P is for Patience and Perspective 31 for 21: Day 26

My mother has early stage dementia.  To know my mother is to know one of the sweetest ladies possible.  I don’t think you would find anyone who would say differently.  This has been a fact my entire life.  Our family is continually learning how to cope with this diagnosis.  The reality of what we are facing hits me at different moments.  Tonight I was again reminded of the road we are traveling.  It scares me and saddens me to think that quite possibly my mother may not know me someday.  Maybe a few years.  Maybe more.  Who knows?  It has been about a year since we really started noticing that she was forgetting things.  The constant asking of the same questions when the answer was already given 10 times.  Not remembering how to cook a recipe from scratch.  Not knowing the date.  The small things started adding up to the conclusion that she was slowing forgetting all that she knows.  All of your life you are being taught something.  From the first second you were born.  You never stop learning.  But what do you do when your brain stops trying? 

My mom pregnant with me in 1970. 

I try to remember to be patient when the same questions are asked 5 minutes apart.  I try to remember when she is short tempered and yelling that she is frustrated and it isn’t really me that she is angry with.  I have depended on my mother my entire life.  Still do.  She has been amazing to me.  She was the mom who at the last minute would take me to go see Nightmare on Elm Street at 14 because all of my friends were too scared to go.  (Of course I was a big baby and I had to sleep with her that night and with the light on for weeks after!) She was the mom who would make her famous eggrolls for my friends just because she wanted to thank them for being so good to me.  She was the mom who always took care of me when I was sick.  She was the mom who would go on a trip with me just because I asked.  She was the mom who would come to my house and plant flowers every year.  On and on I could go.  Neither Kiley or I have any siblings here.  Katie and Blake’s other grandparents do not live here.  Blake and Katie have been so lucky to have my parents here with us.  They have taken such good care of them.  It has never been a burden for her to watch the kids.  Heck, they could live with her and she would be so happy.  I remember when Katie was born.  When we were out of town in the hospital with Katie and Kiley needed to get back to work, she stayed with me.  She took care of me.  She would sit some days at Katie’s bedside and silent tears would fall.  She never said what she was thinking and I never asked.  I just remembered trying to comfort her, to let her know that we would be ok. It was truly one of the first times that I remember feeling like I was taking care of her then by comforting her because it has always been her comforting me all my life.   She has been Katie’s biggest supporter.  Up until this school year, she has taken care of Katie full time for us while we work.  My dad and I were talking this summer about how she will need to go to daycare after this year and I know this will sadden my mom (he is great too—he watches my mom watching Katie).  I know Katie will be ok, but I don’t know about my mom.   Since Katie is in school until lunch, she is with them for about 4-5 hours every afternoon.  The doctor feels that Katie is helping to keep my mother focused, to give her some purpose in remembering and to help her live a stronger life.  She is incredible with Katie and it will be so hard on her, but I know it is what is best for everyone. 

My mom with Katie on her field trip earlier this month.

My mom possibly not remembering me will be terrible, but for her not to know my babies will be devastating.  I am blessed that I have had her by my side for the last 40 years.  (Thank you to my husband for loving me enough to stay when we were both so young and for allowing me to live here to be near her.  He has given up so much too.  I know how much it hurts for him not to be near his family.)   I did not know my grandparents on my mother’s side.  My mom is from Thailand and her mom died when she was 16 and her father passed when I was 6 or 7.  My dad’s dad passed when I was almost 10 and my dad’s mom when I was 19.  I have some wonderful memories of my grandparents on my dad’s side and I want those same memories for my kids.  I want Kaitlyn to remember her grandmother.  I want her grandmother to be here when she is 10, 15, 20.  I know we aren’t guaranteed not one single moment, but if it were to be that we all lived another 20 years, how wonderful for us. 
I have had 24 years more than my mom had with her mom.  They have been good years.  Wonderful years.  I don’t take a day for granted. I am blessed.  Thank you mom for being the best ever.  I know I will never compare with you, but I hope that I have made you proud to have me as a daughter.  I love you so much.  Please remember her in your prayers. 
Tonight made me remember my perspectives on life.  How I want to live it—fully and honorable to God and to my friends and family.  The road is not easy for any of us, but how we view our life in comparison with others is a big reality check for me despite some obstacles I am faced with.  I am in a very good and blessed place.  It reminds me that all it has ever taken to move forward is to put one foot in front of the other and to walk in faith.  And when we have trouble walking down the path placed in front of us, that we can ask for help in being carried.  I haven’t walked in anyone’s shoes but my own.  Sharing Katie’s story is important to me.  If sharing my perspective of parenting a child with special needs helps one person make a decision not to abort or not to give up on their child, it will have been worth the effort.  I think of how people look at my daughter and how they instantly perceive how she is or how we live and how we can be so wrong with our perceptions without knowing the full story.  My life is a series of events, all happening in God’s timing.  I am profoundly aware of life being fragile and that we should be grateful to be a part of it.  My perspectives became clearer again today on several things, one of which is how this blogging 31 for 21 challenge makes me feel.  I have been thinking for the last few days that I just can’t do another night due to fatigue.  Then I am reminded that maybe someone who has never given Down syndrome a second thought may be inspired by this month of awareness.   It reminds me that we still have so much work to do on educating those who really have no idea about Down syndrome and the life our family member lives and the ones we live with them.  So our work must continue and we push forward even on those days when weariness creeps in and decides to stay for an extended visit.   My perspective is that life is a gift and one not to be wasted.  Wouldn’t you agree?

Back to blogging 31 for 21 day 1

It has been 5, almost 6 months since I last blogged.  I really wasn’t sure if I was going to do the 31 for 21 Down syndrome awareness challenge, but I felt that this would be a good way for me to try blogging again.  It has been almost a year since I opened this blog up---for two years this blog was mine, sitting here blankly with not one thing written.  It isn’t as if I am not inspired because if you know me, you know I am constantly talking and I am inspired by so many things in my life.  Of course my children are my biggest inspiration.  I think of how much I have changed in the last 3 1/2 years since my Katie was born.  My eyes have been open to so much more than I knew possible.  So why wouldn’t I want to share?  I guess that I am constantly trying to find time to fit things into my schedule and I just didn’t want to commit the time in keeping my blog current.  Anyhow…..I’m back and that’s really all that matters I guess.

So this month is Down syndrome awareness month.  This is a way to further bring Ds to the forefront.  I know that I really didn’t give Ds a thought prior to Katie being born.  I had heard the words and had a couple of limited encounters with people who had Down syndrome, but that was it.  It just wasn’t part of my world so to speak.  I have said this before, but one of my purposes in life became so much more defined since her birth.  It is one of my life’s missions to educate those to the world of Down syndrome, to change people’s perception of what they thought they knew about Ds, to show families that life is not doom and gloom for those living with Ds.   Sure we have therapists, we have IEP’s, we have stares among other things, but we do everything any other family does.  I like to think of our lives as being enhanced by Ds, most definitely not defined by it. 
My sweet Katie has been doing very well since I last updated in April.  We enjoyed our summer and started back to school in August.  It was a rough two weeks to start with, but my girl loves school now!  First day of school pic!  An instant classic!
She cannot wait to go everyday. I thought that I was going to fall apart at the beginning of school when Katie would cry every day as I left her, but her teacher made me see the crying as something encouraging. She told me that Katie was aware that she was being separated from us.  Separation awareness meant she wasn’t just in her little world anymore.  After she told me that, I was at peace with the crying as I left her.
The other day I started to keep her home from school as she acted like she wasn’t feeling well.  When I told her we were going bye bye, she said school and looked at her backpack and said pack.  (I had left it on the counter because I thought she was just going to stay over at my mom’s.)  She wanted to go to school and I guess she wanted her backpack!  How dare I try to leave it on the counter!  Off to school she went.  She is doing so well in a routine and learning so much.  I can’t believe the change in her since those first few days.  We have her going 2 days a week to a private preschool, full inclusion and the other 3 days a week she is at the public school in a special needs class.  She is thriving in both places.  Her personality came alive!  She is finally initiating play with her toys by herself! Now I have to clean up all the toys and everything else she pulls out all around the house whereas before she never touched her toys unless I pulled them out.   It really is amazing to see all of her progress.  How blessed I am to have her two schools and the staffs teaching Katie.  They are incredible and I am so grateful that she is exactly where she needs to be.  We get the best of both worlds. 
 Enjoying some playing time with her classmate Juicy! 
Her beautiful smile! 

My sweet/sour tween Blake is doing well also.  He is playing football and staying busy with school and his social life.  There is a 9 year age gap between my kids.  I feel like I am raising two only children.  In a few short years, my son will be graduating while my daughter will be in 3rd grade.  I wish that Katie had a younger brother or sister, but love the 2 God has given me with all my heart.  Heck, I wish I had about 4 more kids!  Who knows what life will bring for me? 

Blake and Katie at the zoo this summer.
So, look for a post everyday from me.  I am going to try to mention Ds in each one.  How can I not share all the wonderful awareness Ds has brought into my life these last 3 years?!