So the Christmas Holiday has ended, family has been to visit and returned home, I am now watching kids on a regular 1-2 day a week schedule, Maya is at school full days again, Addy is still in preschool (thanks to some financial miracles), and Teya is taking on the YMCA swimming pool in full force. So this is the new rhythm of life. It is rainy and cold and we have had our share of snow considering we don't get a whole lot out here. We have a great crew of nurses that weave in and out of our home to care for Maya. I would say that we are no longer in "survival mode", but just living the daily routines of life. Perhaps it is unique in many ways, but I finally feel more "like" other moms than "unlike" them. I am tired much of the time, I schedule my life around the three most wonderful kiddos in the world, I wish I had more time with Dean (though we did get away overnight just before Christmas!), I would love to find time to read or to write, and I have moments of wondering what my house and my life will be like when my 3 girls are in school full time...that may be 2 and 1/2 years from now...not too far away! To be honest, I bet most Moms go through this. Sure...I have other concerns, that many moms do not. But I am so grateful that I do HAVE friends who are going through the journey of CHARGE Syndrome too...I am not alone!
It is amazing to me that I now have time to write on my blog! It is amazing that I am ONLY on the phone 1-2 times a day with someone related to Maya's care (school, nursing company, medical suppliers,doctors offices, etc...). In "survival mode" I was on the phone constantly during the day working out all the kinks in the system, and I think they are FINALLY working themselves out. In this new rhythm of life, Maya is doing great! She is healthy (having overcome a variety of colds and germs...even a tough one that gave Dean Bronchitis), she has a "content/ happy" spirit about her...she is smiling more, and more interested in being with people than being alone, she has learned to use my hands to communicate...she makes my hands sign "more", or "all done" or "good morning"...I can sign questions to her and she will correctly answer them taking my pointer hand and directing it to the correct object (i.e. where is the mitten, the circle, the cat?, etc)...she still loves her trike and when the weather is nice, we make sure she gets to cycle around the block...there are even days where she will keep her panties(that Grandma made, like cloth diapers) dry all day...it is rare, but it happens (we are more trained than she is, but she knows what to do:-) ). Maya just had a round of many doctor appointments and after this month, there is not ONE doctor appointment on my schedule...a true miracle... at least until the follow ups are due in 6 months. Yes, Maya still has her new trach and she has her feeding tube, and it is hard to imagine thinking about if she will ever get them out. Maybe??? No one has ever told us "NEVER." But right now I don't have a lot of emotions tied up with her trach or feeding tube. She is happy, she is healthy, she sleeps through the night, and is making more progress developmentally than ever before...I am a happy Mom!
Addy is doing remarkably well. She loves that her life is more stable this year, more of a routine, and loves to lay her clothes out the night before, pack drawings for her pre school teachers in her backpack that is carfeully hung on it's proper hook, and make sure everything is in it's place and just so...that does not mean she is super tidy, she just likes things a certain way. She also likes everything to be vibrant and a bit crazy...lots of color on her clothes, her drawings, and the most creative play adventures around our house with her dolls and peeps...but more so with her sister...playing "birthday party" (this is acted out by decorating a pillow with polly pocket dresses as a cake with candles and oodles of toys wrapped in blankets to be opened) or "Santa Clause" or going to "school"...or my favorite was "cooking the chicken" (using Maya's floppy pillow) and sliding it in the oven (under our rocker) YES, this play is a direct result of watching Grandpa cook! Addy is starting to read many familiar words, can count quite high, and has a genuine love of story telling/ listening and learning.
Teya is happiest, well, when she is well fed, well rested and has someone to play with. She was that way last year during all the chaos in Seattle and she is that way in the rhythm of life. And she spends about 60% of her day spinning with her arms outstretched singing a song, much like Maria on the mountain tops in the musical, The Sound of Music...whether it's our living room, at the park, or walking through a parking lot, she is happily carrying a tune with her arms wide open. Despite her small stature, she awakens each morning remarking to whoever will listen "I'm taller! I'm bigger!" To which Addy bursts into tears..."Mommy, Teya says she is bigger than me! and she's NOT!"...Which is NOT what Teya is commenting on...she just wants everyone to know that today she is bigger than she was before. But, I do think she enjoys ruffling her sister's feathers a bit:-) Teya is also growing quite an imagination herself. Having little fear, she will often stop suddenly after sprinting across the hall, look up at me and declare with very wide eyes "There is a big SCARY dragon coming!" and race up the stairs! In the pool at the Y she lets all the kids know that "there is a HUMONGOUS Shark in the water!" In addition to dancing and singing a musical all day long, we have discovered that she really enjoys swimming...as do I...it is my special date with her each week, and a very wonderful time for her and I to just be "the 2 of us"!
Dean has been a rock star! After finishing up 6 grants just before the New Year, he has managed to return to a stable work, work out, reading, and super dad routine! Since the New Year began, the stress level in our home has declined and there is an increase in laughter, hide and seek/ tickle games, wild adventure stories with the girls, and good conversations with me after the kids are in bed. Dean's year long work with a volunteer group to make recommendations to the legislature to improve deaf education in WA State has culminated in a very impressive 85 page report with much of the information coming directly from parents, educators, and interpreters. With a $4billion shortfall in the state budget we’ll see what if any of it gets passed into law, but I’m so proud of his work and the many others who committed much time and resources. Dean continues his work as a parent advocate on the board of Hands and Voices (another group working for improvement in the lives and education of deaf and hard of hearing individuals) . Together Dean and I are working to improve education at our local School for the deaf and hard of hearing and are learning a ton from other parents (many whom know deafness first hand) and are excited for these new relationships and the impact we could have on Maya's education and many other wonderful students.
In the next few months I am undergoing a variety of "research" and work to determine what I might do career wise in the years to come. I just renewed my teaching certification and am looking into areas that work specifically with children 2-6 years of age, and special education is not out of the realm of possibilities either. We will see what God has for me, but am enjoying the journey for now! Thanks for reading, if you made it this far, you are truly a wonderful friend!
