Thursday, August 20, 2015

You've Come A Long Way, Little Man

By Joel Brens

There are moments in life that will stick with you through it all. Memories that are a great reminder of all the work you have put in, all the blood, sweat, tears, and most importantly, joy, that comes with being a parent. These moments also lend hope to all that is possible for the future, and as a parent of a preemie that is something I think we all can relate to. It hasn't always been easy. Sometimes we've feel like we have more questions than answers. I have felt more joy and sadness over the last five years of my life than I had in all my days leading up to being a parent. There's nothing quite like it. Looking back on all that has transpired over Jayden's first 5+ years I often have to pinch myself at how far he has come.

Today we put Jayden on a bus to go to a full day of kindergarten. Wow. It's a far cry from the isolette and CPAP machine he used in his early days in the NICU.

I'd like to share five thoughts with you about what our journey has been like to reach this moment...

1. I still have absolutely no idea what I am doing, and that's ok. You can read all the books you want, take in all the advice, whether it's warranted or not, try all the latest parenting strategies, etc. The reality of it is there is no blueprint to parenting, especially for those of us who have had children in the NICU. What might work for 90% of parents may not work for you. Perhaps your parenting style is a bit unorthodox, but find something that works for both you and your kids. Moreover, there are times when something that has worked out great that suddenly doesn't work as well. Best advice? Change your dance step. It'll work out.

2. Be a voice for your child. I think it's fair to say that the doctors and nurses care for your child with best intentions in mind. That being said, there are times when parents and professionals may not see eye to eye on things, and they key to finding resolution is to have open, respectful communication. This especially rings true once your child has come home from the NICU. Doctors and nurses at family practices, among others, only get a small snapshot of your child. The best way to address things is to try and have honest dialogue about what your are seeing. Personally, we would rather go the extra mile and leave no stone unturned until we feel like we are headed in the right direction. Be a champion for your child.

3. Things don't magically go back to normal once you bring your child home from the NICU. That may be hard to read, but it's the truth. The reality is we all have different levels of obstacles and challenges we face as our former NICU kiddos grow up. Sometimes it's really hard to put things in perspective. While Jayden has come incredibly far from where he was three years ago with Early Intervention, we still have a ways to go. Over five years of "holding my breath" as we move to bigger and better milestones. It has been exhausting. But it has also been oh so rewarding. There have been times where I have felt overwhelmed with any given set of obstacles, only to come out the other side beaming with pride and relief. When your in the trenches, it's sometimes hard to see the progress that's being made. But when people who see your child less frequently are gushing about the progress being made, eventually you need to believe them. I challenge you to spend 10-15 minutes a day just observing your child. You will find new things they are picking up on every day.

4. Being the parent of a preemie has been such an unexpected blessing. I'd be lying if I said I haven't thought on a handful of occasions how different life would be had we had a typical pregnancy. But it wasn't meant to be for us. The best part about it? How I have grown as a person and who I have gotten to know along the way. Having a NICU baby lends perspective to things. While I have always been a bit of a worrier, I have been able to sift out a lot of the unnecessary baggage that used to weigh me down. Do I still have the occasional rough day? Of course I do. But being a parent gives you a sense of responsibility that can put such a positive impact on your life. I am ten times more patient than I used to be. I have leaned to adjust when life has throw a curveball or two-hundred. More importantly, I have been incredibly fortunate to meet and work with a community of people who I otherwise would not likely know. There are dozens of people who I know and care about on so much deeper of a level than just "Preemie Parents". What a blessing. I'd encourage you to connect with others as well. It's been life changing for me.

5. Success is a team effort. I cannot imagine what this journey would be like without the colossal efforts my wife has put into parenting our son. Giving your child the best chance for success means you and your wife, husband, partner, or significant other need to work hand in hand. For my fellow dads- that part of the journey begins as soon as your child is in the NICU. Ask questions, be as hands on as possible, kangaroo with your child, change diapers, clean pumping parts. Anything you can do to be there will make a difference. For all the mamas- be patient with your partner, and understand this is a journey from the get go for them too.

I hope that my perspective has helped you in some way or another. It's not always easy, it's not always fair, but if you leave enough room in your heart for hope and love, great things will happen!