Six years ago, I was pregnant with my first and had recently found out I was expecting a boy. I literally spent weeks online picking out the perfect fabric for G’s custom crib bedding, and I returned to the paint store three times because it was vital to obtain the exact right shade of blue for the nursery’s walls. I celebrated with my friends at several showers, and as we oohed and ahhed at teeny baby clothes, I never considered for a second that the little guy turning somersaults in my belly would be anything but healthy and perfect.
Although I shake my head now at my blissful naiveté, I am grateful that for nine months, I didn’t know the hard, heartbreaking road that lay ahead. In the weeks and months following G’s birth, I became aware that my little boy wasn’t meeting any of his expected milestones. Suddenly, I wasn’t just a “new mom” fighting sleep deprivation, but now I also carried the label of Special Needs Mom. I was desperately trying to navigate early intervention, medical specialists, and genetic testing while at the same time trying to fit in with the “normal” moms by attending play dates with in-depth discussions of nap schedules and teething. It was exhausting on many levels.
Parenting a special needs child is completely life-altering. In those early days, I tried so hard to look and act like I had it all together, even though I had no clue what I was doing or how I was supposed to be processing what was going on in my home and in my heart. Although I love my son desperately, I had to grieve the death of many dreams I had for him. Thankfully, time and experience help tremendously, and five years into this special needs parenting gig, I finally feel somewhat confident and believe I have some insight to offer newly-inducted Special Needs Moms.
Mama, if this is you, trust me when I tell you that although this life is hard and absolutely heartbreaking at times, there is nothing like the love you will feel for your precious child. It’s passionate and fierce. You will discover you are stronger than you ever thought possible. You CAN do this, and you will do it well. Just please do not try to do it all on your own.
There is no “right” reaction to a diagnosis or discovery that your child isn’t developing typically and there is no “right” way to process it.
I have a good friend who cried for days after her son was diagnosed, but I did not. Even today, I rarely cry about G. I write about him, I talk about him and his disease a lot, to anyone who will listen, but I just can’t cry. I sometimes feel guilty about this, but I realize it’s probably my subconscious defense mechanism. If you cry, scream, curse, and yell at God, that’s okay. If you walk around in a fog and don’t want to talk to anyone for a month, that’s okay too. There are no rules here.
Give grace to those who mean well, but just don’t get it.
There will be people who say well-meaning, but completely asinine things. You will feel like they are minimizing your and your child’s suffering by being overly positive. You will be told you are SuperMom and that they don’t have any idea how you do it – just because you are in this role that you never asked for and would trade away in a second if your child could be healthy. Grace.
Your child is the same child you knew and loved the hour before his diagnosis.
I remember the day after finding out G has Leigh Syndrome, a life-limiting disease. I felt guilty because at his bedtime, I was ready for him to go to bed. I felt like now that I knew I didn’t have forever with him, I should want to spend every second with him, hold him tight, and never want or need a break from him. The exact opposite is true. For your emotional health, you need breaks and time away. My advice is this: pursue a program that will give you respite and/or nursing care or find a really good babysitter. The next few years will force you to become the nurse and therapist you never wanted to be, but giving someone else some of that responsibility will allow you to focus most of your energy on just being Mom.
Find a support group.
You will not only gain valuable medical advice and emotional encouragement, but you will also meet some of the most wonderful people you never would have met otherwise. Some of my closest friends are women I’ve met on this journey, and the love and connection I have with them is extraordinary.
Decide on a main overall goal for your child.
G’s comfort is my goal for his life, and it’s what my husband and I base every single decision we make for him on. It actually makes decisions for him a little easier when we put them though this filter. But it also sometimes means disagreeing with doctors, putting him through an elective surgery, or doing things over and over and over that make us uncomfortable.
Don’t focus on death {or whatever you imagine the worst case scenario for your child to be}, but look at each day you have as a gift.
You are human, and of course you will have many fears about your child’s life. But if you spend all your time being scared, angry or sad, you will miss out on the joy that comes with raising your child and celebrating his accomplishments, no matter how small. This really is an in-your-face opportunity to truly treasure the time you have with your precious baby. And, as I said before, it’s okay to be mad at God, but make up with Him sooner than later. You are going to need Him.
Don’t be afraid of or resist a feeding tube if your child really needs it.
Yes, it’s horribly sad that G can’t eat or drink by mouth, but feeding him is zero stress on those who take care of him. I’m not fighting him to eat, worrying about hydration or him getting enough calories, and his tube is just a part of him now. And once you get the hang of it, it’s second nature and not at all scary.
Let people help you.
Enthusiastically say “YES!” to anyone who offers to bring you food. {The last thing you want to do tonight is cook, right?} Many people will ask you to let them know what they can do to help. If you need something, ask for it. If you can’t think of anything, don’t feel pressure about that either. Again, no rules.
This life will never be normal or anything like anyone else’s life, but it will become your normal.
When you find that normal, there is some comfort in that. G came down with a tummy bug and was in the hospital the other week. What would have been a huge event five years ago is now just a tiny bump in the road, an event that will most likely mostly fade from my memory in a few days or weeks. But, it will never become easy seeing your child in pain. There are things that your baby will go through that will make you furious, sad, and helpless. It’s just part of it. But I’ve come to realize that G doesn’t hold onto that pain – once it’s over, he’s happy and content to be sung to and loved on. I wish I could be more like him. Let your child be your teacher.
Becoming a special needs parent feels like being pushed into the deep end of a pool, and you don’t know how to swim. So you kick frantically, gasp for air, and fling your arms hoping to find something-or someone-to hold onto. Suddenly, because your survival depends on it, you figure out how to float. – Ellen Stumbo
This quote accurately sums up my experience of being blessed with my special little guy. Most days, I find I do a pretty good job of floating, but other days remind me I’m still very much in the deep end. Fortunately/unfortunately, there’s a good many of us hanging out in the deep end, and I think a lot of the time we just need to help each other float.
