As much as I’d like to put a protective cocoon around her and be her voice among other things, I can’t.
Let me preface this entry with two things: my heart is in my throat these days as we wait for our final piece of paperwork to travel to China for our sons, and our daughter, who is 4 1/2, has severe expressive speech delay. Though she can talk and does very much here at home and is even trying more and more out of our happy home, no one can understand her except for a handful of people.
That is so hard for me to accept right now. Sometimes it is easier; right now, it is really tearing my heart out. I watch her struggle and it tears me up inside.
Yesterday at the pool, she was so excited when some other little girls came. They are both about 6 months older than her, but they are really sweet little girls and played with her last summer. They know “she can’t talk like us” as they put it. They know she had something wrong in her mouth.
But yesterday, they sort of distanced themselves from her after awhile. And yet, she DID NOT GIVE UP. I wished so badly for her that she would just give up. But she kept trying to engage them with this toy or that toy she had brought, with doing this little jumping move or that. It was not enough this year. They are all getting older. I get that.
But my heart still aches for her. As she gets older, I know this is going to just be harder and harder. When you can’t communicate your wishes or answer little people’s questions, they assume you either can’t hear or you don’t want to talk to them. Oh bless her heart!
Yesterday I bit my tongue more than once as I wanted to scream, “She WANTS to play with you.”
“Yes, she likes the color pink!”
“Yes, she has a name, and she IS SAYING IT. You just can’t understand her.”
At one point, she came over and was looking rather sad. You see, she has been working SO HARD on pronouncing her name. And she is doing a marvelous job. It sounds so clear to me and to others in our family. Even her ST was impressed. But the little girls: they couldn’t understand her and told her as much. It hurt her feelings. They didn’t mean it that way; they were not being unkind. They really tried to and their moms did step in and remind them of her name.
I can’t be her voice for her for forever. She will be five years old in October. When I hear two-year-olds speak so clearly compared to her, it breaks my heart.
No one told me how hard the special need of not having a voice (or at least one that is understandable) would be. No one.
I do not wish to discourage anyone from considering adopting a child with a speech delay whether it be from cleft lip and palate or something else. I just want to prepare you and encourage you to prepare your heart for the hurt it will feel for your child as they struggle. But you see, it is her struggle to take on. She has to face this, and she is with more strength than I can even muster most days.
A year ago, the Prez and I swore we’d never take on the special need of cleft lip and palate again. Not because of the countless surgeries through adulthood. Not because of the way a child’s face looks. Not because of the rude stares and questions. No, not any of that. Only because we cannot imagine watching another of our children be cast aside because she refuses to speak knowing they won’t understand anyway or watching her fall apart in tears on the floor because WE can’t understand a string of sentences she has just said and she KNOWS what she was saying.
We can understand most of what she says, but she often uses three words or less because when she strings together several sentences, we get lost. And she gets mad. At us.
It is much harder than I imagined. But would we do it all over again?
Well, you know what they say. Never say never. I guess God had different plans, because we are doing it all over again.
Our younger son waiting in China was also born with heart disease and cleft lip and palate. As far as we know, his palate has not been repaired. He will be five years old next week. We know he’ll struggle and have to fight for every sound, every vowel, every consonant, every syllable, every word, every sentence. Most likely for years. And we’ll be there fighting alongside him. And no doubt so will his little sister.
*Edited to Add: After reading Debby’s comment below (THANK YOU Debby!), I need to clarify. I don’t always stand to the side and let her be her own voice with no help from me. I definitely find a balance. As her Momma, I can definitely tell when she needs and wants my help and when she doesn’t. My little girl is determined with a capital D! So anyway, I realized after Debby’s great comment with great points that I needed to clarify. It is definitely a balancing act. I in no way want to communicate with this post that we should never interfere, which could definitely be a detriment to their feelings of self-worth and self-confidence. But the truth is, our DD will probably always have a speech impediment and I need to help her learn how to overcome that and help build her confidence in her own abilities even if others tell her otherwise. I need to encourage her to talk and to keep on trying even when it would be much easier to just give up. Hope this clarifies my post and again, thank you Debby for your excellent follow-up comment.*