What it’s like to parent twins when one has a disability…

This past weekend, Mila started to read.  Now, I know this doesn’t happen overnight and it was due to what she has been working on at school, but she suddenly wanted to do it all the time.  You could see light bulbs turning on for her. She had so much interest in her sight words and in her little cards with simple, repetitive passages.  She wanted to read to us all the time and we gladly let her, feeling so proud and so happy for her.

Evie sat next to us and cheered her on and got excited for her and jumped up and down every time Mila read a little passage.  She was so happy for her sister!

Mila reading!

And at the same time that I was so proud of Mila, my heart broke for my other daughter.

Not surprisingly, these conflicting feelings cause a lot of “mom guilt” for me.  Why can’t I just be happy for Mila?  After all, she has spent years watching us celebrate every speech and language milestone Evie has had.  Why can’t I just fully find joy in what she accomplishes without having to bring her sister into it?  Why do I immediately feel like I have to do so much work to “catch Evie up” to where Mila is at?  Why would I be so much more relieved/happy if Evie had started to read before her sister?

 

Mila trying to help Evie read 🙂

When we found out Evie was deaf- my immediate reaction was denial.  I brought her back to the audiologist twice to have her run tests because I was convinced she could hear.  Then, it was a mixture of denial and bargaining- I knew she was deaf, but pretended that a cochlear implant would “fix her.” She would “hear normally” (not true- Evie has access to sound, she does not “hear”) and talk “normally” and this whole “deaf” thing would be a blip.  Then it was anger.  I was mad that I had to put my child through 8 different surgeries.  I was mad at the therapy we had to do.  I was mad at all the other moms who had normal babies- ones that were hitting their milestones at the exact right time- while mine, 27 weekers and one that was deaf to boot- were months behind.  And I lived in a mixture of these feelings for years- anger, denial, and bargaining.

I’ve been in denial and I’ve bargained and I’ve been angry, but I’ve never grieved.  Part of it is because I feel like I can’t.  When I try and talk about my feelings around being a preemie mom and a mom of a deaf kid, I get a lot of “but look at where they are now!”  or “Thank God for modern medicine.”

And that’s so true.  I am forever grateful for the COUNTLESS blessings we have had in the journey- amazing nurses, the ability to give our daughter access to hearing, the financial help we’ve received to help with Evie’s school and therapy, the ability to send our girls to Northern Voices, family and friends that have helped us in immeasurable ways.

But I still grieve the loss of normalcy for my child.

My heart breaks when Evie looks at my lips and says, “mom can you help me hear that sound?” I am proud of her advocacy, but I want to take it away for her at the same time.  I ache when I notice that she truly hasn’t heard a conversation around her and tries to enter it with something that doesn’t relate to what the people were talking about.  She is so happy right now, but I know that she too will grieve what she doesn’t have and for that I feel tremendous guilt.  And, when her sister- who is wonderful and NEEDS to be celebrated too- does something before she does, I can’t help but feel sad for Evie.

 

Evie’s first cochlear implant surgery, she was 8 months old.

As much as I know logically that her hearing loss isn’t my fault, as mothers, we take on whatever “deficits” our children have.  For me, parenthood has been less about the joy in what it is and more about making up for all the ways I think I’ve put my children “behind.”

Yes, there have been so many gifts to having a child with hearing loss.  It has truly been miraculous in so many ways to see all she has accomplished and all that has happened in spite of the odds.  But it has also been achingly hard.  And, as we enter kindergarten and step away from some of the supports we’ve had, my ache grows.  I won’t tell you that there’s nothing I would change because there is.  If could, I would take away my daughter’s hearing loss in a nanosecond.

As moms, I think we get so many messages about how we “should” feel about parenting and most of it is wrapped up in finding the joy.  We are told to “soak up these moments now” because we’ll miss them later.   But I also think it’s okay to grieve.  It’s okay to grieve when parenting is tedious and hard and not what you expected.  It’s okay to grieve when your child doesn’t hit a milestone.  It’s okay to grieve when you see other kids ticking along and you’re in the thick of figuring out how to support your child.  It’s okay to grieve and be sad and be angry and be in denial while you love and celebrate and find joy in all the things that parenting is. It’s okay to wish away time.  It’s okay to want a crystal ball to know that things will turn out fine.

And for me, it’s about finding acceptance in the fact that I will probably always compare my two children to each other.  It’s about learning to accept grief instead of pushing it away so that they joy can come more easily.

 

 

 

 



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