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?

P is for Possibilities 31 for 21: Day 25

I am having a hard time tonight writing this post.  I can’t find the words to say what I feel.  P has been for passion, pessimism, prayers, pictures, patience and now possibilities.  I guess I have so much I am thinking and feeling, but unable to articulate what it is I want to say. Is that how my Katie feels at times?  You know she wants to say what she is thinking, but it doesn’t always come out when she wants it to.   I look at her and in my eyes I am pleading, talk to me, say what you are thinking, only to be met with those beautiful soulful eyes and silence.  This isn’t to be misunderstood with her actually talking.  Her teachers tell me that she is quite talkative in class.  She babbles and says words and she knows what is going on, but if I ask Katie a question, it is very rare that she will just answer me back.  How was your day Katie?  Silence.  I love you.  Silence.   Sleep ok?  Silence.  Some days the silence overwhelms me.  Other times it is just what it is.  I wouldn’t trade my daughter for anything.  She is full of possibility and I believe there will be a day when she is asking the questions instead of me.  The Lord showed me how full of those possibilities she was those first few months of her life.  When I think of those things she struggled with and things she still struggles with, it hurts me, but I know she doesn’t see it as a struggle.  She knows no different at this age.  She just keeps trying over and over.  She is my inspiration through and through. 
I think of how people write our children off because they hear the word Down syndrome and they automatically label her.  They haven’t allowed her the possibility to shine, to show what she is capable of.  I get so tired of people writing you off at first glance.  I hate when people look and the instant label is put on them.  To be fair, I have done it many times too, so please don’t think I am exempting myself from this statement.  Their clothes are secondhand—oh they must be poor.  Their house is a mess—oh they are slobs.  They talk funny—they are uneducated.  I use to think people were so rude when you would speak to them and they wouldn’t speak back.  Now in my wisdom I know it is probably because they didn’t hear me or their minds were occupied on something else.  My mother is so hard of hearing.  I have to go around and tell everyone, if she doesn’t respond to you, she isn’t ignoring you, she can’t hear you, talk louder.  Yet people who don’t know her have already labeled her in that one instance.  How many times has someone looked at my Katie and then looked at her again and instantly made up their minds about her?  Far too many I am sure, but I am going to try my hardest to stop labeling someone just from my first image of them.  You know the old saying about first impressions…they count the most, blah, blah, blah….Well, I am going to go for second and third impressions too!  Extend the same courtesy to my daughter too if you don’t mind.  You’ll be a better person for it. 
Think of what the world would be like if we allowed ourselves to be open to the possibility of always finding the good in others.  To those who have accepted my daughter just as she is, thank you from the bottom of my heart.  Thank you for seeing my daughter exactly as she is.  Thank you for not judging and for allowing the possibility of her beautiful soul with her extra chromosome to shine through her into you. 
Passionately believe in what you are doing, let nothing hold you up in your work, and one day at a time the impossible can become possible.  I am passionately believing in the possibility that our children will be given all the same chances as everyone else.  Change always starts with one person.  There are moments in life that change you forever and my Katie’s birth is one of them for me.  I leave you with a quote….
Never judge a book by its cover because the story inside could be the one that changes your life.  You need to take time to look inside and give it a chance.