Friday, February 20, 2015


So, it has been a long time since I have written my thoughts. We have battled through several weeks that have been difficult in the sense of getting no answers again and watching Lydia be sick. There have been many things that have had happened recently that has left me in deep thought. We had a ministry visit our church the other day that deals with adults with intellectual disabilities and it left me with many thoughts. A friend asked me to send her an e-mail for a paper she was working on regarding my thoughts about schooling and faith and our journey with Lydia. So, I need to get some thoughts out. I am sure this will be very random and jumbled but maybe you can make better sense out of my thoughts than I can!

Shepherds Ministry came to visit our church the other weekend and there were two things that really hit me. Talking about the worth of a person with a disability. Why is it when someone talks about a disability usually we go for the things they can't do or the typical stereotypes? When I see Lydia I don't see those things, she is a person, she is my daughter, she is my best friend, she drives me nuts, I see determination and capabilities. I don't believe that is always what I describe though. I think that happens with prenatal diagnosis too, you hear the bad and not the good. I don't believe that this is exclusive to Down syndrome either. Why? I don't know but it makes me sad. It makes me sad that there is something inside of me that tells me I need to describe Lydia with her disabilities and not put her abilities first. Maybe it is because the way we test and do IEPs, all of that is based on what she can't do. Could things change a lot if we looked at what she can do? I don't do that with my other children, even if they are behind. What makes it so different with her?

As I think about this, for me it really goes further and is more about where I get my identity. I believe that Lydia was fearfully and wonderfully made. I don't believe that she is some kind of mistake or anything less than any of my other girls. But I allow the voices in society, the stereotypes and the negativity to clutter my mind. I allow those whispers to take over and tell me she is less, she is not this, and she is not that. That is false. She is a daughter to the King of Kings, she is a beating heart and love. She is a friend and a sister, a daughter and granddaughter, she is a friend and a student. She is so many things and Down syndrome is one of them but it does not define her. I am going to try harder to get my identity from Christ and not this world. I am going to try to have Christ's whisper louder than the things of this world. I am going to try to describe her by her abilities and leave her weaknesses alone. We all have weaknesses and they should not be highlighted for any individual.

The other point that hit me really hard when I heard this gentleman speak about Shepherd ministries was they types of relationships we have in our lives. I remember in the hospital when a group of doctors came in and called Lydia an "it." It devastated me to the core. I was so appalled that someone could think she was less than a beating heart that she was a thing and not a human. I wondered what made her so different than anyone else standing in that room. I had the opportunity to talk to one of the doctors, who was a student, and share with her how her choice of words affected a mom. I hope it was a learning experience for her, I know it was a huge learning experience for me.

This gentleman from Shepherds ministries talked about an I Thou relationship and an I it relationship. How many of us truly value a relationship? How many of us really put others before our needs? How many would do something kind for a stranger? How many of us stop and pay attention to the little details in our relationships? If I am being honest, a lot of time I treat my relationships more like a possession rather than a human being with feelings and emotions. I don't try, but I am not good in this area. But God has given me one of the best teachers, Lydia. Lydia is GREAT at being a friend, at putting others first, at noticing all of the small stuff, at just making you feel good about yourself. It is a true gift and I have a lot to learn from her. But how often am I too busy and I miss out on this blessing. I want to work harder on being better at having more I Thou relationships and treating everyone as God wants us to.

I had a great opportunity to share this analogy with Ellen. She is starting to struggle with friendships. I think this is an important aspect to teach our children at a young age. It is important that they realize a healthy good relationship from an unhealthy relationship. I am not good at it, so it is a journey we will take together. But how thought provoking for me to see this and understand more about the relationships in my life. And to realize what a blessing it is that Lydia holds for so many to learn from.

I also have had a sting of jealousy lately. I try so hard to battle against it, but it is hard. Eric and I had to miss our Valentine's Banquet at church because Lydia was sick. We spent hours watching her get poked, seeing blood pour out of her, holding her as she screamed out in pain. We spent time talking with doctors trying to find a reason of why she was turning blue. We spent time in prayer as to what our next steps should be. Only to come home and watch her with no real answers. I was wallowing in self pity because I couldn't be present at this banquet. But the truth is God had other plans for us and I needed to accept that. I was also a bit upset because I knew that my husband would not have planned any type of Valentine's Day surprises for me. I was jealous of the other ladies who got something, who were able to spend time with their significant other, who enjoyed their time. However, I can focus on poor me or I can feel blessed that I am able to care for my daughter, that my husband cares enough about his family to be there for his daughter too. There are so many things that I can be thankful for, but it just seems so hard to chose that and not pity myself.

I also struggle because yesterday Lydia had to miss her field trip. Lydia has missed a fair amount of school and will probably continue to do so. We might even have to stick with half days. Sometimes it just is not fair. She already is completely behind her peers, not talking, not understanding things as she should, not being able to do many of the tasks and now she has to miss out on school and the opportunity to learn and she has to miss out on fun. I know that she does not know the difference (sometimes that makes me even more sad) but I do as her mom and I struggle with that. Sometimes I feel so jealous of the other moms and dads who can go about their life completely unaffected by a sick child or a child who is significantly behind. Sometimes I get angry because I see just how far behind she is and there is nothing I can do, this is who she is. Sometimes I want to scream and yell. Maybe is sounds silly, but these are my true feelings. It is hard to have a child who is behind, to see that flashing in your face, to watch others excel while your daughter struggles. It is hard. And sometimes it is harder when you are surrounded by folks who don't walk this journey and have no clue. I feel alone and isolated many times. I struggle. I realize no one is doing anything wrong, they are simply living their life as they should. Jealousy is a terrible thing and I try so hard to not let it have a place in my life, but it creeps in and catches me completely off guard. It debilitates me and it isolates me from others. It keeps me from being a good friend often times. I know it shouldn't, but it is a real road block for me. I hate that she is behind sometimes and I hate that she has to work so hard to accomplish things, and I hate that her medical issues dictates our life all of the time. I hate that we have to give up so many normal things because we are on this journey. I struggle. It is hard.

I also get confused about what is right for her for schooling. I realize that no one can tell me that other than God and our family. Inclusion, non inclusion, partial inclusion, where to go, public or private, how much therapy does she need? It is all so confusing and overwhelming. I want to do the very best thing for her and I want to give her every opportunity in life. I read the research, I talk with other moms and dads, I talk with teachers and I hear a lot of people's opinions. But when you boil it down, Lydia is a beating heart and an individual. What works for one may not work for her. It will be a decision that we have to make and probably one that we will have to revisit often. I don't think there is one correct answer, it will be what works best for Lydia and that will be something that we will just have to "live" into! However, I am beginning to realize that she knows what love is each and every day, she understands that she has a family who would do anything for her and will always be there for her. And really, isn't that what every child deserves? Love can take us all a lot of places. Knowing you have support and people who will never give up on you is worth more than many things. So I will continue to pray and search for answers, trying to figure out what is very best for our bug. It is so overwhelming and when you throw in her on going medical conditions, it adds so much more to the confusion, but I will never stop loving her and that alone will take her to great heights.

Some days are so easy and some days are so hard. But as we sat on the couch this morning, I looked at her and she looked at me and I was overcome with unspeakable joy. She really is one of my very best friends. She challenges me, she loves me, she teaches me, she angers me, she surprises me, she encourages me, she inspires me, she tests me, and she will always be my little Lydibug. She has given me a new perspective on life, she shows me things through a different lens that not many get to experience. She is a gift to me from God, on loan to me for a short time.

Life on the special needs journey, medical issues or not is tough. I have learned to be open and honest with these feelings but most importantly to not dwell on them. I recognize them and I try to move past them. I think in life, no matter what your trial is, if you dwell on it you can live in a state of self pity. Life is not fair but one thing that Lydia has taught me, what you don't know is OK. She doesn't know she is behind, she doesn't know she is different, she doesn't know she missed her field trip, she doesn't know that it is not "normal" to not live at a hospital, to be sick, and to be poked all of the time and she is just fine with that. She embraces right where she is at and she makes the most out of every moment of her life. I have the best role model given to me and I will continue to learn the lessons that she is here to teach me! And I am blessed because of that.

Tuesday, February 10, 2015

The Battle Within

It's Tuesday.  The alarm went off at 4:30 AM.  I stumbled out of bed and tried to quietly get down the stairs without seeing any eyes.  I open the door to the basement and my eyes are immediately opened to the stark cold air.  I make my way to my bike and loose myself for a moment.  I worship to the music, I play on Facebook or I read a devotion. 

I come back upstairs and the smell of throw up hits me, I see the piles of laundry that need to be folded and I see a tiny little girl snuggled in the fold of her daddy's arm.  She is struggling to breath and you can hear the mucus suffocating her with every breath.  I lean over to kiss her and the sweet smell of her has been replaced with a horrid vomit smell that radiates from her pores.

Reality hits me when she reaches up and says "momma".  She is not going to school today, she will most likely not do much other than rock on mommas lap today.  She is sick, there is something wrong.  We will wait the lab results from yesterday and we will do our best to keep our head above water.

As I drop the older girls at school, I fight back tears.  I grab Lydia and hold my breath because the vomit smell is almost intoxicating.  I sit in the car and choke back a flood of tears.  I say a little prayer and I drive away.  The tears, however, cannot be stopped.  My eyes are flooded with water and my jeans are soaked with tears.  I convince myself that coffee would make it all better.

As we drive home, Lydia's head starts to bob.  She is having a hard time staying awake.  I know that she wants to give me a hug, because that is just what she does.  But, she can't fight the Sandman and soon sub comes to sleep.  I continue to drive and sob as I try to drink my coffee.  By the way, the coffee tasted OK, but it did not calm the battle that was raging within me.

It is Tuesday, that means that I am suppose to be as school volunteering and Lydia is suppose to be at school learning and interacting.  I am suppose to be busy making plans for the Valentine's banquet that I am planning for this coming Friday.  It was suppose to be a very productive day.  This is my day.

Doesn't sickness know that Lydia is WAY down weight and needs to eat?  Doesn't sickness know that she cannot afford to not eat, she needs to gain weight like yesterday?  Doesn't this sickness realize that I have better things to do than tend to a sick child all day?  Doesn't this sickness understand that I am so over you?  Doesn't this sickness understand that it is no longer welcomed here?

I cry because I am battling selfishness.  I don't want to give up the little bit of independence that I have recently found with Lydia attending school.  I don't want to have to stay up late planning the last minute details for the Valentine's day banquet.  I don't want to have to put myself on the backburner.  I don't enjoy listening to a child moan and smelling like vomit.  I don't like doing the same load of wash over and over and over.  I don't like seeing my daughter in pain.  I don't like having the stress of having to feed my child.  I hate this struggle of feeding. All. Of. The. Time.  I don't want to share my strawberries and bananas with my middle child, can't I just have something for myself?  For once?

I get it, I get what my mom was talking about when I was younger.  There is no privacy as a mom, there is no real mom time, and there is no room for selfishness.  And there is no time for me throwing myself on the floor and throwing a tantrum like I often want to do when one of my children are doing that.  Can mom just join in once?

I struggle with selfishness.  But as I had my good cry, drank my coffee, played some games on the Kindle and rocked this sweet child, I realized that I am so blessed.  I have a daughter that I am able to rock and nurture and care for.  I am able to see life through a different perspective and I am blessed.  I have been shaped and molded into an entirely different mom than I ever imagined myself to be, and it is amazing.

Often times walking this path of a special needs parent who has a child with significant medical needs, I am exhausted and struggle with things.  However, I realize how blessed I really am to have Lydia in my life and to learn about her perspective on life.  Being a mom, special needs or not, it is hard, it is exhausting, and often times very overwhelming.  We do things we don't want to do, things we never thought we were able to, and we learn unexpected lessons that seem to take the most room in our hearts.

I am sure that I will continue to battle selfishness every. single. day.  However, I pray that I understand how significant these moments are.  I am sure one day I will miss the smell of vomit and rocking a sick whimpering child.  Maybe not!?

"Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up." Galatians 6:9