Saturday, 20 June 2015

Depression kicks you in the teeth

Patty cake patty cake bakers men
Put my mommy together again
Kiss her, pat her, mark her with "OK"
And help her smile sincerely today

I don't know where it springs up from.  I don't know why it hits so hard.  I don't know why, when I have such amazing little boys that smile at me, that need me, that make my world so beautiful, that I feel like crying.  Most days it's just a fleeting moment.  Some days it will last through the morning.

Today Alex has declared me a robot with a box on my hand.  He just gave himself a banana trophy for being a giraffe that locked up monsters in his room -Then he married a T-rex.  As I write, we are trying on fake mustaches.

As quickly as I felt that swift kick in the teeth, a switch is flipped and the weight is gone.  The sadness, the pain, the forced smiles all dissipate and I feel more like the self I use to be.  The person I was before my life of doctors appointments, home visits, sleepless nights, google obsessions and anxious overtones came to be.  These things are still there, in the background, but for a moment I allow myself to forget, to relax and enjoy myself with sincerity.  I thank God for these moments.      

Friday, 19 June 2015

Happy Birthday Alexander!

My beautiful little boy has turned 3!

Today we had some of Alex's friends and his cousin over for a little birthday party.  It was so nice to have a day all about him.  Most days when someone comes to visit the house, it's to come see Gideon.  OT, PT, Speech, Low Vision, Dietitian, Infant Development... Alex always feels left out.  Having people over to see him and celebrate his special day was just icing on the cake!

I often sit with Alex and flip through the flyers that come in the mail.  I try and introduce new vocab and do some letter and number recognition.  About a month ago we came across a picture of a pinata in a bulk food flyer.  He was enthralled with the idea.  He said he wanted one that looked like a giraffe and that was when I made up my mind to find the time to make one.  I haven't done paper mache since I was 9 but I think it turned out pretty well.          

It was a really great day and I know Alex had a blast!

Wednesday, 17 June 2015

Up Up and Away....

1. Gideon's hearing has improved since his surgery and the right side is now mild to normal hearing and the left side is moderate to mild loss.  At this point we are looking at only putting an aid on his left side and monitoring him as we go along.

2. We had a follow up with our eye surgeon and the cataracts are nowhere to be seen!  His eyes are looking beautiful.

3. Alex will be turning 3 this week and he seems to be getting sweeter and cuter everyday.  He asked for a giraffe pinata and mommy's cake.

4. Alex has started using the potty :)  With the chaos of his life, it has been tricky to get this ball rolling.  He was refusing to sit on the potty at all but yesterday he even went to the potty at his sitters house.

5. Our church community has been amazing.  We have been blessed in so many ways.  It always seems that these blessings come at just the right time.  Thank you!

6. The boys slept in this morning- ie. Gideon went back to sleep after his 6:00 feed and Alex didn't wake up until 7:30 which gave me some quiet time to drink a coffee and ready myself for the day.

Yes the sun is shining and the day is fresh.  Let's keep this mojo flowing.

Tuesday, 2 June 2015

Gideon's Achievments

I just realized that I really haven't shared all the amazing things that Gideon has been achieving.  Because he lives in a world with less stimuli than me and this makes it harder for him to gather information about the world, small achievements become rather large achievements when put into perspective.

At 9 months old:

Visual Skills:  With the cataracts gone (**really trying to believe they are gone for good**), his vision has really improved.  He is tracking objects, not just lights, and will look at things he is touching.  His eye contact is still hit or miss, but I find being right up in his face, almost touching his nose, helps.  I think he has been fighting his microphalmia.  In the beginning, I think he was only seeing light perception or something close to that.  For me, his gains have been like night and day.  Yes he is still blind, but he is blind with sight LOL.

Hearing: Now that the fluid is out of his ears, I think there has been an improvement in his ability to hear.  He is starting to turn to some sounds and I'm sure he can hear me when I sing to him.  No news yet on the hearing aid situation.  I have an audiology appointment in the next couple of weeks and hopefully this will sort things out.  

Language: Gideon has not really been babbling a whole lot.  He does make vowel sounds and the occasional "b".  He has started to do a lip smack which has been fun.  There has not been a whole lot of verbal communication but there has been some non verbal.  He will move his arms and legs when he is excited.  He will smile when I tickle him or play peek-a-boo.  He will even giggle a little one in a while.

Gross Motor Skills: Gideon will roll from side to side and occasionally from front to back or back to front.  He is starting to tolerate sitting with support for longer periods of time.  Having something in his hands seems to help distracts him from realizing how much work he is doing trying to stabilize his core and keep his head up.  The mini push-up position can be held with my support and he will even lift and turn his head when motivated by his spinning light globe.  I think he will intentionally hit things sometimes too.

Feeding: Gideon has a stronger suck than when he was struggling in those early months.  He is eating larger amounts and has started to try solids.  Solids have been a struggle.  His eyes are still healing from the cataract surgery and this means that nothing can get in them due to infection risks- not even water.  Letting him explore his food is not really an option until his eyes heal.  This being said, I have managed to get a few bites into him now and then - mostly really thin textures- but hey, it's a start.

Tolerance:  Gideon has been adjusting better to the outdoors.  The breeze, temperature changes and brightness have become a little more tolerable.  Sometimes it is still too much for him.  Often you can see him physically and emotionally relax once we find our way back inside or out of a certain element.  You can tell that he knows our own house.  He is still struggling with being passed around to other people.  Although his tolerance has increased, it will only last about 5mins or so before he needs me again.       

I hope this gives you insight and encouragement into how well Gideon is doing right now.  He is making progress at his own pace and he needs to be acknowledged for everything that he is accomplishing in the face of his limitations.

Monday, 1 June 2015

How Many Club Z Points do I get for Signing Up?

Being a parent to a special needs child is challenging.  Who knew?  Before I had Gideon, I really had no idea what this special club was really going through.  Maybe I was given Gideon so I could relate to others going through similar journeys.  If I knew things were going to be this challenging would I rethink the whole pregnancy?  Maybe for a moment, but in the end I know I wouldn't give up Gideon for the world.

Here are some observations I have made about being in the Special Needs Mom Club:

Emotional Rollorcoasters will Happen:  Finding out your child is going to be "different" while still in a postpartum hormonal state, fighting sleep deprivation and a medical appointment book with little downtime can make it difficult for a parent to keep their mental health in check.   Depression, anxiety, OCD tendencies, burn out, all kinds of strange mannerisms/feelings start to emerge as you question whether you need professional help, have time to seek professional help, or if these quirks are just a figment of your imagination that can be self medicated with coffee.  The truth is that there are good weeks and there are bad weeks, good days and bad days, fleeting moments and long drawn out nightmares that will all blur together as you make your way through the journey.  Finding a healthy way to deal  with this is key!

Embrace your Support Networks:  Depending on your situation, finding and fostering a support network can be challenging.  Turning to other parents can be helpful, but sometimes it is disheartening to see their children develop normally and it can be hard to sympathize with the more "superficial challenges" they are dealing with.  It's not that I don't acknowledge your struggles, I know they are hard for you, it's just that sometimes I would literally give my left leg to be going through your struggles instead of mine.  It's all about perspective.  Support from family members can also be hit or miss depending on your cultural background, family values and dynamics.  I'm fortunate to have a lot of emotional support from my family and they have tried their best to help us out how ever they can.  I have also found support through our church.  They have provided us with emotional support, meals, gift cards, free babysitting and even a load of firewood that helped us get through the cold winter. Finding professional organizations that you or your child can identify with is also a great idea.  These can help you connect with other families going through similar struggles.  Isolation is hard in the best of situations.  When you are going through challenges in your life, it is even more important to open yourself up to others and find people you can relate to.      

Keep your Perspective: This can be one of the most challenging things for me to do.  As my life has become more and more revolved around my son, it has become difficult to give the other things in my life the attention they deserve.  I have to remember that my life shouldn't revolve around Gideon.   I need to spend special time with my other family members and embrace my friendships.  I need to find time for myself.  Life is too short to be constantly on the move, stressed out and "out of control".  I also have to recognize that our situation could be far worse than what it is.  My son is not terminal.  He survived the pregnancy.  I have to acknowledge all the blessings that have come our way.  Keeping things in perspective is essential in keeping my mental health in check and bouncing back from burn out.

Being a parent to any child is challenging, whether they have special needs or not.  How are you facing/dealing with your challenges?