A Special Life: Being Mom
I felt like I couldn’t breathe. It was as if my body had to be moving to try and hold in the tears. I waited for the nurse to call my name and as I waited, I walked to the water fountain, I chewed gum, I ran my hands through my hair, I crossed and uncrossed my legs, and I tried not to let the tears explode and wrack my body. I wouldn’t be gone from my baby long, but all I could think of, was if she would be okay until I got home. The nurse called my name. I sat in the room and did the same thing for ten more minutes until the doctor finally came in, “Hi Holly, what can I help you with today?” He probably regretted that as soon as he finished asking it. I didn’t just cry — crying is simple and silent. I sobbed, gut-wrenching, and soul-cleansing tears. Then I let it all out.
“I have a baby that could die anytime. I don’t have a diagnosis for her. I was told a few months ago that she could live days, weeks, or years. She cries all the time and wants me to hold her all day long. She has sleep apnea and I can’t sleep at night because I’m afraid she won’t wake up if I do. I sit in appointments with her doctors, and I don’t understand most of the medical language. What I do understand is that there is no cure and this will only get worse — I feel like my panic is going to overtake me before I can get any words out. I quite literally feel like I need to escape when I’m in the room with her doctors. We have three therapies a week, some multiple times a week. They tell me how important it is we practice head control. Her head is so wobbly but I will it to stay up longer. They tell me how important it is that she continues trying to learn to eat baby food. We try several times a day and she chokes then throws it up. I cling to her and I’m scared all the time of losing her.” This family doctor who had just met me for the first time and who happened to be the first person other than my husband I had ever told about my crippling anxiety, was so kind. He probably wanted to call the guys with straight-jackets out to come get me but instead he offered empathy. He told me that he can’t imagine anyone in my situation not being depressed and anxious. Then, he said he could help.
That day is so vivid in my mind I feel like I can taste the water from the fountain when I write about it. It was one of the most vulnerable and terrifying things I’ve ever done…until now. Describing the last decade of my life is really hard. I’m by nature a “take things as they come, smile, and keep it to yourself” kind of person. I try not to focus on the bad but tell myself to be grateful for what I do have. I still try to enjoy all of the good moments, but I believe it benefits all of us to be real with each other. I want to show the good and bad— the truth. I have lots of good moments all over social media, now I want to show you everything in between. As you can see, I didn’t exactly grasp this special needs mom thing from the beginning. I struggled to cope with my new reality. I remember someone at the hospital telling me when Brinley was six months old that they have a great support group for families of kids who are terminally ill. I didn’t understand why they wanted to tell me about it. Then I realized my child is terminally ill, and then I cried.
When you first give birth to a healthy child your life is forever changed. You love that baby so fiercely that there is nothing you wouldn’t do to protect her. When you have a special needs child that all-encompassing love is still there, but it’s magnified because unlike other children this baby never gets a voice. This child grows but doesn’t mature, ages but never separates, and is forever absolutely dependent on you. Parenthood is an immense responsibility but being a special needs parent means you are their lifeline — it’s as if the chord was never cut. I can’t even recall the number of times I’ve had to make life or death decisions for Brinley. I have to be her voice when she can’t tell us what hurts. I have to be her advocate when a doctor doesn’t believe something is wrong. If she can’t cough I am the one who helps her clear her airway. When her stomach is hurting because her GI system has stopped working (again) I clean up her vomit (or diaper). During an emergency, I call 911, and I’m in the ambulance with her. When there’s a hospital stay I’m by her side. We go through so much that our lives become completely intertwined — you don’t know one without the other.
My entire life revolves around caring for Brinley. The thought of losing her terrifies me not only because of how much I love her but also a part of myself will leave with her. I don’t know who I am without her. I am terrified every time she gets sick that this could be “the one.” The sickness that takes her from me. I have known since Brinley was six months old that one day I will have to bury her. That most unnatural thing for a parent to do I know will be my burden one day. Whenever I’m at church or at the grocery store, and I see someone coughing or other signs of being sick, I get on high alert. What if I get sick or my son or husband and we give it to Brinley? You see Brinley doesn’t just get colds. She goes to the hospital. She’s in the ICU with pneumonia, another scar on her weak lungs, if she survives. This may sound a bit dramatic, but I have held Brinley in my arms while a breathing tube is being placed, and through my sobs begged her to fight and stay with us, because of a germ she picked up that led to pneumonia. [Side note: next time you send your kids to school sick or go to church sick think about the germs that can be spread to siblings or parents of these special needs kids.] She is the bravest and toughest person I know. I’ve seen her fight so hard to overcome injuries and illnesses that she should not have survived. I wish I could give her an easier life with more comfort and fun and less pain and boredom. The amazing thing about this beautiful little girl is she smiles through it all. She screams, cries, fights, and then smiles.
There are so many challenges. I mean — I can’t realistically even put into words the depth of the obstacles we face constantly. Each day, is a new puzzle to be solved and each year there are new problems that arise. Four years ago, we had to get a wheelchair van to transport Brinley because she was too big for her rear facing car seat. Two years ago we were able to finally get nursing overnight. Up until this point I was waking up with her anywhere from 2 to 10 times a night. We were unable to have her on bipap (I did need to sleep at some point during the night) until we had a nurse every night that could work with her on becoming comfortable with a mask on throughout the night. Until a year ago we were still carrying her up and down the stairs everyday because all of our bedrooms were upstairs. We moved into a new home that allowed her bedroom and ours to be on the main floor.
Then, there are the small things like going to the grocery store. I can’t really go to the grocery store with Brinley unless I am only getting one or two things, and if that’s all I’m getting it’s definitely not worth the work and stress. Taking Brinley anywhere means having an oxygen tank and making a close estimate on how much oxygen she will need for the journey. I also have to pack a bag with diapers, wipes, a towel to catch vomit, supplies to replace a feeding tube if it comes out (Yes, that has happened. We went to the park for a quick trip during the summer and as I rolled her out of the van her feeding tube which should be inside her stomach was hanging out. Now we always have our emergency pack with us!), food pump and feeding bag, and suction machine. All of that comes with us everywhere we go. If I need to go to the grocery store I would have to pack up all of that and get her dressed and loaded which is an adventure on its own. Most of the time I pay a caregiver to come over if I need to get groceries or I go on the weekend when my husband is home. If you see me shopping on Sunday, don’t judge, just try walking in my shoes.
Let’s say we want to attempt a park or splash pad. I go through the same process of packing up but because we’re outside I have to also worry about her getting too hot or dehydrated. We have a very precise diet prescribed for Brinley. She gets enough calories to keep hydrated and fed enough so that her body has the vitamins and nutrients it needs, but not too much that it causes stomach distress. Being in the sun for too long messes with that delicate balance. There’s also the crying which could be for many reasons: 1) she doesn’t want to be here 2) she’s hot or cold 3) she wants to walk and not sit in her chair 4) something hurts 5) she’s sad because she can’t do what the other kids are doing 6) anything other than the first five. Whenever I decide to take her out for something like this it’s always a toss-up of which Brinley we’ll get. Sometimes she actually has fun but about 80% of the time she whines and cries. As a parent I have to decide, is it worth risking the misery for the chance that she might actually enjoy this activity? I want so badly for her to experience life outside of the home, but without putting her through endless torture (i.e. sitting in the sun and watching other kids play). However, sometimes she just has to take one for the team so that Briggs can get out and be a kid. Having a special kid can be isolating.
If we want to go on a date night, Aaron and I have to plan this out the previous month. We have limited respite each month available to do all of the things I’ve mentioned. I have to call or text any of the nurses who work with Brinley and see if they are available. Most of the nurses that work respite also work full-time at other jobs so their schedules are tricky. If I’m lucky enough to find one I also need to see if she will let Briggs stay because technically it’s not their job but he likes to be with Brinley. Sometimes I have to train the nurse if it has been awhile since she’s been here. If I don’t have a nurse there are a couple of family members and friends I can call, but training and paying them is not like getting your local teenager. They have to be familiar with Brinley’s equipment including how to suction and feed her. Brinley is guaranteed to scream and cry as soon as there’s a hint that I’m getting dressed to leave. Whenever I’m away from Brinley I always have my phone on — there’s no such thing as silent mode with a special kiddo. And that’s just date night. Imagine for a moment planning a vacation away from Brinley. We have to get someone around the clock to be at our house with her. Since our nursing only covers 8 hours a day, we will be paying out of pocket for the other 16 hours. Choosing who will be with her is very stressful, because I want someone who is comfortable with whatever may come up and who Brinley enjoys being with. Along with that they have to be okay with Briggs too and give him attention. We have been lucky enough to have incredible caregivers who love our kids as much as we do. Once caregivers are scheduled, I make a list of every medication and treatment to be given at the appropriate time. I have a troubleshooting guide for “if this happens then these are some possible reasons.” I have to make sure we have plenty of diapers, wipes, food, feeding bags, feeding tube extensions, syringes, and medications are refilled. Every nurse needs to have access to the person who they will be taking over for and the duties of each shift have to be outlined. Emergency contacts, family, and neighbor contacts. Now imagine if we are taking her with us on vacation. All of that stuff (except the nurses) has to come with us including emergency equipment. It’s too exhausting even to describe, but at least we know there will be memories made.
As you can see this is a life that is constantly changing with new stresses to adapt to, and problems to solve.. That day I finally decided to walk into the doctor’s office and admit I needed help with my stress was one of the best parenting decisions I’ve made. I had to put my pride aside and admit to myself that this was too much. If I wanted to care for this precious child I’ve been given I needed to be me again. A mom that can enjoy all of the good moments without being overcome by the constant worries of the future. I want to be straightforward about the depression and anxiety that come with raising my special child because it is very much the reality of this life. Thankfully that was over eight years ago and I have been able to control it. Medication, exercise, personal goals outside of being a mom, and the support of my husband have all combined to help me lead a happy life and handle what is thrown my way. It’s never perfect, and there are occasionally still tears but, it’s a great life.
The Special Life entries are all about the realities of a special needs life. They show some of the unseen parts and some of my thoughts as a mom. Just so everyone reading this knows, we have a lot of fun with Brinley too. It’s not all sad, anxious times. There are a lot of smiles, laughs, and Taylor Swift (yep, Brinley is a HUGE Taylor fan). She’s probably one of the few nine year old girls that loves to gets kisses and cuddles from her seven year old brother. Everyday when I see her, she makes me smile and her laugh seriously makes me happier than anything else. There’s a lot of humor and silliness in our home! I don’t write this to whine or complain — it’s tough being a special needs mom, but there’s also a lot of love. If I had to choose going through all of this and have Brinley or not going through it but not having her, I would choose this life without hesitation. I would take every sleepless night, every ambulance ride, every dirty diaper, every part of it for this adorable, courageous little girl.
This post is written from my perspective as a mom, but I have an amazing husband who does more than his fair share with Brinley. He is in the hospital with us. He is also changing diapers, cleaning up vomit, and holding Brinley while she cries (and me). He gives me naps when I have a long night and he deals with Brinley when I’m burned out. He is the best dad. I also have a wonderful support system of my parents, in-laws, sisters, sister-in-laws, etc. Life is tough but we are tougher.
