Monday, October 27, 2008
We're celebrating 4 months of good health for Rosie. You can't ask for more than that. I've realized that I'm just now catching up on some things that I wasn't able to do when Rosie was first born. It's taken a while, but she's doing everything a normal 16 month old would do.
There are a lot of adjustments in the beginning. You just have to learn not to expect anything to be "normal" right off the bat. It takes a while for you and your family to adjust and understand what it means to have a child with this type of disability.
A reader asked to know a little more about our family adjustment. Most of it is your ability to roll with the punches, and just do whatever it takes to get through each day. There were many days filled with frustration, tears, and fears about the future. The best thing is to have a supportive ear and to stay strong for your baby. Do whatever it takes to stay positive and know that the ripples will fade and the waters will become smooth again.
It's very easy to feel shattered by the overwhelming nature of what having a baby with HLHS actually means. There's a long learning curve, it stretched out for about a year for us. You learn how to deal with your ups and downs, you learn when to go tot the ER, you learn to trust your instincts. That may be the most important thing of all.
Don't let go of your hopes and dreams of having a care free lifestyle. Sometimes it takes a little longer than you think, but you'll get there. If you have supportive people around you, you'll find that picking up the pieces is a lot easier.
Your focus should be on taking care of your baby, let your friends and family do the rest. Do your best to find patience and learn that all of the uncertainties will work themselves out. Surround yourself with love and don't try to be a one man band. Rely on those that can help you.
Remember that resisting the hardships of life can do more harm than good. Be fluid like water. It's peaceful enough to run your hands through, but strong enough to move even the biggest boulders from the river. It's a journey, that's for sure. Trust yourself and use the resources that you have. Your boat will still float if you stop rowing, sometimes you have to drop the paddles and just sit. It's harder than it sounds, but it's helpful.