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April 21, 2003
4.21.04 UPDATE
I want to extend a heart felt thank you to everyone for Sean's birthday wishes and prayers at this extremely difficult time in Sean's life.
I am not sure what life holds for us with Sean. Yesterday Sean had a barium swallow done to see how his esophagus was working. This study is done in X-ray and Sean had to drink some white stuff so they could see it on the screen. We learned somethings, but still not enough to really know where to go from here. We have several options, but before we make a decision, we will see the Cardiologist-on Tuesday and see what the blood work we are going to be doing tomorrow shows us.
Why blood work?! Well, it seems his spleen is enlarged and since this works with the liver, they are going to look for infection and to see how the liver is functioning. Next week, sometime, we are having an ultrasound of Sean's liver and spleen to see if there is anything going on. The CT scan picked it up. Now I understand more of why they want the angiogram done now. To check all the blood flow to all the organs.
I am at a loss for words. My mind is racing a million miles an hour wanting and desiring answers. One question that I keep asking is "WHY HAS IT TAKEN SO LONG TO FIND THIS ALL OUT?!?!?!?" I keep asking it the more we keep finding out. I am angry, but also know Drs are not perfect, they may think they are, but they are not. I know things can go undetected until something triggers it to show up.
It is an overwhelming task to raise 4 children, but raising just one with special needs is daunting. I have thought over the past 5yrs about Sean and all he has gone through and what we, as a family, have gone through. It has been quite a bit. I never had time to mourn or hate anyone. However, this time around, I am dying inside. I feel betrayed and so alone. I want to have someone hold me while I cry my heart out. I want for someone else to shoulder this responsibility. It instead of gettin easier, it is getting harder. Harder to accept that there are other things wrong with my son.
This is the son I waited and prayed 10yrs for. I suffered grieve waiting for him to come. My pregnancy nearly killed us both. I have fought so hard for him, I am not ready to say goodbye. I feel there will be a time soon I will. I just want to hold him when he leaves here. I don't want to wake up and found he has left. I want it to be a peaceful experience for all of us. I don't want it to be in surgery or after. Yet-I don't want him to suffer at all.
Yesterday, I saw moms bringing their children for Chemo and radiation treatments. I saw a mom and child I have seen before on my visits to CHLA and her little girl is getting worse and expected not to live much longer. My heart ached for her and her daughter. I said a little prayer for them in my heart.
I have discovered that being a parent to a special needs child, place you in a place that is lonely. It doesn't matter who are your friends or who is praying, it is lonely. There isn't anyone there to hold you and let you cry. There isn't someone to help out at 3am when life seems to fall apart. Everyone means well, but just simply do not understand how it feels to spend life in a hospital seeing a million drs and being told something is wrong with your child. You can't cry or anything because you have to be strong for everyone. If mom falls apart, who is going to take care of everything?
We sacrifice so much for our children when they are healthy, but those of us with special needs children give up just about everything to keep things at a semi-normal state. My DH and I rarely go on dates. We can't get anyone to watch Sean. We can't do play dates because we are at some Drs appt or doing some tests. Sleep-what is that?! I can function on 3-4 hrs of sleep pretty good. I might be the nicest person, but I can get things done. vacations are spent during hospital stays instead at some beach or resort somewhere. Our other children learn to spend days or go to activities without us. They learn the medical jargon fast and how the equipment works. They learn how to do CPR instead of playing baseball or scoccer. They learn their sibling is always sick or can't do or eat that. Life is just totally different for all us parents with special needs children who are chronically ill.
Since Sean isn't gaining weight, we are going to start doing day feedings so he can hopefully gain some more. I am not sure how I am going to accomplish this, but I will do what I need to do help him. I think I will need to look into a portable feeding pump since I am in the car quite a bit.
We changed his acid blocker from Prilosec to Prevacid and seems to be better. Just a pain to deal with. I get to play pharmacist and "cut" the dose from an adult dose to a child's dose, then mix it with water and then give to him. He hates the time releas capsules in it, but he is getting use to it.
I am off my soapbox. Thank you for listening. I am off to get ready for my marathon day at the hospital tomorrow.
Love your children and spend time making memories that will last forever!
Shelly
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