After caring for my son Andrew for 20 years, this is what I wish I could tell my younger self.
I see you are having a difficult time. Life with your first child isn't as you imagined it would be. Your baby is struggling to meet his milestones and is extremely hard to comfort. As if that isn't enough, your baby is having seizures, something you know nothing about. You've never seen or heard anything like this before. You are questioning yourself and wondering why this is happening to your baby and to you. Why couldn't your life as a new mom be filled with happy times just as you see your friends are living? You will learn as the years pass that every single family has its struggles. What is important is how you handle challenges are you are facing them.
There are daily visits from therapists. They are coming into your home and interrupting your life. They are working with your baby and bringing him to tears. He is crying, and even worse, he's not making any progress. You are beyond stressed. Your son is always on your mind. Are you doing enough for him? Just one more stretch, one more therapy, one more treatment - anything to help him progress. You may not realize it, but you are learning another valuable lesson. As long as you are caring for your son the best that you can, it doesn't matter where he is developmentally. Your focus will turn to your son's unique abilities. You meet him where he is. You focus on his happiness, his abilities, and his comfort. This is what is truly important.
Your son's seizures are frightening. Medicines aren't helping. Your son is growing, and new issues are manifesting. Once again, those feelings are there: am I doing enough? You've taken him to see countless experts and undergo every single test for possible treatments. You've read the medical books; you've searched online at all hours of the night. You may not realize it, but you have become an expert. You are an expert in this rare diagnosis, but more importantly you are an expert on your child. You advocate and accept what treatments your child undergoes. It is okay to stand up for your child and to challenge his care even to those you most revere.
You may come to the realization one day that some medical issues are extremely hard, and unfortunately almost impossible to treat. For your son, the seizures are what worry you the most. That doesn't keep you from doing everything you can to try to stop those seizures. You will realize, though, that there's a life to live even with those devastating seizures interrupting. Focus on what brings you, your son, and your family happiness, not on those seizures.
In the early years of this new life, all you'll want to do is hide and retreat with your child at home. Accept help from your family if you are fortunate enough to have those offers. Find your "people." Connect with other parents through your child's school, doctor visits, and therapy appointments. Having someone there to talk to who just "gets it" will be your most valuable resource. Join online support groups -- they will greatly open the world you are living in. You will feel less alone, and may even feel inspired. Better yet, your son could be someone else's inspiration.
One last tip for you as you are starting: make time for yourself. Don't be afraid to step away. Continue with your hobbies or interests, maybe even take on new interests. Finding interests outside of caregiving and this community will nourish you. They will give you the break you deserve, and an outlet away from your day-to-day life. You will be an even better mom if you are rested and happy.
The world you are navigating is foreign and strange to you now, but trust me when I say it will become your home and your norm as the years carry on. You will grow and become more comfortable, and your child will shine.
About the Author
Rachel A. is mom to four children. Her first son was born full term, but with difficulty leading to a life that wasn't what she had prepared for. Rachel has found strength and support from other caregivers of children living with special needs. She hopes to share a little of what she's learned over these 25 years with other families. Rachel lives in Maryland with her husband and four children, dog, cat, and various foster kittens. She loves traveling, especially out west and to Sanibel Island, FL. She also enjoys spending time with her husband and kids, cooking, thrifting, listening to music, and spending time outdoors.
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