When I look back on life before children, I remember feeling like I had some remote idea of what parenting kids would be like. After all, I babysat and had dogs. These two things were decent preparation for me to consider adding the role of mother to the many labels that I carried in my thirties (baby number #1 popped out when I was 34).
When I got pregnant the first time, my world flipped on its head. I was teaching at the time at a high school. I had a caseload of students on IEPs who needed me to play the role of teacher, counselor, and parent depending on the day and time. All I wanted to do was sleep, and I was constantly praying that I was not going to get sick in the middle of one of my lesson plans. My stomach grew and my waddle became more pronounced. All in all, it was a very joyous and exciting time even though soda crackers served as my staple meal.
After my daughter, Cecelia, was born, I was very diligent about doing everything right. I thought she was going to break. I was very concerned about feeding issues that I considered her to have at the time. She basically couldn’t figure out how to breastfeed and was losing weight at warp speed. As a result, my husband smuggled formula based bottles down her throat which caused her to gain weight and caused me to be in a complete state of confusion for about a day or so. He was worried, and I was frantic about “doing the right thing” for my child. I was scared over everything. What if formula milk was going to cause my bundle of joy to be incapable of warding off potential allergies or sicknesses? Why was my daughter’s acid reflux as bad as it was? Would she grow up with acid reflux that would cause her head to spin every time she drank a glass of wine, cup of coffee, or a soda as an adult? After all, these would obviously be her drinks of choice since she is my child. ;) All I could do was cry for the first few weeks she was born and hope to God that I would regain my sanity. If I wasn’t able to do so, I wanted to at least stop crying from wacky hormones and start feeling that I could make fun of what I was going through instead of feeling a sense of dread.
Luckily, my comedy returned. A couple years rolled by and I was getting the hang of parenting my drama queen. My husband and I were ready to once again embark on being parents yet again. We had our son, Ethan, when his big sister was three. Having two children is definitely a different experience compared to just one. How did my mom have six of us? Yikes!! Mom is most definitely loved but is also a special kind of crazy.
Life was great in my new family of four. My hopes and dreams for the future revolved around my two children and their growing personalities. They were both on track with development and everything was “calm”…So “calm” that I dared to use that word to my husband about two weeks before all hell broke loose. In April of 2012, my then nine month old, Ethan, started having seizures known as Infantile Spasms. These seizures cause more damage than grand mal seizures and are very difficult to control. Development is on the line if these seizures continue to occur and cannot be controlled with medication(s).After hospital stays and two types of medications, Ethan gained seizure control. Luckily for us, Ethan has been seizure free and med free for the past two years. But it was a long process to get to where we are currently at with our son.
During Ethan’s ongoing seizure rehabilitation, we have worked with medical, therapeutic, and academic intervention teams on his behalf. We probably have worked with over twenty professionals to get him back on track since his initial diagnosis. We have added diagnoses of dysphasia (swallowing issues resulting in a temporary feeding tube) and myoclonic seizures which are less intense in nature than Infantile Spasms. We suspect that we may be dealing with more disability labels as a result of sensory issues and developmental delays in language. Ethan is nonverbal and has a host of behavior issues resulting from being unable to express his needs. Ethan’s issues have taken our little family on a roller coaster ride that can be defined as anything but “calm.”
If this makes you sad for me or if it makes you feel a level of pity, I understand your thoughts but would love you not to have them. I know it is hard when you meet people who have children with special needs if you have little experience dealing with disabilities. But, please do me a favor. See past these issues for the sake of your loved ones. They need you to help them reach new normalcies. This is not an easy task, but it is definitely appreciated by the ones going through a special needs journey with their child.
I have struggled to understand the how and the why aspects of this happening to me as a mother and how this could happen to my perfect little family of four. Yet, I have come to realize something very powerful. I have learned that life is not fair for anyone. My life has always been one that I could conquer or work through with a decent amount of ease. Ethan’s situation has allowed me to get the importance of being vulnerable and being ok with that feeling. It takes guts to have a series of “to dos” for a child with disabilities. There are a plethora of appointments and moments where advocacy seems to happen in a room full of only my own air.
The wonderment from the experience is watching Ethan grow into the almost five year old that he is. The joy is watching his eight year old sister explain to her friends that her brother is a good little guy who simply can’t speak. The interesting piece to all of this is watching my community of friends and family rally around Ethan’s successes. So many people have helped to build my little family up in a way that truly was unimaginable to me before seizures struck my home. We are blessed to know amazing therapists, teachers, and doctors who cheer us on and know that our son will reach a great level of potential. Our goals are family based and not just success levels for Ethan alone. That fact makes my family unit incredibly strong.
The days of worrying about acid reflux rearing its ugly head in my daughter’s adult life are a distant memory. The future holds much mystery. I won’t lie. There are days that the fear of the future can be suffocating. Yet, the beauty of not knowing is allowing me to live in the moment and appreciate everything we have conquered for each other as Team Lattime. Ethan has carved a place in the hearts of his family, our friends, and his growing team of professionals. We are blessed by our connections at LLA Therapy and know that they represent the loudest part of our family’s cheering section. The “bleachers” are always filled with the most wonderful support system that are as amazed as we are by Ethan’s ability to beat so many of the odds that were initially against him when his diagnostic journey began. We are proud of him and the life that we have built together.
We may never use the word “calm” out loud to describe our lives even if we feel that way. Instead, we will embrace the varied levels of chaos that make our home its happiest levels.
If you feel confused or helpless by your own child’s journey, I wish you peace of mind. Parenting any child is a challenge. Parenting a child with a disability takes patience, creativity, moxy, and a great deal of comedy to get through the toughest days. Please know this….although we may not know each other, I am sitting in the bleachers of your family’s cheering section. Every day holds new blessings. The trick is to recognize what these blessings are and build from the positivity that you witness. Embracing the chaos is also something that I have gotten better at over time. ;)