June was not a good month. I should correct that, June was not a good month for this Momma, it was a pretty good month for Mr.B.
It's been a long year and by that I don't mean since Jan, I mean since last July that it's been a long year. Last July we had an admission that kicked off a seemingly non-stop stream of admissions that has just wound down as of this June. I didn't go back and count but I think that it was 10 admissions and 4 or 5 Emerge visits (that didn't end in admissions). For a one year period? That's a lot, even for B.
So why was June not a good month? Because there is this thing that medical/special needs parents get (at least the majority that I know) that is called the 'waiting game'. When you have multiple admissions (or even a nice long one) then you have a major transition back into your home 'life', then you have a grace period of 'happiness and normalcy' (whatever that looks like for your life)...and then the irrational (yes I'm aware of the irrational) fear of 'waiting for the other shoe to drop' begins.
When you have so many admissions your hormones (cortisol especially) are at a constant high and you (and by you I mean me) live in a state of fight or flight. Now, in all honesty, I've not left this state since B was born (or the terrifying 10 days before he was born rather). How do I know that I'm in this state? Multiple reasons but the main one is that even when B does sleep for a few hours consecutively (on the extremely rare occasion), I do not. I will wake after an appropriate amount of time and have a brief moment of irrational fear that if he's not woken me up. There must be a problem! Has he stopped breathing? I need to check! Of course he's alright, of course he's breathing (thank goodness) and of course the only problem is now that I'm awake! The other main problem that I have is that I can only sustain this 'living' for so long before something has to give. Inevitably I get sick but I've started taking care of myself SO well since January that I've not only not gotten sick in over 6 mths but I'm getting stronger, losing weight and building muscle! (Hurrah!) So what's left to give? My mental health took a beating instead.
My Mom was here in May which is a huge influx of support and my In-laws followed her less than a week. We had lots of extra help, support and love in the house for almost 5 weeks straight (which is amazing) but it did have to come to an end. Combine family leaving, mixed with overwhelming physical and emotional exhaustion, and a Momma in fight or flight and you get depression. Now I don't say this lightly and I don't say this to worry anyone (I truly am fine) but I do know the harsh road of depression and I do know myself (when I'm willing to admit it).
I'm not at all ashamed to admit that I've had issues with depression in my past (my longest 'episode' was over two years in my late 20's). I've done medication, therapy and have gotten to know myself damn well (not all of it necessarily positive). What I do know is that as a medical parent and a special needs parent that I'm going to be more prone then ever to this brain imbalance. There are many factors that can trigger a new round of this lovely D-word for me but it's usually a combo of things.
I sit quietly and I wait for the dragon to come and either pull me down further (and realize that meds will once again be needed) or I sit on the dragon while she soars and is in control until finally she flies me back up above those awful clouds once more. (A wee look inside my head if you will)
B was (and still is) stable, the rest of the boys (hubby included) were (are) healthy and the weather was changing for the summer months. So why? Why now/then? Why not my body says, why not.
We got some 'new' news about B in June as well that just hit me hard. It's not life threatening but it pushed me to a breaking point (past that exhaustion that I don't like to admit). B's having issues with his phosphate being through the roof (we're trying to see if it is additional kidney issues and/or is he now leaching calcium from his bones to compensate) AND he's been diagnosed with bilateral Coxa Valga (hip angle). Neither of these are nearly as 'huge' as other discoveries but some days it's just hard. It's hard not knowing the future, it's hard not knowing what else is 'hiding' underneath that heart-melting smile and sometimes it's just simply hard being a Mom of a medical kiddo.
We had to go into Peter Lougheed Hospital for a quick in-patient last week to get a urine and blood draw back-to-back for the phosphate levels. Here I was thinking this would be a somewhat quick-ish trip...or not. It was simply very weird to have to go anywhere other than ACH for something but we had no desire to sit in ACH Emerge (and get bug exposure) for hours on end since the urine had to be a catheter. Three catheters and three blooming pokes later for blood and we were done (and Momma was ready to lose her sh*t). I try and try and TRY to lessen his medical 'traumas' but life just simply doesn't work that way for poor B.
June was also a rough month due to the fact that after a meeting with my oldest's Principal we came to the realization that our current (and much loved) school wasn't enough for us. My oldest needs more support in the classroom and the school we were at just simply can't offer it. It was an awful decision I had to make and it was not at ALL what I had intended with the meeting with the Principal! The decision to switch schools for Torin is one thing (obviously a no-brainer, the kid needs help!) but I agonized about 'making' Rylan switch schools. The guilt I have around Rylan having to make so many sacrifices in life already being a Neuro typical kid between his brothers is huge enough without adding this. My heart hurts for Rylan when I know that I have to make a decision that isn't in his best interest as well. Yes, for those of you that are saying you have to do what is best for the family as a whole, it's true but here is a child that is so very empathetic and caring and sweet that just wants to do everyday 7 yr old things and can't most days. This is a child that has already made countless sacrifices for his brothers and there will be many, many more. He's having to leave behind some friends that he's been in school with since he was 3, so it's hard. Yes, kids adapt. I do know all of this but please understand it doesn't lessen the guilt.
The hardest part about leaving the school also is for me. I'm leaving my safety net of my Mom-friends behind. These women know me, they know our story and they are there for me. I have 5 or so on speed dial when life goes sideways (like being stuck in Emerge with B with no way to leave or get Mike) to care for my children in a pinch. I know I'll make new friends but I struggle on how to describe our lives with those that already know us! (Apparently I'm somewhat full of excuses tonight!)
Speaking of losing friends, I'm also dealing with the heartbreak of having two of my most wonderful Calgary friends move away. (There will be a future post) My friend Rachel (and her hubby Nathan) have done more for us in the past two years that I've known them then I could even begin to count. As well as our family member and Torin's long-time Aide Kelsey has moved onto green pastures. (No wonder why I'm feeling sorry for myself!) Thank goodness for the internet and Skype!
|Our lovely Miss Kelsey|
|It's blurry only because we were laughing too hard! My darling friend Rachel|
All of my inherent woes aside...How is B you ask? B? Who's B? Bah ha, yes, I think I'm funny (even when no one else does). Mr.B is doing really well at being 2!
He is getting into pretty much anything and everything (it's a good thing he's not oral!) and he's getting really great at tantruming (which often makes us laugh, or pull out our hair, or both depending on the day). He is still getting stronger, working harder and pulling to a stand sometimes independently. On the exciting front we did get him fitted for and chose a 'walker' for him which will come to us sometime in the fall.
We are headed to ACH this week to have B fitted for his first set of AFOs (ankle/foot orthosis) as well. This should be an 'interesting' experience to say the least! We will try to go in with positive thoughts and hope for the best but it's hard to see B at all pumped about having his feet cast for the moulds.
It could very well be that part of the reason that June was also a pretty rough month was due to the fact that B's sleep took a strong downwards turn again. He is back to having his 20 min sleeps (wakes every 20mins the entire night screaming) several times a week (we had it down to only once or twice while the other nights he could go for 2-3 hrs). It is very rough on this Momma, even with help during the day. It is very hard to be positive and a good parent when all you can do is try to function some days. We are still seeing the Sleep Psychologist and the Sleep Dr over at ACH and trying to find a solution (ANY solution) but so far we are coming up with nothing. We even trialed B on a sleeping pill (given via g-tube) and it did the opposite affect! Instead of a nice deep sleep I had a 2 yr old doing spins in his crib for two hours! Ack. The mysteries of the B.
However! Summer is finally here and we are spending as much time outside as we can (when it's not too hot). Nothing in this world makes B happier than being out in nature, nothing. When he's in his chair he has a very distinct need to be in motion (and gets very annoyed when stopped) and waves his hands and feet around whilst singing away! I try to get him out for a minimum of a 1/2 hr walk each and everyday as it's a stress release for both of us!
The beginning of July has been a busy few weeks with swimming lessons each day for the big boys in our local outdoor pool and getting to all of the appointments for B. We have had some time to do some fun things however. We were able to take in some fun and sights at the ECL Choppers Ride for Charity at the Rotary Flames House (Paliative and Respite care centre for B). We met some lovely people, who oddly enough were enamoured with our B, and got some great shots of the kids on and around some bikes. That same day we walked across the street to ACH to find the Stampeders in residence for their annual visit (although they do so much more than that) before their opening game. The big boys had a blast hangin' with the big dudes again this year. We also took the time (and were able thankfully) to take in the annual pre-Stampede parade at ACH. Every year the Calgary Stampede puts on a mini-parade at the hospital for our medical kiddos and inpatients. It is a fantastic event for families that want a taste of the Stampede without all of the craziness that goes with the actual Stampede Parade.
|On our new friend John's bike (Fitz Flooring)|
The big kids and I decided to take in Stampede this year in the evening for the first time last night. We left B and Daddy at home and headed downtown at 7pm. We didn't actually even enter the park until after 8:30 with having to park the van and get into the park (I live only a 15min drive from downtown) but the kids were excited and they were troupers. We spent far too much money (which is why it is only a once a year event) and they ate far too much crap (the only day of the year they are allowed to) and had a great time, just the three of us. Our two counter parts were missed but without them we were able to stay and see the nightly fireworks and leave the park just shy of midnight. My big boys felt so grown up staying up so late for the first time in their lives! :) Life is all about making memories to see us through the hard times.
There doesn't seem to be much in the way of a lazy summer for us ahead but we are making the most of it. The plan is to hit BC and the West Coast at some point (depending on B) so you'll pretty much know when I do.
From Our Home to Yours...