Wednesday, September 05, 2012

Up to now

June 2011 was my last post so here we go!

Our biggest accomplishment was spending about 15 months out from the hospital! That was our first entire year out of the hospital since Micah was born!

July we took a day trip to the lake and enjoyed the hot summer day! Even though I kept Micah in the shade of the easy up he still got a sun burn DANG IT!
August Joseph turned 6 and started school.
September Micah started school, we did routine labs and X-rays to check on Micah!
October we had our 3rd .micahSMArch.  and my husband and I celebrated our 8th anniversary. Micah was a teddy bear and Joseph was a deceptacon for Halloween!
November had a lot to be thankful for. Micah had a muscle disorder clinic apt and they recommended we go to have an assessment done for a communication device!
December Micah was a little sick but we had a good Christmas and Joseph broke his leg!  Pictures to follow!
January we took the boy to Disneyland Micah in his wheelchair stroller and Joseph in his wheelchair! Pictures to follow.
February Our sweet friend Danielle had a little baby boy named Jackson we visited them in the new beautiful Cottage Hospital. Micah got to hold him.
March we had a couple apts and house sat but nothing much going on this month.
April We attended the MDA winter wine down and got to visit with some friends.  Pictures to follow.
May did a little swimming and our super sweet nurse and very close family friend moved to Washington.
June did some more swimming, Micah turned 4 so we took the boys to Sea World! Pictures to follow.
July we did some more swimming, and then we went to the hospital via ambulance admitted to VCMC but two days later transferred to Santa Barbara Cottage Hospital for 14 days.

Sunday, September 02, 2012

Hard days

So I know this probably isn't the way to open after being too quiet for too long but I haven't posted because things have been hard and every time I have started to write something I found it turning real negative, I have always been honest but life is hard and I wanted to be positive and not post a bunch of negative stuff! I have realized recently that it is all life and it's our life good and bad!

So today I am having a hard day, not that you would ever be able to tell but every once in a while  things hit me harder than I want to accept. Today is a hard day, Micah is doing great and I slept well, sounds crazy right? Well for me it IS hard when Micah is having a difficult time with his illness, but I know what to do when he needs help. I hate to say I am used to all that is SMA because as a parent you never get used to this but I am accustomed to our routine .  So waking up to machines, alarms, tubes and wires is my normal.  

Today is a different kind of hard because I want nothing more than the one thing I will never have, I want to hold my son and feel him hold me back.  Sometimes when he looks at me I feel the love he has for me and I want to snatch him up and just love on him but it's never that easy.  I have to unhook what I can and be careful that I know where the rest of the tubes and wires are if I want to hold him and I will never actually feel him hugging me back. I can absolutely see the love he has for me when I look into his little face and most days it is so much more than a hug but some days I just want to actually feel his love.  A little selfish I know but honest none the less.
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