Tag: holoprosencephaly

Heartache on Christmas

The holidays are hard for multiple people for multiple reasons. Missing family members, comparison sneaks in, seasonal depression.. but the one that isn’t talked about much is the heartache of a special needs parent on Christmas.

When I first found out I was pregnant with Ashtyn I pictured each birthday, holiday, all the milestones. What I pictured vanished once her diagnosis became our reality. A hole started to form in my heart. No first words, steps, cake smashes, opening presents, temper tantrums.

Something so simple happened yesterday that sent sadness shooting into my body. Traveling home, we stopped at a gas station. As I was coming out of the bathroom a little boy and his father were passing the coolers. With all his might and the cutest country accent the little boy said, “oh I sure hope that they have my chocolate milk.” I walked out of the gas station thinking “Oh, how I wish I could walk into gas stations with my little girl holding my hand.”

Christmas shopping is hard, too. Ashtyn officially crossed into the toddler isle a few months ago, which was a whole other tear jerking event. So, shopping for clothes is about it when it comes to presents. We are still in the baby isle for toys, because anything else would just collect dust. Leaving a heartache for more.

I sound like I’m complaining. I’m not. Ashtyn is here. Her third Christmas with us, that is a victory in my book. I’m so in love with my little girl. But sometimes, I still get the visions I had when I was first pregnant – and long for them with every bone in my body.

Having a child with special needs opens your eyes to so much. I wouldn’t trade the lessons I have learned for anything. I savor every moment. I take time to “smell the roses”. I get to be who she is dependent on for a little while longer, and that makes my heart so happy. Every holiday, birthday, and event is a blessing and so so SO cherished.

If you happen to be a special needs parent reading this: I see you. I feel your pain. You are not alone even though it feels like it. You’re doing amazing. If you happen to know a special needs parent- BE PATIENT. It’s a tough time right now. We, special needs parents, walk into every situation with an escape route knowing that sometimes our children can’t handle the hustle and bustle that comes with the holiday season. We aren’t being rude, we are just prepared. We are very aware of the “pity face”. We smile, but something breaks a little every time. We don’t need your pity. We need love and support. Most of all, love our child.

My family loves Christmas. We love what it represents and getting to celebrate with family and friends. We are very thankful for our tiny circle of support. We sincerely hope you have a very merry Christmas and a happy new year!

What is it like?

I cannot tell you how many times I get asked this question. “What is your life like being a special needs parent?” people ask if I am some foreign idea or object. I chuckle because there is so much I want to say, but usually just answer with, “it’s hard and amazing all at the same time.” Because that is exactly what it is, the hardest and most amazing journey I have ever been on.

Truth is, there is so much wrapped into it. So much that needs to be unpacked.

Being a special needs parent is:

Constantly having to remember which doctor is who and when the appointments are. If you are a pro, you probably have a planner of some sort. Maybe even some sticky notes with reminders.

Having mini panic attacks when an alarm goes off in the middle of the night and stubbing your toe while running to check on your child.

It’s having to hear over and over and over again what your child probably won’t do, but still grasping on to faith that maybe one day they will.

It is doing anything and everything you can possible to ensure the best quality of life, often times at the expense of your own quality of life.

Being on a first name basis with all doctors offices and the emergency room staff.

It is advocating for your child, because often times their needs are looked over. Their face becomes just another case. Sometimes you have to get down right ugly, but it is worth it, because your child is worth it.

It is answering “no” to every milestone question on the form they give you for check-ups, and fighting back tears as you do so.

You become a parent, nurse, therapist. So many hats. So much stress, but you do it with a smile on your face.

It is having a “go bag” in case of emergency so you can just run out the door and get to the emergency room as fast as you can.

It is being an educator to those around you because there are so many questions.

It is being exhausted, but mustering up the energy to spend as much time with your child as possible.

It is praying fervently.

It is wishing that one day you’ll just wake up and it all be some sort of dream. Wishing that instead of an alarm going off to wake you, it is baby giggles and “moooommmmmmyyyyyyy”.

It is being hopeful that the “firsts” will come around. The first crawl, roll, word, step. And watching as other parents seem to take those things for granted.

It is planning your trips and activities around the need of your child. Is this place wheelchair friendly? Are the activities handicapped accessible? Can my child actually participate, or is it a wasted trip?

It is trying your best to control everything, but then realizing nothing can be controlled.

It is crying in private, and then putting on a brave face.

It is dealing with the stares and then doing everything in your power to not rampage.

For me, it was total surrender to the Father. Taking everything that was ever said about my child’s quality of life, what she may or may not do, how long she will be on this earth, and just laying it at His feet and then allowing myself to crawl onto His lap. Knowing that He is the ultimate physician, and a good good father.

It’s being so dang proud for all the milestones that your child makes, and being okay with the fact that they don’t look like the normal.

It’s wanting to scream to the world how awesome your child is.

It’s your heart bursting every time a laugh comes across their lips.

It’s love growing leaps and bounds every single second of every single day.

It’s extra cuddles at night, dance parties in the afternoons, and worship in the mornings.

Everyday is a brand new adventure.

Everyday is a blessing.

It is the most rewarding thing I have ever had the chance to experience.