knowledge | Finding Gods Purpose for Special Needs

How do you connect with someone who can’t talk, who can’t say I love you, who can’t even look you in the eye? And how do you love someone you can’t connect with? Before I had Katie I often asked those questions when I would meet a person who had severe disabilities. I couldn’t understand how you could build a relationship with someone who couldn’t talk. I also remember a phone conversation with my sister when Katie was a newborn, before we knew the extent of her disabilities. I said, “I can handle a lot, but I don’t think I can deal with this if she can’t talk. She has to be able to talk!!” Fast forward 11 years and Katie has never spoken a single word, but she communicates love like no one else.

To answer these questions we have to understand what it means to truly love. On Valentine’s Day a few years ago I was listening to a homily by Father Robert Barron. He was talking about 1st Corinthians 13. You know, the one about love that you’ve heard at most every wedding you have ever been to. It was read at our wedding, but I had never taken the time to study what each verse meant.

“If I speak in human and angelic tongues but do not have love, I am a resounding gong or a clashing cymbal. And if I have the gift of prophecy and comprehend all mysteries and all knowledge; if I have all faith so as to move mountains but do not have love, I am nothing. If I give away everything that I own, and if I hand my body over so that I may boast but do not have love, I gain nothing.” 1 Corinthians 13:1-3

Love is the center of everything. We can have all the things this world has to offer and all the things God has to offer, but if we don’t know how to love, none of it matters. Love is to will the good of other people. When I heard that statement I instantly thought of my parents. They love me so intensely just like that, and never expect anything in return. They taught me how to love Katie with an unconditional love. If we are kind to others just so they will like us, or bring someone dinner in hopes they will return the favor or give a gift knowing they will give us one back, we are thinking about ourselves. We have ulterior motives, not love. When we put other’s happiness in front of our own we are showing pure love.

“Love is patient, love is kind.”

I lose my patience with Katie just like with my typical kids and it’s always because I am putting myself ahead of her. I want things done on my own time frame and according to my will. This is a tough one with a special needs child because very few things happen the way I want them to. Milestones are not met, outings are cancelled because she is sick, therapy sessions are cut short because she isn’t cooperating. If I were loving as God wants, my emotions wouldn’t be a factor. If we take ourselves out of the equation and look at what the other person needs, patience comes flowing out of our love for them. And kindness is the expression of this patient love.

“It is not jealous, is not pompous, it is not inflated, it is not rude, it does not seek its own interests…”

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Jealousy isn’t a factor in my relationship with Katie or my other kids, but it does rear its ugly head in other relationships and it always comes from my ego. When someone else has more, does something better or just seems happier than us, we automatically feel less than. When in actuality their accomplishment has nothing to do with us at all. If you are a parent think about how good it feels to find out your child has succeeded at something. Then think about the same scenario with someone you are not as fond of, the accomplishment stings a bit. But we are called to love everyone, even those who don’t always make us smile. Jealousy usually leads to gossip, because if we can find someone to agree with us we inflate our own ego…the opposite of love.

“… it is not quick-tempered, it does not brood over injury, it does not rejoice over wrong doing but rejoices with the truth.”

Being Katie’s mommy requires a lot of one on one work teaching her very basic things, sometimes she does great and others not so much. At times when she has more difficulty learning I get frustrated, quick tempered…why? Because I feel like I am failing, I’m not doing enough to help her. What is that? You guessed it, my ego. It’s not about me, it’s about her and doing all things for her with love and not focusing on the results. Think about a time when someone really ticked you off. Then think about the root of that anger, it likely had something to do with your ego. But if we love properly we are not focused on our own feelings and we let insults roll off our back, because it’s not about us.

“It bears all things, believes all things, hopes all things, endures all things.”

It is hard to bear other peoples struggles, sometimes I just want to leave the room when Katie is sobbing inconsolably. Sometimes I do walk out for a breather, but I try to stay by her side, bearing her pain, enduring her suffering because I love her. When we love others we are ready to bear anything for them. When they are in pain, we endure that pain too because we are focused on helping them not on our own self-interest. I have great hope for Katie, I have no idea if she will ever speak or walk independently, but I have hope, there is always hope. We have hope for those we love, hope that they will realize that life is about growing in their love for Christ, hope that they realize staying stagnant in their faith walk is never enough for God.

“Love never fails.”

God is love and God is eternal. If we love the way we are called to by God, there is nothing in this world that will end it. That’s a bold statement because people hurt us all the time. But again love is not concerned with our hurt, it’s focused on others. God calls us to love everyone even our enemies, it is His greatest commandment.

“If there are prophecies, they will be brought to nothing; if tongues, they will cease; if knowledge, it will be brought to nothing. For we know partially and we prophesy partially, but when the perfect comes, the partial will pass away. When I was a child, I used to talk as a child, think as a child, reason as a child; when I became a man, I put aside childish things. At present we see indistinctly, as in a mirror, but then face to face. At present I know partially; then I shall know fully, as I am fully known.”

Father Barron explains this passage as a comparison to our spiritual immaturity. When I was a child, obsessed with myself, with wealth and worldly pleasures I spoke only of that and did not have God as my priority. When I became a man, I put God first, I realized He is the only thing that matters. He also says this passage compares earth to heaven. We only know partially here in our flesh, but in heaven we will know fully and it will be more beautiful than we can even imagine.

“So faith, hope, love remain, these three; but the greatest of these is love.”

So how do I love Katie when she can’t say it back? Because I LOVE her, I bear her pain, I want what’s best for her, I know it is not about me and what she can do for me. It is the essence of unconditional love. That is the beautiful gift Katie has given me, teaching me that love can be so perfect when we humble ourselves and put our own ego aside for the good and benefit of someone else.

What is normal? To me it is typically everything that we are not…going out to eat for a family dinner, going to the movies as a family, everyone piling in our bed to watch Saturday morning cartoons. I felt like I was looking out of our window at everyone else living the life I wanted to live. I was in a much better state of mind at this point, but I grew bitter and jealous of everyone around me. The sad part was I didn’t even realize it.

At church I joined our MOMS group (ministry of mothers sharing). This group of ladies is like no other I’ve ever met. Although, people come and go, the group is so clearly led by the Holy Spirit. Before I had Lexi I attended a few meetings, but it just made me sad, in the mommy category I had nothing in common with these ladies. But once my life was more “normal” I opened my heart. And thank God I did because this ministry has changed my life.

We gather once a week and share our faith walk through book studies, outreach programs, and other fun mommy topics. I had never met a group of Catholic women who seemed so dedicated to their faith. Before MOMS group my Catholic faith was something dear to me, but I had never taken the time to really learn why we do what we do. In the Catholic faith there is ALOT to know. We have many rituals and deep beliefs that were founded by Jesus Himself. But I didn’t know all of this, it was just something I did because I always had. No matter what your belief system is there is so much to learn, we should all know exactly why we believe every single thing we believe. It’s not enough to just go through the motions, I know that first hand because when in crisis I was completely lost.

“For this very reason, make every effort to supplement your faith with virtue, virtue with knowledge, knowledge with self-control, self-control with endurance, endurance with devotion.” 2 Peter 1:5

We had a taste of normalcy with Lexi and we were ready for more…more kids. In the world of special needs parenting the most difficult of all time subjects is who will take care of my child when I’m no longer on this earth. I am her only mommy, the only one who will ever love her with a mother’s love. If I’m not here, who will make sure her hair is brushed out of her face, who will give her ‘I love you’ ear kisses at night before bed, who will make sure she is loved and knows Gods love, who will make sure she has dignity every day of her life. That is often handed down to siblings. But that is a tall order for one, so maybe Lexi needs a brother or sister? I know that may not sound like the most loving reason to bring a child into this world, and there was much more thought and prayer that went into it, but in this special needs world practicality is a must.

Some drugs are ototoxic or can cause harm to your auditory system thereby buy generic cialis causing tinnitus. It is important for a new mom to create an approved exercise program, stay hydrated, get as much sleep as the newborn will allow, and eat the right kinds of food, and abstain from drinking and smoking. cialis super When ordering this drug, cheap viagra 100mg he can quickly place an order to buy online medicines. As time passed, different experts introduced different belt systems levitra online http://djpaulkom.tv/sim-djs-dj-paul-x-carnage-bang-she-killin/ in Kenpo karate. When an ultrasound revealed we were having a boy, I nearly fell off the table. I wanted a boy, but never thought it would happen. Andrew Paul Crook, was born 5 days after Jesus’ birthday and he loves his sister in a way only he could. He always gives her kisses and wants to make sure she’s okay. But I worry, is that too much pressure for my children, will they feel burdened? And God asks, “Do you feel burdened” (No!) “I gave them what they need”. But still the emotions surrounding this subject always bring fear.

“Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you.” Deuteronomy 31:6

This new baby brought great joy, but another child also brought great stress. And this particular boy was a wild one. I adore Drew, but he has always been a handful, for goodness sake he broke his arm before he was even 2 years old. I began to loose my footing by putting way too much pressure on myself. Katie needs more therapy, she’s not communicating or walking, it’s my fault, my kids need to eat healthy and watch less TV, Lexi needs to know all of her letters before 4K , is Andy happy?, I need to be exercising more and on and on the spiraling thoughts went. It always ended in explosion. I was yelling alot! I’m talking snow monster from the movie Frozen yelling, you know the part, “AND DON’T COME BACK!!” I was not being the mother I wanted to be, so a friend recommended an amazing therapist.

I discovered that I was stalled in a grief stage. What? Katie was 8 years old, wasn’t I over this yet? She helped me realize that each new stage in life brings new challenges and I will go through this grieving period at each new discovery…(Great!) But once I realized I was grieving over this picture of a normal family life I wanted so badly, I started to heal. She helped me see that what everyone else has is not what it appears and probably not so normal. You know, the grass is not always greener on the other side. I’ve come to know that every single one of us struggle with something and when we look at each other some of those struggles are more obvious, but just because you can’t see them doesn’t mean they are not there. Ken and Barbie are not perfect! And the really cool thing is that God customizes us for our own struggles. I will keep mine thank you very much and you can have yours because that’s the way God wants it.

Next post I will talk about a very NORMAL moment in life that altered everything about me…for the better.