Tag Archives: anger

My Not so Normal Life

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

image (15)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.

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. image (14)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. image (13)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.

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)