As the days, weeks, months pass on by I feel myself slowing becoming paralyzed in fear.
As we inch closer to Sweet Em’s first birthday I am feeling overwhelmed. Overwhelmed with emotion, with fear. There is an innate sense that we need to make sure that the time we have with her is full. Full of love and new experiences.
I don’t have enough time. I haven’t had enough time.
I say this over and over again as I rock my little girl to sleep. Kissing her sweet head before I put her down for the night.
Please give me more time.
The past few weeks have been FULL of adventure, new experiences and most importantly love. Spending time in California at the beach, going to Disneyland, and every waking moment we could outside with family. Then Aunt Rachel came to visit out in the desert and our days were full of baby snuggles, ice cream, and splash pad fun. There are so many wonderful memories that I want to share on here. And I will- I just don’t know when.
For now I am prepping for a sweet little birthday for our baby girl. Every moment they are awake we are off to another adventure- even if the day just calls for an epic water balloon fight against dad in the backyard.
I have been noticeably absent here. The only thing I don’t have more of is time. I can wait another day to post, and I will.
For those that don’t know Em has heart irregularities, essentially a hole in her heart- much more complicated than that but I get shaky even just typing out her condition.
We have been bracing for her next set of tests to see if surgery is the answer both emotionally and financially. There are many areas that I shop around for- the care for my child’s heart is not one of them.
There are times in life that people tend to open up and tell you what they’ve heard about from a friend. Along with birth horror stories apparently having a child with a heart problem falls into this category. I am thankful that many people know someone that has had a hole in their heart and is now fine- although they never can actually tell me what was essentially wrong with the child(hole in the heart is incredibly vague). I am living proof that you can live an active life with heart problems. The only problem with all of our friend’s and family saying that so-and-so had something like that and they’re fine is that is portrays an air of unimportance- that my feelings of doubt and sadness are unwarranted- that Em will be fine.
Fine.
Since her diagnosis I have heard that exact term from too many people. I have been shushed and quieted as if her diagnosis was just regular turn-of-the-mill news. People can be so cruel when they are trying to be kind.
The next month is going to fly right on by, just as fast as the past eleven months. Sweet Em soon will be one and we will know what the future holds for our little bundle of joy. Not knowing is hard and I break down at night after both of the little ones are tucked in bed, the toys are picked up, and the dishes put away. I break down at night because you can only be strong for so long before you need help. A hug, a story to read, and some movies on the couch. I may look like I’m doing fine, but I am just doing the best that I can every single day.
Hoping. Wishing. Praying.
