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Tuesday, November 1, 2011

What is normal?

Ive been having a VERY hard day. I got up at 730 with Brielle and tried to put her Spio vest on. This vest is new. She just got it yesterday. Brielle has issues with her muscles so she sits very slouched, sits on her tailbone. I know Ive talked about it before, but anyway, she was fitted for a spio vest and got it yesterday. The guy who brought it out and put it on, made it look so damn easy! This morning, I tried to put it on Brielle. Did NOT go as easy as the day before! Im not sure if it was how Josh took it off, or if I just started off totally wrong. Not sure, but it sent me into a complete breakdown! Brielle did NOT want this thing on! And I cant say I blame her! So she keps wiggling and screaming and trying to get away from me. I still am not sure if its on her right. Actually, Im certain its not. Which sits not well with me, as its probably not helping then! So I let out a scream in frustration, which I dont do, and Brielle STOPPED. She looked at me, because moms never done that before. Then the tears came. And they didnt stop for hours later. She crawled over to me and said some jibberish, but sounded sincere. She put her hand on my shoulder and laid her head down, like she knew mom was frustrated, but wanted to tell me it was ok. I felt bad for Brielle. I felt bad that she is a preemie with issues. I felt that I failed her and Ayden. I couldnt keep them in long enough. Why didnt I just go to the doctor when I sensed something wrong??? Could that have changed things? I felt bad that Brielle has now be in this "contraption" for 6-12 months maybe L.O.N.G.E.R!! I felt like a failure because I couldnt get this damn body suit on her "correctly." Its not helping her if its not on right! I felt bad for loosing my cool in front of her. I felt bad for not being able to control my tears and let cool go. I try so hard to stay positive to keep her positive. To keep smiling so shes happy, but I guess I could no longer control it. I crumbled. In front of my daughter. The worst feeling ever! She felt it. She sensed it. She knew something wasnt right with mommy. I held her sooooo tight and just sobbed. I told her I love her and Im so glad shes here. But sometimes mommy just wishes life was simpler. Why did I have to lose Ayden? Why did I have to quit my job to care for a preemie? Because she wouldnt be where she is today, if I didnt! Why do I have fight SSI to get her benefits she deserves as a 24 weeker? Why do I have to fight insurance companies for synagis shots that will save her life? Why do I have to see 5 therapists, and 3 specialists?? Why cant we just see the "normal" pediatrician every 3 months like the "normal" child????????????????? WHY. DID. GOD. CHOOSE. US??? I want to know! Because I do not feel strong enough some days. I try my hardest to work with Brielle, keep up on her therapy. Go to her endless appointments. Keep up with nebulizer treatments twice daily. Regulate her with miralax! Watching for all the "signs" of new issues, and teaching her the "right" way to do things, crawl, stand, walk, instead of the way Brielle "thinks" she should. All while trying to just raise a child! Im starting to find peoples comments very hurtful. I hurt so much inside when people ask me how old she is and I reply "16 months" and they look at her funny. Or ask if shes walking and I say "No" and they look puzzled, which is my time to make a quick exit. It hurts. I like to think shes "PERFECT" in my eyes. Because she is. But when people question WHY she isnt doing certain things, and wonder why she isnt walking, talking, etc. It makes me realize that this is a slow process, but if they only knew how far she has come!

soooooo in the midst of all the tears, I had the post crescent newspaper coming today to take photographs of Brielle, myself, and Brielles occupational therapist, Teri. He came 15 minutes early, so I answered with my puffy eyes and put on my smile. Teri came and I had a concern about a sensory issue in her. Damn mother intuition!! Sometimes, I wish I WAS WRONG! I do so much research on her and things that "could" be wrong and I listen to other preemie moms talk, so I've heard ALOT about sensory issues. Brielle wont reach in a bowl and take crackers out without snapping her arm back, almost to think about it first. I REALLY noticed it last night as we took her trick or treating (she was a monkey!). People would tell her to go ahead and take some and she just wouldnt. So I brought it up to Teri today, went and got a bowl of candy, something she clearly would like, and she snapped that arm back. Teri quickly confirmed my fears. Not that this one is a HUGE deal, but after this mornings melt down, I felt it was one more blow. I used to feel like she was doing SO amazing and everytime Birth to 3 came, they contemplated on lessening the amount they came to see her, and now they are upping the amount of times they come because of the amount of issues coming up with her sitting, the clicking, the sensory issues. UGH! I just feel like its all crumbling beneath me. I thank god EVERYDAY she is here. Things could be worse, and I dont want people to think Im being selfish, but it can really drag a person down! A good friend of mine, who I swear Ayden knew I needed her so he pushed her to me! But I texted her today when I was having a melt down because she had a daughter who had a lot of complications as well. She knows exactly how hard it can be. But then I felt extremely GUILTY for contacting her! She lost Kylee in March. What gives me the RIGHT to bitch to her? To cry to her? I did, because I knew she understands me! That she knows its "Normal." and she was a great friend to listen! THANK YOU KAREN! Others just say to me "Just be glad she here, you knew the day she was born there would be problems" It.does.not.matter. You dont want the problems. I dont wish this on anyone. Raising a preemie is not easy! I knew it wouldnt be! But its not at all what I had imagined! But when I hear her giggling like she is right now, it brings me back to reality! This is my life. Embrace it! Shes so full of love. Shes so happy. She doesnt know any different. To her its "NORMAL"

1 comment:

  1. Josh Amber and Brielle...I am speechless...I wish I could make things better for all of you!!! You both are so strong! She is soooo beautiful and has come so far, she just needs your help to keep moving forward. She has come so far...she has proven to so many doctors and nurses just how strong she is. She lights up my life with all her smiles...I rarely see her not smiling except when she does her shy look...and even that is adorable! You could have called me today and I could have came over and just sat with you for awhile. We are here for you anytime..we LOVE that little girl sooooo much! And we are so proud of her! And you and Josh! I will say extra prayers tonight so tomorrow will be a better day for all of you! We Love you!!! Grandma Cindy