Tag Archives: walker

Personal Best

I learned a new term this weekend, it’s a runner’s term so surely I had never heard it. A precious friend ran a full marathon in honor of Katie, image2 (1)after 26 miles she met up with Katie to push her across the finish line. It was truly one of the most amazing moments to watch. As we hugged afterwards one of her family members threw out the new term, they told her she had a PR. What? She made a personal record, this was her 6th marathon and the fastest she had ever run. She immediately said it was all Katie, our precious daughter had inspired her to perform better.

This made me think about how Katie has brought out PR’s in so many of us. I like to call it our Personal Best. Her life is a marathon every day. When watching her walk in her walker for just 10 minutes you see the struggle, you see the fight. When she cries out to us, trying to communicate I see the frustration and confusion. When we put food in her mouth and she sits there refusing to swallow I see the discomfort. All of these things and so much more are apart of Katie’s daily life, yet she seems so happy most of the time. I truly believe her bond with God helps her see past this life into what really matters.

Before Katie I never learned what it meant to truly push myself. I exercised pretty regularly and worked hard in my career, but looking back those were pretty basic. Today, I see that pushing toward my personal best involves a different way of thinking. It means taking my own wants and needs out of the equation. We all learn this in parenthood, but it is intensified in the special needs world.

Early on in Katie’s life I just didn’t get it, I felt so sorry for myself because I wanted her to be normal, I wanted her to be what I had always dreamed she would. Now I see so clearly that she is so much better than normal. She has taught me to push myself to live this life to the fullest, but not to rely on it for happiness because what comes after is so much better.

image3 (10)Katie brings out the best in those who take the time to know her. Family members are dedicating their careers to helping other kids like Katie. Complete strangers come up to us to tell us how just seeing Katie touches their hearts. So many people donated to our marathon fund to raise $2000 for a local Early Intervention agency. These are all beautiful examples of Katie pushing us to do more with our lives.

The most amazing transformation in my life has been my desire to be the best disciple for God I can be. If my life had gone according to my plan, I am not sure where I would be in my faith walk. My bible study group is just finishing up St. Paul’s letter to the Hebrews and a recent verse spoke loudly to me. “Endure your trials as discipline, God treats you as sons. For what son is there whom his father does not discipline? If you are without discipline, in which all have shared, you are not sons but bastards.” (Hebrews 12:7-8) Trials are not punishments from God they are lessons that teach us to be our very best. Just as a parent disciplines out of love, God sends us trials because He adores us and wants us to dig deeper. I know this because Katie was once my trial, but I now know she is my greatest teacher in life.

I have so much admiration for my friend who ran for Katie. She loves to run and enjoys pushing hIMG_0757er body to achieve more, but this marathon was different for her. She said when her training got tough she thought of Katie and focused on running because Katie can’t. The 20th mile of the marathon is always her most difficult, but with Katie on her heart she pushed through it faster and stronger than ever before. Without my friend, Katie would never cross a finish line. God pushes us all to look outside of ourselves and to focus on how we can help others reach their personal best. I’m thankful for my friend and so many others in our lives who run this race with us, because very often we need a good push.

 

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)