The past year has been one of reflection for me. I often think about where we were a year ago, two years ago, three years ago, etc. A year ago we were celebrating a holiday season without hospitalizations. Two years ago we had just gotten out of the hospital and we were scheduling a whole batch of procedures (which landed us in the hospital for a few days). Three years ago we had the first inklings that something might be up with the baby I was carrying, and I was getting ready to undergo a whole battery of tests (after which they told me everything was fine).
While reflecting on the journey our family has been on is useful and healing, it’s not the whole picture for me. I have also been reflecting on how I have changed as a person. I often think about how parenthood has changed me, and how being a parent to a special needs child has truly altered my perspectives on many things.
I am less judgemental of other parents
Before becoming a parent, my list of “I would never do that” was LONG. I had strong views on how to feed kids, how to handle sleep, and how to deal with other behavioral issues. Yes, yes, chuckle now. I find it funny too. At times, when I have been frustrated beyond reason with Lyra, I have thought, “karma’s a bitch.” I have spent unreasonable amounts of money on food because she seemed to like them one time, only to have her never eat it again. While I was (still kind of am) a believer in the “cry it out” method for sleep training… I still rock Lyra to sleep. I am much more willing to recognize that sometimes you have to meet your child where they are. Sometimes sticking to a certain method will do more harm than good for a certain child.
Luckily we haven’t had too many challenges when it comes to behaviour, but I have met so many parents where that is their primary obstacle. These are good, well meaning, hard working, loving, tough, parents. They do everything they can to prevent meltdowns, temper tantrums, screaming fits, and other outbursts in public. They have worked with professionals and they are doing their best. Sometimes the parents might not be at their best in that exact moment, but no one is perfect every minute of the day. Before Lyra, I would have judged the parents when a child is acting out. Now, I see the fear (of judgement), exasperation, frustration, and sadness in their eyes. I feel compassion for them now. Sometimes, you have to go to the grocery store, and you have to bring your child. They can’t live in a bubble. Everyone has to leave the house. I just want to give them a hug.
Before having Lyra I was a bit of a pushover and often called a drama queen. On day 10 of Lyra’s life, I learned how to push back. Watching your newborn turn blue because no one would listen to you will do that. I learned the difference between being a drama queen and being an advocate. I also learned that, when my life was truly in crisis, I was able to calmly and rationally make very tough decisions very quickly. Sure, I fell apart from time to time. All of my close friends and family members have received tearful phone calls at some point. But, when it mattered, I was calm. I knew that freaking out and melting down wouldn’t help anyone, especially my daughter.
I am less tolerant
Now, I am not sure this is a positive quality, but it’s an honest assessment. I often say that, since having Lyra, I need people either step up, or step out. I’m okay with whatever people have decided, but I don’t have time to deal with their struggles with my child being special needs. While I have always had little patience with incompetence, I now have zero patience for it. If you can’t do your job, or if you can’t help me, I need to move on to someone who can. I also don’t have time for friendships that take a lot of work. I happy make time for those who make time for me, even if it is just a simple text. However, if you don’t have time, that’s fine. I feel little loss for the people who have drifted away since having my daughter. For those who have embraced us and our journey, your presence in our lives has made it so much richer and we are so grateful.
I also don’t have time for people who don’t try to understand Lyra and the journey that we are on. Anyone who reads this blog, or knows me, understands that I try to educate and explain things all of the time. I am open to questions and I happily answer them. However, when people don’t take the time to listen to my explanations, or simply refuse to except that Lyra will never be an average kid…. ain’t nobody got time for that. If you can’t enjoy her for who she is, if you can’t get over the fact that she is mentally and physically disabled, if you can’t except that no leap of science will ever “fix” her… I don’t have time or energy for you. I just don’t.
I have learned where to look for joy
My whole life I felt a little unsettled. I was always looking for a time or place where I felt, “this is perfect and I am truly happy.” I didn’t always know where to look for joy in my life. This is probably part of the reason why I moved so frequently. I always thought somewhere else might be better. However, I have learned that joy is a little spark that flares brightly, like a firefly. That little moment stands out the most and, if you focus on it, it will be the thing you carry with you the longest. But, if you aren’t looking for it, you’ll miss it. It will fly right past you. Lyra’s first year was really tough, but if you ask me what I remember most about that year, the negative things aren’t what I will state first. The little moments of joy and laughter are what always stand out to me. It’s Lyra trying to nurse on Mark’s nose, her snuggled up with her grandma, or the look on her aunt’s face the first time she visited. It’s laughing with family over a beer they snuck into the hospital room, or watching Lyra run around the halls of the 8th floor in her new walker. Even though life was harder than it has ever been, I remember so many little moments of joy. While this life is far from the one I envisioned as a parent, it’s a good life.
I am learning to embrace who I am physically
I have never been all that comfortable in my own skin. I always wanted to be thinner, taller, prettier…. mostly thinner. I have spent DECADES basically hating myself when I looked in the mirror, or looking at pictures of myself. Since having my second shoulder reconstruction at age 23, I have honestly been in a bit of a downward spiral. That spiral turned into a bit of a free fall when I blew out my ACL, had surgery, got pregnant half way through rehabing it, wasn’t able to work out much during pregnancy, and then basically spent a year eating hopital and fast food. Between sleep deprivation, doctor’s appointments, therapy appointments, and just managing Lyra’s care; consistency in working out has been a struggle.
Finally, I got to the point about 6 months ago where I just decided that I didn’t have the energy to hate myself anymore. I am very overweight. I basically weigh as much now as I did the day before I gave birth. I don’t like it, but I accept it. I also don’t think less of myself as a person by the size of pants I put on every morning. Believe it or not, it’s much easier to motivate yourself to workout when you treat the workout as a reward (free time to myself!) vs. a punishment for eating something “bad”. It’s also easier to eat healthier when you pick something because it makes your body feel food, but you also don’t give yourself a guilt trip for having the occasional indulgence.
Am I perfect at this? HELL NO. Like I said, I am trying to undo DECADES of negative thinking about myself. There are still very few recent pictures of me that I allow on social media. But this shift in how I view/value myself is import for me, my daughter, and even my nieces. The last thing that I want is for any of them to look in the mirror, and make a value judgement about their worth as a person based on their reflection. I don’t want Lyra to ever be ashamed of her feeding tube button or her surgery scars. Those things saved her life and made her strong. They are not “something wrong”, they gave her an opportunity.
I knew becoming a parent would change me. I had no idea how dramatic that change would be. Have all of the changes been positive? Maybe not. But I feel that the positive changes far outweigh the negative ones. Parenthood is a long road and an epic journey for all of us, and I don’t think it ever goes to plan. But it’s worth it.
Me, in bed, as soon as I finished writing this point.
2 thoughts on “How I have changed”
Another wonderful post. Thank you for taking the time to share your thoughts, happy, sad, and just living each day as it comes. You all are wonderful.OOO’s, Ann
Thank you for your openness. I too am a mother of a special needs young man. While Michael is now 29, the first 3 years were rough for me. Everyone told me he would catch up. By that time he had come to a halt in his achievements. Well I wanted to know why he was the way he was? So off I went talking to doctors, therapists anyone who would listen.
So blood was sent off. He spent 3 days in hospital. At that time I was told ” Michael will develop at a quarter of the rate of a normal child. He will have the mentality of a 6 year old when he is an adult. You can leave the hospital tomorrow or Friday.
It took everything I had not to deck that doctor. Later that night I called my dad. He told me something profound “Don’t worry about the things he can’t do just take the things he can do and expand on that ”
I have never looked back. While it hasn’t always been easy…oh wow it has been worth it!
You’ve got this!!! I’m not far away if you need a shoulder.