Little Moments
I have often been told by older generations that time flies when raising children, you blink and they are all grown up. Four years ago, I could not see past the next day, as we were told that Maliyah most likely would not survive. And here we are - Maliyah is nearly 4 and a half! For her birthday (May 23) we celebrated it at Ke’e beach, with balloons, a pinata, and most importantly surrounded by friends and family (I will be uploading a video shortly of her special birthday).
The last few months have kind of flown by. We’ve had friends and family visits. We made a last minute trip to Michigan to say our goodbyes to Adam’s grandpa. While the trip was bittersweet we were thankful for a life well lived. Adam has been busy building up his metal working business, I’ve been working on my real estate photography business and have started to dabble with e-commerce. Maliyah has been taking swimming lessons and over the course of the last few lessons, and things have started to click. She has also restarted her ballet lessons and is loving every minute of it. Maliyah is also starting to get enthusiastic about letters, numbers, words and how things work.
Maliyah loves to make people laugh and will talk with just about anyone. She has made friends with our next door neighbor who she lovingly calls Grandma. For a while there, they would sit at the fence passing crayons and markers through the chain links to draw on the concrete below. Eventually, Maliyah asked to climb over the fence to visit. She has spent many mornings happily chatting away to our sweet neighbor.
Medically speaking…..We definitely have had our ups and downs, thankfully we have not had a long hospital admission since her g-tube surgery. We’ve had moments of great intake and weight gain, and moments of pseudo-obstructions and weight loss. We are currently at 9 hours of TPN, 3 gtube feeds a day and whatever else we can get her to eat. I have been trialing a Japanese Kampo medication called Daikenchuto and it seems to be helping, however, time will tell. We are trying to make meal times as enjoyable as possible, whether or not food is actually eaten.
Over the last few months, both Adam and I have had to have some difficult conversations with Maliyah. The older she gets the more she is realizing her differences. One particular night as I was putting her to bed, Maliyah had been in quite a bit of discomfort, and I said to her “I’m sorry that your back hurts and that you are in pain, I wish that you didn’t have any pain.” She told me “It’s ok Mommy, but I don’t want my gtube and broviac any more, I want all this to be gone, I want to be like the other kids.” This made my heart hurt so much and the only thing that came to mind was this “Honey, I don’t know if you ever will get rid of those, but one day, when we are up in heaven - you won’t have any more pain or a gtube, or even a broviac. You will be able to eat whatever you want and it won’t hurt your tummy.” “Mommy, how do we get to heaven?” “Maliyah we can get to heaven by getting to know Jesus and telling Him whatever is on you mind. Talk to Him when you are happy, sad and hurting. Make Him your best friend, and one day, He will take you to heaven.” I came out of the room crying….I just want to take all her pain away…. My prayer for Maliyah is that Jesus will become her best friend and that He will help her make her weaknesses her strengths.
