Looking back

As I watched the moonlight stream through the curtains as I lay on the floor next to Roo's bed my mind started to look back on the past year. It's been a rollercoaster of a year with emotions everywhere.

The amount of appointments we had over the year was ridiculous, little did we know how much those appointments would literally take over our lives as no longer we had one child with needs, we now had two and there were many times it felt overwhelming esp the month where we had a record 25 appointments between us all! Some days we had 3 different appointments at different places so it was maniac with us rushing from one place to the other...this year I have decided that if we get too many appointments in a week I'm going to move some to a later date , spread them out a bit as it will be less stressful, less pressure on me.

April saw us finally getting a possible result from the DDD study after 4.5yrs on it, 6 yrs since we started the genetic testing. But it was a bittersweet moment as it didn't give us the answers we desperately wanted,it raised more questions and as it's so rare  that hardly anything is known about it we have been told we have to wait possibly months or a  year before they can tell us if it's a definite diagnosis for Roo and what it means for his future.

September saw us getting a diagnosis for Faith too that explained her deafness, her unique eyes etc Waardenberg Syndrome is classed as a rare syndrome even though there are quite a few people all over the world who have it. Never ever did I think I would have two kids with rare syndromes! Faith diagnosis also led to a clinical diagnosis for myself which was a surprise and I've yet to decide if I want to undergo genetic testing myself. Our other children will need to be tested to see if they are carriers but I will leave that up to them when they are adults if they want to know or not.

It was also the year I embarked on my own journey to get a CI to enable me to hear the world...the success of that operation and the switch on led me to believe that I was making the right decision for Faith to undergo the same journey as myself as she was not getting any benefits from her hearing aids and her speech was getting more and more delayed. She has done amazingly since her switch on which has eased my mind that we made the right decision.

It was the year that we saw many changes in Roo thanks to his sister who has helped him to come out of his shell a bit...he has learned to play with toys more, to be more affectionate, to talk more, having a younger sister has also let him experience new feelings that he hasn't really experienced before like a hint of jealousy, not wanting to share his things, taking things off her, fighting with her over toys! It may seem strange that we are so pleased to see all this as it's something we didn't think Roo would ever do as he didn't do it with his older brothers. Having a younger sibling has help him to push himself out of his comfort zone. Also we saw Faith make huge leaps in her development, proving some professionals wrong in that she was delayed all over but we now know she is only delayed in communication and speech due to her deafness.

It's also been a year where hubby and I have had to deal with depression amongst other things but with support we have gotten through it, respite has been fully restored after having it reduced during a difficult time thanks to a new carer who is absolutely fantastic with Roo and enabled us to spend time with the other kids or even to just grab 40winks!

Sleep is still an ongoing issue, now Faith has decided to follow her brother's footsteps as she struggles to sleep too! It's been hard and a massive struggle having two kids who have sleep issues..some days I barely can function but I push on as my kids need me. I crash when my hubby gets home from work..Maybe this will be the year they sleep a bit better? One can only hope!!

We have already started the appointments and have many more to come, diary is starting to fill up and more appointments are on the way due to all the referrals made at the end of last year but hopefully they will all benefit the kids in the long run. I have decided to be more organised this year by having a diary and calender to keep track of all the appointments, meetings, letters , emails etc as last year saw me missing some appointments!! 

So much more has happened but I'm not going to go into it all but I believe the past year has made me focus on the positive things, to try and improve , to have more focus on myself so that I'm not just a mum/carer. I am determined that this year we will make plenty of memories, focus more on the positives and deal the negatives with a positive attitude.