special needs

I See You

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While contemplating what to write about this Mother’s Day,  I have been thinking about all of the moms that I know that have special needs children and I want you to know that I see you.  Really see you.

I see you – dressed casually with a ball cap on and a weary smile on your face as you walk up to the group of parents bringing their children to another youth function.  You make kind small talk and give a hug to another mom that  needs it.  No one knows that you have had a hand full of hours of sleep over the last 4 days because your child’s health has been on a roller coaster.  You get her stabilized but then continue to lay awake worrying about when she is older and how you may not be near her when she needs help and how it is all going to look.  You’re the mom who always has a protein bar and a juice box in her purse, a thoughtful expression, and kind word for others even though, right now, you could really use a nap!

I see you – It’s field trip time and you are enduring the eye rolls and sneers of other parents as the teacher explains at the details meeting that they can bring any snack they want to eat on the bus, except for one with peanuts in it.  You leave one more meeting wondering if one of those parents will decide that this is the time they will assert their God-given right to send peanuts for their child’s snack because it’s their favorite.  Little do they know that your child is anaphylactic to 3 other foods, but you know you can’t and wouldn’t expect an entire class of kids to accommodate to that extent.  You just pray A LOT and have taught your daughter to be keenly aware of her surroundings at ALL times and to use the stew out of baby wipes on seats and after she touches almost everything.  Her life literally depends on it, but you know you can’t keep her in a bubble.  Those parents  weren’t with you when your daughter ate a spoonful of cereal that was cross-contaminated with peanuts and she started to go into anaphylactic shock.  They didn’t see her eyes glaze over.  They didn’t see her stop responding to you.  They weren’t with you the first time you had to administer her epi-pen, antihistamine, and call 911 and pray that the reaction got stopped in time.  They weren’t with you when you sat beside her at the hospital for hours praying that the numbers would go up and that the IV medicines the doctors used would work.  The relief you felt as you were finally able to take her home was temporary, as each day you cannot let your guard down as you prepare breakfast, lunch, dinner, make an allergen free snack and try to make it  comparable to the other kid’s food at a birthday party, youth function, etc…  If you let your guard down that is when a mistake happens.  You’re the mom that has allergen free communion wafers in her freezer for special Sundays and a look of compassion, instead of intolerance when others are in need of grace from a group you are a part of, because you have been there…you are there.

I see you – It’s a new day, but it looks like every day.  You’ve overslept because you are so very tired and you forgot to wash his favorite bowl that he eats his cereal in.  The same way, at the same spot, every morning.  What’s the big deal.  Well, now he is in the middle of a major melt down.  There could be something else wrong too that you just haven’t figured out, but your brain is too foggy to figure it out at the moment because you were up with him most of the night, as he just could not sleep. He rarely gets more than 4 hours a night.  While other 16 year olds are driving to school and talking about picking up their tux for prom, your 16-year-old struggles to function with the slightest deviation in their routine.  He spends hours rocking back and forth, hitting himself in the head, and biting his hand to the point that it is raw and he is now on antibiotics for an infection that you know will also affect his gut that you have been working on relentlessly to try and heal.  Anything to help him any way you can.  You have done all of this research on your own, reading books from the library, reading articles by doctors, asking in online groups of other special needs moms what works for them.  You are just trying to help him get relief from some of the anguish he is in every single day.

I see you – Sitting in yet another IEP meeting, being promised that everything is taken care of and all is in place.  You are kind, soft-spoken, and pleasant, as always.  You leave your frustration at home.  You respond with understanding that it is baseball season and  that the teacher is a coach.  The teacher is a new mom and nursing.  The teacher thought your child seemed good and didn’t need any help, and didn’t see the need to follow-up with you to see if this really is the case.   I also see you, because you are so understanding, sitting up with your child every single night at the table doing homework for hours because assignments haven’t been reduced, as promised,  and your child will work himself into oblivion to get it all done.  I see you wondering when someone, anyone, will be understanding of his needs, when someone will recognize how hard he works all. of. the. time.  You are the mom that the school knows when you walk through the door, or when they see your name on yet another email, not because you are demanding, not because you want to be a bother, not because you won’t let your child learn responsibility, but because sensory processing disorder and autism are real things and your child needs help and you are his advocate.  So you continue to advocate, because you are a good mom.

I see you – standing and clapping, as tears stream down your face, watching your son bow during curtain call at the school musical.  The people around you don’t know how hard you worked to get him to talk when he still didn’t speak at the age of 3, let alone sing.  They don’t know how far he has come, how hard you have worked to get him there.  You are the mom that has worked tirelessly to rid his body of toxins and fill it back up with vitamins, minerals, and supplements, to learn how to cook foods that don’t tax his system, so he can focus and function inside and outside of the classroom.  You are the mom that is constantly researching all. of. the. things. to help your child be all that he can be.

I see you – scrolling on social media, a pit in your stomach as you read the angry rant of a “friend” that doesn’t know that it is you they are posting that snarky meme about.  You are that mom that has the audacity to question medical procedures.  You are that mom that shouldn’t be allowed to take your child to the doctor for a broken arm, if you don’t just blindly trust and willing obey whatever you are told to do to your child in any other area.  I see you hold your tongue, exhibit mass amounts of self-control and not defend yourself and genuinely hug that same person the next time you see them, recognizing that they don’t know the struggle.  They don’t understand.  They are not in the same situation and although it hurts when they attack, you love them anyway.

I see you and know that you wouldn’t do a thing differently.  You just want to be the very best mother you can possibly be to your child.  At the end of the day, you want them to know that you did everything you could to show them that you love them with every fiber of your being and that you are there for them, would go to the ends of the earth for them, just like any other mother who loves their child.

I just want you to know that I see you – the mother of a special needs child.  I see the hours that you put in, day after day.  The sleepless nights.  The concern for their future.   I see that you are tired and sometimes you feel discouraged because sometimes the day just feels like Mount Everest!  Know that you are seen, you are loved, and you are a good mom.

Happy Mother’s Day