I am my own worst enemy…
an adventure in living boldly
I am my own worst enemy…
She was due in February of 2010, toward the end of the month, I believe. Valentine’s day came and I remember her talking about how much she’d love a Valentine’s day baby - that her soon-to-be-born son would always be her special valentine. Well, her sweet boy wasn’t born on Valentine’s day, but I can tell you that he is her valentine for sure - not just on February 14th, but every single day of the year. She is in so much love with him, as she should be!
One morning, in the EARLY morning hours, I got a call from a friend of my friend, telling me that they were at the hospital and this baby was coming quickly! In my half-asleep state, I called her friend back just to check that she really *had* called me. The friend said, “Yes, I called you. Do you hear her screaming in the background?” I still chuckle at that!
I got up & dressed and got ready to head to the hospital to welcome sweet little EJP into the world. Somewhere along the drive it occurred to me that the date was February 19th. The date that was my “expected due date” when I had first looked to find what might be my due date.
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Baby E with the presents my kiddos couldn’t wait to buy him! |
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E and his beautiful mom, my friend, Amy |
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Me snuggling with my buddy |
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Almost 2! |
Ten years have passed since all this - almost eleven now. I have no idea who that child would have been in our family: Son #2? Daughter #1? I’ll never know, this side of Heaven. I wanted to know, at first. Now, all these years later, it’s ok that I don’t know.
There are times, when all is quiet, and a million thoughts are not swimming through my mind, when I’ll still wonder what our family might have been like, if we’d been blessed with that child’s life outside the womb. And in those times, there is always peace. I think it’s God’s way of letting me know that truly, His plans were the best.
Since that miscarriage, I’ve met many other moms who have suffered one or more miscarriages. Compared to some, my loss was quite simple - moderately painless physically, taking place very early in my pregnancy. No one discounts the mental and emotional toll this took, but I know others have had much more trying situations. I’ve been able to share with other moms going through this, that I can relate - that I’ve been through the same thing, even though circumstances are different. Often, it helps to know that someone else understands. I have tried my best to be supportive of others in this situation - to pray for, encourage, check on, love them. I’ve worked to listen, to let them cry, to hold a hand.
Through those situations, I’ve thanked God for allowing me to use my experience to help someone else. Miscarriages are not as taboo as they used to be, but it’s still not something that people openly discuss, so finding a listening ear can be tough.
Each year, on February 19th, I take a moment - just a moment - to remember that we had a baby who would have joined our family around that time. It’s always with a twinge of sadness that I remember we lost one, but there is always peace.
For many years, my story ended there. And honestly, it’s a good story, as it sits right here. There are some more details that are not here, because they are more personal - quiet chats with Tim, a very kind doctor, a special gift that occurred, despite knowing we’d lost our baby. But the story, as it is here, is a wonderful story about how God gave me opportunities to help others who have struggled through miscarriage as well. I’m grateful for those opportunities and for others who reached out to help me as well.
But the story doesn’t end there. This story, right here, makes me happy.
The rest of the story? A matchless gift! Come back to read the next segment tomorrow.
*Does not seem comfortable in his body.
*Drew a picture but no ground line; his drawing isn’t grounded & that means he doesn’t feel grounded.
*Lacks eye contact
*Body seems very weak.
We ran into the same psychologist yesterday while at therapy. He was there to do an evaluation for another family and so I interrupted Picasso’s session so that he could say hi. Oddly, despite all the work our guy had to do with the psychologist, he really liked him! Hence, the interruption to say hello. After a 5-minute conversation, this is what he had to say:
*Amazingly comfortable in his own skin!
*So glad to hear that he’s including the necessary ground line in his drawings.
*Wow! That eye contact was awesome!
*Look how strong he is!
The quote got me thinking - and I think I agree. (Although, I’m really not very philosophical; I’m more of a “face-value” kind of person.)
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Click on the picture if you want to see it larger. |
So there it is. I have a lot of other thoughts on this, based on my religious background. But as it pertains to this particular quote, people I’ve talked to in life don’t seem to be looking for a “philosophical” reason for life so much as they seem to want the experience the fullness of life.
Any thoughts? I’d love to hear your perspective.
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However, we got ONE positive bit of help out of this evaluation. Well, two. One - there is nothing wrong with his hearing. And two - We should try assisted listening devices in large crowds. Church is usually the only place we’re in large crowds (although, I could see this being beneficial at the grocery store and mall, etc.). This morning we plugged into the sound system at church and had Picasso wear some headphones for the time he was in church.
However, in order to get to that point, we spent a week at home, preparing him. We explained (again) how his ears work differently than ours. He seems to hear all sound evenly and cannot differentiate between noises he hears, and in a group of about 150, this is REALLY difficult. Imagine hearing everyone talking, taking off coats, shuffling in seats, etc - 150 sounds at the same time. It’s no wonder he’s exhausted when we get home from church. So the thinking was that the headphones would help eliminate some of the extra sounds around him, and keep him focused on what was hooked up to microphones - in other words, help him to focus on what he *should* hear, rather than focused on all he *can/does* hear.
So today, we plugged into the sound system and sat in the back row. Usually in church, we sit near the back, in case there’s need for a “quick getaway” / meltdown that necessitates a quick escape. He often will “hide” on the floor with a coloring book or paper to draw with. Even if he stands up to sing with us, it doesn’t last long and he quickly retreats to the safety of the floor.
This morning he sang the first song, shook hands with people, sang another song, and parts of others. He commented several times how quiet things were and how much better things seemed. But the singing - I hear him sing a lot at home, and I know he sings in some of the smaller group settings he goes to (Sunday school, children’s church), but this was such a blessing!
We’ll continue this for the next few weeks, and see how he’s feeling. I’m grateful that it was a great first try this week!
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See? A crown, some jewels, a royal pet (dog, of course!) |
We often have many fun conversations with her - about princesses, and magic wands, and beautiful princess slippers, and ball gowns and … you get the idea.
Last night, when I went to tuck her in, I was leaning over her bed saying some of the things I often whisper in her ear. Now sometimes, she’ll wake up & respond, or we’ll snuggle on her bed for a bit. She loves that and makes me promise to talk to her just a little before I go to bed at night. I promise, but I will whisper, hoping she won’t wake up but will keep sleeping quietly.
Last night, as I covered her up, and rearranged the many - too many? - stuffed animals and blankets and books and slippers and robes and pillows, and … you get the idea … that she had in bed with her, I started my “nighttime conversation” with her.
I love you.
Sleep well.
Stay warm.
Only Jesus loves you more than I do.
She rolled over but had not woken up so I was pretty sure I was successful in conversing without waking her up. Hooray!
Her water bottle was empty so I took it to fill it up (well, really only about one quarter of the way full because she wants water but never drinks much).
When I came back, I tucked her water bottle back into the little pillow she has set up to hold it. I kissed her one more time. I felt that it would be safe to tell her one more thing because she had stayed asleep while I tucked her in just a moment ago.
One more kiss for her, along with, “You’re the prettiest girl I know!”
Eyes open, big hug and kiss.
“Thanks, Mom!”
And with that, back to sleep.
That’s not the world-rocking to which I refer.
What I’m talking about is more like an earthquake - the world rattles and things get shaken up. Yeah, that’s what I’m talkin’ about - last year our little world got shaken up. I’ve never been to more appointments in my life. And if I remember correctly, not a one of them was for me. 3 kids went to 12 appointments with the pediatrician, 11 or 12 dental & orthodontist appointments, several appointments to the eye doctor, therapy - and then *more* therapy, developmental pediatrician, audiologist, to get blood drawn. And those are just the ones I can remember on the spur of the moment. We met new therapists, experienced different doctors, had more things to worry about than any other year before.
I’m tired. That’s actually a step up from exhausted, which was a step up from “can’t-put-one-foot-in-front-of-the-other-one-more-time.” Tired is not too bad!
And then came the new year. I knew I wanted to tackle this year differently - be more focused rather than feeling so reactionary. I have plans for this year. I plan to do more than “exist to drive to the next appointment”. I’ve planned things I want to do. No real big plans, but last year, I gave up on plans.
I’ve lived through the ups & downs and ins and outs of the last year.
As I consider the year ahead, as I’ve made a few plans (because I’m still too scared to make “many” plans), I’m starting to realize a common thread among the plans.
We spent 5 years asking all the right questions, but we didn’t get any answers. Or we got wrong answers.
*Parent Better
*Teach the Rules
*Punish Inappropriate Behavior
*He’s being mean to his friends and you need to do something about it
*He’s not playing appropriately
*And from a “professional” at his school: This is what we think is wrong with him, and you need to probably treat him as such, even though you’ve *never* had a medical/psychological professional agree with you on this point.
And so we got answers. We paid out of pocket for an OT evaluation, from a trusted and respected center, which led to a lot of answers. Sensory issues. Many of them. Over-sensitive in some areas, under-sensitive in other areas. Issues typical to kids with spectrum disorders, but also very much a stand-alone issue, not related to Autism Spectrum Disorder.
Know what the school said?
“This can’t possibly be right; we’ve never heard of this before.”
And so my kid continued to struggle there for a few more months.
We fought almost daily, he and I.
I didn’t understand that he was on edge all day long.
I dreaded pick up time. Every day. There were many negatives. There were rarely positives.
I should have pulled him as soon as I realized that they weren’t going to work with me…but that would have been more detrimental to him.
We pushed more & just recently got him a diagnosis of Asperger Syndrome.
Know who TRULY agrees with that diagnosis in the medical & professional world?
No one.
That’s right. Not *one* person in the medical or psychology field truly agrees with that diagnosis.
Why does he have it?
Because it’s the best diagnosis to make sure that he gets the appropriate therapies he needs.
Because while it’s not “perfect” it definitely fits.
Because while it doesn’t “perfectly fit”, it covers the issues with which he struggles.
Because his “quirky little habits” are just quirky enough.
Because he meets a good bit of the criteria for that diagnosis, but definitely not all of it - at least, not according to the medical and psychological professionals…PROFESSIONALS.
While we’ve fought medical people, knowing there was something “off” about our son, the biggest fight came from a school. A preschool.
It’s been 2 years since we began the journey of getting help for our son.
It’s been (just over) 2 years since we found the perfect doctor for our son.
It’s been 2 years since those who had an opportunity to help our son, chose not to understand or help our son as well as they could have.
It’s been 2 years since I learned that advocating for our son would almost always mean not backing down when someone disagrees, and pushing until someone listened.
Our son is thriving today, because we listened, from the beginning, to our own hearts. Because we kept asking questions in hopes of getting answers. And when we got answers, we didn’t say “That’s not possible because we’ve never heard of it,” but rather, “We’ll try whatever you suggest in hopes of helping our son.”
I’ve learned that helping a child always benefits the child more than trying to get them to conform to your standards and ideals. Always.
I'm Rebekah and I'm so glad you're here! I am on an adventure to live more boldly and to step outside my little "box" where all is safe and secure, and this writing is a big part of that adventure. I hope you can rest and find refreshment on your journey with Jesus as you visit this site. Read more about my journey....
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