What Not To Say…

One of the blogs I follow is called “Life With Jack”. Jack is a fellow preemie who was born at 23 weeks gestation weighing 1lb 2oz. While his size at birth was similar to our Jack, the difference between a baby born at 23 weeks gestation versus a baby at 31 weeks gestation is enormous. Jack from Life With Jack, faced many more struggles than our Jack and spent over 100 days in the NICU. He has made amazing progress and is continuing to progress as an adorable 2 year old! He also has some wild hair just like our Jack! You can read more about him here Life With Jack

His mom wrote this post around a year ago and I feel compelled to share it. Because of the difference in gestational age and complications, not all of these things apply to my Jack. However, as Jack is now one I am beginning to get some of these questions. Yes, Jack is one and is not yet crawling or eating much. But, that’s okay. We are working hard. However, some people just don’t understand that! These comments mostly come from strangers. I have NOT had anything hurtful come from friends or family. However, I still feel compelled to share another preemie mom’s perspective and in some way, to vent some of my feelings.

Today at the mall, Kendrick was playing in the play area. There were a few babies younger than Jack crawling and even walking. Some of the parents stared at Jack while I had him on my lap and it was obvious he was not doing these things. I got even more odd looks when I asked one of the older children to please not touch Jack. Seriously? Mind you, I had Jack in his car-seat away from everyone at this point and these kids were crawling over to him. I am a complete germaphobe, but hate to shelter Kendrick so much. So, I do occasionally let him play at the mall or other germy areas! 🙂 But, if I ask your child not to touch mine, don’t give me a dirty look!

Anyhow, take this how you please. As I said, this isn’t in response to anyone in particular, just an interesting post. It also puts things in to perspective for me because although Jack has had complications, he has been VERY lucky. There are so many preemies who are much more sick. There are so many children who are not preemies who are much more sick. We are VERY lucky indeed.

What Not to Say

Note: This post was originally published in January 2011 and I continue to update it as I see areas in which to educate. I have been thinking about this post literally for over a year. I have heard some crazy and downright irritating things come out of people’s mouths regarding Jack and having a son like Jack. I know for the most part, people are clueless and are only trying to make some sort of connection to our situation. But, words have POWER and can literally set the tone for days and weeks. So here is my personal list of what not to say to a mom of a preemie or child with special needs:

-Is Jack doing _______ yet? I literally get this question on a weekly basis. It is such a downer of a question for a mother whose child is definitely on his own timeline when it comes to development. And on top of that, I don’t know why our culture is so VERY obsessed with following this very specific chart or guideline for things like rolling over, crawling, walking, talking, etc. People are so competitive. Even with a healthy, full-term child, people can be absolutely ruthless when it comes to comparing their children and who meets a milestone first. I mean, just look at Facebook or go to a play date. The topic of conversation most certainly revolves around what my amazingly brilliant child is doing. “So my child is crawling! Well isn’t Jack around their age? He’s not crawling yet? Oh… well… um… he will get there eventually”. Trust me, I get these sorts of questions constantly from therapists and follow-up clinics and rightly so. But I don’t need a constant barrage and reminder that my son is developing at his own pace from the common layperson.

-Oh my son (or cousin, sister, whoever) was a preemie. At this point I usually ask at what gestation they were born. You’d be surprised at the answers I often hear. “Oh around a month early” and “It was so scary” and then proceed to tell me how horrific it was to have a baby at 36 weeks and spend a couple days in the NICU. Well I don’t know if I really need to explain why this comment is so irritating. Jack spent 100’s of days in the NICU. And here is the truth, you really can’t compare the situation to Jack’s unless the baby was a micro-preemie. Comparing your personal situation is very tricky, so it’s best to tread lightly.

-I know a preemie who is like a NORMAL child now. What is normal? And because Jack has health problems, it makes him like some sort of unfortunate alien? Humans are so cruel to the weak, constantly putting them in a separate class.

-I had a horrible pregnancy. This comment is one of those annoying ones that begs an “oh really, why?” I then normally hear something about how the person was so uncomfortable, had morning sickness and then wasn’t able to breastfeed. Peppered in the conversation are outrageous statements like “I was basically starving my baby because he/she wouldn’t breastfeed.” In my mind, I want to yell out “why didn’t you give the baby some freakin’ formula!” When your child doesn’t eat or have the ability, the whole breastfeeding v. formula debate is pretty much a non-issue and is rather trivial. And when your pregnancy was ended rather abruptly, after months of illness, it’s very hard to relate to someone who had a full-term pregnancy.

-So now that Jack is almost 2, he’s pretty much ok now, right? Really? REALLY? Can I please chalk this up to someone just being a complete idiot? Too harsh? Maybe. But that’s really how I feel sometimes. I spend a whole lot of exhausting time explaining each and every detail of Jack’s health history to people. It’s like they demand I prove X, Y, and Z to them. I get questions like “well I thought you said Jack was eating now?” Do I really need to explain the intricacies of oral trauma and the psychological effects it has? Do I really need to explain why preemie lungs are susceptible to pneumonia and NO, it is not good for Jack’s immune system to get sick now and again! It doesn’t “build up his immunity!” Many babies that are born extremely early, cannot simply “grow out” of their prematurity. There are often long lasting impacts.

-Does Jack have a short life-expectancy? This has to be one of the most hurtful questions one could ask. Does a mother ever want to be asked about the possible death of their child? It is really a sick, twisted question when you think about it. It totally takes curiosity to an inappropriate place and covers what truly matters – the heart and feelings of the person being asked. Just because we have been so close to death’s door with Jack, does not mean we carelessly talk about life-expectancy or even quality of life for that matter.

-Complaining, of any sort. I have seriously debated shutting down my Facebook page because I just can’t stomach the “wah wah wah” complaining status updates I read through. I am especially sensitive to pregnancy related complaining. I seriously debate whether I should comment or not each and every time I read a complaint ridden status update. But I normally talk myself out of it, thinking it’s not worth my time. And definitely please don’t complain in front of me. Please don’t complain about your healthy children, AT ALL. Just don’t do it, because it shows how out of touch one is with reality. It shows that the person has no perspective on life, the frailty of it, or how good one has it (especially in America). It shows how self-absorbed someone is. It is such, such a turn off to me.

-Comments about Jack’s appearance. Here is another area that can be very touchy. Preemies go through many things, medically speaking, that can alter their appearance. For instance, our son has two shunts to regulate his hydrocephalus which was caused by brain hemorrhages on his second day of life. We have actually had people say to us “wow! those shunts are sure big!” Not, not good. Many preemies also have misshapen heads (from being outside the womb too early and various other reasons) that require helmets to reshape their skull structure. And most micropreemies won’t have those pearly white baby teeth because of the intense amount of antibiotics, intravenous nutrition, and liver medication that is used to save their lives. It’s a small price to pay. The eyes are another area where people often feel the need to comment on. Our son has two separate issues going on with his eyes. He has ROP (Retinopathy of Prematurity) and the brain bleed makes his right eye very weak. He will eventually need glasses. We are just thankful he isn’t blind! A lady once exclaimed to me (very loudly) that “he has a dancing eye!” Not, not good. This list could go on and on. Jack has a feeding tube. Try using a feeding tube in public… not fun. I could talk about the need for adaptive equipment and mobility issues. That Jack will probably walk ”funny”. We are just thankful that he MAY be able to walk! People love to comment about appearance. We certainly don’t need someone pointing out any of these things to us! And just look at the picture as the header of this blog. My boy is beautiful.

-Comments about our so-called lack of a social life. This happens more to my husband than me, but we are constantly getting questions about why we aren’t at certain events, happenings, and get-togethers. Being the parent of a child with health problems is very, very time consuming and exhausting. Jack is tube fed, doesn’t have much mobility, has constant therapy, and sprinkled in there is some play-time. It’s not easy for either of us just to drop everything and grab a coffee with a friend. We have to plan it out with Jack’s schedule and allow each other to have enough down-time to get some rest. I don’t think my husband has rested in 2 months. He doesn’t get a break. When someone says we are “stuck up” because we’re never able to hang out, it is really irritating and mean. When someone gives us a hard time for not being able to go out to something, it is hurtful. When someone asks “where’s Jessi and Jack?” when Jon is out alone, it is extra careless! For some reason, people refuse to comprehend that Jack can’t be out in public during cold and flu season, no matter how much we explain things to them. This gets exhausting. We would just love to get out together as a couple, too. It’s hard to find a babysitter that knows how to care for a feeding tube and g-tube emergencies. It is no fun showing up at family-centered events all by our lonesome. We often skip these to be able to spend time together at home. Our lack of a social life is not a reflection on our thoughts or feelings towards you (although in our limited time, we choose to be around positive people), but purely our reality while being Jack’s parents.

-Placing Blame. There are many medical reasons why premature birth happens. Most, if not all, are out of the mother’s control. The only exception I can think of is illegal or overdose of harmful substances (alcohol and drugs). Beyond that, it’s really not up for judgement. I just read tonight on Facebook (yes again, oh the joys of Facebook) where someone was speculating why so many women are having preterm birth. She wondered “if prego mamas are just doing to(sic) much/doing activities that our mom’s wouldn’t have dreamed of doing while they were pregnant.” Can you imagine how I felt when I read this? I dreamed and discussed with my husband every possible (awesome) comeback I could think of. But you know what? It’s not worth it. I just de-friended. Thank goodness for the de-friend. To insinuate that I caused the premature birth of my son because I was “maybe doing too much” is pretty much akin to saying that all us preemie moms almost murdered our own children just by living. And trust me, my four months of bed rest pretty much flies in the face of this so-called “Facebook Friends” assessment.

To end, here are some things you should say:

-How are you doing?

-How is Jack doing?

-Is there anything I can do to help?

-I am praying for you!

I know I could add more to this list, but I just felt an overwhelming sense this morning that I had to share. Please don’t take your words lightly. If I ever say something that is offensive, let me know! I don’t want to remain ignorant to someone’s pain or ways I am furthering their hardship by the words I speak.

May the words of my mouth and the meditation of my heart be pleasing in your sight, O LORD, my Rock and my Redeemer. Psalm 19:14

Advertisements

One thought on “What Not To Say…

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s