6 Secrets Special Needs Moms Know But Won't Tell You
1. Special needs moms are lonely. I yearn for more time with friends and family. I have an authentically positive attitude and most often you see me smiling. I may even look like I have this SuperMom thing down, am super busy and have enough help. But I am lonely. Being a special needs mom doesn't leave me the time to nurture and maintain the relationships I really need. I could get super detailed here about the hands-on caring for my child. (Do you remember when your kids were toddlers? That hovering thing you had to do? It's that plus some.) The plus-some includes spreading my mom love around to my other child and my husband, who on a daily basis are put on hold, waiting for my attention. I don't have much time to call or email my friends and even family ... and if they don't call or email me, well then I feel massive guilt about the time that has passed. More negative stuff that I pile on my shoulders. Getting out is tough. I miss the days when I had playgroups with other moms, open-house style, dropping in and drinking coffee at a friend's kitchen table with my child playing nearby.
2. Special needs moms have to work extra hard to preserve their marriages. This work goes along with the high stress of special needs parenting and aims to combat the sky-high divorce rates for special needs families. I put extra pressure on my husband; he is my best friend, and sometimes I expect unrealistic BFF behavior from him at the end of the day (see no. 1). He is my hero: supportive, patient and loving -- and my kids would be totally lost without him. The success of our marriage will affect the health of our children. My husband and I haven't spent a night away from our kids for six years. We "date night" out of the house every few months, for a two-hour sushi date. Our marriage is a priority, so we "steal" our moments when we can.
3. Special needs moms are not easily offended. Despite what our social media status updates say, we are vulnerable, and life messes with us daily. So really, ask what you want to ask and it's OK to start with "I don't really know how to say this, how to ask you...." I am especially touched when someone cares enough to ask me how my child is feeling, or how to include my child in a social gathering, meal or other event, and am happy to collaborate on what will work for us.
4. Special needs moms worry about dying. We worry about our kids getting sick and dying; we worry about our husbands dying and leaving us alone; but most of all we worry a lot under the surface, and especially about being around to care for our children. We watch people we know grieve the loss of their children and try not to think about it. On the upside, we live life fully and don't take it for granted.
5. Special needs moms are fluent in the transforming body language of touch. This is the first language we learn, and sometimes the language our kids know best. This therapeutic natural language can relax, redirect and heal. This should be the first language "spoken" in every home.
6. Special needs moms know to savor the gift of a child saying "I love you." For the longest time I wasn't sure if my daughter Zoe would ever speak the words. When she was a newborn, it was her sighs of contentment as I held her against my breast that told me how much she loved me. When she was a baby, it was that peaceful calm that came over her when I carried her in my arms. The first time Zoe found her words, she was already a little girl, and every time she spoke them I cried. She is 10 now, and her words are even more tender and wise. I leaned into her at bedtime the other night, and as her hand reached up, caressing my cheek, she whispered... "I love you Mom, for taking such good care of me."
1. Special needs moms are lonely. This may be the one point that describes me least. I wouldn't say I'm lonely. I am incredibly blessed to have an amazing group of friends that support me and are always there with a shoulder to cry on when needed. We have a great time together and that allows me to temporarily forget about the craziness that is my life. But the part that I can relate to is feeling like I neglect my husband a little, because I'm so busy taking care of the needs of my son. I'll get more into that in the next point. I also can relate to not staying in touch with family and friends. I sometimes rely on Facebook a little too much to know what's going on in my friends and family's lives. I don't pick up the phone and call nearly as much as I should, and before I know it, a great deal of time has elapsed since I last called. That makes me feel incredibly guilty.
2. Special needs moms have to work extra hard to preserve their marriages. This really hits home for me. Marriage is hard for all of us. If it were easy, there wouldn't be as high of a divorce rate as there is. And when you add a special needs child into the mix, the divorce rate is even higher. I have always been so thankful that God blessed me with an incredible man who is willing to stand by me through the tough times, and there have been some tough times. Not all men would have stuck around through everything we have been through. Not only do I put a lot of stress on myself, but he does as well, probably more than me. He takes his role as provider very seriously and I know the stress wears him down. Add to that my unrealistic expectations of attention, and it puts extra pressure on him. We don't have a lot of time for just us. We do have the occasional date night out, but they are a little harder to come by because we can't just call up the teenage girl across the street and ask her to babysit. We have limited options when it comes to someone who can care for John while we are out. That makes it harder to get away. We go out later than usual because we have to get John in bed before we can leave. Because he's on a ventilator at night, not just anyone can put him to bed. And if I'm being really honest, as much as I love the time with my husband, I am completely exhausted by the time we get home. We have been fortunate to be able to get away for the weekend a total of 4 times in nearly 8 years, and the first time wasn't until he was 6 years old. If it wasn't for my parents' willingness to keep John so we can have 2 nights alone, we wouldn't have been able to. But the thing is, when we do get those times alone, we are so exhausted from our everyday life, that it's hard to just enjoy each other's company. But he is my hero. He is a wonderful husband and father. He works hard to provide for our family so that I can concentrate on our son and his needs. He gives me nights out with my friends when I need one. He makes me feel safe and protected. I can't imagine going through this journey with anyone else by my side and I will work extra hard and do whatever it takes to make sure I always have him next to me.
3. Special needs moms are not easily offended. This is very true for me. I have encountered a lot of people who are afraid to ask me certain questions. I can tell they want to say something but they aren't sure if they should. I've even had the encounters in the elevator at the hospital where kids want to ask a question about John and the mom covers the kid's mouth. The truth is, I'd rather you ask. I want others to know that not everyone is the same. Kids especially need to understand that. If you want to know how something makes me feel, ask. If you want to know details about taking care of my son, ask. I will not be offended. The only time I get offended, is if someone tries to avoid me. And I am especially offended when someone acts like they feel so sorry for me because my son is not a typically developing child. Don't feel sorry for me. God gave him to me for a reason, and I like to think it's because he thinks I'm special enough to do this job. I am blessed beyond words for having him in my life, so there is nothing to feel sorry about.
4. Special needs moms worry about dying. Boy this is so true, especially having a heart defect. On days where I feel too tired to go on, I do it anyway for my son. I see it as my job to take care of him, and I worry all of the time what would happen if I wasn't here to do that. I even worry about getting sick or getting hurt to the extent that it limits my mobility. I have had small glimpses of what it would be like when I have had surgery or been in the hospital and not able to lift him or take care of him. Fortunately my mom was always able to step in and help. But I know she won't be able to do that forever. In my mind, no one can take care of him like I do. I just keep saying to myself that I can't die. I had gotten to the point where I was beginning to be scared to be alone with him in case something happened to my heart. I didn't want to have a heart attack or pass out and leave him here alone until whatever time Tommy came home from work. Since I got my defibrillator, I worry less about being alone with him, but I still worry about dying. The good thing about it is it forces me to take better care of myself. I go to all of my doctor's appointments when I'm supposed to and I usually listen to the advice they give. I need to be better about nutrition and exercise, but let's not get too crazy.
5. Special needs moms are fluent in the transforming body language of touch. Everyone has their own special love language. For some people giving and receiving gifts is their way of showing love. For others, it's doing small acts of kindness, like helping around the house or running errands. For me and for my son, it's physical touch. He is a very tactile person. His vision and hearing aren't normal, so he relies on what he can feel to know what's around him. He is always grabbing and touching. He gives hugs like nobody else, even though sometimes they turn into a headlock or choke hold. I don't know if this has always been my love language or if it's just been since I had him. All it takes with me is a touch on the shoulder, or the hand. An unexpected hug will go a long way with me.
6. Special needs moms know to savor the gift of a child saying "I love you." I get love from my son every day. He will probably never be able to actually say the words "I love you" or any words for that matter. But every morning when I lift him out of bed and carry him to the living room, he wraps his arms around my neck. When I'm getting him dressed and I sit him up to take his shirt off, he wraps his arms around my neck. This is often when that hug becomes a headlock, but I love it. He will look me in the eyes and then lean in and give me a wet, slobbery kiss on the cheek. He's getting heavier so lifting and carrying him is becoming harder and harder. But as long as I'm physically able, I will continue to do that. Because every time I have to carrying him someplace, I get a hug around the neck. That's how he says "I love you, mom." And every single time, it melts my heart.
No comments:
Post a Comment