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Cancer, Autism, and everything else...

May 05, 2015 - 2 comments

It's been really difficult trying to keep up with everyone and I just wanted to try to get a new journal up while I have a few minutes.  

As most of you know my dad's cancer has returned after 21 years, something we certainly never expected.  We certainly didn't expect to be going through cancer again so soon after my mom.  It's been difficult because it took us awhile to get results, doctor's visits and finally a treatment plan.  So far there have been just a few bumps in the road but for the most part my dad is doing well.  His third round of chemo treatments start May 13th.  He goes for three days then another Pet Scan to see where we are at.  Then those results will determine if we need to change anything or keep going.  All I can say is that now that I am the main caregiver for my dad, there are so many things my sister and I missed during my mom's treatments and I wish I could turn back the hands of time for some do overs.  And yes, I am the main caregiver for my dad.  My dad decided to do treatments at a cancer center close to my home and moved in with us during this time.  It's been challenging and I had to make some adjustments to my schedule, so I stopped my classes in January.  I plan to start again in June God willing I can do this.  

In the meantime, my boys are getting so big.  We are having their 3rd birthday party in May and this year's theme is Western Cowboy Theme.  I'm even going crazy and getting a pony! What the heck, they are only 3 years old once.  Alex is talking up a storm and he attends day care every morning 9 to 12.  Michael has been doing very well with this therapy and is now up to 7 words! This is huge for him but he still has a way to go.  In a few weeks we will find out what program he will qualify for to go to school full time (9 to 3) with our local school district.  This program is a full day of ABA therapy and is what he will need to continue to improve.  At this point I don't see Alex qualifying but I may put him in full time where he attends now.  He absolutely loves it.  

I've been through so many changes the last few years and many of them have been difficult to get through at times.  I miss my mom terribly and without her to talk to its even more difficult.  I've cursed every one from the donor, to the agency, myself, the fertility Gods, everyone when I'm upset over Michael.  I don't understand what went wrong and I'll never accept this for him.  I try to manage my feelings but sometime I just lose it.  Every day with a special needs child is such a challenge but I love him so much I will go to Hell and back to get him whatever help he needs.  It's difficult enough taking care of twins but when one of them needs added attention, it's harder.  

But we are planning on walking in the Autism Speaks 5 K walk on June 28th.  We formed a team for Michael, "Michael's all stars of Hope" and we are raising money as we speak.  If anyone would love to join us for the walk if you live in the tristate area, please send me a message and I'll send you the info.  I am hoping to reach our goal of 1500.00.  

My husband's father is finally being released on Thursday.  After being in the hospital since January, and rehab, he is finally going home.  He has  a long way to go and will need continual physical therapy but at least he is home.  I can't tell you how hard it was when dh was in Florida every three weeks for three weeks to help out.  I was doing everything and I was exhausted.  

I think I covered everything and I hope to be back on here touching base with everyone more individually soon.  I think of you all often and pray that all of your dreams come true.  

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by Risa615, May 06, 2015
You definitely have a lot going on. I know having a special needs child is hard, but when a new milestone is reached, such a reward. Keep up the good work and both your sons will be amazing.

I am glad you are connecting with other families and doing a walk. Every Oct we do The Buddy Walk with Hunter to bring awareness to Down Syndrome.  Last year I posted his page on my Facebook and raised $3,000, it was very exciting. We had a team of 30 people waking. I can't wait until he is old enough to understand how much love and support he has.

I hope you are able to return to school, but glad you are there for your dad!

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by Grace358, May 09, 2015
Hi Joann,
Hope you are doing well with everything that you have going on. Im sorry you are upset.. It must be so tough seeing your father that way, I know its so hard as my own father has advanced cancer. All we can do is accept whatever is going on for them and be thankful we've had the time with them..the rest is up to them and god..I know its so hard but all we can do is pray for them..its taken me so long to realise that the more I try to control things the more it doesn't work so Im doing my best to just accept what is and let go...It can get so depressing when you try to break things down and you can't find an answer to things.. Im sorry you are going through so much and pray that you get some peace and happiness around your dad and Michael... Its hard as we never stop worrying about them no matter whats going on... did we do enough, how will they do in their lives etc.. its such a mother thing and I wish you less burden over it all... enjoy the milestones as Risa mentions above as I am sure they must be so beautiful.. Hope their 3rd birthday goes very well and that they enjoy the western theme.. With regards to your mum and going back and redoing things, I have thought about things like that over n over in my head and in the end all I keep getting is that did the best that you could with the knowledge and energy you had at that time.. believe me I have done that so many times with one of my best friends.. what if you did everything and the result was the same.. in the end I don't think its up to us..hope I have made sense... sending you lots of peace and love.. think about you often too.. hope you are able to get back to school when things calm down.. big hugs brave woman : )

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