Being the parent of a preemie - especially a special needs preemie - is definitely an adventure. Every day is different. Every day we face challenges. There are things about this journey that are great. There are things that are difficult. There are things that are just plain hard.
A few months ago, I shared with some friends something I'd written about what my life is like parenting a special needs preemie. I would like to share this tonight.
THE THINGS I WISH YOU KNEW
1. Having a preemie is one of the scariest, hardest, things I've ever had to live through. Every day for weeks, we wondered if our baby would survive. We watched him struggle through illnesses, setbacks, tests, and complications that you probably can't even begin to imagine. He has experienced more in his first year than most people will experience in a lifetime.
2. Most of the time, I do ok with everything we've experienced. A lot of that is because I'm constantly busy doing something to take care of X: feedings, diapers, playing, bath time, various therapies, stretches and massage to keep his muscles loose, and all the while still trying to let him just be a little boy. The truth is, I have bad days too. There are days where everything brings tears to my eyes. There are days I worry for my little guy and hurt for him. There are days I don't want to get out of bed because I'm so exhausted from taking care of his needs around the clock...but I have to because he needs me.
3. As a result of everything we experienced, I've been diagnosed with post-traumatic stress disorder. My need to keep X home is only partly to protect him. Yes, part of the reason has to do with keeping him from contracting various - and countless - illnesses. I have to worry constantly about him getting sick because what can be a minor cold to another child can hospitalize or even kill X. The main reason I stay home, however, is because there are certain sounds, sights and smells that trigger stress responses for me. For example: I still to this day cannot see or hear LifeFlight without starting to shake and cry. I can't walk into the hospital where he spent months in the NICU without my heart racing and a huge knot forming in my stomach that makes me nauseous. I can't help these responses. I don't tend to talk about them because I don't want to be seen as damaged or sick or wrong. I am none of those things. I am a warrior who has been through hell with my precious child and I carry the battle scars of that experience.
4. Sometimes...I just need to talk about my experiences. I don't want you to try to "fix" it for me. I already know you can't. You haven't walked in my shoes and the experiences we've been through simply cannot be fixed. That's ok. But please...please...don't tell me you understand if you haven't lived a life similar to mine. Unless you have, you can't begin to understand or even imagine what this journey is like. I don't expect you to. It's ok that you don't understand. All I want is for you to listen when I need to talk and not judge how I feel or what I have to say.
5. Having a preemie means I have been robbed of things you probably take for granted: photos of my growing baby belly, a baby shower, using that birth plan I'd so carefully written up, being able to hold my baby immediately, family celebrations of baby, etc. Even though I'm so incredibly thankful that X simply survived, there's still a part of me that will always be a little sad about not being able to have all the "normal" things I had hoped for.
6. Just because my journey was different than yours doesn't mean that I'm not happy for you when your plans work out the way you hope and dream they will. I'm HAPPY for you! I'm happy you get to experience things I never got. I want to celebrate with you and be part of your milestones with you. Please don't be afraid to share them with me! I know that you don't always know what to say, but please know that I long to be part of your happy times. If I can't handle it right then, I'll let you know...but please don't leave me out.
7. We are ALWAYS busy. Incredibly, unbelievably busy. Not only are we juggling regular toddler care, but we have therapy several days a week and several additional doctors visits we go to every month. We're dealing with paperwork, insurance, coordinating with various providers, traveling to and from all our appointments, following up on various tasks and needs, keeping our basic housework caught up, and giving X every opportunity to just be a little boy that we can. He needs to have as normal of a life as we can possibly give him. We need that too. Sometimes, despite our best efforts, time just gets away from us. We aren't trying to ignore you. We desperately need to know that you haven't forgotten us. Send us a little card in the mail. Send us an email or text message. Just please let us know you remember us.
8. Even though X is no longer in the hospital, his needs take up the majority of our time around the clock. We still need help. We probably need it now more than we did while he was in the NICU. If you ask us what we need, we really may not know. We rarely stop to think, about it. As long as you haven't been sick, we won't refuse your help. Be specific in your offer to help because we really may not know what we need done at that moment. Mow our yard. Help us with dishes or laundry. Offer to run errands for us so we don't have to try to figure out how and when one of us can get out without risking X getting sick. Make us dinner and bring it over because we rarely have time to think about WHAT to make let alone trying to figure out WHEN to make it. Mop our floors. Vacuum or dust for us. Take the dogs on walks. There's a lot that needs to be done that we run out of time and energy to do.
9. I've been asked if X is sick or "what's wrong with him" more times than I can count. Please know that X is NOT sick. He's very healthy. Nothing is wrong with him. His body just does things differently than yours or mine because of things that are outside of his control. You cannot catch what he has. He just has challenges in life as we all do. We're working on and through them together. It's a process. A journey. Nothing more.
10. It's ok to ask questions about X's unique traits, his medical needs, his prognosis..anything you want to know. Some of the things he has to work through are visible and obvious. Some aren't. I love it when you ask questions! X needs more people in his life who really understand him and his needs.
11. Please don't point, stare or whisper about X and his needs. You might think I don't notice, but I do. X is starting to notice too. It hurts my feelings and although it may not hurt X's feelings right now, it will eventually. I'd much rather you be direct and ask questions. I don't mind helping you understand X. I'm just grateful you took the time to ask!
12, On that same note - PLEASE, don't stop your children from asking questions, or reprimand them when they do! They don't mean any harm. They aren't offending me. They're just naturally curious. I wish more adults would ask questions. Look at it like this: I'd rather they ask now and learn about X and his needs and differences while they genuinely want to know. Why? Because your child(ren) are X's peers. They are the ones he'll be in school with, attending church with, going to events with. etc. I'd rather help them understand X now than them be afraid of him or mean to him later because they just don't understand.
I bring this point up because of an experience we had. Over the summer, X and I were at a Mommy & Me story time. A little boy, about 3 years old, came up and asked me why X's eyes are crossed (again, something we'll talk about later). His mother immediately got this horrified expression on her face, rushed over and started to reprimand him. I stopped her and asked very nicely why she was so bothered by her son's questions.. She said something along the lines of she didn't think it was polite for him to ask and she didn't want me to be upset. I explained to her exactly what I said previously: Her son was one of X's peers and helping him understand X now while he genuinely wanted to know was better than waiting until he was afraid of X. I also explained to her that I wasn't upset or offended; in fact, I was grateful that he had come up to ask and wasn't afraid to be near X. After that, she and her little boy sat with us at story time. Her little boy would stroke X's hair every day while telling him hi and bye. X LOVED it! They became good friends over the weeks we went to story time. Hopefully, that little boy also learned a little bit about compassion and looking past differences to see the person behind them.
13. Having a special needs child means that every hope and dream I had about what X would become or who he would be has changed. My hopes and dreams for him aren't gone; they're just different. I've had time to adjust to life with a special needs child. In many ways, it's a blessing. X having special needs has allowed me to take a step back and enjoy little things. To X, little things are big things. I appreciate the little things so much more now. I also know that you may not have had time to adjust to his special needs. It's ok. I don't expect you to adjust the same way or at the same level. This is our journey to take together; not yours. It really is ok. :)
14. I wish I could help you understand how desperately part of me wishes X's life was easy. I wish he could do all the "normal" stuff other babies and toddlers do at the times they usually do them. The fact is he just can't. But, the only thing I ever see about X is that he's perfect. I could give you a list of all the "stuff" from his medical charts, but "stuff" is exactly what it is. I often picture little yellow, sticky notes all over X. Each one has a different diagnosis written on it. Every day, in my mind, I take every note off, tear them up and throw them away. They do not define.him. He is X; not a diagnosis. All I want is for you to see what I see; I want you to see X. I want you to know the person I know: He's gentle. He's happy. He's kind. He has a great deal of empathy. He's silly. He loves to laugh. He has a wonderful sense of humor. He loves his pets. He loves the color red. He likes to look at picture books. He enjoys talking to Grandma and Grandpa on Skype. He loves avocado. He dislikes sweet foods. He loves big trucks. He hates crowds and noisy environments. He loves Spider-Man. His favorite animal is a giraffe. He's a little boy. THAT is the X wish you could see.
15. I am no longer the person I used to be. Having a preemie..a special needs child...has changed me forever. You need to know that my life will never return to the "normal" it used to be. Please don't be sorry that life threw me a curveball. You see, I love X. I love every unique trait and need he has. They're part of him. To not love them would be not loving X and that simply isn't possible. Yes, most of all, please don't be sorry. I'm not! :)
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