Two-way Mirror

We (special needs moms) say a lot that you truly have no idea what it’s like to have a special needs child until you are in our situation. Especially after having Sawyer. I worry about Sawyer but I worry more about him misbehaving in a store or restaurant or what his future looks like in the world we live in now. I want to make sure he grows up to be a good boy/man and has many amazing opportunities in his future. However, having Skylar is totally different. I am not a hysterical mom who freaks out over things and I usually stay calm in emergency situations but I worry about everything and I’m always thinking of what her current state could mean or what is causing it. I worry when she sleeps to much because that could mean something is going on, I worry when she’s having to be on oxygen all of the time, when she’s crying from pain but we can’t locate the source and especially about things happening that could be disease progression and I worry most of all about losing her. A parent to a typical child or healthy child would never pray for their child to need a 15th brain surgery because if they have surgery it means that what has been going on for a few weeks is fixable and can be explained. It’s the unexplained and the non fixable stuff that we fear because that just means that their health is declining even more. It means staying on top of everything because when things slip through the cracks it could have very negative effects and being their voice and their advocate as well as their protector. It seems like we always have to keep it together even though we are often right on the brink of losing it. It’s trying not to roll your eyes or give a parent a reality check when they are complaining about their children or when their child’s worst day is what you’d consider a good day for yours but you have to listen to them freak out and talk as if they can understand your struggle and trying to put into perspective that this is the worst they’ve had to deal with when it comes to their child. Even though I sympathize and truly care about their concern in my mind I keep saying you should feel blessed that this is the worst you’ve dealt with. It’s always keeping a suitcase packed because an ER trip usually turns into a couple days in the hospital. Usually we know our doctors well and have cell phone numbers for a lot of the nurses. You develop such good relationships that your child’s doctor is telling you to email her or text her how she’s doing so that we only have to come to clinic 3-4 times that month instead of 5.  It means watching your child suffer and fight and go through so much but get to witness so much determination and strength. You are blessed with the time that you have and cherish every moment but also fear for the future and your life without them. It’s crying in your pillow at night because the anxiety and emotions of the day just overwhelm you so much that you can no longer hold it together. It’s being part of a community that when someone’s child passes no matter whether you knew that child personally or just knew their story you mourn for that child and for that family because we all feel the loss. It’s watching friends say goodbye to their children and feeling helpless and wanting to help them so much but having no idea how to take some of the pain away. It’s having support and a group of people who truly get your struggles and losing most, if not all, of your other friends because they can’t understand. It’s sleeping on the floor in their room because they are having such a bad night that you want to be close if something happens in the middle of the night. It’s learning so much that you feel like you’ve gone to some of nursing school, med school, and pharmacy school and you can laugh when you had to educate residents on something medical. It’s spending hours upon hours waiting in clinics, ERs, hospital rooms and surgery waiting rooms that if totaled up would probably be weeks to maybe months of waiting. It’s adopting a new way of life and understanding more about handicap accessible everything then you ever thought you would. It’s mourning the life that you thought your child would have but celebrating the incredible life that you were given and making sure that they live their life to the fullest. It’s celebrating any achievements even if it was just holding their head off the mat for 20 seconds or following a command one out of 10 times. It means pushing them and pushing everyone around them so that they can reach their full potential or at least be able to say we tried. It’s knowing your child better than you do yourself and knowing what they need even though they are nonverbal and can’t tell you or knowing how to figure it out. It’s a new world of frustrations that you never thought of before like being angry at people parking illegally in a handicap spot or parking illegally so that you can’t get your child in your van. It’s wanting to give back and give more to organizations because they’ve helped your family so much and what little time you do have its spent volunteering. It’s sending your child to school or leaving them at school even though they are having a bad day because if you picked them up every time they had a bad day you’d hardly ever work. Your days off consists of doctor’s visits or hospital stays because you want to save your time for the unexpected moments that you might spend 2 months in the hospital or a frequent 4-5-day stay. You love to work and you have no choice but you are torn because wanting to succeed professionally but also wanting to be there for your child as much as you can. It’s the guilt that comes with missing work and having to take off so much for hospital stays and doctor’s visits and worry if your boss will get tired of having to deal with it. It’s a battle that you never wanted to be part of but you can’t stop fighting and give up because your child’s life depends on it and you will continue to fight until their fight is over. It’s caring for their every need and learning how to care for them medically with PICC lines, medical equipment and things that if you weren’t a parent you’d have to be a medical professional to be able to perform. It’s having a child and striving for normalcy and wanting their space to look like a little girl’s/boy’s room and not a modified hospital room and finding new ways to store the endless amount of supplies that you require monthly. This isn’t all typically for a lot of families with special needs children. It looks very similar to us who have complex medically fragile children. Our journeys are very similar and we can take comfort in each other because we know exactly what they are going through. I watched a good friend say goodbye to her daughter and I wasn’t trying to make it about me because my heart was breaking for her but inside I kept picturing what my future might look like and it is beyond words to describe the devastation I felt and the sadness. Being a parent to a special needs child especially a complex child is not for the faint of heart. Not every parent is equipped with the ability to do what we do on a daily basis. I use to get so frustrated when people would say that God only gives children like Skylar to moms that can handle it but as Skylar got older and as she’s required more care I can now agree with that statement. Not to discredit them as amazing parents but it’s a totally different world. It’s like your standing in front of a two-way mirror. You can see them and their family and you’d give anything to have your child be healthy and running around and not confined to a wheelchair and equipment and watch them experience a totally different life. However, while you are looking out they are not able to see in. They know that you’re there and you can tell them about your life and experiences but they truly can’t see it. So the statement that you could have no idea what we go through is not out of disrespect it’s just an honest statement because when you look in a two-way mirror you can only see your reflection and can only just imagine what we experience based on the stories that we share and even that is biased because as I said before we always try to keep it together.