FIST BUMP

I want to give a HUGH FIST BUMP to all my working moms!! Working and caring for a young child at home has to be the most tiring, mentally exhausting, guilt-consuming, time escaping without warning venture of my life. For any working-mom, it has to be hard to juggle work priorities and providing for your family with spending quality (energized) time with your loved ones. Now add in having a daughter that requires extra 'special' attention to the mix. Most days, I just feel so down right guilty for being at work and missing her growing and therapies and now even some doctor appointments. It just doesn't feel right. I am mom and I need to be there for those times, EVERY TIME. I have an awesome husband and an awesome nurse that are helping me through it all, but that guilty feeling. Its hard to swallow. I teach so I work with kids all day long. I work with needy, rude, loud, soul-sucking middle-schoolers (with the occasional sweetheart thrown in the mix) all day long. It is more draining than running a marathon with preschoolers at recess right after an art activity. Sophia deserves all of my attention and energy. Though, I will say no matter how hard of a day I have had at work when I come home to Sophia signing she missed me and giving me the sweetest slobbery kiss ever, I can feel the life creep back into my soul. How do you working moms do it? I guess I am doing it...With little sleep and dirty laundry. The mess can wait but memory making happens now. Someone tell me I am doing the right thing and everything will be OK. Someone please tell me that Sophia will always love me and think of me as her number one most important person in her life. I will just be crushed if she resents that I work. I can definitely tell she was kind of mad at me at the beginning because she would ignore me a little when I got home. How do you working moms not get jealous of your childcare providers? I guess it is a benefit that Sophia loves hers so much because I would feel awfully bad if she was crying when I left her or when she saw her nurse. Either way, I guess I just want to give you all a huge WAY TO GO! You rock super moms kinda fist bump to the world!

Currently...

Currently... the times seems to be flying by. It seems like days turn to weeks and weeks to years. It has been a while since I last posted. Really a lot and nothing at all as occurred since then. Sometimes the nothing at all is just what we need. Sophia is currently still using the walker (occasionally) to walk about. She actually prefers to walk holding on to someone's hand or by reaching out to the next thing near her for support. She has taken up to 12 steps independently. I will post a video of that soon. She is up to 10 seconds with standing all by herself too. She tends to do better with standing when she is practicing with her nurse. Her little feet get so busy she just wants to move and move. I really wish she was walking independently now. Sophia so desperately wants to go where she wants, when she wants. I am trying to teach her that using her walker will help her go on her own but she would rather take my hand and lead me around. I guess for now I will treasure the fact she wants to hold my hand and lead me through her world. She is so spirited. Her personality is spit-fire. She makes everyone she knows smile. That in turn makes my heart smile. She knows very many signing words now. We are working on combining words together and using sign to tell us what she wants. She really likes to tell me MORE PLEASE HELP and THANK YOU. My baby is the most polite 20 month old on the block. She also lets me know when she wants to watch Signing Times and if I don't move fast enough she starts blowing high speed raspberries at me. I believe that is Sophia's way on yell at me haha. A few weeks back Sophia vocalized real sound. It was so breath-taking. She has the sweetest voice in the world. It was a thrill to see (on video). Yes, she made sound with therapy on my first day back to work. Therapy told me that the session with Sophia making sound was the highlight of her career. She is infact the highlight of my life. Of course, I was crying like a baby at my desk. She has yet to do it for her daddy and I. We are still patiently waiting for her to share her sweet sounds with us. I have never wanted someone to walk, talk, or eat more than my own child. It is eye-opening when some of the most mundane tasks in life become the things we long for most. I will never take for granted one's ability to speak, eat, or walk. For these are the things I pray for my daughter every day. I know she will get there in her own time. I just can't help but to hurt in the time being. I still get a sting of resentment when I see her peers surpassing her abilities. How do you not let that hurt your heart? I put on a brave smile for her and never ever share my own insecurities with her. She makes me more courage and hope than anything I can imagine. Medically, Sophia has been very stable. No illnesses. No changes. We will not try for decannulation until next spring. In the time being we are practicing with the paci muir valve. We will hopefully have another swallow study in the next few months. I can not help but to get so frustrated that they will not let her practice eating due to risks of aspiration but I am very aware of the reasons why. So currently, we are progressively stable in terms of Sophia's medical status.

We are currently looking for a ways and grants to get more services for Sophia is terms of things to benefit deaf and hard-hearing children. We are starting the hunt for IPAD grants because augmentative devices are even more costly. I found an APP for the IPAD that is called, Speak for Yourself. Basically, it allows Sophia to arrange pictures and phrases into sentences to allow her to communicate with the speaking world. That APP is 300.00 dollars. Ugh. They also have several over learning apps and tools I am researching in order to help Sophia grow in communication. I think instead of birthday cards this year, I will be asking people to send iTunes gift cards lol. She loves her Signing Times DVD. She learns so many signs from watching them. I am working on getting more DVDs. She has practically memorized the few we have now. She is also able to point to pictures and sign correctly what she is looking at. We are currently working on colors, animals and daily around the house stuff.

I mentioned early about work. I am currently teaching art again. It was a tough decision but I feel that Sophia is medically stable enough for me to go back to work. I am very fortunate to have a terrific home nurse that goes way beyond the call of duty when it comes to caring for Sophia. I can literally go to work worry free and that in itself is a blessing. I am also very lucky to have found such a great school to go back to work too. However, being a working-mom is the most difficult job of my life. I will save the details for another blog.

We are currently selling our home. We are in the search of something better for Sophia. We currently have a two-story and it would make a wonderful home to someone starting out. We just need an open-concept single story for Sophia. We can't move a lot of her equipment up and down the stairs and we want to be on the same floor as her. We also need an open concept so that it will be easier for her to move about. We thought we had it sold on the first showings but long story short it fell through. We hope it sells quickly and that we are able to find the perfect home for our family.