Then a couple of weeks ago, I received an email in the midst of hospital stays, surgeries, distant learning, daily controlled chaos along with being in this pandemic. The email message was inquiring to share a little bit of our story. I am always grateful and honored anytime I get asked whether in a conversation or for a blog. I love reading about others as some really give great insight into day to day happenings. This is where situations cannot be taught in a classroom or in a training. It is the real deal of life. Needless to say, I really struggled to write this post. Finally, with both of the Little's home from their hospital stays, something hit me and here is what came from it...
Love What Matters shared our story....
“There is not one point in the day I do not hear, ‘I am not sure how you do it,’ or ‘You must have a full plate.’ Well, I will beg to differ on the plate issue, as everyone has a difference of opinion on what each person can handle daily. If I am being honest, there are many times throughout the day where I am not sure how I do it but I do. I am Julie, a mama, an advocate, a researcher, a nurse, a teacher, and a referee.
Through it all, I find myself trying to navigate for eight of our eleven children who require more. I am a Special Needs Mama, too.
Twenty years ago, when our third son was first born a little early due to a very complicated pregnancy, I knew the moment I held him he was a bit different. Different how? Our cute bundle of joy did not want to be swaddled. I kept thinking, ‘What newborn does not want to be swaddled?’ He had trouble nursing, well, basically eating at all. It took a series of this-and-that to get him to feed. It was not easy and already having two children, I thought it was me. I thought I was just failing as a mother this third time around. He hated to be held against anyone’s chest, as he really did not even want to be held. Quite frankly, he did not want to be in a small space such as his car seat or bassinet. I kept asking myself, ‘why?’ He was only a few days old and he just needed to be free in his own space. Plus, we had two children already with no issues, so it had to be me.
Several years later, after watching him go through early intervention services due to his lack of communication and his repetitive behaviors, he was given a diagnosis of Asperger’s. Back then, I had no idea what it meant to have a child on the Autism spectrum, let alone a high-functioning child who always seemed to not qualify for any type of service. I managed through a lot of trial and error. There were lost friendships, judgment by many because of his behaviors, and changing schools more than once.
We tried to manage it as normally as possible. Just with anything when you put a band-aid on, it only holds together for so long. I came to terms with our son and his differences, knowing he just saw the world in a different way. His brain just processed things his way. Truly, what is ‘normal?’ I knew that I did not owe anyone an explanation, but I found myself explaining a lot. Then, life took a turn. After having my own accident thus causing my own permanent disability, I found I had to advocate for myself. Fighting with insurance, advocating to receive services, therapies, etc. A path was just beginning to a whole world I knew really nothing about: special needs.
When we became foster parents, we signed up to foster and care for any child. I found myself advocating for resources, for early intervention, for therapies, for family services, for everything I could. I hit many brick walls and never took no for an answer. I became very humbled and realized how much the system does not tell people. However, with a little bit of research, there is much you can find. With that information, I either become someone’s best buddy or someone’s worst nightmare.
With our fostering journey of several babies and children, we also grew our family through adoption. I struggled to see how needs were not being met and how people turn a blind eye a lot. Not just people in the system, but family too. I was reprimanded for driving children an hour away, once a week to access better medical care. Our area does not have a children’s hospital within 50 miles in either direction. I was not raised by my parents to do anything half-assed. Therefore, I am not going to do that for any child in my care, homegrown, foster, or adopted.
When it comes to being a mama, I have a hard time with the title ‘special needs mama.’ Yes, we have eight children that have more needs than your ‘typical’ child but as a parent, you do it. I do not ever think I look back and question, why me? Though there are times I ask God how much more he believes I can handle. Especially in the days when sleep is non-existent, more than one child is being rushed to the emergency room, and I find myself wishing for a clone.
There is something I have found truly special during all the hard. I have learned to really see life differently. I used to take a lot for granted, overlook the time spent with family, the little things in life, precious treasures such as milestones. This is a huge factor as there is a possibility a few of my children may never reach the standard childhood milestone. I also have found the OCD that once consumed my life is now consumed by the daily controlled chaos of pitter-patter of feet. Honestly, a quiet home is not my cup of tea anymore. A quiet home now gives me anxiety. I used to be quick to say I never wanted to be a true stay at home mama and I loved my career. It is funny how life changes and how things are so different. I still yearn for structure and order, but I have figured out how to channel things differently. I would not change how my life has become for anything in the world. If my title of mama has been given the extension of special needs mama, then I am one blessed mama. I will take it all day long.
Though my day and nights may be filled with doctors, specialists, driving back and forth to the children’s hospital, sleep deprivation, g-tube feeds, scheduling of constant therapies, continuous monitoring of oxygen levels, endless medical researching, listening to monitors and many more things a ‘normal’ household could not even fathom, this is what I do, what we do as a family! Nevertheless, I cannot forget I am still a wife and I must find time to incorporate some self-care. I, too, have a disability and there are days I wish I could stay in bed all day. Those are the days I question, but I remember tomorrow is always a new day to start over, where I have the ability to start off with a smile. I am also so thankful for the great support system I have incorporated in my faith, friends, and family. I believe everything happens for a reason, no matter what.
I do not know what the future holds especially as we are in the middle of a pandemic. My family must take extra precautions. Some of my children are immunocompromised, along with myself, but it does not mean we not to stop living. We just need to continue to live in universal precautions. My children all have different needs, from sensory development to very medically complex needs. As their parent, I must ensure I keep their mental health at a good point, along with their overall health. The two go hand in hand. If I do not, our home will become a catastrophic event.
It is not always an easy balance. There are many days I want to pull more than my hair out. I just do not have the luxury to stop. There is no pity party. There is no time. I must keep moving, somehow, some way. I really have to find every fiber of my being most days. It is like someone telling me the full moon does not have any impact on our emotions. I do not even need to look at the calendar anymore. I just need to watch my children, their change in their behaviors, all leading up to the full moon. The same applies when it comes to food coloring or sugar intake. These things have major effects on my children and it is okay. We have made changes. I have learned how to redirect and when to choose my battles, knowing some are worth fighting and some are not. I also know I still have so much to learn, so much to advocate for, so much to live for, and so much to celebrate.
There will continue to be good days and not so good but that is the beauty my children have taught me as they live in the moment. They live with joy, they live in their smiles, they live through their adversity and their abundance of love.
For that, I am forever grateful to be their mama. I am a mama, a special needs mama. I am Julie, a mama of 11!”
God Bless...Until Next Time...Make It A Great Day!
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