Part 1 of this story is here. You’ll want to read it first.
I want to try and tell you what it felt like to be told how significant Sophie’s developmental delays were. Not just to be told, but to understand that you don’t know what you thought you knew. That your reality is…not reality at all.
We buried my Grandpa on Wednesday. Sophie had speech therapy that day, and as she and Joshua were too young, I felt, to attend the funeral, we sent Joshua to school and my friend Luanne took Sophie for the day and took her to therapy. I sent a note with Luanne, asking Tanya, her therapist to call me.
Tanya called me on Thursday. I think I went over the list of the preschool teacher’s concerns with her. And then I asked her, “So can you tell me, how far behind on speech is Sophie? Like, six months, a year?”
That was what I thought. Six months, a year max. After all, Sophie was three years and 11 months old, and she had known all her letters since age 2, all her colors, shapes, etc. She even could recognize several words. She had a great vocabulary, but she didn’t converse or answer questions. I knew she was smart. And stubborn. She was smart, sweet, and crazy.
“Her delay is significant.” Tanya said.
“Significant?”
She then rattled off some test scores, and then admonished that “standardized tests are not the end-all be-all.”
“How far behind is she?”
“Her test scores were that of a child aged two years and four months.”
Sophie was three years and 11 months old.
“How long do you think she’ll need therapy?”
“She will likely need therapy for three to four years.”
Suckerpunch. No words. I don’t remember the rest of the conversation, except that Tanya offered to write a letter to Sophie’s teachers telling them how they could help her and what sort of expectations they should have for her, and to call and talk to them about it.
More crying. I called my husband, and my mom. Cried some more. I made an appointment with Sophie’s pediatrician. My mom started making calls to get information about getting Sophie into a preschool program that would be more appropriate for a child with her level of language delay.
Immediately, even through our shock and grief (yes, grief. This sort of thing, a friend told me, has to be grieved.), we got the ball rolling on getting Sophie back on track. A pediatrician appointment, a referral for an occupational therapy evaluation (they couldn’t get her in for three weeks), and phone calls and appointments to get Sophie into a preschool program for kids with developmental delays in our local public schools. And almost immediately I started working with her at home on her hand strength and cutting as well as her speech.
But I was scared, you guys. I was so, so scared. I cried for days. Howling, wailing, keening. Like, I lost my sh*t. For at least two weeks, I would say probably close to a month, I didn’t talk to my close friends about any of this. I couldn’t talk about it without wailing. I am pretty sure Bobby thought I would never be normal again. Joshua, who not quite seven, asked over and over, “Why is mommy crying?” Sophie didn’t say much but did wipe away some of my tears at times, and snuggle me. Really the only people I talked to about it were Bobby, my mom, and Emily. And Emily I just talked to about it over instant messenger because I can’t wail over instant messenger and therefore was much easier to understand. I think I texted Cortney a little about it. As much as I could stand. I wasn’t embarrassed or ashamed or angry, but I was terrified. “What if she can’t learn?” I asked Bobby over and over. He tried to reassure me. I KNEW she was smart, I KNEW she could learn, after all, it was because of all she COULD do that I had failed to realize how much she couldn’t do.
My mom told me that first day, that Tuesday, “The Lord made her, and the Lord’s going to take care of her.” I held on to that. I cried and prayed to God, to help me to help Sophie. To do the right things for her. To put the right people in our lives to help her.
Praying comforted me, and I know God heard me. But still the fear. The fear was paralyzing.
To be continued.
Part 3 of this story is here.
…again, excellent.
UP
I think I know how you feel. Again, thank you for sharing.
I love you Jenny and I love Miss Sophie even though she has become too independent now a days to give Miss Cortney any lovins. I kinda miss my Sophie hugs but am so proud of what you and her have accomplished over the 1.5 years. And I still love what your mom said! “The Lord made her, and the Lord’s going to take care of her.” How many times have we said that and inserted one of our kids’ names (beside Sophie’s) into it? What a journey and I have been blessed to be along side you during it and get to witness a beautiful story! Love you!!
Sweetheart.. hugs.
I am so proud of you and Sophie and the things God has made possible in the past couple of years. What a testament to His goodness!
Now, imagine our story. Imagine being told that your child is not the perfect baby you were expecting. Imagine being told that your child will need to have surgery on her heart. Imagine being told that she will always have significant delays. Imagine being told that she can’t hear. I went through that same dark period and wasn’t sure what to do with this “special” baby we had been given. God and I had it out one night, but since that night 5 years ago, I’ve felt nothing but peace about raising our sweet girl Regardless of the obstacles we face in this parenting journey, God is good ALL the time! His blessings (though they may seem like burdens sometimes) are so much more than we deserve!
I have thought about that initial shock you all must have felt, many times. I just can’t even get my mind around it. And yet when I see your family I just see beauty and awesome! You are very right, God is good and faithful and makes all things beautiful if we let him.
Keep writing!
Wow, Jenny. You are brave for sharing this personal, difficult story. I bet it feels good to tell it, one piece at a time.
Did you see the post my neighbor wrote on WMAG last week? About her son who had a stroke in utero? You would probably relate somewhat to her experience: http://www.workingmomsagainstguilt.com/2012/05/big-brother-baseball-star-animal-lover-stroke-survivor/
Thanks so much for sharing that Susan! I could definitely relate to her story.
Thanks for sharing this story, even as hard as it is.
I can relate, yes I can.
I have no doubt that was difficult to share. A lot of kids develop at their own rates. There is also nothing wrong with getting a second opinion.
Bravo! I think you must be helping a lot of young mothers out there who are going through similar situations. I pray this is a healing process for you. Sophie is a fortunate girl to have you for a mother.
Reading and listening.
And so thankful for sharing your story.
Oh, Jenny! These posts are so beautiful. Thank you for sharing the hard story with us.
Your mom is right. God made your sweet girl! What a relief we don’t have to know how she works–He does.
Hugs, girlfriend!
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Thank you for sharing; I think that just by telling your story you’re chasing fear away.
I’m so glad you wrote this – for you; because now it’s all ‘out there’ and that takes some of the power away from it, doesn’t it?! I’m glad other people can read how you had to grieve – because your friend was right and smart to tell you that – it’s true. You lost an expectation and a sense of thinking you knew how things might go and when that happens it’s 1000 times worse when it’s about your kid than yourself! Loved this, thank you for sharing these words!
Love that Soapy.
you are so brave and you did what you had to do for your daughter — so what if you cried or prayed or whatever else you needed to do to get through it…
that is why you are a good mom – you did/do what you had/have to do.
I totally get not talking to others — I am that way, too.
Thanks for your post – I know many, many moms will appreciate it.
R
How amazing that you’re able to write about this time in your lives. I think there are many people out there who need to read about it. Who need to read about how hard it was for you to come to terms with… to explain… to strive to make better. I imagine she’s pretty wonderful (as you are) and hope that time and your effort have started her on the right track to progress. Much Love – me
Thanks Jenny! She is doing awesome – check out part three of the story, which is posted now. xo