I have some venting, preaching and updating to do. I didn't sleep very well last week. I broke down again thinking about all that Gavin has gone through, especially back in April when mistakes were made in the hospital, resulting in Gavin's present state of being. I kept replaying in my mind what happened over and over again like a bad movie. I kept seeing how he suffered, which I won't go into, because it's not a pleasant thought. I also kept thinking about the conversations I had with residents and doctors. I just can't stop feeling guilty about not preventing the dehydration from happening! It makes me feel ill thinking that this could have been prevented! I know that Gavin would still be having issues, but not to this extreme! He wouldn't have had the stroke, which started the seizures, which makes him need more medication.....and although he has Down syndrome, he would be developing more and some day most likely, walking and talking and living a fairly full life! Now we just don't know if he'll ever progress. It really makes me wonder about some doctors! You don't have to have too much intelligence to keep a baby hydrated! How hard can it be?! How hard is it to listen to a mother's concerns and prevent something like this from happening?! It makes me want to SCREAM!!! Well, there's the venting. Please pray that I can find and keep the peace I need to not dwell on this any longer.
Now for the preaching. I find it so hard to accept the way special needs people and their families are looked at and treated sometimes. I realize that it can be uncomfortable at times because you may not know what to say or how to react, but it really isn't that hard. Let me just put things into prespective a little bit. Anyone of you who have a child could be in this situation right now. You could have had a child with a disability. How would you want your child to be treated? Maybe even more scary, what if YOU were born with a special need? How would YOU want to be treated?! I'll let you know how I'd want to be treated. I'd want the same respect and kindness that I want to be treated with now! I'd want someone to not stare at me. I'd want someone to say Hi and smile at me and treat me the same as they treat everyone else who appears normal. And if that means that you normally treat people poorly, then I guess I'd want the same. (But shame on you if that is how you normally treat people!) If any of you know my mom, you can look at how she would act around someone with a special need. She always offers assistance to those in need and always offers a smile and a kind word. My mom has a special place in her heart to always look for the good in people and let them know when she sees it in them and to thank them for it. Our children have seen it in action with her and it has left quite an impression on their minds. I'm thankful for this and for having learned it from her too! Thanks mom! Anyway, I've seen the other side now, having a child with special needs, and it's not a good side to be on when it comes to how people can treat you or look at you. (Even those in your own circle of friends and family.) So, I thought I'd share my feelings in hopes that those who need the most are treated with the most respect and kindness.
Now for the updating. Gavin continues to stay healthy and out of the hospital! Praise to God for this! He had an appointment with his neurologist last week. The plan is to get Gavin off of Phenobarb which he's taking for seizures. It will be a slow process, months probably. Pray that Gavin handles the change. The doctor said that even though Gavin continues to have seizures, Phenobarb is not a medication that should be used long term. Phenobarb can also interfer with development as it makes the muscles more weak and it causes sleepiness. I was told that just one dose of the amount that Gavin is on would make you or I sleep for about 18 hours! Hopefully Gavin will still sleep through the night after he's off of it! :) Also, he said that by taking him off of the med, it may help the other 2 meds he's on for seizures to actually work better. I guess Phenobarb interfers with the liver's ability to metabolize other medications, so if Gavin can get off the med successfully, the other seizure meds will be able to work to their full potential. So, he may continue to have the same amount of seizures or maybe even less? Hopefully not more though! Gavin has appointments with his pulmonologist and cardiologist in the next week. Hopefully we will receive good news at these appointments! More prayers please!
During this last week I've had my times of doubt. I just finished reading the book of Job in the Bible and found peace in what I read. It talks about how Job doubted and struggled, like we all do. But even with all that Job endured and finally, after all his complaining and doubting, he repented and saw the goodness in God's purpose! He said to God; "I know that You can do everything, and that no purpose of Yours can be withheld from You...Therefore I have uttered what I did not understand, Things too wonderful for me, which I did not know." Job 42:2-3 Then God restored Job and blessed him more than he had been before his suffering. I found peace in reading this because I know God has a purpose in all our suffering and that we don't have knowledge of our future as God does. We just need to trust and believe! As always, I am granted a ladder to climb out of my valley of doubt and to proceed with living the life God has blessed me with! I will now quote something Nolan said to me last week after learning about weights in school. He said that after they weighed many items on the scale, none of them weighed more than the Bible did. His conclusion was this: "Nothing is greater than the words of the Bible!" Another great lesson from one with a child-like faith!
Sorry for the long posting! Thanks for your continued prayers! Have a wonderful week!
Love, Alicia and Family