Emotional Ups & Downs

Like most other heart moms that I know, my days are filled with emotional ups and downs. Most of the time I am able to remain fairly immune to it, only truly breaking down or getting overly ecstatic when the situation warrants it. Maybe this week was different?

Had a really hard time at PT @ Phx Children's. Our therapist is very sweet and did a wonderful job, but she mentioned she was fairly concerned about Grace's plagiocephely (flat head). This wasn't the first time we'd heard someone mention this- most agree that it's because of her multiple heart surgeries and prolonged hospital stays (NICU, PICU, etc.) that require her to be lying down. No one ever mentioned that they were overly concerned, most mentioned that they expected it would go away over time, with her spending more time in a seated position. However, the PT wasn't convinced. The PT advised me that I really should consider a DOC band- basically a helmet that Grace would wear for 23 hours a day, probably for 6 months. She reccomended that I call her pediatrician ASAP for a referral to Cranio-Tech @ Phx Children's and get her in. She explained that her sense of balance would be off, as her head is over the front of her spine entirely, and she would never fit into a standard bike helmet. Now, I'm pretty darn good about keeping my emotions in check until I get a chance to process the information. The car ride home was BRUTAL! I was bawling hysterically. I called the doctor for the referral, and my family, and my spouse. I can't explain this without sounding crass- so bare with me... Grace has been through a lot this year, yes? And you can imagine the questions that I get practically every day? They used to ask me if she was going to live, or if she was smart, now it's "Is she feeding on her own yet?" "Is she sitting up yet?" "She's walking, right?" UGHH!!! Enough!! I HATE, HATE, HATE those questions!! I know it's not my fault, but it makes me feel like an incompetent mother, like I'd prefer my kid just sit in a chair for the rest of her life. My mom tries to remind me that these people typically mean well, but that they don't have the experiences we've had, aka a heart baby. So, when I thought of one more thing- a very visual thing, the helmet, I lost it. I couldn't imagine keeping my poor little one in this helmet for 23 hours a day- sleeping, eating, etc. But, if it was going to help her, I was going to do it. Thankfully, my hubby asked me to call the pediatrician for a consult and referral. Turns out, the DOC band is typically most beneficial in 6 months and younger children- Grace is a year in 8 days! Also, the DOC band is PURELY cosmetic- there is not a true need for it, so long as no part of Grace's skull is pushing on any nerves (it's not). So, all those tears- unneccesary. Although, it is nice to get a good cry in every so often. I don't usually allow myself to really process my experiences. It's odd because people always comment how strong I am, but maybe it's really because I'm in denial? How's that for mentally healthy? HA!

Anyways, the rest of the week was WAY better. New Moon!! Woo-Woo! We had a fabulous time. We decorated my van (calling it the New Moon-ie Van), met Embry Call (Kiowa Gordon), won a trivia contest, got free loot, and saw the inside of a Embry's limo. After all that, we got to see the movie! The movie was much better than I expected, especially since the 1st was so terrible. I had a genuinely GREAT time, but was super exhausted the next morning. Life was rough that Friday.

Saturday evening we decorated for Christmas. Yes, it's early, but, we lost all of December, January and February of last year- living at Phx Children's. This year, we're having extra Christmas and loving it! Grace was even able to help put up some of the ornaments- she's such a big girl!

I can't believe she's going to be a year!! I have taken some time this week to look back on our year- she went from a 3 pound baby, to a big girl who has 2 teeth, can stay in the crawling position, and who laughs uncontrollably! I love her!!

Her birthday stuff is almost done- I'm excited to celebrate our year. It's been the best year of my life, but also the scariest- one I would never want to do over again, but if it meant receiving my blessing again, I'd sign up in a heartbeat.