Growing Pains

Little A is growing before our eyes! She is getting longer and stronger, and has another tooth coming in up top~which is now causing her to be whiny and sleepy and clingy, none of which we have experienced with her before and we are finding just a  little unnerving.  She is participating more at Little Gym, spending less time attached to her momma and more time exploring (though still not wanting to interact with other kids!).  Yesterday at Little Gym, she reached for and allowed a stranger to hold her, snuggling into this woman’s shoulder as if she’d been doing so all her life.

While not rolling by herself, Little A loves  being rolled; she’ll get into her perfect Downward Dog pose and wait for one of us to grab her legs and roll her forward…and can do this one activity for 30 minutes or more with many giggles and smiles.  She is growing up and it is hurting my heart. While I am encouraging her to play with others, and to try new things, I am crying inside each time she does.  She’s not my little baby anymore, and I am having a hard time adjusting to her growth and newfound independence.  Three-quarters of me is cheering her on, the other quarter is wanting to hold her close and squelch everything that severs her dependence on me.  I want to keep her little, knowing that I can’t.  I expect this is how every mother since Eve has felt about her child’s growing up.

She is making great strides with the feeding therapist, too.  They are currently focusing on drinking from a cup.  The therapist says that she feels Little A has a good grasp on eating, but in order for her to “get off the tube” (meaning her g-tube) she needs to be able to hydrate…which means drinking water and other liquids from a cup.  This is something that I think Little A wants to do, as she is always reaching for and putting her mouth on the rims of our cups, but whenever she gets a little bit of liquid in her mouth she panics and quickly pulls back from the cup.  We work on giving her chances to drink without forcing her to do so; it’s frustrating, and messy, but will be so worth it when she can eat and drink like a typical child. We are waiting for the day~

Little A had an appointment with her cardiologist on June 19th, and received another good report.  She had an echocardiogram and Dr. Roten said Little A’s heart looks fabulous! So much so that she no longer needs to take Epaned (her heart medicine).   We spoke with Dr. Roten about our travel plans and made sure it is fine for us to take Little A to the mountains of New Mexico~we need a fun little family trip after the stresses of the past three years, and I am really looking forward to experiencing Angel Fire through my daughter’s eyes! No other cardiac appointments until January 2018.

I have been experiencing growing pains of my own, of a different sort.  I have made the decision that it is time to return to work, but have yet to find a company or organization that wants to welcome me into their fold.  I receive rejection after rejection (from approximately 5% of the applications I’ve sent–the rest haven’t bothered to respond at all, which I find a little rude and disheartening), and it’s making it difficult to continue searching.  One company that sent a rejection response actually mentioned my current stay-at-home-mom status and not in a positive light.

I didn’t expect my job search to be easy, but I also didn’t expect it to be this difficult.  I funded my education with government loans…which I have to pay back.  I  cannot do so AND help provide a decent life for my daughter on $35,000 a year thank you very much.

Lots of people I know are struggling, either in their current job or in their search for another one.  Most of us are highly educated and have been heavily involved in philanthropy and volunteerism, so why is finding work so hard for us? I don’t know.  But for me, part of it is that I am no longer willing to accept positions that I am not excited about and that will not lead to greater positions of increasing responsibility while also allowing me to be home with my family as much as I would like to be (meaning I no longer want to work nights and weekends!).

Do all parents of children with DS and a CHD go through this or is it just me? I am unapologetic of my decision, made with support and encouragement from Little A’s Daddy and at the insistence of her cardiac team, to quit working and stay home with Little A. It is not a decision I regret, and I am extremely grateful for this opportunity to nurture and care for my own child and not have to rush off to a job (to her possible detriment.)

Have any of you gone through similar circumstances? Have you quit a job in order to stay home with your child?  Was returning to the workforce harder after staying home? I would love to hear from you regarding your experiences.

One more piece of news: we have been watching Signing Time on YouTube and are learning sign language.  It is actually fun, and not as difficult as I was expecting.  I don’t know how much of it Addison is retaining (she’s only two, after all), but she does seem to recognize and understand the signs for “more” and “again”, as well as “thank you” and “hello”.  Do any of you use sign language to communicate with your non-verbal kiddos? If so, please comment about your experiences and how or when you learned to sign.  Thanks for checking in with our family and I’ll write another post soon <IMG_4564


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