I Do Not like Being a Special Needs Parent and That’s OK
I Do Not like Being a Special Needs Parent and That’s OK
This morning was just like every other Monday morning. I went into my daughter’s room to wake her up for school. I unzipped the sides of her tent and said, “Good morning sweetie. Time for school.” I reached down to lift my little princess out of bed and she so lovingly stuck her fingers in my eye and scratched all the way down my cheek. Ah, how I love a nice eye gouge in the morning. She then, so sweetly took a fistful of my hair and proceeded to try to rip it from my scalp until I could lay her down and untangle her fingers. Then, I got my kindergartner ready for school by changing her, brushing her teeth, dressing her, putting on her glasses, brushing her hair and attempting to style it while she swung her head side to side. I then carried her down the stairs and put her in her chair to feed her for the next 50 minutes while she tried to knock all the food out of my hands. We ran out of time as we usually do when it comes to meals that are on a time clock. Next, I had to dress her in an extra 5 pounds of snow gear, carry her down a second flight of stairs to strap her into her wheelchair in the freezing garage. I handed her off to the bus driver in tears. I don’t really feel weird crying in front of people anymore. Apparently this is just who I am now. I cry at inopportune times just to make feel people feel super uncomfortable. At least she didn’t witness me yelling at the Tupperware lid that wouldn’t come off of my lunch. I feel guilty saying it, but once that bus pulls away, I feel so much relief.
My thoughts about being a special needs parent
I do not like being a special needs parent. I would even go as far as to say that I detest it. It is a phrase that is only uttered, if spoken at all, in hushed tones throughout the special needs community. There is a mentality in much of the community that we are to be grateful for the life that we and our children have been dealt. We should thank our lucky stars that we get this kind of enrichment in our lives. We can occasionally, very occasionally, speak of hardships but we are to never give the impression that we wish our lives were anything other than they are. We are supposed to advocate for our children and fight for treatments and therapies. We are supposed to devote our lives to finding a cure, while in the same breath saying that we wouldn’t want our child any other way.
We are supposed to say that we are blessed to be on this journey. Do not say, not ever, that you do not like “Holland”.
For the record, I think Welcome to Holland is so beautifully written and if you are in “Holland” and truly have that same perspective, I commend you on being a much better person than me. I on the other hand am not pleased with being stuck in Holland when I bought a ticket to Italy. All of my friends and family are in Italy and I am all over here like, “Enjoy your lasagna and wine guys! I will just be over here eating snert.” For those of you who aren’t as knowledgeable in Dutch cuisine, or haven’t googled it today like I have, snert is a thick pea soup. Mmmmm. Why again am I supposed to be so excited to be in “Holland” when I was supposed to be in Italy? Do I have to be bitter and angry all the time? No. But do I have to pretend that this is better than where I was supposed to be?
Before I receive a verbal lashing from the cheap seats, I absolutely love and adore my daughter. She is beautiful and sweet and pure. She knows not of malice or vengefulness. Every day, she endures. She is love embodied inside of a tiny person. And she fights with a strength beyond herself. But she also suffers. She has physical pain and she cannot ask for help. She has emotional pain, and she cannot talk through it. She has anger and she cannot express it. She has stories and she cannot speak them. She wants to run but cannot stand. She is imprisoned in a body that does not function properly. She is trapped inside herself. And our family is trapped on the other side of the glass, the glass that divides the life of a special needs family from a typical family.
We can see what it is like on the other side, remember it, and watch as our friends and families move along from one stage of life to the next. It is painful. I watch with my hands pressed against the glass as children I know grow more independent while my child just grows bigger. Sometimes you want to just turn your back to the glass and isolate. Other times, you pound your fists on the glass and beg for someone to stop to see life on this side. And we pray for someone to tell us that we are good enough. Because that is another thing about being on this side of the glass, you often think that you could do more, sacrifice more, be more for your child.
I love and adore my child, but I do not like the disease that has stolen so much from her and my family. So no, I do not like being a special needs parent. And if I were given the option to change everything, for her sake and ours, I would. And no, I do not think that is selfish.
Pitt Hopkins Syndrome
My daughter Finley Kathleen Age 5, is diagnosed with Pitt Hopkins Syndrome. (This leaves Finley nonverbal. She is currently working on building strength in her core and legs and are expecting her to walk in her lifetime).
Find out more info about Pitt Hopkins Syndrome visit: pitthopkins.org
Related: 2019 Cover Winner: Finley & Kimberly
Kimberly Sandiford is a wife and mother of three daughters. She and her family reside in Prior Lake, Minnesota.She can be found at bittersweetawakenings.com