Hi all. This is another journal entry post. Feel free to skip.
Sometimes it is just too hard. It can be so scary. I don't know how to do this. Why on Earth does Heavenly Father think I can handle this?
I just got Cole on the school bus, and as soon as I closed the front door I started sobbing. I feel so overwhelmed some times with Cole's issues. I have no idea how to be the best parent for him. If it is not one of his creams or ointments, it is one of his medications. If not one of those, then one of the breathing treatments. Six breathing treatments, Five ointment and cream applications, Eleven medications and ten bolus tube feedings each day. Sometimes it is easy, and it just works. Other days it seems time slips away and before I realize it, two hours have passed and I totally missed a medication, or an ointment, or even a tube feeding. And although I know that one missed thing won't be a big problem... I wonder how many small things missed will become a huge problem. I spent three hours last Friday at first the Target Pharmacy, and then the Wallgreens Pharmacy, bawling! I just kept telling the pharmacist, "I'm sorry... It is just me. I will be fine." But all week I had tried to get two Very Important medications refilled, and after a week, I was still not having any luck! It was because of mix ups with the insurance billing processes. The whole Joseph Rodriguez verses Cole Johnson... born in LA, has to see only LA doctors, can't transfer to OC... blah, blah, blah.... But the fact that my baby was miserable and sick, and no one seemed to care... it is just a horrible feeling!
I almost hate to write this, because my biggest fear is that my mom, or a sister or a friend might think this means I am not ready for another baby. That it is a good thing we didn't get the baby last month. But then I feel like it is my fault and I am not a good enough mother to the ones I have right now, and that maybe Heavenly Father doesn't think I am doing a good enough job. I just feel so overwhelmed this morning. It was a really hard night. And I don't do nearly as well without enough sleep.
I love my two amazing sons so much. I love being their mom, and never once have I wished that my life was anything different than what it is exactly right now. But I want another baby. I feel that having another child in our family is the right plan.
Sometime in the middle of the night Cole's button (the g-tube button in his tummy) got pulled out. We have no idea how, why or when. This is really serious. It is something that when it happens, we have to get it back in immediately. The first time it happened the emergency Room made us wait for two hours and they ended up having to bring us back the next day to surgically reinsert it. So now we know to demand that they see us immediately. But we also have an amazing, biggest blessing ever doctor named Robin Robinson that took the time to teach Bill and I how to re-insert it ourselves. When you get a g-tube, they tell you to rush tot he ER if it ever gets pulled ot. But now that we have learned how to do it ourselves, we have always been able to do it. It is serious that it is done immediately. The hole in the stomach immediately begins to close up and try to "heal"itself. It is really painful for Cole when we have to put it back in. Well, this morning Cole started crying and Bill woke up and went to check on him. He came back to me quickly and said, "Charise, his button is out." Those few words terrify us both. It is such a scary feeling to have an empty hole in your child... and know the problems that might go along with it. Hospitals and surgeries are way too common for this little boy. We do not want any extras!
Bill tried for a little while to get the button back in, but we had no idea how long it had been. Brighton and I said a prayer and daddy kept trying. We knew it was time to take him to the hospital, so well before anyone should ever be awake... I was on the phone to our dear doctor's home. Yes, I called her home and woke her up. (She has previously given me her numbers in case of emergency. Honestly... I couldn't have been called to be Cole's mom without her as a part of the package. She is like the Special Bonus Heavenly Father gave me to help take care of Cole.) After a few minutes of "coaching" us over the phone, we knew we were going to have to get to the hospital. (Thank you Robin! Sorry to wake you up so crazy early!)
I want to say right now that Heavenly Father does know when we can't do any more. He will not give us more than we can handle... because with the amount of fluid all over Cole's bed, we knew that the button had been out for hours. There is no way we should have been able to get it back in. But right as we decided that it was time to go to the hospital, Bill got the button to go back in. This does not just happen. It isn't something that should have happened. But our little family said a prayer together, and that prayer was answered very simply this morning. We are so blessed.
I am realizing right now that I think there was a Primary party yesterday afternoon that we totally missed. So if my darling Primary presidency ever happens to read this, please do not think that we just thought it was not worth the effort. I just totally FLAKED! I was out in front of my house all afternoon teaching Cole to ride a bike. (He still does not seem to get the peddling with his feet idea.) So I really, really was trying to be a good mom! I was not just sitting in front of the tv eating bon bons! But I just forgot about it. Yes, it is in my planner. Yes, I looked at my planner that morning. It just totally left my mind!
Seriously... how do you all do it?
Carrie Collins... I have never seen you have a bad day.
Jenny Hess makes it look like the easiest thing in the world! I'll bet her kids were all there at the Primary party on time and she probably even volunteered to help!
And I am sure Katie Anderson's 3 under 3 (not to mention Abby's, Karen's and Shaylyn's!) were all there with matching outfits and big bows in their hair!
And Jenn Carroll... with 6 under 9 years old.... offering to take Brighton if Cole needs some quiet time. HOW DO YOU ALL DO IT???
I am so thankful for friends like you all! You are all great examples to me. The best part of our friendships is that I never feel "not good enough". All of their successes make me feel like I am successful by association!
While I am at it... I need to journal my thoughts on my sweet boy, Brighton. After meeting with his teacher this week, we have learned that he is definitely not ready to transition into "normal" kindergarten this next year. This came as a major blow to us this week. All along, I just assumed that after a year of "special ed" kindergarten, he would be "over it" and ready to make the transition to regular life.
This is not the case at all. He will be doing the "special ed" first grade next year. Then it is my personal hope that he will be able to repeat regular first grade the following year. I have been told that if you repeat a grade, it is better to repeat 1st and 3rd grades. They are the tougher years. Kindergarten and 2nd grade are much easier. We know we want Brighton to be one of the older ones in his class, not one of the youngest. We also have appointments with a team of doctors and therapists next month to help us try to figure what to do to help Brighton. Sometimes it just seems like he can't control all of his emotions. He does not handle personal failure at all well, and he can not get the concept of sharing. He is going to be 6 in June... these are things he needs to get down. The teachers and doctors tell us this is all part of his special needs package. But autism is an illness that can be helped with the proper treatments and training. So we will do all we can to prepare Brighton for a successful teenage and adult life.
I want to end this post with my testimony of the love and strength that comes from knowing that I am a daughter of my Heavenly Father, who loves me, and I love him. I know that our family was formed before we came to Earth, and that our Family will be together throughout all eternity. Yes, I feel very overwhelmed, and often not nearly good enough. But I know that if I do my best, and then turn it over to the Lord, that he will magnify my attempts and make it work. That I can be a "good enough" mother to these two boys if I continue to try to be obedient to the commandments and live the way I have been taught by my own parents.
