Monthly Archives: October 2014

Running in Heaven

Her hands and feet were turning a grayish black color and they were drawing up to her body as if she were gasping for that last bit of oxygen she could pull in. Her face was starting to turn a dusky blue color. The hospital room quickly filled with doctors and nurses, then one doctor pulled a Bag Valve Mask off the wall and started pumping air into her mouth. I had seen enough episodes of Grey’s Anatomy to know that this was really bad. Questions were flying at us, we tried our best to answer. Then as quickly as she had entered the room she was rushed to the ICU where she would be put on a ventilator. I truly feared the worse for my precious Katie.

This summer, June 2014, the scene above resulted from a 2 1/2 hour long grand mal seizure and one lung collapsed after being crushed by her convulsing body. Why does Katie have to go through this after all she endures every day? image (20)Why does she have to suffer like this? It is a question that I can’t begin to answer! But I do know that after 4 days on a ventilator and 3 more days in ICU and the Step Down unit she came home. And within a few weeks she was completely back to her normal self. Our prayers were answered, just not according to our time frame.image (18)

 

 

 

 

 

So why was she spared, while other children die? Why do parents have to lose their children in horrible kidnappings? Why do some people suffer extremely painful diseases that lead to death? Why do innocent children die so often in school shootings? photo (5)There is so much suffering in this world today. So if God is all powerful, which we know He is, then why doesn’t He spare us from this pain? Because it is part of His plan.

“More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.” Romans 5:3-5

When I get weak and overwhelmed from caring for Katie, like this summer’s week long stay in the hospital, I ask God, “Why Me?” and He always says, “Why Not You? Are you better than Jesus Christ?”  Jesus suffered tremendous physical and emotional pain while on this earth. And that pain and suffering led to something so unimaginable…Heaven opening up to us!  Following are some excerpts from a pamphlet someone gave me titled Suffering, How to Make the Greatest Evil in Our Lives Our Greatest Happiness, by Father Paul O’Sullivan.

“Why does God allow us to suffer? Simply because He is asking us to take a little share in His Passion…  God suffered all the dreadful pains of His Passion for each one of us. How can we refuse to suffer a little for love of Him?…   If we accept the sufferings He sends us and offer them in union with His sufferings, we receive the greatest rewards. Five minutes’ suffering borne for love of Jesus is of greater value to us than years and years of pleasure and joy…   Suffering borne patiently brings out all that is good in us…   When God gives us any suffering, He always gives us strength to bear it, if we only ask Him. Many, instead of asking for His help, get excited and revolt. It is this excitement and impatience that really make suffering hard to bear…   Even the greater sufferings that may fall to our share from time to time become easier to bear if we accept them with serenity and patience. What really makes suffering difficult to bear is our own impatience, our revolt, our refusal to accept it. This irritation increases our sufferings a hundredfold and, besides, robs us of all the merit we could have gained thereby…   We may do all in our power to avoid or lessen our sufferings, but we cannot avoid all suffering. Therefore, it is clearly necessary for us to learn how to bear them.” Father Paul O’Sullivan

First of all, my greatest suffering comes from watching my child suffer, I am fully aware of the fact that I don’t know what true physical suffering is like at all. I know there is pain out there for which the depths I cannot even begin to imagine. Please know that I am only sharing sources that I have found comforting, I am not claiming to be an expert on the subject. But I can truly say that those words changed the way I look at suffering. I try now to stop myself and take a step back, to ask for help and help is always there. I think when we try to escape our sufferings we are actually punishing ourselves.

“Whoever does not bear his own cross and come after me cannot be my disciple.” Luke 14:27

Another reason I think we suffer in this world is because of natural consequences. When God made Adam and Eve His plan was for them to stay holy and pure, but He gave them Free Will. We all know how well free will went for them, in no time they were chomping on that apple. We were all made exactly as Adam and Eve, God equipped us with everything we need to make the right choices in life, but he also gave us that darn free will. That free will is what so often get us in trouble. We want to do what feels right, what makes us happy right now. But that doesn’t always line up with what God wants and we sin.

As we fall there are natural consequences. Greedy business men put chemicals in our food to  make them bigger, last longer and produce more money which leads to obesity, heart problems and I believe cancer and death, Natural Consequences. Sexual relations outside of marriage with multiple partners is portrayed as the norm and AIDS and STDs enter the world, Natural Consequences.

Because we want to gratify our every thought, we want more money, we want what we want, we want to avoid anything that is not comfortable we in turn create our own sufferings. God wants us to be like Him, putting good before evil, putting Him first. I believe there is beauty in suffering, God will bring good out of all suffering. Like someone dying a horribly painful death to cancer and then hundreds who loved that person gather every year to walk in her honor and raise money for her cause. Those loved ones were forever changed by her suffering, they use it to create good in the world.

photo (4)We often lose sight of the fact that this life is only a blink of an eye compared to eternity. If we accept our sufferings on earth with grace and dignity we will be rewarded in heaven. I know one day Katie will be running, dancing and talking Gods ear off when she enters the gates of heaven.

“For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.” Romans 8:18

I Hope You Dance!!

My entire body filled with heat, my heart opened and the only thing that could fill it was God. It was October 2012, I was doing two faith based book studies. Both books changed me forever. It wasn’t so much the books, they were both really good, but it was simply the Holy Spirit using this moment to take over my life.

After this moment all I wanted to do was learn as much about God as I could. In my spare time I read, researched, prayed, wrote and simply learned how to give myself to the Lord. I no longer wanted to watch TV, or scroll down Facebook…I wanted more and more and more God. I really cannot explain the feeling, it was amazing and all consuming.

I was then blessed by a group of ladies that started meeting for a Bible study once a week, we still meet today. Before this study my knowledge of the Bible consisted of two phrases, Old Testament & New Testament. Our leader was sent to us by God, she goes through the books of the Bible sentence by sentence and explains what the Fathers of the Church say about that passage. If you’re not familiar with that term. The Fathers of the Church are the early Christians, like St. Augustine and St. John Chrysostom, who were taught by the apostles. What better source? Jesus taught the apostles, the apostles taught the Church Fathers and they wrote it all down. If you have a question about what a certain passage or verse means, the Fathers of the Church hold the answers. We have finished the books of  John, Acts of the Apostles and are now studying Matthew. I finally feel like I know the stories of Jesus and what He wants from us.

“When you look for me, you will find me. Yes, when you seek me with all your hearth, you will find me with you, says the Lord, and I will change your lot…” Jeremiah 29:13-14

I can truly say this is when I began to feel true joy, joy that I had never known before. I finally knew my purpose on this earth was to do Gods will. Everything else was falling into place. Being a mommy to Katie, Lexi and Drew made more sense. photo shoot 2013 052My role as a wife took on new meaning. One struggle I’ve had writing this post is making sure that I don’t sound self righteous, I’m so far from perfect it’s not even funny, and I certainly don’t know it all, not even a quarter. I screw up every single day, but I’m just writing about what God has shown me and what I TRY to aspire to everyday.

image (17)God has revealed a beautiful message through Katie’s life. Katie was not blessed with legs that function, a brain that forms words to speak, hands that write or even eyes to see. But I got all that and more, so how dare I waste one single minute. A song that portrays my feelings is by Lee Ann Womack, I Hope You Dance.

I hope you never fear those mountains in the distance, Never settle for the path of least resistance, Living might mean taking chances but they’re worth taking, Loving might be a mistake but it’s worth making, Don’t let some hell bent heart leave you bitter, When you come close to selling out reconsider, Give the heavens above more than just a passing glance, And when you get the choice to sit it out or dance. I HOPE YOU DANCE!!!! 

To me these lyrics mean to do everything you do with your whole heart and with all your effort. And since God is supposed to be the center of our lives. That means our relationship with God should have every ounce of our being. I am not going to even begin to say that I do this always. I struggle everyday because this world we live in has so much to take us away from God. Actually, I often feel this world is telling me God is not important. The world right now is so far from what God wants. I don’t think He wants us to modernize our values. He wants the single most important thing in our life, more important than our spouse, children, job, wardrobe, car and home; to be Him.

“Do not conform yourself to this age but be transformed by the renewal of your mind, that you may discern what is the will of God, what is good and pleasing and perfect.” Romans 12:2

The special needs journey or any struggle for that matter can be long, lonely and isolating. It doesn’t always lead us down the right path. I’ve taken many a wrong turns. But what I know for sure is the wrong road, the one in which we try to escape our struggles, will only lead us in circles. It only leads to more disappointment. As I’ve re-routed my GPS many times I found the only path is the one God wants us on, doing His will everyday, following His commands as diligently as we can. To keep myself in check, I try to reflect on the 10 Commandments and ask, “am I doing what God wants?”.

image (16)Another lesson Katie has taught me is that nothing on this earth will fulfill the longing we have. Katie has true joy and does not know anything about the materialism of this world. Again, I’m no model Christian woman, but I know God is my only source of true joy. I love listening to Father Robert Barron, he gives weekly homilies on http://wordonfire.org/. He often talks about this and once he had a fabulous example. Think about some of the worlds greatest sports figures. Barry Bonds, Mark McGwire, and Alex Rodriguez, to name a few, were all the best of the best, they had home run records, world fame and all the money you can imagine, yet they chose to take steroids in hopes of getting more. When it comes to worldly things nothing is ever enough. Why?

photo (3)That longing that we try to fill, that yearning for more was given to us by God for one purpose, to bring us closer to Him. We try and try to fill it with success, money, friends, and so much more. I don’t know where you are on your faith walk, but if God is not on the tip of my tongue always, I ask, why am I not giving Him every single bit of me, making Him the leader in my life. Do I want to sit it out or DANCE??

In my next post I will talk about why I think we have to struggle while on this earth.

 

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.

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)

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)