Tag Archives: corinthians

The Greatest of these is LOVE

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.photo (7)

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.photo (6) 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…”

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. photo (8)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.”

cropped-lA2.jpgSo 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.

Gaining Perspective

One early November morning I was fast asleep when an unfamiliar sound on Katie’s monitor woke me. It was a rhythmic squeaking sound…strange. I slowly walked to her room. What I saw was gut wrenching. Her tiny, 2 year old body was convulsing violently in a Grand Mal seizure. I screamed for Andy. What do I do?…What do I do? I picked her up and she was turning blue. Call 911!! I laid her down and blew air into her mouth, nothing, she just kept convulsing with her eyes rolled up. This sight, which would become so familiar to us, was horrifying! All I could think was, she is dying, everything has come to this, it is all about to end. Then her body stopped and she rested. By this time the room was filled with firemen and one said she likely had a seizure and is now in a postictal state. As my heart began to slow down I noticed I was wearing only a t-shirt and underwear…no pants! I was still wearing my big girl panties for all the firemen to see. I slowly walked to my room to get dressed.

At the hospital she slept for hours which was scary, we didn’t know if she would wake up and be her normal self. All of the sudden I realized she could do more than I had thought, because now she was just lying there and I wanted so desperately to see her precious smile.photo She had more seizures and stayed a few nights in the hospital. She did get back to her normal self and went home with seizure medication. I went home with a whole new perspective.

Perspective is defined as a particular attitude toward something: a point of view. For me it wasn’t a sudden moment, but I slowly started to change my perspective from, “Oh poor pitiful me, why did you have to give her seizures, God” to “Thank you God for sparing her life, for giving us all these wonderful milestones to celebrate”.

“So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.” 2 Corinthians 4:18.

I cannot speak to all tragic situations, because I know people go threw a whole lot more pain than this, but for my journey with Katie I can say it’s all about allowing God to guide my perspective. Facing the possibility of losing her helped me realize how blessed I was. The saying I always call to mind is, “It can always be worse”! image (7)

I finally realized God had been there the whole time, He was working so hard to help me put one foot in front of the other that I couldn’t see Him. God had carried me for so long and finally I felt loved again, like an old friend was back in my life. I began to see His gifts in my life. God brought us to a new church, Prince of Peace quickly became our family. There was a precious nursery worker who adored Katie, we could finally go to mass and pay attention. There was no special needs ministry and I struggled with that, then God said, “Why don’t you start one!” so we did. The church was wonderful and allowed me to do whatever I needed. We also started a Special Needs Sunday School program. It was such a blessing.

My heart was finally happy again, nothing had changed for the better, in fact things had gotten worse, we now had seizures, but God was showing me a new way of life.

“A joyful heart is good medicine, but a crushed spirit dries up the bones.” Proverbs 17:22.

I am aware of the fact that sometimes depression can be much too deep, sometimes there can be a chemical imbalance that needs to be addressed especially after childbirth when your hormones are crazy out of whack. So please don’t feel bad if you just can’t get that perspective turned around. I’ll say it again, it is a process and it takes a long time and I did need medication a few times, but it never worked long term for me.

Katie was working so hard everyday. She learned to use a walker with assistance. She could walk straight, but needed help turning and she got tired pretty quickly. But she used her walker in the Mercedes Marathon walk at The Bell Center and we were so proud. image (6) She mostly crawled around to get to things she wanted. Katie became a master at activating music and light up toys…she amazes us to this day, give her a toy and she will figure out how to make it work in minutes. She became a frequent flyer as we took trips to Texas Children’s Hospital and Children’s Hospital of Philadelphia, two failed attempts at finding a diagnosis. image (8)

Will we ever know? I wanted a diagnosis so badly. I became quiet obsessed, spending way too many hours on the internet. If I could just come across that one piece of the puzzle, we would know. I longed to see other kids similar to Katie, get a glimpse at what her future may hold, hug another mommy who had been through exactly what I had been through. I did find friends in similar situations who were life savers. I cannot express enough that support from other “special” parents or others going through whatever you are going through is crucial!! But getting a diagnosis was not God’s plan.

In starting this blog I’ve had an “ah ha” moment. We still have no diagnosis today. As I watch other parents put all their passion behind raising awareness about their child’s syndrome and raising money for a cure, I think I should be doing that. But that is not God’s plan right now! If we had a diagnosis I would be so busy with that and not have time for this blog. This is where God wants my passion right now.

The other aspect of a diagnosis was in having more children. Without a diagnosis we just weren’t sure what to do. I had not yet mastered listening to what God wanted, I just kept questioning. If we had another child would it have special needs? Would this baby have more severe issues? Would that be negligent of me? What does the future hold? Finally we stopped asking and started trusting. I’ll write about that in my next post.photo (1)