Scars

Tonight I was reminded that CDH effects everyone. It felt like I had been hit by a Mac truck going top speed. A baby born with CDH isn’t the only one effected, the parents who watch their babies in NICU fight and struggle as well as the siblings who can’t comprehend why their family has been suddenly uprooted and torn apart. Lanie woke up from a nightmare tonight. She was crying and screaming and I ran back there to check on her. She wasn’t even truly awake nor was she coherent. I snuggled her close and kept telling her that I was there and there was nothing to be afraid of. When I asked her what happened she kept saying that she wanted to go to ‘mommy’s house’ and that something hurt and something about Liam. The words were so erratic that I couldn’t get an exact fix on what was going on. I felt horrible. I wanted to try and wake her up but it’s never good to wake up a ‘sleep walker’. I had to wait until she woke on her own. I felt useless. All I could do was sit there holding and rocking her while whispering to her that I was there while she cried and mumbled and held onto me like lock jaw. When she woke up she was calm and collective. She didn’t even know she had that episode that broke my heart. Before the nightmare made of our lives those few months Lanie had only had a few nightmares but never anything near the magnitude that this one entailed. Before she had nightmares caused by some cartoon she saw or something some kid told her about aliens and monsters. Now she seems to be having night terrors and never remembers having them or the fits that come after. They all have something to do with Liam. Something hurting Liam, getting Liam out of something all random things. They often include the time we spend living apart, Justin here at home while I lived at UCSF. It was devastating to her, more than we imagined. We knew it would effect Lanie is some way but we never thought that it would be this bad. We just figured she’d need extra attention from us, especially from me. We even spoiled her whenever we could. Taking her for ice cream, buying an little gift here or there if we could swing it, focused Christmas on her. We tried to make her feel special and give her extras since she went through so much after Liam was born. We sit and color with her, create food with play dough, have tea parties, read books, play games, anything we could do we’ve done. We hope it would help her through everything. Now I know that having the family torn apart as well as seeing her brother in NICU hooked up to all the machines is something that has changed her forever. She will never be the same little girl. We tried to make the best decisions. We were torn apart for 3 weeks only seeing each other on weekends before we got the Ronald McDonald house. When she was there we took her in to see her baby brother thinking it would be good for her to see why mommy wasn’t at home and for us to spend time as a family, the whole of us. We explained everything to her and she even thought it was normal for babies to be there after they were born. We knew being apart wasn’t good for her, it had already devastated her. So we choose the alternate. I’m trying really hard not to blame myself for this as well as Liam’s CDH even though logically I know it’s not my fault. We’ve done everything we thought was right. I don’t think there was anything we could have done that would have changed the outcome. CDH has a long lasting effect on everyone. I hope that I can obtain the coping mechanisms to deal with my issues as well as be able to help Lanie with hers. I want her to be able to overcome this and to be a well adjusted person who will be able to cope with anything life throws at her. While all Liam’s scars are physical, our are physiological. I had thought Liam’s was worse off than any of us, that my mental anguish was nothing compared to what he was going through and that never would be comparable. I’m starting to think that we’ll struggle with our issues long after Liam has healed from his.