Tag Archives: babies

The Roller Coaster Ride of Life

God blessed us with another pregnancy. We were excited, but nervous. Then after just a few weeks I had a miscarriage. The on call doctor said there was likely something wrong with the baby and it would not have developed properly. She did not know about Katie. I was beyond devastated! The only thing I could think was, this baby had the same thing Katie has, but so severe it didn’t make it. To me that meant NO MORE KIDS.

I spent some time mourning, grieving the loss of this child. I later heard a story on EWTN radio, a priest said that when we go to heaven any child we loose to miscarriage will be waiting for us. Since I never met this child I had never thought of that, but since conception that baby had a soul. That brought me great comfort, I can’t wait to meet her or him someday.

I also grieved the loss of hope for the typical child I wanted so badly.  My desire for a typical child was not to fill a void, Katie filled my heart. image (12)I loved her so deeply, I can remember worrying that I couldn’t love another child as much as her. But I just knew our family was not complete.

After seeing my regular OBGYN, she reassured me that early miscarriages were so common and it was more likely a progesterone issue rather than developmental problems. After waiting the required 3 months we quickly got pregnant again. I look back in amazement, how did we have that courage. God is the only source of that peace because everything on earth said no.

“Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths.” Proverbs 3:5-6

If we rely solely on this world we will never make it, because in our worldly minds we have no idea what is possible. Our minds are so closed off to only what we see, what we know. But with God there is so much more, so much hope and so many beautiful opportunities.

During my entire pregnancy God gave me comfort and peace. I felt in my heart, “Whatever God has planned for this baby I will accept.” The first part of the pregnancy was smooth other than gestational diabetes which restricted all the yummy foods and required daily insulin shots. A small price to pay for a healthy baby. But when week 33 arrived, the same week Katie was born, I was admitted to the hospital for low amniotic fluid. Walking from the doctors office to the hospital was so surreal. My mind was racing, but since the issue was different from my pregnancy with Katie I felt okay. I ended up on bed rest for the rest of the pregnancy.

Thankfully we had so much help with Katie from our parents. I don’t know what we would do without their constant love and support.

image (10)In May of 2008, we were blessed with the arrival of Alexis Drew Crook one early Sunday morning. She was perfect in every way. I quickly realized I was wrong, instantly my heart grew bigger as I fell in love with my new baby girl. Lexi must have thought she was a rock star as we marveled at all the things she could do. Katie loved her too, I can’t explain it, but I knew from the beginning these sisters had a different love, a deeper love, one that would go beyond words spoken or hugs given, one founded by God for a special purpose.

A sister is a gift to the heart, a friend to the spirit, a golden thread to the meaning of life.

Isadora Jamesimage (9)

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We grew into our not so normal life. We learned how to use a wheelchair, Lexi learned what seizures looked like way too early in life and Katie just couldn’t gain weight. At 5 years old she only weighed 25 pounds. After years of struggling with the idea of a feeding tube it finally became a necessity.

So we did it, that’s when I really felt like a nurse. Syringes, feeding pumps, extension tubes, a button in her stomach, it was all quite an adjustment. Not to mention the doctor read an x-ray wrong and did not do a procedure she needed, so at first she literally threw up everything we put into her belly.  I have never been hurled on so many times! Cleaning up vomit was as ordinary as cleaning toilets in our house. It actually became a dark time for us.

The part that no one told me, because I really didn’t have a special needs mommy mentor, was that just because you recover from one stage does not mean you’ll never hit the bottom again. I feel like this life is a roller coaster ride, just when you think you’ve made it, your seat goes flying down hill with no end in sight.

The feeding tube required a whole new way of life, since she vomited so much we could only feed her small amounts every 2-3 hours, which is basically what we still do. It makes leaving the house a challenge and for a long time we just didn’t leave. My anger grew again as I became bitter and jealous of everyone else’s life. We now had a typical child and I wanted a typical life. That was an emotion I didn’t expect. Before Lexi, I didn’t know what normalcy was so I didn’t miss it as much. But now I wanted to go and have fun outside of four walls that seemed to be closing in on us.

Just because you have a close relationship with God does not mean you avoid pain. With my stronger faith the depth of this pain just didn’t seem as bad. I knew I had gotten myself out before, I knew I could do it again.

“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gadly of my weaknesses, so that the power of Christ may rest upon me.” 2 Corinthians 12:9

Next post the Roller Coaster continues.

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)