, we’re all feeling better - FINALLY! I took Samuel to the doctor about a week ago and we got him on some antibiotics. I don’t know that he needed them for sure, but I think the doctor wanted to be safe instead of sorry and I agreed. Samuel seemed to feeling better a few days ago, but was still just so groggy.  I waited several days and then decided it had to be the increase in the Neurontin.  So, yesterday afternoon, I reduced his dose down to the amount he was receiving before he got sick and within a few hours, he was himself again.  So, we won’t be able to go up on the Neurontin anymore unless we want him to sit around with his eyes half closed and half asleep for the rest of his life.  Sometimes the seizures aren’t as bad as the medication side effects.  Bummer, though, this means that the search for something to control his seizures continues.

Our appointments with our “temporary” speech therapist the last few weeks have been exciting.  If you recall, our speech therapist quit working for the therapy center we attend, so they have been looking for a new one for a couple of months now.  In the meantime, they got a lady from the USU speech lab to come down and fill in.  She is awesome!  We have learned more from her in the last 2 weeks than we have learned from all our speech therapists in the last 2 years.  I firmly believe that if we had seen her 2 years ago, Samuel would be eating by mouth by now.  So, we are pretty excited at some of the things we are seeing. 

First, she explained that kids like Samuel refuse food because they are instinctively trying to protect their airway.  They can’t coordinate breathing and sucking and swallowing at the same time.  So, when we put things in their mouths, we are compromising their airway.  So, we have to start by teaching them to relax and breath while they are being fed. 

We started by giving Samuel more control over what is happening with his mouth.  We let him know what we are doing before we do it and we let him touch whatever we are putting in his mouth with his hand before it goes in his mouth.  We also back off if he is upset and give him a second to calm down before trying again.  Just these two things have made a HUGE difference.  It seems that since he has some control over what we are doing, he is more willing to trust us to try things in his mouth.  Makes sense. 

So, he is being much more tolerant of us touching his mouth and putting small tastes in there.  It still takes a ton of work and a lot of watching his facial expressions to get the tiniest amount of food in him, but it is much better than before.  And, yesterday at speech therapy, he actually sucked on the end of a pretzel stick.  It was the first time I have ever seen him close his lips around anything and suck, so I was pretty excited about it. 

Oh, and we finally got to give Nathan a little birthday party.  He was very interested in all the toys and smeared blue icing all over himself from the cake.  He had a good time.  It’s crazy to think that he is one already.  It seems like just yesterday that I found out I was pregnant.  Time certainly does fly. 

In closing, I just want to thank you all for your prayers and support.  It is coming up on 2 years since the accident and that is a hard thing to stomach.  A lot of the original feelings about the accident have subsided and floods of emotion don’t come as often as they did, but they are still there.  I still don’t watch the old home videos or look at the old pictures because it is just too difficult.  I have come to love the new Samuel just as I did the old one, but I still miss the old Samuel tremendously.   

I reread a book the other day, “One Tattered Angel” by Blaine Yorgenson.  I would recommend that book to anyone.  It is truly wonderful.  But I have to tell you I sobbed and sobbed through it because it hit so close to home.  I had read it a year or so ago, but it was even more applicable to me now.  There are so many times that people compliment me or tell me what a neat thing it is that I take care of Samuel.  I have not known how to explain to them that it is a selfish endeavor on my part.  I get such joy from Samuel and I do not know how to explain it.  In Blaine’s book, he asks his wife how she can deal with the daily monotonous care of their disabled daughter.  Her reply hit deep in the heart of my soul.  She said, 

“I think the most powerful force acting on me is Charity’s (their daughter’s) love.  I’ve never felt or experienced so much love in all my life as I feel when I am with her.  Though sometimes I feel totally weighed down with the burden of it, I never go into her room but what I am almost magically rejuvenated by the magnitude of her love.” 

That is how I feel about Samuel.  From the day he was born, his smile could lift me out of the deepest despair.  And it still can.  There is not a day that goes by that he does not remind me of the joy in life and the great opportunity I have to care for him and to be a part of his life.  He is a miracle and one of the best things in my life.  And any burden of caring for him is worth the joy his spirit brings to our home.