If you've been following our journey you will know that it hasn't always been easy. Both my husband and I have always been on the same page about being transparent and just keeping it real. Over the past few we've both been a little concerned about Jaxson's speech. He's 20 months old and 16 months adjusted. In February we updated his IFP (Individual Family Plan) with our new Regional Center and I expressed our concerns.
There's a deep void that sometimes comes with being a parent to a preemie. Feelings of loneliness and isolation. Birthing a premature child puts you in a club that you didn't really want to be in but circumstantially welcomes you with open arms. I remember in the beginning I shut down in a way, I showed strength but inside I was a little withdrawn. I couldn't talk to my friends who were pregnant, it was hard to see mother's with their babies out and about. I was mourning my pregnancy that was cut short. I hid my truth for some time, my text replies were short and sweet and talking on the phone was a rare occurrence. I became guarded not wanting people to feel pity for me, my husband or our baby boy. Yet at the same time, I felt like the world should know what we were facing. I felt like screaming to the top of my lungs sometimes. I wanted people to stop complaining about little things and realize 'hey your life isn't all THAT bad'. I guess in a way I had some self pity. This badge of honor, being a NICU parent is one that would I carry for the rest of my life, it changed me and caused my perspective to change.
To say I was as fragile as a piece of china would be putting it lightly. People often mentioned how strong my husband and I were. Their words would soothe my soul. I found strength when I looked at our son, I prayed often and felt the prayers of others. That is what I feel helped us make it day by day. Although I would never know what it felt like to have a full term 100% healthy newborn, I still felt blessed to have my miracle son. Our "normal" wasn't normal to most but still we pressed our way through, smiled through the pain and continued to share our story although the pages were being written daily.
Like a lot of preemies, Jaxson came home on oxygen, a pulse oximeter monitor (which monitors the babies oxygen saturation levels) and 4 medications. A few days prior to Jaxson's discharge, Life Care Solutions dropped all of the equipment off that we would need. I walked into my living room and immediately became overwhelmed, my heart dropped! A warm sensation came upon me and I am pretty sure I felt like I was going to pass out. My husband told me we would have a tutorial on how everything worked. My flesh felt rebellious, in that moment I didn't want to learn, and I certainly didn't want my baby boy to NEED this when he came home. I cried out to God, why? how? How can we live a "normal" life and go places and have play dates? Would I feel ashamed or embarrassed when we went out in public because we have oxygen and a pulse ox with us? Although this equipment would only be temporary, it still It took me a moment to process these overwhelming feelings.
God never gives us more than we can bear. He saw fit that Marc and I would be great parents to Jaxson. The more I began to feel the Lord's grace covering me, thankfulness filled my heart. To know that God trusted us enough to not only birth a miracle, but to take care of him and raise him to be an amazing person showed me how blessed we were. Many are called, but few are chosen. Knowing that you have been chosen and hand picked by God to be your child's parent is amazing! No matter how hard the road you may have to travel, God's grace is sufficient, it is simply enough. He doesn't call the equipped, He equips the called. The task that was upon us, felt heavy...we were entering into a season of not just being a parent, but being a care taker monitoring oxygen saturations, heart rate and multiple medications around the clock, while still providing love and and a nurturing environment for Jaxson. My husband and I don't have medical backgrounds, but for 4 months while Jaxson was in the NICU, God filled us with all of the knowledge we would need to know. We would hold conversations with people and they would say, "wow you sound like a nurse"! While we aren't certified RN's, we have become skilled at taking care of Jaxson and have gained the confidence and strength to be the best parents to our NICU graduate.