Saethre-Chotzen Syndrome

Dear Nurse D and Doctor C

~ Mumsgoneclimbing ~ Leave a comment

Thankyou. From the bottom of my heart and more then you will ever realise…THANKYOU. Today you took the time, and little as it was, it was so very precious. You took the time to see our son as a person, not just a patient. 

Because, Nurse D and Doctor C, when we pulled up in this hospital carpark what did I see? I saw my son’s face turn to fear, tears fill his eyes, his lips tremble and his fists clench. For the hundredth time my heart broke for him and broke because I could not protect him from this fear, could not protect him from why it is here.

IMG_3633_fotorThen Nurse D and Doctor C you took the time. You became his friend, you paid attention to his boundaries, you spoke with him of Pooh bear and his favourite park, about his birthday and his party, you made a game of all that had to be done and you invited him to be part of it.

So now he is telling us a story, in the elaborate miming way he does, of the visit we had. Of a nurse with tickle stickers attached to colourful cords and a doctor with a little bear who helps him treat patients. Then inevitably about the park we visited after we saw you, prioritys don’t change after all.

Nurse D and Doctor C

THANK YOU

The Magic of Development Delays

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For quite a while I have wanted to write a post about how development delays create an emotional struggle within parents, more specifically within myself. For any parent there are days that are a complete struggle. Now add to that seeing four different therapists in the last two weeks, tracking while not judging every move your child makes, knowing that no matter what well meaning friends say your child is behind…they do things differently…there are challenges only they will face, struggling because your toddler hasn’t said any new words for 8 months yet they understand a billion new concepts, being a total helicopter parent even though you would really rather not…fact is your child just needs more help, and seeing that confused look from inquiring parents at the park “how old is he? oh… same as mine.” To be honest some days feel like poop, some days you wonder if they will ever move forward, some days you cry.

IMG_2997_fotorThen some days… the magic happens.

The last month has held some wonderful development leaps for our little guy. It is the most freakin AMAZING feeling to see him discover another layer of being. I can not really explain how elated you feel when missing pieces of the puzzle begin to fall into place for your child. Yes all parents get this joy when their child reaches a milestone, but for parents of children with delays it is different.

It is different because for months, or even years, you have been watching for certain behaviour. You have been watching because you are highly aware and knowledgable due to the countless therapy sessions you have attended and articles you have scoured. Then BOOM there it is!!! and like a waterfall affect 50 more things fall into place, because that is how we learn. One foot in front of the other, one process leads to the next, the metamorphosis has a cycle.

Oh holy cow it just makes you so damn happy! Picture me skipping around the beach, ridiculously heavily pregnant, following my little man who has all of a sudden become focused on digging, tipping, pouring, sorting, posting!!OH MY!! We fill bottles in the ocean then run back to collect shells, he sits engrossed in play for an hour. A FREAKIN HOUR! A whole hour of focus where I haven’t needed to console him, save him from drowning or entertain him. No, we have just explored and played and felt joy.

IMG_3173_fotorThen this week NEW WORDS!!!! What the? did you just say? Oh gosh you did and look you said it again and that is a sound you have never made and there is two more words that sound similar and you are using them correctly and LOOK AT YOUR SMILE!

I know all parents have felt the joy, but I am sorry… it is not the same. So to all those out there who have struggled through the emotions of development delays, HOORAY TO YOU. Hooray to those moments when your heart swells and it swells for your children who LIGHT UP with the new discovery that has come to them with more time and effort then others realise exists.

These are the days when magic happens.

IMG_2974_fotor

Hitting a medical storm

~ Mumsgoneclimbing ~ 2 Comments

The 20th of March was Boston’s two year cranioversary, two years since his big operation that went really well. What an amazing two years it has been, dotted with new experiences, awesome achievements and very little in the way of big scary medical stuff. The 20th of March was also the day we found out there is a whole lot of that big scary medical stuff on the horizon, including another cranial vault reconstruction.

In paediatric intensive care unit after his first cranial vault reconstruction in 2013
In paediatric intensive care unit after his first cranial vault reconstruction in 2013

I recently wrote a post about The Ocean of Emotions that we ride as part of Boston’s journey with Saethre-Chotzen Syndrome. I talked about the tidal wave that had just hit and how it can be overwhelming. Now I feel like we’ve moved from tidal wave to some sort of roughest seas on earth situation, where the waves are MASSIVE all the time and you just sort of begin to feel immune.

SPLASH yup there is intracranial pressure and Boston’s brain is too big for his skull….SPLASH we must create more room so another cranio reconstruction surgery needs to happen in the next two months, sorry what? your second baby is due in two months?…SPLASH we have to cut the really successful silicon sling that holds his droopy eye open, so there is another surgery that will need to be redone….SPLASH we need an MRI under anaesthetic before then and observations by the neurosurgical team…SPLASH also something strange is going on in this part of his head, maybe it is also affecting his spine. OKAY OKAY I am freaking drenched already!!

A little swollen after day surgery to insert a silicon sling above his eye. You can see the little anchor point dimples
A little swollen after day surgery to insert a silicon sling above his eye. You can see the little anchor point dimples

In my head that is what the meeting felt like. In reality everyone present was really supportive, helpful and positive…we even had a few jokes to lighten the mood. After two years of relative calm it feels like the next six months could hold the mother storm, in my heart I know it won’t really be that bad, after all everyone has the ability to find happiness no matter the situation we are facing.

Already as this new challenge begins I find myself being motivated to reach out to other members of the rare disease and craniosynostosis community. My thirst for knowledge surrounding these challenges is uncovering new information and building a better understanding of what our son will go through. We’ve been brainstorming how to navigate the rough seas in the most efficient, relaxed and positive way. Reaching out to family and friends, making lists and checking them twice, finding time to meditate and reflect. Reminding ourselves that through this time we will be guiding Boston on his journey but we will also be welcoming our newest arrival earth side.

I guess what I am getting at is for those who feel like the sea is just too darn rough and you are drenched to the bone and…lets face it… sometimes you feel like telling the world to GO GET PLUCKED…there is always a silver lining (for crying out loud there MUST be)… and maybe it is just time to build a bigger boat.

That is the bit of inspiration I am selling, and I am sticking with it 😉

A nice reminder of how quickly we heal. This is a couple of weeks after major surgery
A nice reminder of how quickly we heal. This is a couple of weeks after major surgery