When Dreams Change - Being the Mother of a Special Needs Child

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From the outside my life probably looks like many other moms. I take care of the household, kids, pets, and cook, organize the parties and gifts, run the family calendar, chauffeur and pay the bills.

All these things are the same but when you take a closer look you quickly discover that our daily routines and the way we plan and approach things are completely customized towards the needs of our daughter Dominique.

Isn’t it the truth that we can only understand and relate to someone if we have walked in his or her shoes? I absolutely did not really understand other parents of special needs children before when they told me that their children taught them so much more about life than they ever could have imagined. I became a special needs mom literally over night and had no clue what it meant, but when it became my reality these words took on a very deep meaning for me.  

People often ask me: “ How is your life as a mom with a special needs child? I admire you but I could not do what you do.”

WE ARE NOT SUPERHEROES.

There is really nothing magical about our life. For the most part we are like other parents who give their best to raise, train and equip their children to become independent and successful adults. Our path, expectations and goals along the way certainly take on a different form and shape. We often face unwanted challenges or storms that lead to huge growth spurts in our spiritual lives. We eagerly learn everything about our child’s genetic make up and become their greatest cheerleader, advocate and a highly trained specialist.

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The truth about raising a special needs child is that we moms and dads are not superheroes. We struggle like any other parent and under pressure or sleep deprived we can easily lose our patience or raise our voices occasionally. That’s why resting and organizing a break is an absolute necessity for us. If we don’t take a break, we break. I actually have my time out spot where I can retreat and pull myself back together.

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I often get compliments about how wonderful I parent our children and what an amazing mom of a special angel I am. While I appreciate and need these words of encouragement, I silently think: “ Oh, if you only knew that I feel like I stumble through this journey but really don’t know what I am doing.”

PUTTING THE PUZZLE PIECES TOGETHER

 I read all kinds of books that remotely look like I can get guidance and surround myself with people who can advise me about my child’s disabilities and at the end we are the only one who can make the ultimate decisions for her. We try to put the puzzle pieces together, which is very challenging not knowing how the picture as a whole should look.  

TAKING MOMENT-BY-MOMENT, CHALLENGE-BY-CHALLENGE AND PRAYER-BY-PRAYER.

The most important puzzle piece in this decision making process is without a doubt our faith. Hebrew 11:1 says:” Now faith is the substance of things hoped for, the evidence of things not seen.”

When milestones are daunting and appear far away at an unreachable distance it is so heartbreaking to watch your child struggle so much with something that other children pick up with ease. In these defining moments I learned one of the most important lessons of parenthood is to focus on the One who can make the impossible possible and to let go of milestones. Milestones put God and our children into a box of limitations.

When I need encouragement I remind myself of Galatians 6:9, which says:” Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.”

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Raising a special needs child is a very slow and intensive process. It can feel lonely at times. Their successes and triumphs over physical and cognitive limitations are happening in micro increments. It takes a huge amount of faith to stay strong and to hold on to your hope believing in what we are unable to see in the moment. We walk moment-by-moment, challenge-by-challenge and prayer-by-prayer.

In this walk we change. We learn life lessons. It’s compassion, patience, joy, empathy, perseverance, and diligence on a level that no one could have ever described to me before I became Dominique's mom.

APPRECIATING THE SMALL THINGS IN LIFE.

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Our macro vision turns into a micro vision. We appreciate the normally unnoticed little things in life that we took for granted before she was born. The seemingly normal activities like going together to church, to a park or on vacation become blessings.

We still have to have a plan B when we go anywhere because we never know how she will handle the situation. We always hope for the best and are prepared for the worst. Our girl can have a meltdown in a split of a second triggered by anxieties or her sensory issues.  

Parenting our sweet girl has been more rewarding than anything I have ever done. We are who we are because of her. We don’t take anything for granted and appreciate the small blessings that come along our way. 

Inspirational Questions:

I did not plan to take the special needs journey but I learned to embrace it and trust my tour guide Jesus.

·       Are you on an unplanned journey?

·      What experiences showed you the depth of your strength and resourcefulness?

·      What did you learn from your children?

 
Silke BuczynskyComment