Wednesday, March 25, 2015

The Grass is Greener

I woke up, just like every other morning.  Half asleep debating if I really wanted to go on the bike.  I untangled myself from my daughter's oxygen cord, just another reminder that I am a parent of a special child.  I stumble down the stairs and stub my toe on that huge concentrator that my daughter is hooked up to, providing the oxygen she needs to maintain healthy saturations. 

I reluctantly hop on my bike, it has been several weeks since I have rode on it but know I need this.  My life has been lived in a hospital room helping my daughter battle RSV.  Since home I have tried to catch up on sleep that the hospital stole from me, make up time with my girls that was robbed by another sickness, and try to spend a little time on my marriage.  Life has been busy.

I take a deep breathe and turn on the music.  I am slow this morning.  Many things running through my mind.  I drift into a daydream.  I dream about other people's lives and what it must be like to live their life.  I think how green the grass looks on the other side.  If only this, if only that.  My daydreams quickly turns to anger and jealousy.  Why can't I be like that?  Why can't life be that simple for me?  I have reminders all over my life of how difficult and isolating it is to raise a child with special needs and many medical complications.

Then I have reminders of how that green grass on the other side of the fence is tainted with their own thistles and weeds.  I am reminded of the horrors of other people's lives all around me.  The police officer that was just shot yesterday in our community, the family whose mom is battling cancer, the man who is watching his father die because of cancer, the family that is fostering the impossible child, the family who just experienced the tragic loss of a child, the family that battles in silence, the broken marriage.  The list can go on and on of what the green grass covers up.  What is behind the smile, what is really going on?

As I turned my phone to my daily devotion God gave me Philippians 2:3-5.  I needed this.  It says: "Do nothing out of selfish ambition or vain conceit, but in humility consider others better than yourselves.  Each of you should look not only to your own interests, but also to the interests of others.  Your attitude should be the same as that of Christ Jesus."  I needed this today. 

A little bit of daydreaming turns into jealousy and anger.  None of that is healthy.  The truth is, God has written a path for everyone's lives.  Some are similar and some are completely different.  There are struggles and trials in everyone's lives.  I was encouraged to not daydream but to help others.  I was encouraged to not wallow where God has me, but to help others in their place.  And if I want to have my grass green, I need to put in the time, I need to pull the thistles, and I need to water it, mow it, and take care of it.  Daydreaming of someone else's grass will not help mine.

There are reminders all around of the path God has written for me.  Some are harder to accept than others.  The conversation that I had the other day with my middle child.  Mom, can you tell me what retard is.  Mom, I don't want to put Lydia down, but I want to know what it means.  As we talked and I got that deep burning feeling out, it felt good that I was teaching my child about what the meaning of words are and how she should use them.  The word retard really gets to me, to think that Lydia is mentally retarded is really hard for me.  She is my daughter, full of life and laughter.  Whether she is slow, retarded, has Down syndrome or whatever is pointless because none of them describes who she is.  I learned this is part of the pruning of my grass.  I need to cut those things out and pull the roots.  I need to remember whose child she is, she is the daughter of the King of Kings.  I can't allow that word to take seed and root itself deep in my grass.

There are other reminders.  The isolation of staying put inside a house all day.  The isolation of monitoring a child and helping them navigate their environment while hooked on a tube.  As I looked around the parking lot and saw other moms walking their children into school, looking as though there was not a care in this world, I felt that hot anger getting root again.  I had to be thankful that I was able to get out of the house (I have not been able to take the kids to school in over a week).  I had to be thankful that God has allowed me to provide a safe place for Lydia of healing and restoration.  It's not what I want, where I want to be, but I need to continue to prune, mow, and tend to MY grass.

The grass will always look greener on the other side and that is because we have not been there to do the work.  It is fun sometimes to admire how beautiful it looks and wish we were there, but that is a very dangerous place to be.  Getting a diagnosis of Down syndrome can sometimes feel like that too, unfair and like your entire lawn was just killed.  However, when you allow the seed to take over and pull the roots of all of the untrue information and stereotypes, your grass too can become beautiful and green.  There is nothing in this life with God's help, that will destroy our lawn.  Be happy right where God has planted you.  Tend to your grass, mow it, prune it, and put the time in for it to be green and healthy.

Thursday, March 12, 2015

Connecting Pieces

A couple of weekends ago I attended a workshop that was put on by our local Down Syndrome group (DSAW-Fox Cities).  They brought in a presenter named Alice Belgrade.  The title of the workshop was from defiance to compliance.  I knew that I needed some of this with Lydia.  It was a great workshop and I had a lot of fun being away from the kids with a good friend!

I know that parenting a child with special needs, specifically with many medical challenges, is different than my other kids.  However, I have not been able to put my finger exactly on what is different.  But there are many times my husband and I just shake our head and we are at a loss of what to do next. 

One of the major take aways that I had from this day long conference was about the environment Lydia has.  I work so hard on making it safe, and getting the toys that are accurate for her ability, and making sure that I work with her on her skills and what she is doing in therapy.  However, I have been missing two huge key parts.  One is "Is the environment functional for her?"  Two is "She likes to have fun and is her environment fun?"  No and no were my answers.

I remember with Ellen and Allison I enjoyed baking with them (we still make many memories cooking together).  I remember that Ellen was great at pouring and really struggled with cracking eggs.  I had to either pre-crack the eggs or have her sister do that.  Allison was just the opposite in that she was great at cracking eggs but really struggled to pour.  I had to either pour for her or pour the liquid into a smaller container so she could pour.  I did this so they would have success and they could take pride in helping me bake.  No where ever did it enter my mind that Ellen is three and she should be cracking an egg.  No where ever did it enter my mind that Allison is two and she should be able to pour.  Their environments were set up so both of them could feel success at their individual ability.

They are no different than Lydia.  I need to create an environment where Lydia can be successful and she can complete tasks on her ability.  I should not think that because she is three, she should be doing this.  No, I should look at her abilities and create the environment to fit her abilities. 

Sounds really simple, right?  Yep, I agree too.  But I have struggled with this.  As I have thought and wondered why this was so difficult to me, I had to admit something that is really hard for me to.  I had to admit that maybe, somewhere in my mind, I believed the negativity that was told to me at the beginning.  Maybe I didn't really believe that she could do it because she has Down syndrome.  Maybe I was passing her off and not giving her the opportunity that she needed.  That sounds horrible.  But I am slowly connecting those pieces.

I remember sitting at one of Lydia's very first IEP meetings.  We wanted to set a goal of her being able to button and unbutton.  Her OT said that was probably too high level and they would not expect Lydia to be doing that yet.  Eric, my husband, firmly said that we want to keep pushing Lydia and allow her to tell us when too much is too much.  We don't want to predetermine what she can do or cannot do.  That is important to both Eric and myself, but I get caught in all of the negatives.  I see the tests that say she is so far behind and this small, yet very powerful voice says she will be nothing.  I get confused and I struggle with that.

Lydia deserves an environment where she can experience more success than failure.  It is not based on age or disability or the color of her eyes.  It is based on what Lydia can do and where Lydia is at.  It's putting extra step stools in the kitchen so she can reach the plates, because she is capable.  It is helping her to get the lid started on the water bottle so she can finish it and experience the same success as her sisters.  It is taking my time to help her to hang her jacket on a hanger.  It is that extra three minutes that I get frustrated with.  But it is about helping her experience success and not failures.

I also forget how much she loves people.  I forget that she loves to have fun and be a goofball.  This motivates her, this helps her to want to do more when it is in a fun environment.  Seems so simple again, yet I couldn't put those pieces together until now.  Instead of thinking about it as playing games when she is eating, I think of it as creating a fun environment so she can be successful.  It is hard sometimes because what I think should happen, doesn't.  But it doesn't happen the way I think it should either.  So really, if we are able to motivate her by allowing her to have fun, we have a win.  No matter what I think!

It is hard to admit that I probably have been a huge stumbling block in a lot her learning because I could not simply let down my wants and do what is really best for her.  I forgot to create an environment for her where she can excel.  I did so well with my other girls, what happened?  I think that I got so wrapped up in trying to create awareness, trying to manage medical issues, and trying to prove to someone (I am not sure who that would be) that she is worth something.  She is worth everything simply because she is my daughter.  It does not matter what others think and I need to remember that.

When we cooked the other day, Lydia was able to pull the butter from the paper, she was able to turn the cap to the vanilla, and lower the mixer and lock it into place.  She was able to laugh and play with her sisters.  I created three separate environments for each child, one where they could learn, be challenged and still experience success. 

I think after writing my last blog post, I was able to easily connect the pieces.  Awareness, to me, is not about proving Lydia's worth.  It is about showing what she is capable of doing right where she is at.  It is about changing who I am to be the very best mother and advocate for her (and this goes with my other girls as well).  I think it is about changing attitudes towards Lydia.  She is not less of a person because Downy syndrome.  She may be different, but I am completely different from my sisters too!

I am glad that God has allowed me to connect these pieces.  Things that seem to be right in front of me, but I was completely missing them.  Creating an environment where she can feel successful is my ultimate goal.  And it does not matter what she should be doing at what age, it is about her ability today!  I have nothing to prove to anyone but share my sweet little girl with everyone!

Friday, March 6, 2015

I have a daughter with Down syndrome...So What?!

Happy Trisomy Awareness month!  My Facebook news feed is spilling over with all kinds of pictures and saying about Down syndrome, Edwards syndrome and many other different Trisomy's.  Part of me wanted to jump in and start posting, write a whole bunch of blogs and flood everyone else's news feeds with facts and pictures of sweet little Lydia (well more than I already do!).  However, I can't seem to formulate one single word. 

I have been thinking lot about what awareness is to me and why it is so important.  Why do I wish to share Lydia's story?  And really the bottom line is, I have always felt that I needed to defend why I chose to have Lydia.  I have felt like I needed to defend why her life is just as important as my other daughter's.  I feel the need to defend her when we are out in public, when we are at her IEP for school.  I feel the need to defend her on social media or through my blogs. 

I personally have had some pretty nasty words uttered to me regarding Lydia.  Those stick with you even if you don't dwell on them.  They are like small whispers that stay in the back of your brain and haunt you at very odd times.  I have also read so many times how horrible the information on the Internet is about Down syndrome.  I personally have not Googled it, but I have heard there is a lot of negative things.  Just from my personal experience, I have heard more about what she cannot do than what she can do.

I think for a mom, this is horrible.  You read the statistics about how many babies are aborted when there is a prenatal diagnosis of Down syndrome.  Why?  Is it because of all of the negativity and focus on what can't be done?  Is it fear?  I don't know, I can't answer that.  But I guess that is what leads me to the beginning of my journey with awareness.  I want those around me to know what Lydia CAN do and what a true blessing she is.  I am not out to set the world on fire, my blogs hardly ever get read.  That's fine, I blog to help me and hopefully to inspire others.  But I want to be honest with those around me.  Life with 47 Chromosomes is pretty much awesome!

I am upfront about my faith and how I rely on it in every aspect of my life.  I don't try to push it on anyone, but I will not compromise it.  That is the same with my daughter.  I will not push her on anyone.  I realize that there are true fears and resistance against someone who is different (I personally don't understand it, but I do know that this is a real fear).  However, I will never compromise what she can do or think that she is less of a daughter than any of my other girls.  She has a purpose and a place in this family and I am proud of that.

Today as we were cleaning rooms, she signed music.  She loves the Karaoke machine and always wants to sing.  We put Frozen in and she turned it to Let It Go.  She gave me a mic and I immediately picked it up an started singing with her.  I am sure it was one of the worst sounds heard, but we were making our own music together.  There was a time that I would not sing in front of anyone.  I was once told that I did not have a very good voice and I should just keep that to myself.  I don't have the best voice, but it is not horrible.  However, those words kept me from singing.

However, once Lydia came along, she taught me to embrace the moment.  When we were in the hospital she loved it when I sang to her.  Because we did not know what the next moments would bring, if we would ever get another chance to make memories, I sang to her when doctors and nurses were in the room.  I kept doing it and by the end of our five plus month hospital stay, I never even considered not singing.

Today was no exception.  We jammed and we laughed and we made some great memories.  I have learned that it really does not matter what other people think.  The ones who really matter will embrace her no matter what.  She has embraced my not so good singing voice and I have embraced her 47 Chromosomes. 

I don't want the negativity to be part of her journey.  I don't want her to think because she has Down syndrome she is less or she can't do something.  I understand there may be things that she is not capable of doing, but I don't want that to be set before she even tries.

That is why it is so important to create awareness.  I don't ask that you be her best friend, you don't have to like her.  But I want you to be aware of what she can do.  I want you to know she is not less, she is just different.  And after all, we are all different.  Each of my girls have their own strengths and their own weaknesses.

It is time to start showing the world what a child with 47 Chromosomes CAN do and not focus on what they can't.  Yes, there are some things that are more typical, but that makes them who they are and does not define them.

My awareness journey is to bring awareness and to create better communities in which Lydia and her peers live.  We have been completely blessed by her school, our friends, our family, and our church that they completely accept her for her.  She has a place and it is no different than me or you!