Grieving Over Two Very Different Things

In December 2012, I had a baby girl but she ended up passing away to SIDS three days after my husband came home from a deployment. We were devastated and broken.

Our whole family was. It was some dark times.

One month later we found out we were expecting again. I said this time I’m going to do everything different.

I ate better.

I cloth diapered.

I made organic baby food.

I wanted to breastfeed.

I was so scared of SIDS happening. I just didn’t want to ever go through that again.

Then we found out we were expecting twins.

When they were born they were these tiny little humans perfect in everyway.

For the first 4 months of their lives they screamed non stop because they had cows milk protein allergy. (cmpa) We ended up changing them to a special formula and they were fine after that and finally gave me their very first smile.

I had to give up breastfeeding as they had problems latching I felt like they just couldn’t grasp the concept because they even struggled to bottle feed.

At 6 months they started having breath holding spells and it scared the crap out of me because every time I would relive my daughters death.

At 7 months that was a huge milestone as they were officially older than their sister ever was and I could breathe a little again.

I started to become concerned at 8 months. They started screaming at vacuums, blenders, and power drills.

I remember researching Sensory Processing Disorder but I thought…no that can’t be…they are just babies. They are just scared.

At 15 months, I became even more concerned. Neither of my twins were pointing.

They babbled, then stopped, then babbled again. They would learn a few words and then they would lose them.

If someone came to visit they would lose it for a good 2 hrs. I remember googling Autism but I again said…no this can’t be.

When they were 19 months I had another baby girl. She was such an easy baby compared to them. When she was 1 and they were 2, I started seeing the differences.

I saw how she was developing and I once again researched Autism. Everyone kept telling me they would talk when they were ready but they just didn’t understand.

Even my mother in law, who also has a son on the spectrum, kept telling me they would. But they weren’t just ‘not talking’ they were still acting like babies. In fact they ended up being at an 8-month level at 2 1/2.

The questionnaires they give you at the doctors office are so confusing because when they say can they do it, it doesn’t mean just one time…it means all the time.

My twins would learn stuff and then regress. Which made it difficult and time kept ticking away.

They didn’t have that twin bond twin moms kept telling me about either. It made me so sad because I wanted that so bad.

I just kept telling myself it would come eventually. That they would acknowledge each other.

Everyone kept telling me twins talked later or they had their own language. If they weren’t watching mickey mouse all day they were throwing toys across the room despite me trying to show them or destroying the house all day.

Something just wasn’t right and I knew it.

Eventually the meltdowns got so bad that I made an appointment with the doctor with all my concerns. We then got into a developmental peditrician and she confirmed it was Autism level III.

Again, I was devastated. I just knew. I was expecting it. But it also helped me, because I beat myself up over them not progressing.

I was feeling like a failure as a mother that they weren’t doing anything their peers were doing and it all finally made so much sense.

I’m still grieving over my first born and now grieving the diagnosis of not one but two of my children. It’s heartbreaking.

I grieve over the fact that we can’t do normal stuff as a family.

We can’t just go anywhere. My life is filled with so few places I can actually take them…mostly just gated parks or our back yard.

I have dreamed of taking them all for ice cream but I can’t do that for the risk of them both darting off in two different directions. It’s just too dangerous.

I have guilt of not taking my daughter places and her resenting us or resenting her brothers. I have resorted in taking her to do things while they are at school but then I feel guilty for not taking them.

It is still hard to come to terms with the fact that I can’t leave my house with them without having to prepare myself for World War III.

It’s lonely and it is almost impossible to make friends with anyone, let alone them be understanding and patient.

My family lives light years away ( well it feels like it). I have no family to help as we are almost all military so we are spread out across the globe. Including my husband who is frequently gone.

I am fortunate to have one friend and she’s such an amazing person and very understanding. She helps me with no questions asked and I couldn’t be more grateful for her.

Having a child with autism has taught me to be more patient, understanding, and kinder.

Through the kicking and screaming and meltdowns and frustrations those milestones are also celebrated so much more.

The twins recently started ABA and are in a special needs program through the public school and have improved so much in the last two years. They went from not pointing and not understanding a single thing said to them to now one of them having over a 100 words.

The other is finally potty trained. They are now almost 5 and I’m hoping this progress continues.

They are the sweetest boys that make me smile and laugh everyday which makes up for every little bump in our journey.

It’s a hard road but I hope I have a lifetime with them because that’s all that really matters to me.

Written by, Harley Krein

My name Is Harley and I’m a Stay at home mom and I’m a proud wife to my husband Robert who is in the Navy. We have 5 kids . Our angel Vanna, Sora and Roxas who have Autism, Juneau and our newest Finn.

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