Almost 6 months :)

It's hard to believe that Liam will only be 6 months on the 14th. It feels like he should be 6 years by now with everything we've been through and are still going through. I woke up this morning wishing we could get some normalcy in our lives again. Even though our lives feel like a stand still, other lives are moving on. The world seems to not even recognize that anything went wrong. I guess it's a good thing. The other day someone commented on how small Liam was for his age. I took a deep breathe and explained to this stranger about his condition. She said he was a miracle, I agree. I rarely let myself admit to strangers that there was something wrong with Liam, that he isn't normal. I'd rather pretend everything was fine. I wasn't sure how I felt about telling his story again. I ofcourse was flooded with all those emotions again and fought hard to keep below the surface and hidden. There was no simpathy from this stranger after I told her Liam's story. She just smiled down at Liam, told him he was a miracle and continued to think he was adsolutely adorable. I was relieved there was no sympathy. I couldn't have handled it if there had been sympathy in her eyes. And I learned that I can survive telling Liam's story, our story, even though its very hard. Hopefully one day I won't feel the need to hide the truth about Liam or pretend that he is normal. Liam will never be normal. He is extroadinary, and special and his story should be told. It should inspire. My little bear cub is growing up and before I know it, it won't be cuddle time and kisses but mud baths and climbing trees.

A Drowning Shadow

I've admitted that I started taking anti-depresants. It wasn't hard to admit that I needed them time around as it was 2 years ago when I first started taking them. What I felt I needed to keep quiet and not tell many people was the fact that I will be seeing a phycologist for therapy. I don't know if I felt ashamed or felt like I didn't have the right to be so bad off to need the help. But I am and I do. I was supposed to start today but the phycologist came down with the flu so we had to postpone until next week. I am nervous about. I don't know what questions she will ask me or what she expects me to say. I think im afraid to bring all the emotions that I pushed down back up to the surface. I don't want to relive the hell I went through with Liam's birth and up at UCSF. I sure why Im afraid when I relive it all everytime I close my eyes. I am hoping and praying that therapy helps me. I want to stop reliving it and I want to move on. I don't want to feel guilty that Liam survived while other didn't. Atleast I would like that guilt not to eat away at my very heart and soul anymore. It's hard to function in my day to day life. I forget things, I go through things in a haze, I dont sleep. The only thing that matters is Liams feedings and med schedule. I don't know what I would have done without my husband. He's been doing laundry and dishes, cleaning the house with me and helping remind me of things. He's also been taking on the majority of Lanie's care so that in between taking care of Liam I can attempt to sleep throughout the day. I try to spend time with my daughter, playing and reading books but my energy level only goes so far. I'm smart enough to realize when I need help and thankful that it was offered to me. I didn't turn it down when it was offered or even ask to take the time to think about it. I took one deep breathe and said 'yes'. Im glad I did because every day Ive been getting progressivley worse. I know that I won't be my best until I get better. Ive been trying hard to work on Feathers to honor Liam and Maddie but know now that it wont become successful until I can fix myself and get my mind back to fully functional. I just pray that it'll be soon. Admitting I'm getting thereapy hasn't changed my feelings. It has changed nothing. I thought maybe I would be able to feel alittle weight lifted off my shoulders but thats not the case. I figure it's probably because I need more help than I thought. Ive been trying to sort through my thoughts and feelings but theres so much that I feel like Im drowning in them. Nothing seems to make since, nothing but a feeding and med schedule. I feel like Im standing on a cliff, teetering on the edge. Or like im just a shadow or ghost of my old self.

'How to'

The life of raising a CDH baby is far from easy. It's challenging and there is no 'how to' book to help us because CDH hasn't had enough research studies. There are so many unknowns and with unknowns brings fears. We do the best we can with the information that is available and make the best decisions we can. While normal parents with normal babies are celebrating babies first steps and looking forward to potty training and school, CDH parents are looking forward to the day their babies get the repair surgery and celebrating when they successfully get excubated. They struggle daily with feedings and jump with joy when their babies actually take a few sips from the bottle or eat a few spoon fulls of solids by mouth. Disscouragement and dissappointment are always nagging at us. While your just wishing your kids could or would pick up their rooms or not drag toys through the house, we're just wishing our babies could play with those toys and would do anything to have toys strung through the house. It's supposed to get better with time, that what they tell us. I read blogs and updates on other CHERUBS and take as much encouragement about the future Liam might be able to have from them. I look at how other CHERUBS have grown and what they are able to do now and I just pray Liam will be able to do them as well. Today I tried to feed Liam solids again. We went with sweet potatoes. Im trying very hard not to be discouraged that he doesn't like food in his mouth or gags and throws up. Its a daily challenge. Ive tried feeding him with the bottle and he refusses. Feedings are not easy on either of us. Liam gets overwhelmed, stiff and cries and I try hard not to be dissapointed. I have to thank God for G-tubes. The future is unknown for us so I try just focus on today.