When she was born, everything seemed fine. At the time. Looking back, I can see now that there were little signs. I will never forget one thing that happened when a nurse had come into our hospital room the day after she was born. I was sitting in bed holding Raya on my lap and she was peacefully zonked out. The nurse accidentally dropped a clipboard on the counter, which was about 20 feet away from us, and it made a noise. Not too loud, but it clattered against the countertop. Raya jumped like I've never seen a less-than-24-hour-old infant jump before. The nurse saw it happen out of the corner of her eye from clear across the room and apologized for startling Raya. We both commented that we'd never seen a brand new baby jump like that before. It didn't seem like a big deal then but now that we've seen a greater extent to her sensory processing difficulties, I think that was just the beginning.
Then there was her immediately obvious torticollis and plagiocephaly. Girlfriend had been using one side of my pelvis as a pillow for at least 3 months and her neck & head paid the price for it. I crossed my fingers that it would correct itself once she had a chance to stretch out. (pausing for chuckles again...)
Then there was the spitting up. So. Much. Spitting. Up. It started as soon as the eating started. Some of it was funky. At 2 days old, she was spitting up mucus along with milk. At 4 days old, she lost her voice. I vaguely remember having to sit upright on the couch with her most of the night every night that first week. I think I only remember it because of the time that my mom heard Raya crying and took a shift so I could go back to sleep for a while. It's hard to remember all of those details when the ones I have pictures of are so nice and sweet. You can't use a camera at 3am when you're trying to keep a screaming baby from waking everybody else up though.
|She was a few days old. I was still blissfully clueless.|
The prophet Isaiah said, "For precept must be upon precept, precept upon precept; line upon line, line upon line; here a little, and there a little:" (Isaiah 28:10). And that is how this story has unfolded. A few tests here, another little diagnosis there, a trial of a new medication, rearrangement of a feeding schedule, lather, rinse, repeat. Little by little for the last 3 years, we have faced new challenges and dealt with them the best that we could. We've set modest goals that we had no idea if we'd meet. We've had many frustrations, disappointments, and exciting times. We've thought we were over the worst of it only to find that the mountain just keeps getting taller. The deepest recurring theme throughout all of it has been that I am not in control and I can't do this on my own. If it takes a village to raise a typical child, then it takes a whole freaking society to raise a child with complex medical issues.
Thankfully, she was born in a place where we have had ready access to a plethora of pediatric specialists with decades of experience and knowledge, but also with the humility to refer a baby that was out of their league to someone they thought could help. We've also been blessed with the help of loving friends and family when we've needed it, and the understanding and support of others who are walking similar paths. (because really, who ELSE would want to listen to stories about puke and your favorite new use for medical tape)
Because of the in-your-face nature of Raya's high-maintenance medical issues, it's been hard to focus on anything else for pretty much the last 3 years. Of course I would never want her to feel bad about that, it's just the way it is. Before Raya was born, I considered myself a fairly organized person. I liked for everything in life to be packaged up in nice, neat little bundles. As we added more and more specialists and appointments to the list, all of that went out the window and I felt completely out of control of anything and everything. Life had been fairly balanced and then it got completely and totally out of balance. I've spent a lot of time trying not to allow guilt and self-doubt to creep in as we've struggled to get things somewhat back in balance.
As Raya's birthday approached, I spent a lot of time thinking about how to put into words the ways that Raya has changed me as a person and as a mother. Some of that is impossible to put into words because there just are none. I was one of those people who never expected to have a child with out-of-the-ordinary medical problems. I had friends who had gone through really difficult trials with the health of their children but after having 3 kids with not a single broken bone, emergency room visit, hospitalization, or anything like that, I didn't see it coming with Raya. I assumed that since we'd made it through 3 with flying colors, the next one would be fine too. Even as we were in the thick of it, it still didn't really sink in that I had a child with special needs. I kept expecting things to be over once the medical mysteries had been solved and she started eating. I wondered how much of "Raya" was being overshadowed by the physical discomforts she was experiencing, the completely irregular schedule dictated by all her medical appointments, and the alternative route by which food enters her body. As it turns out, what we see is pretty much what we get. :) Raya is a little ball of spunk wrapped in pure energy and deep fried in personality.
The last 3 years have taught me that there are many, many, MANY different kinds of patience and I must need a lot of work developing all of them. I stopped praying for patience a long time ago because God kept giving me opportunities to develop it. I am much more mellow than I was 3 years ago. The things that I used to get worked up over and the drama that I used to find interesting and allow myself to get caught up in no longer have a place in my life. It's actually rather liberating to fully comprehend that what so-and-so said about what their best friend's ex-brother-in-law did last weekend has no importance in the grand scheme of things. On the day of Raya's preschool evaluation, (which was pretty much a horrible day for me) I had a little bit of an epiphany. At the time, there was a bit of drama going on with some people close to me and I had been rather caught up in it. Suddenly, when faced with the possibility of Raya not being approved for a program that I felt she desperately needed in order to be successful in her school years, I realized that I DID.NOT.CARE about the drama. I honestly didn't care because what was going on with my sweet girl was what REALLY mattered to me. The drama would come and go, but this was a pivotal moment that would affect her future, and THAT was worthy of my time, not the drama.
I have learned to look at other people with much softer eyes. I remember many times during the months that Raya had her plagiocephaly helmet on her head and an NG tube on her face, feeling like people were staring at her. Every time I noticed somebody looking at her, I couldn't help but wonder if they were looking at her thinking, "Oh, what a cute baby!" or "Hmmm I wonder what's wrong with that baby." I was asked the most ridiculous questions, like if she was wearing the helmet because she fell down a lot or because I had dropped her on her head. Kids would stare and loudly ask their parents what was wrong with that baby. I didn't mind that as much as I minded the parents shushing their kids and looking away awkwardly, as if Raya's conditions were something I should be ashamed of. I never felt like I was negative towards people who looked "different" before, but once I had my own little "different" person, I gained a whole new level of love and understanding. It's HARD to have people stare at your child that way. Not because you're embarrassed by the staring, but because you feel like the person is judging your child as being lesser than someone that looks "normal".
Now that Raya is getting older, I have found myself many times recently feeling humbled by the stares of people who don't understand that her meltdowns don't mean that she's just being a naughty kid and I'm a bad mother for raising a kid that would act that way. That has made me look at other parents with a lot less judgement. I KNOW that I am not seeing the whole picture and that it's really none of my business anyway, and that's how I hope that other people will look at me when my sweet girl is screaming in the aisles of the grocery store or I'm feeding her marshmallows and letting her drink water out of a giant syringe when we go out to dinner and the rest of us are eating real food. All of us parents have the same basic goal in life: raise our kids to be good people and not screw them up too badly in the process. The last thing we need is for other people to come along and criticize us when we're all so good at criticizing ourselves anyway.
I was 27 when Raya was born and I felt like a grown-up then, but I feel like in the last 3 years, I've really had to do some growing up. I've had to learn, sometimes the hard way, that it's okay to NOT always be nice and sometimes you DO have to get tough and be the squeaky wheel even if it's uncomfortable. I've also learned that it's OKAY to be mad and pout and stomp my feet a little bit and that I can do that without taking it out on anybody else, even the people (usually insurance companies/medical providers) who often inspire the pouting and stomping of feet. It's not okay to be mean to people or lash out while being mad and pouting and stomping feet, but it's perfectly okay to feel whatever feelings are evoked by what you're seeing and going through. This life is full of frustrating situations created by the uncertainties, general "busyness" of a full schedule of appointments, and much too frequent miscommunications between different entities involved in healthcare. Keeping all that frustration inside will eat you alive, so sometimes you just have to close your bedroom door and throw a big fat messy-face, crying, angry TANTRUM for a little while before you re-join society.
The last 3 years have taught me to be more appreciative of everything in life, including life itself. Like I think a lot of people are, I was blissfully oblivious to the magnitude of heartbreak that goes on within the walls of a children's hospital but once you've seen it, you can't forget it. Once you've seen a sobbing group of people walk out of the NICU for the last time, or stopped in the long hospital corridor to hug a sweet little mom with tears running down her cheeks and a NICU parent wristband on her arm just because she looks like she could use a hug, or overheard the words "we're just not sure what else we can do at this point," or heard a doctor explain to a 15 year old boy that he will be wearing a colostomy bag for the next 1-2 years, or looked around the surgery waiting room at the tired and worried faces of other parents, or seen a child sitting alone in their hospital room all day because their parents are working extra hours to help pay for medical bills, or even just seen a sweet little baby connected to dozens of wires and tubes, you can't forget that and it WILL change you. Fresh air, freedom, a comfortable bed, being the person in charge of my children, home-cooked food, carpet, my family, my own bathroom, my own couch, my own house, a washer & dryer, a schedule not dictated by appointments, control over the thermostat, peace and quiet (occasionally), and privacy are things that I thought I appreciated before but never completely valued until I realized how many parents spend days, weeks and months without them while their children are inpatient. Gratitude for each and every little thing in my life is something that I have gained in the last 3 years, and awareness that I can't even comprehend everything I am grateful for.
Seeing a baby reach developmental milestones like, oh, I don't know... EATING, is another thing that I've come to appreciate. Those milestones are so much sweeter when you realize just how much harder a child has to work for them than a typically developing child. I've also gained some humility. A lot of it, actually. At risk of sounding snobby and having this come out wrong, I'm saying it anyway. Growing up, school came really easy for me. The hardest subject for me was math but I was still in the accelerated math classes and pulled As & Bs in them. I was in the gifted program. I always assumed that my kids would be smart & school would be easy for them like it had been for me. It has been humbling to realize that there is nothing I can do to keep my kids from having struggles in their own areas. I definitely had areas that I struggled with as a kid, they just didn't happen to be academics. The part of this that has been really humbling in the last couple months is having professionals evaluate Raya and show me on paper where her greatest deficits are, and seeing that they are in areas that SHOULD just come naturally to everybody. They're areas that will make life in general a little more difficult for her. I can't help but wonder how the academics will fit in when she's struggling to even cope with being in a classroom or one day realizes she's the only kid in her class that still wears diapers. THAT is hard to take as a mother, and those are the feelings that I just have to turn over to God and trust that He will help me know how to best support her. I've had to learn to put my trust in Him on a whole new level since Raya was born and acknowledge that I really am nothing without His guidance and blessings.
To my sweet Raya on her 3rd birthday:
Raya, you are one of the most incredible things that has ever happened to me. Our family would be so incomplete without your energy and personality. You have made me learn to let go of control and let things be as they're going to be, and that's a lesson that took me 30 years to learn. I look at the world so differently than I did before you were born and better understand my own purpose in life because of what I have gone through with you and watched you go through. Many times, I've wished that I could make all of your medical struggles go away, but I know that neither one of us (none of us, really) would be the same without them, so instead I do my best to embrace them and learn what I can from them. My hope for you is that because of what you go through in your life, you will also learn to embrace your challenges and have the desire to be a stronger and better person because of them. I hope that you will grow up with a special compassion for others like you and teach your peers how to treat you and your friends who have special needs. Know that just because your needs are "special," that does not mean that there is anything wrong with you. God made you the way he did on purpose and FOR a purpose, and I wouldn't have you any other way. We are in this together, and no matter what, I will never "give up on us." I'm pretty sure Jason Mraz wrote that song just for me so that on the hard days, I can be reminded of the big picture and that you are SO worth every tear I've shed in the process these past 3 years. You are AMAZING, and anybody who ever tries to tell you otherwise is not worth listening to.
I'd be lying if I said I wasn't a little nervous about what the next year could bring, but I'm excited to face it with you and see you grow and develop in your 4th year.
|4 months old|
|3 years old|