I Wish I Had Known

When I first received the diagnosis for Lydia; the possibility of Down syndrome, I wish I had known how she would change my life, the person that I would become, the joy that she would bring, how she would strengthen my faith, what she would teach me about life, the new perspective I would gain.  Instead I was filled with fear and the unknown; probably as each new mom feels once that diagnosis is given.  I want to take a moment to share with you some of the things I wish I had known prior to having her, prior to walking this journey.  My life is full to the brim and mostly because of the new perspective Lydia has given me.  As we come closer to this Holiday of Thanksgiving, my heart could not be anymore thankful.  Our family may have to make the hard decision of splitting up and taking the older girls to visit grandma and grandpa while mom and Lydia stay behind (Lydia is still not 100%).  But even in those tough decisions, there is so much to be thankful for...all I need to do is look at her slanted little eyes and I am filled with love and joy.  Who ever said that those eyes would be such a bad thing?  I find hope and love in her eyes and I think they are the most beautiful things I have ever seen!

I wish I had known just exactly how wrong my fears were before I had you, I would have been screaming in anticipation to start our journey with you.

I wish I had known just how strong you were, I would have sat by your bedside cheering you on, knowing God made you extra strong instead of all the worry and fret I had.

I wish I had known just how amazing one extra Chromosome is, I would not have let the fear of the unknown consume me just as it did.

I wish I had known the joy that would fill our hearts when you entered this world, it was joy that was never seen by this family before.

I wish I had known that you understood exactly the plans God has for our family, I would have embraced them quicker before trying to fight against His plans.

I wish I had known what kind of perspective you would have given me, I would have tried to gain it much sooner in my life.

I wish I had known the love that you would teach, the sacrificial and selfless love, I would have tried to learn that kind of love years ago.

I wish I had known how you would change me, but it was something I could not comprehend until you came along.

I wish I would have known how difficult sitting, rolling, grabbing a Cheerio was, I would have cheered the other girls on louder when they reached these milestones.

I wish I would have known how great life is when we slow down, I would have tried to slow down earlier.

I wish I would have known how much a mom can learn from her children, I would have paid more attention to the lessons Ellen and Allison were teaching me before.

I wish I would known what was important in life, but it took you coming into my life to teach me so.

My dearest Lydia, you have taught me more than I even know.  You have given me a new perspective, a fresh look.  You have changed me in a way I cannot even describe.  I feel like I am such a better person because of you.  You have taught me how to look beyond what I first see, how to live life to the fullest, how to find joy in the simple things, how to fight with your whole being, how to not dwell on those hard things, but be thankful in everything.  God knew EXACTLY what He was doing when He placed you in our family.  I am so grateful for the lessons you have taught me, for the love you have given.  God has allowed a special angel in our family to teach us lessons that we all needed to learn.  Often times we were too busy to stop and learn them or we did not think that they were important.

I have probably said the same stuff over and over before, but you have made me such a better person.  When I think back to what Down syndrome meant to me prior, I have to laugh at the fear and worry I felt.  I know that they were real, I know that I did not understand what the journey would be, but baby girl you have taught me so much and I am the blessed one.  God made our family complete with you.

Unseen

I have been struggling a bit on the emotional roller coaster of being a special needs parent (specifically with a child who has greater medical needs) and being able to understand any of these feelings.  As crazy as it sounds sometimes I wish that we had the support that we had back in the hospital.  There were nurses who not only cared for Lydia but acted like my therapist.  While they may not have understood what we were going through, they listened and they encouraged.  We had the support of many families who were/are walking the same road as us at the Ronald McDonald House.  We were actually in a safe and secure environment even when everything was crashing in on us. 

Even though we are not in the "critical days" with Lydia, I feel like some of these days are the loneliest days I have experienced and very, very tough.  Lydia is sick right now and we need to cautious.  She does not have the reserves to fight off a cold like Ellen and Allison.  We have to balance her fluids and eating and coughing and throwing up.  It is natural to us now.  But I can't express how lonely these days are spent rocking a child who is coughing and struggling.  While she may not be like this all day; there are times that are horrible, these are the unseen battles that we endure daily sometimes. 

Then there are the tough decisions that we make to split up the family.  The Holidays are here and we are suppose to travel and see family.  Lydia, when she is healthy, does not travel well to begin with.  Is it fair for us to take a girl who is compromised and put her in a situation that she does not do well in?  Is it fair to tell Ellen and Allison they can't see their cousins or grandparents?  Is it fair for us to split the family up once again?  What's the right decision?  The tears flow because it hurts so bad, I don't want to walk down this path again.  These are some of the unseen decisions that we constantly have to make.

But that is not the only thing, I hear those judging comments, I see the stares, and I feel the eye rolls.  It seems like everyone can do a much better job of raising my child than I can.  It seems like, at times, family and friends know better how to walk the life I walk.  I have learned how to be silent (that is amazing task for me too!) because it is an unseen hurt to these people.  But I find that I drift away from people and I lose relationships.  That unseen hurt is so painful to me, yet others have no clue.  

I know that not everyone wants to constantly hear about Lydia and our struggles, but I am unsure how to break away from it.  This is who I am.  She is so important to me and has changed me in some very profound ways.  There are so many unseen lessons that she has taught our family and so many unseen things we have learned that are now part of who we are.  I can't change that; that is just who I am.

There are so many unseen struggles from the outside eye.  To get your child the therapy they need, to battle several children's ongoing needs and wants.  To decide what bill to pay because the assistance, if you are able to get it never seems to cover the supplements, the therapies, the extra medicine, the braces, the special outfits, the special diet, the increased wipes or other supplies because of their needs.  The appointments after appointments that cause a babysitter for the other girls, the extra gas to get there or that unexpected hotel room. 

These are not complaints but rather an honest look into the unseen things that many special need (note: not all special needs have the extra medical needs, but my Lydia happens to, so that is the perspective I write from) parents go through.  These are the things that add extra stress on top of caring for a fragile child.  While Lydia is much like her sisters in many ways, there are other things that we need to concern ourselves with to make sure she is receiving so she has the same opportunities as her sisters.

There always seems to be a battle of the unseen things.  As people walk by and judge so freely without knowing the story, without really understand that struggle that is being fought.  Sometimes it is more than one can take.  It is a lonely battle often times because many people don't see and then they can't understand.

One thing that I have been trying to do, is simply encourage.  The gift of a note just letting someone know I prayed for them, a hug, a warm genuine smile, an unexpected card in the mail, a text with a Bible verse.  These are very small things that can make a huge deal in the life of someone, especially one who seems to be battling the unseen.  We can't understand always, but we can all encourage.

On days like these when I seem completely confined to a recliner, sitting in my bra and underwear (maybe TMI but this is a reality) because she keeps throwing up and we have both gone through several outfits, listening to her cry and struggling to find a way to comfort her.  Longing for a moment to go to the bathroom or to shower; not even dreaming of a minute with just me.  A simple unexpected note or pick me up can change the entire day. 

After all, we are suppose to be a community helping each other out when in need.  Sometimes we don't know we are in need until someone encourages us.  Often times I find the encouragement from my daughter.  But on the days when you feel like the world is judging you for the decisions you need to make for your child, when you feel like you are battling with everyone just trying to get what your daughter deserves, and you watch your child struggle; it is amazing.

I write this not because I am searching for something (but honestly I could use encouragement) but I write this more for the moms who are starting out, wisdom to say to someone who wants to do something for you, but is unsure what to do.  And if you were like me in the beginning, you have no idea what to say, you are too overwhelmed.  Ask for encouragement, ask if they would continually give you notes to keep cheering you on through this life long journey. 

I write this for the person who has allowed a special needs child get in the way of your friendship.  You're right, it is not about you and your friend anymore, it is about a child and what is best for the child; but by walking away you are missing out.  You are allowing your selfishness to rob you of one of the best blessings.  You don't need to understand, but you can encourage, you can support and you can make the difference that your friend needs.

I think we all can use encouragement.  But remember Special Needs Parents (especially us moms) fight a lot of unseen battles.  Some days are super long and sometimes almost unbearable.  Cheer them on and encourage them.

My Favorite Recipe

Some days are just exhausting.  There always seem to be so much to do and never enough time to do it.  Even for me; a stay at home mom.  There always seem to be bonbons left in the container to eat or one more show on that I want to watch (Just Kidding...some humor to add to my day that is oh so gloomy).  But there is a lot of stuff to get done and it never seems like you have the time to do the important stuff, you know just snuggling with your kids, just having fun with them.

Raising a child with special needs is no different at all.  The journey is different, yes, but the duties are no different.  Have you loved your child today?  Have you taught them about God?  Have you demonstrated unconditional love?  Have you taught them about forgiveness?  To me, those are really the basics that we need and the rest will come as it should. 

This weekend I had the honor of speaking at an event for the Ronald McDonald House.  It was quite an amazing event.  However, afterwards many people came up to talk to me.  I felt very uncomfortable.  They were telling me that I was inspirational, it was the best speech they had heard, that I was an amazing mom.  As good as that was making my ego feel (hey, I have to be honest) it made me rather uncomfortable.  I just shared my story.  I am no different than you, and I would pray that you would make the same choice to love your child, no matter what.

One conversation in particular stuck with me though.  As she was talking she said how do I manage all of the information?  How do you pick and choose what to do?  Aren't people always telling you what to do and judging you?  I manage information by binders which I seldom refer back to, I pick and choose by trial and error, and yes people are always willing to tell me what worked for them in their situation and it does feel like some days people are judging a lot more. 

I enjoy cooking.  Some days I wish I had more time to do it, but I enjoy doing it.  Each dish that I make is only as good as the recipe.  Each dish that you prepare you probably add or delete an ingredient or two.  I often do this because there are certain flavors that I enjoy more than others.  Sometimes it may be too hot for one of my children or a flavor that they are not particularly fond of. 

But how do you choose a recipe?  I often do by looking at the dish.  Sometimes I read through the ingredients to see if there are a lot of steps.  Sometimes I do by the amount of ingredients (and what is in my cupboards at the time).  Sometimes a friend or a family member has passed on the recipe.  Sometimes I heard about it from someone at church.  Sometimes it is a dish that someone else has prepared for me.  I think you get the point.  There are so many ways to choose.

What do you do when you have the recipe, when you are making it?  I ALWAYS add, modify, delete some how.  I cannot follow a recipe.  If I do, it never turns out.  I put my own touches on it.  I look at it and decide that this does not fit for my family and I make it fit.  I look at it and see if I can substitute another ingredient for one that I do not have.  And when it is done, it is not always like the recipe; but it is mine.  I have created a masterpiece of my own that fits my families tastes and preferences.

To me, parenting is a lot like that.  Actually life is much like that.  I talk to people, search out support groups, read information, read blogs, read books, talk to the professionals.  I do what I can to seek out the information.  I ask questions.  Once I have gathered that, I process what works best for my family.  I change and adapt according to ability level, the size of the room....you get it.

This concept is so easy, yet we all tend to forget it.  If everything was a cookie cutter recipe, there would be no variation.  The fact is you can give out a recipe for the same sugar cookie and every one will come back different.  Some will be decorated differently, some will have used real butter while some use margarine, some will have real vanilla, while others have imitation vanilla.  None of them are wrong, just different.  They are modified to what works best for one person.

We are like this as humans and I think it is always a good reminder.  I do what works best for my family.  I am always more than happy to offer the suggestions that work best for my family, but it is what works best for my family.  Just as we found in medicine things that worked with Lydia were completely off the path from what should have worked.  Just like how I parent Ellen and Allison and Lydia; they all require a different type.

I am not special because I have a special needs child, I am adapting to my situation as I pray everyone would.  I think life would be a much simpler way if we all remembered this.  We should not push our views and our ideas down other people's throats, we should pick and choose what works best for us.  We should be willing to offer but not pushy.  We should not compare ourselves to others, because we do what is best for us in our circumstance, while they are doing the same thing for them.  Life is full of choices (have you been on pintrest recently to see all of the different recipes?) and we all have the ability to make choices for ourselves.  Respect one another.

I do what is best for my family and I am counting that you do the same thing.  Tough lesson to learn sometimes, but oh so important.  This is a great reminder of me as I get stressed out sometimes when people have a different idea of how to accomplish something, of how to help in a certain situation.  Pick the perfect recipe for your family, even if you must modify!