Just a Little Venting

You know, I’ve been through a lot in my life: the death of my first-born son, multiple pregnancy losses, learning to cope with challenges and limitations of a chromosomal defect that caused the aforementioned issues and some other experiences in my past that I never talk about.  Everybody has their battles and their own coping mechanisms and just like most, I’ve learned to deal them, but that’s not to say they don’t have lasting effects in my daily life even decades later.  I’m sure it’s a form of PTSD, but I do battle anxiety issues.  I will obsess about minor issues and beat myself up (internally) about them.  I’ll expect the worst in any situation.  I’ll spend an unreasonable amount of time thinking and analyzing and formulating worst-case-scenarios.  I’m my own worst critic.  I doubt myself.  I’ll make a mountain out of a mole hill.  I’m fidgety.  Sometimes its hard for me to connect with people.  It affects all aspects of my life.  I have bad days, but more good days.

Today has been a bad day.

I’ve been feeling it build for the past few days.  It started with renewed worry about Drew’s new thumb.  With all of the craziness of the surgeries, pain, sleepless nights, therapy, etc. his hand kind of got lost in the mix.  We unintentionally abandoned his daily thumb exercises being overwhelmed with everything else going on.  I’ve neglected placing his hand brace during the sleeping hours.  His scar is looking tight and raised, not a good thing when scars are close to joints which can cause range of motion limitations.

We massaged his scar until it looked matured per the therapist’s instructions and it was good-looking and subtle so we stopped as instructed.  But, I’ve noticed in the last few weeks that his scar has changed into the raised tight scar I mentioned.  Maybe we did stop a little too early, but I do think that Drew has some weird scar issue going on.  Any new scar that he’s acquired since 2014 has ended up being red, raised keloid scars.  All scars acquired before 2014 are nice and light-toned, smooth.

Luckily, his physical therapist here reassured us it’s not too late to begin massaging it with lotion again, but I have renewed anxiety in returning to Drew’s hand surgeon/therapist and coming to terms with their disappointment in our failure to properly tend to Drew’s needs.  I feel like I’ve thrown a big can of paint on a precious irreplaceable painting.

In addition to that scar concern, his newest scars acquired during this summer’s leg correction surgeries – the ones that go from his hip down to below his knee – look gnarly.  They’re still fairly new so they look really bad now and will probably evolve over time, hopefully to the better, but I inquired about why Drew’s scar is so dark and splotchty.  He’s got these dark red, almost black, patchy splotches throughout his scars.  The therapist seems to think they’re getting sunburned and it hits me like a ton of bricks.  I haven’t been applying sunscreen the last few times we went swimming because he never seemed to burn in the sun.  What an IDIOT I have been for not being vigilant anyway.  Of course scars burn easier and they have to be specially treated; everybody knows this.  Imagine me as OITNB’s Crazy Eyes pounding her head repeatedly.

Aside from that, I haven’t as consistently sat Drew down to work on improvised school work as I planned.  Having missed the last two weeks of 2nd grade and going to miss the first month of 3rd, it was important to me that he not get too far behind in discipline and knowledge so I purchased some grammar, reading comprehension, math and writing scholastic workbooks with intentions of doing a page from each book once a day.  But, at best, it’s been every other day….sometimes two.  What can I say, it’s been really overwhelming.  I know each of you (if anybody still reads this blog other that myself) are probably thinking, “Janel, just the fact that you do it every other day is admirable and you are doing great!” But, the fact remains that I have my own expectations and goals for myself and I’m not meeting them, I’m doing LESS than expected.  I’m not trying to be super mom here with the cute apron, high heels, dressed to kill and organic food and Monstessori (see, I don’t even know how to spell it) toys, I’m just trying to address basic foundation skills and needs for Drew.  I don’t do enough school exercises and Drew struggles in his school work and performs lower than he could if I would have done better.

And, let’s not forget this limb length discrepancy issue I’ve been moaning about lately…

I’ve been trying to pretend Drew didn’t have a limb length discrepancy because the thought of additional surgery is utterly exhausting.  But, during therapy, it is evident that it’s hindering his ability to stand and walk with the lopsidedness.  He’s also more frequently complaining of pain in the knee of the longer leg which makes sense when you consider the additional stress on the knee joint when cocking the leg outwards to compensate.

So, we had x-rays to begin the process of getting a much needed shoe lift made to help.  The length difference, according to the x-ray, was 1.5 centimeters which surprised me because it was smaller than I expected.  However, I am afraid they did the x-ray wrong because they had him stand in his lopsided glory so I am going to press this issue to ensure the difference was accurately measured.  Even the therapist thought the 1.5 centimeters was to little.

In my anxiety pondering how this will impact Drew, I did the only thing one does in this internet-dependent age and googled limb length deficiency 1.5 centimeters.  Why Google?!? Why must we punish ourselves like this?  Turns out, limb length discrpencies of this measurement put the other limb at a much higher risk of fracture, hip problems, foot deformity issues, and even arthritis!  So, I guess I can no longer pretend it doesn’t exist.

We’ve already bought a new pair of shoes and retrieved a prescription for a shoe lift.  Most of you parents scoff at spending a ton of money on a pair of shoes that your little will surely outgrow in the blink of an eye, but just imagine having that knowledge AND needing to take the shoe to a place where they’ll slice the sole of the brand new shoe in half lengthwise, glue a lift to it, reglue the original sole to the lift….well, that pretty much renders the shoe unreturnable and I can’t even resell them at a yard sale or pass them down to little brother.

So, it’s been a pretty bad week.  Bad days/weeks are normal and it will swing back up before I know it.  I’m just going to hang on until it does so don’t worry about me.  That’s the thing about bad days 🙂

 

2 Comments Add yours

  1. Nathalia W says:

    Oh sweetheart! You are doing amazingly well! You are such a good mother and care so much for your family. They are lucky to have you. Don’t beat yourself up, we can’t be perfect and it is exhausting mentally being on top of things when there is so much going on. You are doing the best that you can for Drew. Don’t forget that! He knows it too. We all have days like that. I have a surgery that I should be booking for Frederick but am procrastinating because I don’t want to think about it. Lots of love to you supermom! Cause that is what you are! Xxx

  2. Ge-Ge Ramage says:

    Believe it or not I really think you are a super mom. You must be exhausted and some days I am sure you just want to build your fort and tell everyone where they can go. As for school work and everything else you can’t change the past and beating yourself up will not help either. Just pull yourself up and strive to do better from here on out. Good job mom

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