The Good the Bad and the Ugly

I always procrastinate writing these posts, but I know it wouldn't be true to myself or to other parents that may be going through the same thing if I only show our life through rose colored glasses. 

We'll start with the good, because that's always easier to get out...

Some good things have happened lately.  Lillian's energy has been great since we upped her Carnitine dose (for the first time in a year) and her growth hormones from .6 to .7.  She's standing independently for up to a minute ALL BY HERSELF!  She will pull up and then let go and stand there, usually holding something in her hands, but sometimes just standing there like "hello, look at my new balance trick!"  She's cruising furniture which is her new thing this week.  She side steps all around our sectional couch, her baby gate, her crib, the laundry basket, around corners, whatever she can. 

She's imitating more signs, her new one is "dog".  Today she did a sign for the first time without imitating.  She signed "please" and then pointed to the toy she wanted me to give her.  I'm so thrilled that she's communicating!  She hasn't been saying any words lately.  She never repeated the ones she said a few weeks ago either.  It's hard to feel like we're taking steps back in communication, so I was glad to have the signing pick up this week.  She signed dog, pointed to a dog in a book, pointed to a cat in a book when asked, and  has been showing her receptive language is really improving.  She understands more than we give her credit for.

We went to the orthopedist yesterday to have her spine x-rayed and to talk about treatment for scoliosis and kyphosis.  The doctor went over her x-rays from December, took a look at her back, and said to me "I think her kyphosis has gotten worse."  He sent us for x-rays and when we looked them over, it had actually gotten BETTER!  Her kyphosis had improved 2 degrees and we're both pretty sure all the standing she's doing is really helping.  Her kyphosis is located in the lower part of her back, so the more she stands the more it will correct it.  We're going back in 3 months and if it's better, great, if it's worse, we're going to brace her.

I think that's most of the good, so we'll move on to the bad.

We started swim classes last week.  This is for the most part a good thing, but the first class was nothing like I expected.  In my naive mind I thought putting Lillian in a class for babies 6-36 months would mean I wouldn't have to explain her delays.  I thought that with that kind of range in age, she would just blend in.  I didn't realize that the first class would only have 3 babies (two 10 month olds and then Lillian at 17 months) and an old loud mouthed annoying swim instructor.  I didn't realize the 10 month olds would be bypassing Lillian.  I didn't realize the teacher was going to compare my daughter to the babies that could do things she obviously couldn't.

I can't tell you how many times I bit my tongue while I heard "Lillian, watch (insert other baby's name), they're doing it." Or "Lillian, do (insert request), why don't you (insert request)? Watch, (insert other baby's name) do it, they can do it."

Finally towards the end of the class I found myself saying "I don't think she's going to do it" in a tone that was warning the woman to shut the hell up and quit comparing my daughter to the child that is 9 months younger than her and has obviously been through this class once before. 

Unfortunately, to avoid going through this week after week, I had to do what I didn't think I would have to do.  I had to tell her my daughter has low muscle tone.  She's developmentally delayed.  She has a syndrome and I can't just simply expect her to catch on to the class as quickly as some of the other kids. 

I don't know why it bothered me so much to have to tell this lady that my daughter has a syndrome, but for heavens sakes, why did she have to keep comparing the kids?  I thought this class was for fun. I didn't realize we were training to be the next Michael Phelps.

Anyway, sorry to drag that story out, but it really sucked.  The next class was twice as large and there was less attention on Lillian and I never had to bring up her delays.  The class after that was good too.  Of course there's one really smug mom with her 18 month old daughter that's already swimming laps, jumping off the side of the pool, and clearly does everything the "best" which makes her mother Oh so f@#$%-ing happy.

I know she doesn't mean to rub it in.  But it hurts.  And it's totally my own fault for letting it hurt, not hers.  She's not doing anything wrong by enjoying her amazingly advanced daughter.  It's just hard to see what I thought my life would be like, when in reality it's so so so different.  It will come eventually, just not as easily. Never as easily.

And now for the ugly... as if the bad wasn't ugly enough.

I'm so emotional.  And it's slapping me in the face when least expected. Walking through the children's hospital yesterday the Life Line crew in their jumpsuits came walking towards me with a newborn baby in the life line incubator (or whatever it's called).   It's the little enclosed bed they put a baby in when they fly them from one hospital to the children's hospital via helicopter. 

All these memories came flashing back of the day they took Lillian from us.  I remember saying goodbye after she spent 10 months in my body and 2 days in the special care nursery at our local hospital.  They took her on the helicopter and left us behind.  It was the worst day of my life.  I don't remember anything else about those two days following her birth.  All I remember is delivering her, holding her for a minute or two, and then everything is a blur.  I don't remember visitors, I don't remember nurses, I don't remember any time bonding with her until I was at the NICU later that same afternoon when they took her from us. 

I don't know what to do about that loss of time.  It just makes me so incredibly sad.

I had a dream last night that I was about to give birth to our little boy and the doctor came in and said they had something to tell us.  Our son had an illness they found on an ultrasound and they would have to take him immediately after he's born.  He told us they would give us more information later about what we should expect, and he gave us the name of the illness to research on our own in the meantime.

I know it's just a dream.  And I know our baby is probably fine.  I'm not really worried that something might be wrong with this baby or that they will take him from us after he's born.  I don't *think* we'll have a repeat birth experience.  But I'm obviously still grieving and I seem to be having trouble telling my subconscious to shut the hell up and leave me alone. 

I just want to enjoy this pregnancy, enjoy the birth, and enjoy life.  Is that really too much to ask?  Can I get an emotional break?


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  1. You are such a strong woman and amazing mom.

  2. Like the weather, 2 degrees either way does matter.

    I am really enjoying this first reading of your blog.

    (Hopefully in other circumstances, you might not have been that smug mum!)

    It would be good for swimming teachers to read this, to see that that is not the way to talk TO or ABOUT somebody with delays in their class.

  3. (hugs) to you. positive thoughts.......

  4. ((Hugs)) I totally understand. I've been having a really hard time dealing with our delays lately and I know it's only going to get worse as she gets older and is delayed in more areas. Message me on fb if you need to talk. Love and prayers, Judy F.

  5. Can I just send a hug over the blog to you? You are SUCH a strong woman and a great, great momma. It isn't easy being a parent of a child with special needs, and somedays you'll probably think (I didn't choose this struggle for my daughter) but I know from working with lots and lots of families of kids with special needs that God really doesn't choose people who can't handle it. And you prove that to me :) Keep on smiling momma :)

  6. You are am amazing Momma and The Ugly...Well it made me tear up remembering you talking about it so I can't even imagine how you felt going through the motions.

    Huge hugs to you. xoxoxoxoxoxox

  7. I am glad swim classes got better! I cannot imagine an 18month old jumping off the deck and swimming laps, is the child's mother a dolphin??!!

    And the Ugly made me tear up to. ((HUGS))

  8. This brought me to tears. Lillian is such a sweet girl and is so bright! SOO SOO BRIGHT!

    You and Phil are AMAZING parents.

  9. Lillian may not be swimming laps around the pool(yet) but she (and you) did change the world a little bit that day by educating a swim teacher on the importance of embracing all of us as individuals. Enjoy Lillian and your pregnancy, you are destined for great things!

  10. Oh, Sarah. I SO get it. Absolutely get it.

    And you were a lot nicer to the swim coach than she deserved.

  11. Lillian's doing so great with communicating! I remember the feeling we were losing skills, but it all does come together, and signing really reinforces speech. And I too struggled with some worry about the next pregnancy. It's hard not to relive it all...but the joy I felt when my third was born was the greatest I've ever experienced. Hang in there! (I love your honesty by the way).

  12. When I was pregnant with Lucy I couldn't stop worrying! If it wasn't worrying about the new baby, it was worrying about Isaac and all that he had going on. I think having such a traumatic first birth really does throw you into the PTSD realm with your second. That topped off with hormones makes for one stressed out mama! It sounds like Lillian is doing so wonderfully! Sorry the swim class sucked - hope it continues to get better!



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