I may have already mentioned this but it certainly is worth posting twice about- the support we have received from our family and friends during this past year. Not only has our little one gone through two open-heart surgeries, hospitalizations and various infection, reactions, etc., I also lost my job this year which was devastating to me. People reached out, sent suggestions on where I should look and what I should do to try to get some work. People offered to watch the girls so I could go on interviews and client meetings. It has not been easy, but I am slowly starting to see the fruits of my labor with a returning client and another good relationship.
I was encouraged to broaden my horizons a little and have enrolled in a WordPress course. After walking through some of it in class, I realized I knew more than I thought, which is always a good thing. My husband supports my yoga, and watches the girls so I can go find some peace for 90 minutes. 90 awesome minutes.
Our pediatrician is so supportive of my questions, my enthusiasm for sharing information that I myself am learning about Isabelle’s disease. The office allows us to be placed in a room immediately so we aren’t waiting surrounded my germs. When I have made calls to the nurse, our nurse is always placed on the phone because she knows Izzie so well. They care when she gains an ounce. They celebrate when she gains a pound, shows off her walking skills and big smile.
The support we have gotten from our awesome cardiologist never ceases to amaze me. She lets me call her about the most minor thing and responds to the pics I message her with great enthusiasm. She was the first to give us the details on what we were up against, and she provided the best information possible. She didn’t leave the room until she felt our questions were answered and if they weren’t, she never minded a phone call. All of those days when Izzie would lose grams, not eat what they wanted her to, and would just get so sick- she always answered the phone. It got to the point I didn’t have to introduce myself, she knew it was me. When we were inpatient, she would always check on us. When Izzie would be so aggravated that an EKG may not be a wise move, she said she was ok with not torturing her anymore. Same thing with the blood pressure cuff. It was ok, she didn’t need to be upset anymore. Her encouragement to let Izzie live like a normal child is something I am so grateful for. It would be so easy to shelter her, but she pushes me to let her do what kids do. It is exactly what I need.
Our family has stepped up every time we needed to go to the hospital, whether it was my sister in law who took Addie in while Izzie was born, or my parents coming over to stay with the girls so we could rush her to the ER. My aunt who came over to help me when I needed someone to watch Izzie during the week before she could go into daycare. People joining us for the Heart Walk we have done every year. This year, our charity is Miles for Miracles and I know I don’t even have to ask for peoples’ support.
Our surgeon is incredible too. Taking the time to go over the procedures, even going ahead and fixing a situation that wasn’t necessary at the time. Feeling bad about not having a better solution for Izzie but telling me he isn’t going to stop trying to find a solution for HLHSers like her. Can’t get much more support than that. Plus, I have a whole post dedicated to him later.
I am indebted to my friends- some old, some new- who have all posted on my page, asked me how she was doing, and cheered her on. Friends whom I haven’t seen in years have wished us well, donated to our cause and continuously send positive messages that make my day.
My heart mama friends. Fellow trench-dwellers. I value the encouragement, prayers and cheers I get from you as much as everyone else. Some even more so, because I know you have walked this path too with more adversity than us. The support I get from another mama who is in the hospital sitting by her child’s bedside is priceless. I know it helps me to reach out when I am in the same place, I am so grateful when others did that for me.
All of this support and love have sustained us during some pretty difficult times- some heart related, some not. Tomorrow we bring Izzie in for a cardio-neurodevelopment assessment. I am hoping she is further along than I think she is, and that we are on the right track. It’s hard when I see other peoples’ children who are the same age do a lot of things she can’t yet. But then again, Izzie is Wonder Woman.
hopeinaheartshape 