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Special Needs Motherhood: Why does this have to be so hard?

My son woke up at 3:30 this morning, his brain ready for the day.

He called me in and immediately began talking about chameleons – their habitats, their care in captivity, their coloring, about all the things chameleon. My eyes were barely open. 3:30 AM came way too soon.

And through the groggy haze, I closed my eyes and thought, “Why does this have to be so hard?

After getting breakfast for everyone this morning, I sat down, still in my jammies, hair all a mess, and balanced our checking account. I breathed a sigh of relief that a payment had cleared and a deposit posted. I know I should be grateful that we can pay for all the therapies again this month, and I really am. But I still found myself trying not to think about how the savings account is dwindling (again), just as we head into my husband’s slow work season. And I tried not to think of all the other things I wish we could spend that money on.

I closed my eyes and thought, “Why does this have to be so hard?

 

I brought the pill over to my son, already feeling a little panicked. Some days, he swallows it like a pro. But most require coaxing, him slapping it out of my hand and crying, me scrambling to find it before the dog eats it, and coaxing some more. After almost 45 minutes, he finally swallowed it. He needs this medicine. It’s life or death. In frustration, I closed my eyes and thought, “Why does this have to be so hard?

 

I pulled out the reading practice sentences, and asked my son to read them. He flew through the first two. I smiled, and breathed a sigh of relief. Then, somehow, his brain began scrambling things again. The sentence “The dog dug in the pit,” suddenly became too much for him. He got stuck at ‘the’. So I helped him, but then he got stuck at ‘dog’. As I tried to help him recall the sounds, he ran to his room, crying. I closed my eyes and thought, “Why does this have to be so hard?

The insurance companies.

The school accommodations.

The medications.

The meltdowns.

The doctors’ offices.

The transitions.

The sensory overload. 

The strain on my marriage.

The restricted allergy diet.

Sometimes, I can’t help myself. Sometimes, I find myself questioning, “Why does it all have to be so hard?”

I heard another mom’s story this weekend. It was heartbreaking. She lost her daughter just one hour after she was born. She knew about the kidney problem that would ultimately take her daughter’s life at 22 weeks gestation, so she carried her baby and the horrible reality that, without a miracle, her baby would die, with her for weeks.

She told of the grief and the sadness, the darkness and the anger. And, she said she would often close her eyes and pray, “Why does this have to be so hard?

Six months after losing her child, she still can’t answer that question, but she did say this –

“What I have learned is that it may not be easy, but it matters.

It matters that she got to carry a child at all, when so many women know the pain of not being able to conceive.

It matters that she is still very much a mother who knows her little girl is in Heaven, and suffers no more.

It matters that she can look at other children and smile, seeing them for the unbelievable blessings they are.

Instead of asking, “Why is this so hard?”, I want to tell myself in those moments – the exhausted, the frustrated, the heartbroken moments – I want to tell myself what she learned, in one of the most painful ways possible.

It may not be easy, but it matters.


For more encouragement and support:

I Just Want To Get This Right For My Child

When Motherhood Doesn’t Go As Planned

My Child Is So Much More Than His Differences

 

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3 Comments

  1. Wow!! You described my life! My daughter was up at 3:00 this morning talking 90 mph! And the refusal to take her meds is a daily occurrence! I could go on!
    Thank you so much for sharing this! I needed to hear this today!!! What a blessing!

  2. It is a constant question in my heart and mind. WHY!!! 4 with special needs, cognitive, behavioral, physical. 3 neuro-typical that get lost in the dust of dealing with the 4. WHY!!! Yes, I know it matters-but THEY all matter, and I just feel so unable to be there for all of them:(

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