ups and downs…

The last couple of days have definitely had it’s ups and downs. We’re slowly realizing that this road is going to be a very unpredictable. Yesterday started out amazing. Maliyah woke up happy and cheerful. We went to church and we got to socialize with everyone there. After coming home and having lunch we all knocked out for a nap. Maliyah didn’t stay down very long and we decided to join some church friends down at Moloa’a beach to hang out. Maliyah had a blast. I waterproofed and secured her PICC line so that her dressing wouldn’t get wet and she frolicked and played with all her friends in and out of the water. About halfway through the afternoon I noticed that her abdomen was looking bloated but she was acting just fine.

After she played till her hearts content, I took her to the other side of the stream to change her clothes and to get her dry and warm. As she was holding on to my neck while I was changing her clothes said in her sweet little voice “I love you”. It just melted my heart. It’s moments like these that I will cherish in my heart forever.

Last night, Maliyah started to complain that her tummy hurt and that she wanted me to rub it. It was definitely bloated and she was very uncomfortable. She was finally able to burp out a few good burps and then fell into a fitful sleep. Often times that is the end of it and in the morning she wakes up completely normal. This morning was different. She woke up saying that her tummy hurt, she was still very bloated. All she wanted to do was to nurse and then she fell back asleep. Kevin, our home health nurse came to do her dressing change, and I told him what was going on also. We measured her abdomen and it was 52.5 cm in circumference. She is usually around 47-48cm. After the dressing change she wanted to go back to bed, so I took her back to bed and nursed her again and she fell back asleep. She woke up again around 2 o’clock and wanted to nurse again. She was still kind of tired and asked to go back to bed. I took her to bed and she then burped a small burp and then said “better” with a smile on her face. From that moment on she was back to her happy, cheerful, energetic self.

Adam and I have had some heart to heart talks lately and we’re coming to the realization (slowly) that there is nothing we can do to change Maliyah’s diagnosis. I’ve noticed that my mood goes up and down with her physical presentation. If she has a good day, I have a good day. If she has a bad day, I have a bad day. I’ve also realized that I’m not as happy as I once was. I can’t remember the last time I laughed so hard that I almost peed my pants. It’s hard when you have a kid with a medical problems to not get so emotionally involved in their care to not lose yourself in it. It’s difficult to take some time out to focus on self care. We decided to savor the little moments and the small victories. To cherish each day we have with Maliyah and each other. We can’t change the outcome of Maliyah’s health but we can change what kind of parents we are to her. We can do the best we can to help Maliyah love life to the fullest and to take each day by the horns.

Photo credit: Paul Yoo