But as for me, I will sing about your power. Each morning I will sing with joy about your unfailing love. For you have been my refuge, a place of safety when I am in distress.
– Psalms 59:16

I never pictured I would ever go through anything like this. As Piper is growing and developing, different challenges, stages and changes arise, followed by more grief. The grieving of missing out on so many things, feeling the pain when she goes through pain, when she’s not able to do things like others kids, when we are missing out on what we are supposed to be doing. It’s hard.

If there is one thing I know for sure it is that God is good. My circumstances bring suffering on a daily basis that people can’t really comprehend but what I know amidst this, God’s unfailing love is surrounding me. His mercy and grace are on my side and I can do all things through Christ.

What I am learning is amongst the pain there is always something positive that comes with it. I think it’s sometimes easier said than done, but if I reflect on all the negatives then it can consume me and get me down. I love to find the positives about our situation, happiness and positive thoughts are a choice. But once you can master this, then any suffering you face can become a little easier. It doesn’t necessarily take away my pain, but it makes me thankful for each thing, it makes me take a step back and search for the positive, then I feel a little more confident, a little more accepting of our situation and my faith grows a little more.

Piper is on oxygen at night time. It sucks. We have to pin her down day and night to stick the oxygen on her face and then remove it in the morning. The positive is that every time we are finished she gives herself a clap. A reassurance to herself that she is brave and can tolerate so much.  The oxygen helps her sleep better, and when she has apneas (every night she stops breathing) it helps keep her levels up.

She has a peg (a tube that is a hole in her tummy held in by an inflated balloon – pretty cool) I am so thankful for this tube, it is her lifeline to thriving and gaining weight. She has to have a lot of medicine, so it doesn’t matter how bad it tastes it goes straight through the tube. She gets exactly the right amount and she doesn’t become dehydrated.

We go to a lot of appointments at the hospital, it’s a long trek, but we have access to incredible doctors. She has therapy for speech, OT and physio every week and although it’s tiring I am learning new techniques to encourage her to talk, get her muscles stronger and for her to learn how to eat.

Piper’s hearing started out as severe hearing loss, then it changed to mild and now it’s back to moderate and severe. It’s never nice being told this, although I am fully aware she is deaf, when you hear the words again and again from the audiologist it sinks in that little deeper. But she has a hearing aid and with this she can hear at almost normal range. Also noise doesn’t matter, so shout as loud as you like when she’s sleeping. We always joke to people when they say, “sorry for being loud” we say, “oh its okay, she’s deaf!” Sometimes they don’t know what to say or whether to laugh with us, but occasionally you just have to not take things so seriously. I remember when Piper was maybe about 3 months old we took her to the movies with us. We watched Fast and Furious and she cried a few times but no one could hear her because she has such a quiet cry. I would never do it again though now she’s older haha.

Piper had her developmental assessment a month ago, and although I could dwell on the negative that she was delayed in most areas, her receptive language and communication was developmentally at her age. This is incredible considering she has significant hearing loss and is non verbal. She can understand what you are asking and can communicate with her signs, pointing and nodding. This amazes me because her last developmental assessment when she was 10 months old she was only at a level of a 6 month old. All glory to God, and I know she will just keep on improving.

When you can learn to focus on the positive, have positive thinking it becomes away of life. It can effect people we meet and can influence them. When you can step back and notice negative thoughts you learn to replace it with a positive one. It’s something I’m consciously working on in the hope of any situation I am faced with I can see something good from it.

Rejoice in our confident hope. Be patient in trouble, and keep on praying.
– Romans 12:12