2013 – A brand spanking New Year is here. Many people were cheering, shouting, blowing those little honky horns, kissing and hugging strangers and familiar faces alike, wearing silly hats and drinking champagne (or whatever they could get their hands on) as they counted down the seconds to the ushering in of the start of another 365 days.
For a lot of people, this is cause for celebration. They have the opportunity to start afresh, to wipe the slate clean of any mistakes or disappointments of 2012 and go full speed ahead into a sea of possibilities….but for many preemie and special needs parents, the New Year is anything but new. Like the picture above shows, the year of 2012 (more like the stresses of it) are not entirely gone with arrival of 2013.
Their children may still be in the NICU and/or having to endure more surgeries and re-hospitalizations. Some are coping with having a ‘gang’, oops sorry I meant to say ‘team’ of therapists and medical professionals traipsing in and out of their home (unless they themselves are doing the traipsing in and out of treatment centers). Many of these parents are gearing up for the continued battle with their child’s school over the IEP requirements and implementation for their child within the school environment. Still others are nursing a serious headache after trying to reason with their insurance company over what surgeries, therapies or equipment are covered. Yet another segment is trying to explain for the umpteenth time to their friends and family members about their child’s condition. Shouldn’t they know by now? The list of scenarios experienced by these special parents is endless and varied….
Nearly all preemie and special needs parents question whether they are doing all that they can/should be doing for their child and whether or not they are being a good parent? I suppose that this self-doubt is common for all parents, but can feel extra heavy for preemie and special needs parents. I’ve said this before but it’s worth saying again. I feel that much of the self-doubt for preemie and special needs parents is largely due to the fact that from day 1, someone (whether doctor, nurse, teacher, therapist, etc) has been telling you what you should be doing for your child and how you should be doing it. As a result, your natural paternal instincts can become a bit dull from this external ‘pseudo-parent overload’. In addition, I, for one, have felt and still feel sometimes, like my life as a preemie/special needs parent is a never-ending saga of being in a state of readiness….for the next challenge, obstacle, diagnosis, assessment results, disappointment or opportunity. Sometimes I don’t even know what I’m being ready for. I just know that I have to be.
How can I look forward to the New Year when I feel like I’m still carrying and dealing with the challenges of the Old? There are a ton of ways, but I’ll keep it simple and focus on three (3) of them that are at the forefront of my mind right now. They are:
1) Acknowledge the weight of your challenges – Many of us don’t want to admit how hard this kind of parenting is for fear of sounding like we don’t love our children and/or consider them a burden. That is the farthest from the truth as the vast majority of preemie/special needs parents deeply love their children. What I’m speaking about here is the acknowledgment that there are definite layers of extra ‘stuff’ that preemie and special needs parents have to consider/think about every day that never have to cross the mind of the parent of a typically developing child.
Things such as: how to care for your child’s feeding tube or their oxygen apparatus, helping your child manage all of the everyday sensory stimuli (lights, gentle touch, water running, etc) that can easily impair their daily function, having mobility concerns with your child who has cerebral palsy, feeling nervous about yet another surgery or resuscitation attempt for your child in the NICU, trying to find a group of kids (and parents) who would accept your child in a social/playgroup setting and not think their different ability (not disability) as being odd, having to explain to family and friends why they can’t visit you during this winter (i.e. RSV) season because your and your preemie baby are on lock-down at home post-NICU, how to help your nonverbal child to communicate and let his/her needs be known in another way and the list goes on and on.
2) Seek out and accept help – of any kind. This is a hard one for me to swallow as I am definitely more of a giver than a receiver of any type of support. So, I’m saying to myself and to you: Don’t try to be supermom or superdad. It’s exhausting and can wear you out. You’re human – get reprieve any way you can, accept a meal being prepared, use that listening ear and shoulder that was offered, take that afternoon off that your boss suggested, accept that ride to your child’s next appointment, take that $25 your friend slipped in your hand, etc, etc. Help means “to make [something] , more pleasant or bearable [or easier]. This New Year allow yourself to have an easier journey
3) Self-Appreciate – It’s a whole lot easier for us a parents, and as people in general, to focus on and remember the things we feel like we didn’t do right last year. This is wasted energy because what’s done is done but it’s also draining because you’re focusing on things that by nature bring you down. So, how about a little self-appreciation this year, and try spending a little time thinking on the things you’re doing right or feel good about as a parent? No matter how small. Jot them down daily or weekly and put them in a place where you will see them. They will serve as a reminder to yourself of how great you really are. When you appreciate what you’ve written and in turn, appreciate yourself.
Happy, Happy New Year to all preemie and special needs parents. I wish you the best and brightest that 2013 has to offer and am honored to be counted among such a strong yet often-forgotten group of warriors who daily parent special kids in extraordinary ways.