In Nikki's Blog

I find myself so many times scrolling through facebook and emails reading through the rawest and real stories of how hard it is to parent a child with special needs. The isolation, the public outings and stares their child receives while having a meltdown, the family members that give unsolicited advice, the strain on a relationship and just all the stressors that come from navigating through this world of unknowns. And while those blogs are extremely powerful, helpful, insightful and give so many parents a sense of belonging, they often times bring me down and make me sad rather than feeling more connected. They take me to a place I most definitely understand because I have had those thoughts and feelings before and from time to time let them creep in my brain again. I have been the parent praying to God for me to have just one out of my three to be considered “typical”. And finding out that the prayer would go unanswered and I would never experience what that would be like as a parent. I would be the parent of three children diagnosed with Autism all in a fourteen-month timespan. Those were some of the darkest days of my life. Because fourteen months had actually stretched back farther and it was more like 2 years and 4 months of a gut-wrenching medical journey for my youngest son that took an extreme toll on our entire family and left us in a survival style mode. Those were bad times. Bad times. There were times I struggled to get up because I honestly didn’t know if I could withstand what the day was going to bring.

All three of my boys are diagnosed with Autism. Most people who know me know this. But it was a couple days before my twin boys were evaluated that I started consuming my brain with all the thoughts and feelings you get when something like this is approaching. “How will I handle this?” “I stay home with my boys, how will I tend to three different kids if they are diagnosed?” “I could potentially be a mother of three special needs kids!” “People will look at me and feel sorry for me.” “I don’t want pity!” “My life is over.” “What will their future look like?” “Will they go to college?” “Will they be isolated in a classroom all day away from all their peers?” “Will they be bullied?” I can remember these thoughts just like they were yesterday. It consumed me and took over every single part of my brain. I couldn’t escape these questions, I didn’t want to even deal with the reality of any of it. I just wanted it to go away. Tuck it away and never talk about it again. I had started the journey with one kid on the spectrum, I didn’t even want to fathom doing it with three.

But it happened and they were all diagnosed. I remember a couple of things about “D day” (diagnosis day) I remember trying to bargain with our doctor over the oldest twin. I tried to argue with her and tell her all the things that he did that neither of the other two ever did. And then I remember breaking down in the room. I remember the look on the doctors face as she told me “I tried so hard not to see it with Chase. I really did. But it’s there and I can’t overlook that just because I don’t want to tell a mother that she has three kids with Autism.” And that is about all I remember. I think when major things like that happen in your life, your body has a way of blocking out parts that are too painful to remember.

A couple of days later I woke up and felt a little different. I was annoyed more than anything and I couldn’t quite place my finger on why I felt that way. The sadness and depressed feelings had passed and I just felt…different. I went on with the day and realized that the feeling I was having was with myself. I was annoyed with myself. I was annoyed by the fact that I let two days consume me with sadness and grief. I was annoyed that I let a diagnosis steal my joy about my beautiful and absolutely amazing kids. I was just so irritated with myself and decided right then to filter those feelings into something meaningful. I didn’t know how to explain my thoughts so I just started talking out loud to my husband. I threw out all this stuff at him about how we needed to use our story to help people. I didn’t want people to feel as isolated and alone like I did on those two days. And when I reflected back on the past fourteen months from my oldest sons diagnosis, I knew that I had been grieving that entire time. I had been in mourning of the life that I had pictured in my head about what my family would look like. The “two days” that are a giant blur in my head was just in fact “rock bottom” for me. And I knew right then that I would NEVER allow myself to slip that deep away again.

Hindsight, I know that I needed those tough, tough days. I know that you can’t skip those transitional periods and that those are in fact a part of healthy healing. I realize that now and I’m entirely thankful that I experienced it like I did. I’m thankful because it changed my perspective and was such a crucial piece of this journey to help me see things through a much clearer lens. Without the trauma of that season and the mental shift from depression to gratitude, I don’t know what this journey would look like. I just knew that I didn’t want anything to steal my joy like it did then. And if I’m being clear, this is why I get so upset when all I read about are all the difficult times of being in this world. I don’t want to sound unsympathetic because I think that I have earned a right to feel this way. I also respect the feelings of those who are writing their struggles because I have done the same thing to ensure that I was sharing it with the world to help provide understanding and acceptance. But I just sometimes get so discouraged that we don’t share enough of the joy that comes with this life that most people will never experience. And I wish other people could share those same feelings of joy with me.

With that being said, I’m not ignorant enough to think that there aren’t tough times and valleys that are deeper than the previous ones. Days that are just freaking harder than you thought possible. New seasons of life and changes in routines that rock your world. Days that you do still, in fact, get down in the dumps because of this journey and the unpredictability that it can entail. I’m not perfect, I strive every day to have a positive mindset but the reality of life can happen. Unexpected things happen. Hard decisions that you never even dreamt of landing on your doorstep, happen. Because of the difference in your perspective, you learned a long time ago all of the sacrifices that come from being a special needs parent. All the battles you have to fight for services and then the reality that services can be yanked at any time due to circumstances out of your control. You learn what’s necessary to survive and you make those tough decisions, you process it in whatever way that you have to and move on. You do not allow yourself to stay sad and you definitely don’t become of victim of your circumstance. You don’t stay down because you have more battles to conquer and mountains within reach that your kiddos are going to move. And when they push through and move that mountain, you know that all the hard stuff that was thrown your way was well worth it the fight. Watching your child learn the most simplistic skill that other people see as a completely normal part of a child’s development is something that humbles you in a way you didn’t even know existed. You have learned that you are a better person because of what you have been through as a special needs parent.

This is MY life. This is the hand of cards that I have been dealt to play with. I am the parent of three kids with Autism Spectrum Disorder. Three kids who have rare heart conditions, one child who doesn’t speak at 4 years old but has an older brother that tells people he will one day. My kiddo that doesn’t talk has had an extremely tough journey medically and has handled it like the champion he is. He has underdeveloped lungs that stem from an illness he came in contact with at 3 weeks old that almost cost him his life. He has had a G-tube to help aid with growth and nutrition, a swallowing abnormality, hospitalized 6 times for respiratory distress because of his lung status, Asthma, a compromised immune system and did I say that he can’t yet verbalize words at 4 years old? My boys go to preschool for 12 hours a week and do Behavioral therapy for 9 hours a week. My oldest is a 1st grader and does therapy sessions in conjunction with summer school during that break from the regular school year.

I tell you all that above to tell you that I choose to be positive on this journey. I choose joy over the alternative. It doesn’t mean it hasn’t come with a hefty price. It doesn’t take away the fact that that sometimes it’s just…hard. The thing that I want to know, without a doubt in my head is this; when my boys are grown and we are helping them decide their future plans that I can look back with the most confidence and know that I left no stone unturned. We pushed through the obstacles and persevered. We exhausted every resource possible and went above and beyond.

I can either play the hell out of the cards I’ve been dealt or I can sit back and be miserably blinded by this beautiful life that God has entrusted me with.


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