Another Mom's Facebook Post

Today I found this on Facebook.  Another mom who has a child (older than Emmalin) posted this on her daughter's page.  Although not every single bit of it is exactly like our journey with Emmalin having CDKL5, I felt that this mom did an amazing job at explaining some of thing same worries and fears that our family has (although as I said a lot of ways our journeys are completely different).

"Last night i woke to turn Abby sides and had a hard time going back to sleep. One of the rare nights that exhaustion doesn't take over and I sleep like a dead man. Instead a million thoughts run through my head. Laying next to Abby, snuggling her, the flood gate of tears open. I normally would call Joe and talk but he was asleep although he doesn't care for me to wake him, I didn't. I thought of the long hard battles my Abby has fought. How hard this all has been on us all. Even while your child is in the hospital fighting for their life, the world still turns, life must go on. It's so unfair. You shouldn't have to worry about anything but your child. I have sat in the ICU paying bills watching the monitors. Joe still has to go climb back into his truck and drive away to pay the bills. What a horrible feeling that must be for him. I think about it a lot. I feel selfish for always being here for her while he's working hard and doesn't have time to stop and have the time he would like. I hope one day to do something so great for him as he has for me. I can not imagine leaving Abby's side. I look at my other kids and see sadness in their eyes. Even though we have lots of joy and we are happy, there is a great sadness too. I remember Josh turning his back and hiding his face when Abby had a seizure. Now it's a normal thing. We go back to eating, talking, watching tv... Like it didn't happen. I wake at night and shake her to make sure she's still breathing. I feel judged by others about the medications we have gave Abby. I too started out thinking, I will not give her more than 1 seizure med at a time. I will not do a feeding tube. You WILL in the end do whatever it takes. I've made bad decisions on certain seizure therapies that I wish I hadn't, that could have killed her, there are things I wish I had done sooner that maybe would have stopped her regression. I made a great decision for her to have the spinal fusion. It has been life changing for her. God knew We really needed that. I am so unsure sometimes and indecisive. It's hard to make decisions for another little life when that person can not tell you what's wrong or what they want. It is so emotionally draining and nerve wracking. I have prayed and cried for endless hours and begged God to take the seizures away or at the very least lessen them. Then to have someone tell me they prayed her seizures away while babysitting is like a knife to the heart. There are always those people that don't have kids but are experts... I always wonder if I am doing all that can be done, if I made the right decisions, I don't need anyone's help to make me feel more inadequate. I do my best. I by no means am perfect but I know one thing I do right is give my all for Abby. Joe and I sacrifice everything for her to have the best care. I don't want or need praise for that. I feel that's what any mother should do. I am not special. I get angry. I have my moments I just want a normal life to go on vacation or a night out with out seizures. Joe and I will be celebrating our twentieth anniversary together with Abby and no doubt seizures. We never have us alone time. It is hard but I will never resent that. We will never say man I wish I had not spent so much time with Abby and had more time together. I trust in God no doubt but I worried last night, what will it be like for her if I am not here for her. Will she be cared for properly. Will she hurt and someone not recognize her needs. I know Abby, all her facial expressions. Bad things still happen to good people. Children die every day. Everything in the End will be okay but there may be lots of suffering before the end. Me or my child are no more special to God than another mother and child. I have so many worries but I don't usually share them. I am not a touchy feely kinda person and I don't like to cry in front of people so sometimes I think people see Abby looking good, well cared for, and think it's easy. What they missed was the half hour melt down trying to get her dressed and hair fixed for school...I break down and cry it can be overwhelming. I remember crying to Abby begging her to help me and to fight when she lost everything, she was so weak and couldn't fight. Bathing became a struggle, she could no longer sit up, I just knew she was dying. It was a horrible time. I feel as though I lost her once and I mourn the girl she used to be and one day I may go through it again. I do not want to. Then I think about her being here with out me and I do not want that either. For me as a Christian I pray for the return of Jesus and an easy out but I don't think that is going to happen in my life so always in the back of my mind I know what's in my future and I try to ignore the facts. How else am I to be happy, just live in the moment. Continue to praise God through the good times and the bad. I can praise him in the bad too, because of Jesus I know I will live eternally with my baby ."