Tag Archives: hope

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.

Hitting Rock Bottom!

Complete devastation is the best way to describe my emotions. What did I do wrong? If we had waited to have a baby, maybe this wouldn’t have happened. Did the diet coke I occasionally drank do this? Did I take the wrong prenatal vitamins? Why ME??? Since I carried her in my tummy I felt like I was to blame, something must be wrong with my genes. I felt guilty and wanted answers. Why and How are questions we often ask and I can say over time you do see glimpses of the answers. “I chose you because you were the lucky one, this is how she was meant to be for a very specific purpose on this earth” those are the answers I know now, but in the midst of grief I couldn’t hear that.

After the initial shock I got angry. How could God do this to me? I felt like I had lost my child. I was grieving for the loss of the perfect baby I had pictured in my arms since I was 10 years old. The baby girl I would pretend that my doll was as a child. I can’t imagine losing a baby, so I certainly don’t mean to minimize that. I look back and realize I was lucky to have her, but at the time I didn’t feel lucky.

Katie couldn’t nurse, so I pumped and gave her bottles (which was a nightmare because apparently my milk ducts were not down with that). At first, when we would give her a bottle she would suck and scream, we didn’t know why, I felt helpless. The one thing we do as mommies is feed our babies. I would sit in the rocking chair and beg God, “please let her take the bottle this time”. But she wouldn’t, she couldn’t, then I’d say, “how cruel you are God, you put this child on earth without the most basic ability”. My anger grew deep.

It is very difficult for me to talk about this anger towards God…I love Him so much now, I feel tremendous guilt! At the time I couldn’t see the gifts he was giving me, like the Occupational Therapist who helped us feed her. She told us Katie had an uncoordinated suck, swallow, breath pattern…translation…she was choking on the milk with every bottle (talk about Mom of the year). She taught us a technique to feed her and it went much better, but still I couldn’t hold her in my arms to feed her like a mom does with a typical newborn. And Katie cried ALOT! image Probably 60% of her waking hours and those waking hours were always at night, from about 9pm-5am. Andy and I took turns on night shift because I was still working in radio early mornings.  Between sleep deprivation and the helplessness you feel when you can’t soothe your babies cry, I think we were absolutely losing our minds, it was a very dark time.

Simple trips to the store were challenging because she hated riding in the car and spit up (that’s the nice baby term for projectile vomit) all the time. And the stares, I hate admitting this now, but I really struggled with worrying about what other people thought. That is one thing Katie has taught me…who cares!! But I remember one time going into a store and one of the workers said,”oh, your baby looks drunk” (Really, thanks, that’s the look I was going for). So I mostly avoided going out and became pretty isolated.

This is when I hit rock bottom. I was so mad, I would literally scream at God, it was in a very dark place. My precious, faithful mom kept saying just pray and it just made me madder. I felt so abandoned, I was begging God for help…not healing just help her take her bottle, stop crying, stop throwing up everything she ate, but it all continued. I pretty much stopped going to church, because I didn’t feel comfortable putting her in the nursery and she cried the whole time. image (1)We had her baptized, but rather than seeing God’s beauty I just got mad because she cried during the ceremony. I would never talk about this anger towards God if I didn’t hope it would help someone. This is so raw and difficult for me to write, but if one person feels a fraction of this anger right now, I want you to know it will pass. I talked to a priest and a counselor, but getting out of the depths of this was so much bigger. It was truly a process. I can’t say that this was the only difficult time I have had, but it was the hardest to get out of, because I couldn’t see the light at the end of the tunnel. All I saw was doom and gloom.

But it was time to put my big girl panties on and be her mother. I wish it were that easy, but I did have to put my emotions aside because I loved her and she needed so much. To be honest that is what got me out of bed everyday. We spent most of our time doing therapy, therapy and more therapy. Physical, Speech, Occupational, Vision, Swimming and more. There was progress, she sat up around 9 months,image (2) began to crawl around 2 years old, she learned a few sign language signs. I can remember our routine, she was my only child and I had quit work by this time so it was ALL about her needs. The Early Intervention therapists would come into our home and do therapy with us, they were literally angels that gave me so much hope. I know several of you are reading this right now…I hope you know that you were a major contributor to getting me out of that dark place. I could see a glimmer of hope. I was slowly starting to find my way.

Besides all of our therapy appointments Katie had at least 4 full sessions a day with me at home. I was pushing her so hard. I began to battle with the guilt, I have to be doing therapy all the time. The battle surrounded two things, what to expect and what to accept. We still had no diagnosis so we had no idea what her full potential could be. Not that a diagnosis tells you that, but you at least have a guideline of what others are doing. OLYMPUS DIGITAL CAMERAThis guilt continues today, I think it will continue until the day I die. I want to always do the very best for her, help her do all the things God has planned for her. But does that mean working her hard everyday,  all day or just loving her and making sure she knows God. I now know it’s all about balance. But finding this balance is not easy for any parent.

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Things were getting better, by now Katie smiled and laughed…oh that laugh…it was so contagious. I loved her so much. God had begun to show me (I began to listen) that life was no longer about me, I had a job to do and I was accepting the challenge.image (4)