Special Needs Parenting – Some Days.

There are days that are good. There are days that are bad. And there are some days that are hard. Today is hard. I always feel like I need to immediately add a disclaimer – it could be so much worse. I’ve watched friend’s lose spouses at young ages, children go through cancer, terrible awful soul breaking devastation. I’m always aware of how blessed we are, and I am so thankful for that every day and am so aware at how much harder so many have it.

But still, some days are hard.

Apraxia. A little over a year ago, the word had never crossed my path. Now it consumes my days, my nights, my thoughts, my world. The condition that keeps my sweet little girl from talking to us, from telling us anything, from even signing, pointing or waving, no matter how hard she tries. And she tries. All day, every day. It’s not about some days for her, it’s every day.

There are some days when you are tired, running on empty, working so hard, and your daughter’s therapist comments about how she’s never seen a child who has had their limbs so impacted by apraxia that simply pointing or waving is such a tremendous struggle. It’s not that I’m unaware of that struggle, I watch her little hands contort and reach and twist to try and do something so simple as reach out to pick Cheerios or Goldfish for a snack. But some days you just wish that you’d hear the positive comment, something hopeful, or at least not be reminded that on the scale, the spectrum, whatever, you are without a doubt hanging out on the “profound” end.

These are some days when work piles up, things need to get done, calls need to be returned, deadlines are missed, emails need replies, proposals and contracts are waiting go be reviewed, but you sit in a state of what feels like reoccurring long term shock, wondering where you find the energy to get through the things that seem mundane when the things that are so important take every ounce of you. When you feel like you spend every moment of the day playing a game of charades that never ends, trying to be a psychic, trying to predict, trying to understand what this little soul is trying to tell you. Trying to be an interpreter to a language without words or signs, and it emotionally exhausts you on a level you didn’t know existed. But you realize you have to find the strength and energy to snap out of it and pull it together for your children, especially knowing that while so much energy was spent with one child all day, another comes home from school and deserves every bit as much from you.

Every day for us is therapy, therapy isn’t in the some days column. Speech therapy, occupational therapy, therapy homework, flash cards, augmentative communication apps and tremendous frustration. Life become therapy. Yesterday it took me over thirty very frustrating minutes to figure out what G was so upset about. She was upset, I was running out of patience, until finally she found a jacket and handed it to me with her big beautiful eyes pleading to put it on her. She was cold. Over thirty hard minutes to express to her mother, the person who is with her all day, every day, who knows her like nobody else, that she was cold. Something so simple was such a struggle, for both of us.

It’s some days like that where I feel like we are standing at the bottom of a mountain, and I don’t know how we’ll ever climb it. It’s moments like those that I almost lose my breath at the thought of her going to preschool or school, and not being able to to tell people anything and to not be able to tell me how her day was or if something bad happened. Terrible things could happen, and she has no ability to voice them. It hits a nerve at the base of the maternal instinct to keep our kids safe.

Will she ever say “hello”? Will she ever say “I’m hungry”? Will she say “my tummy hurts”? Basic things that get you through the day and meet simple fundamental needs. My mind swirls these thoughts constantly. I work to chase out the questions like “will she ever be able to sing the songs she hums?” “will she ever have a best friend?” “will she ever talk on the phone?” “will she ever tell us what she wants for her birthday?” “who will sit with her in the school cafeteria?” “will she ever go on a date”… ultimately at the core wondering “will she ever have any sort of a ‘normal’ life?”.

I tell myself that at least she can somewhat communicate through an iPad. But then some days I think about what kids are like, and wonder who, if anyone, will befriend the little girl who has to talk to them through an iPad. Kids can be so mean. I hope that my teeny tiny little girl can make a friend, or two, but even more than that I pray doesn’t grow up experiencing daily ridicule, rejection and bullying, and I wonder if we will have to home school her to protect her from that. I tell myself to worry about today, don’t think about tomorrow. But short of a lobotomy, those thoughts don’t disappear, they just simmer under the surface. How do you not wonder about the future when it holds so many unknowns.

It’s hard some days to not spend every moment possible researching. Is there something else we could do? Something we could change in her diet? A new form of therapy somewhere we could seek out. The thoughts never shut off, it’s just a matter of trying to turn down their volume. Friends, who you have no doubt really do mean well, suggest really obvious things and some days it makes you want to laugh. Or cry. “Have you tried sign language?”   No we’ve spent thousands of dollars and hours in therapy, seen countless specialists, had inpatient hospital testing, genetic testing with insane price tags, brain scans… and never thought of the baby sign language that every toddler on earth knows these days. My sarcastic side is hard to keep at bay some days, as I remind myself they mean well, while trying not to feel insulted that they think we’ve missed something so simple. As most special needs parents, the reality is you know more about your child’s condition than most professionals ever will. You’ve given up more nights than you can ever count researching and reading until you can no longer see straight. You know more than you wish you did.

She’s a smart little girl. But it’s trapped inside of her. Only a few, who take the time to really look, learn and listen with something other than their ears, can really see it. Some days where I wonder if it would be better for her to not be smart. To maybe be more unaware. To not be trapped inside herself, unable to express her thoughts and feelings. I think of how hard it is for my oldest to even wait her turn to express her opinion or share something – looking like she’s going to burst, unable to even sit still… and then I look at my youngest and realize that place is where she lives, but I do not know when her turn will come.

It’s easy to sit and wonder why her? Why us? What is the cause? And of course, how do we “fix” this? At the same time, this child is a gift beyond measure. Truly. A gift through the miracle of adoption. The smoothest, simplest adoption you could ever imagine. With the most wonderful birth parents, people who we fell in love with the moment we met them. An adoption that happened so much more quickly and easily then any potential adoptive parent even dares to dream. I was with this sweet girl the moment she entered the world. I cut her cord. I held her immediately. That is a miracle that to this day still leaves me in awe. And that miracle has a reason. This journey has a reason. This was meant to be. She is beautiful glowing ray of sunshine, and she was not given to us on accident. And I hold on tight to that thought.

And then some days I eat a cinnamon roll for lunch and try not to feel guilty about it as I finish up my pity party of one. And some days I look onward and upward, and have faith that some day, some how, some way, we will be looking back on this and it will all make sense. Some day.