Levi with his Mom

We had dreams from the beginning of having a beautiful family and had loved that thought more than any other venture in life. My husband and I had suffered a miscarriage in March of 2008 and were beside ourselves with grief. My sadness had melted away in realizing my hopes and dreams for that little peanut were now in the arms of Jesus. A few months later in June of 2008 we again found out we were expecting. Little did I know that this was no ordinary pregnancy, this was to be something much more in our lives. We went in for a routine ultrasound in September and were waiting to hear whether it was a girl or a boy. What we didn’t expect was what he said after that – it looks as though your son has a brain malformation. I’m sending you in for an MRI to confirm this.” On the way out of the radiologist’s office I burst into tears and looked at my husband as though we had another child being taken from us. After the MRI my doctor called and said, “Ashlee, the baby has what they think to be holoprosencephaly.”

The first thing I did was went online and immediately found negative statistics and news that gave me a heavy heart. For the first couple nights Josh and I just held each other and cried. We had lost a baby and were given the news that we had a 3% chance of carrying this baby to birth and even then he would only live a couple months at most.

Oloprosencephaly is a diagnosis where the brain fails to divide into separate lobes and is actually fused in the front. Because of this fusion many structures in the brain are absent or are compromised and therefore can’t tell the body how to function correctly. There are varying degrees of this and Levi has what is called semi-lobar holoprosencephaly – or a severity level more middle of the road.

I didn’t know what else to do – so I prayed. It was during this time that I learned how to communicate and envelope my whole self into what God had intended me to do on this earth. Through my pregnancy with Levi I learned quickly how to put my ideas of what my perfect life was aside and open myself up to what God wanted of me. To hear these words of giving yourself to God is one thing, but to actually do it is another. There is such a deep, intense happiness that comes with being open to God’s plan. You know that no matter what happens, no matter what is given and what is taken away – it was supposed to be just like that, just how God intended.

As the months went on we found ourselves struggling with almost everything we had to do. It was a first baby and when it came to buying clothes, a car seat, a stroller we didn’t know what to do. Was there a baby to bring home? Also, we were staking out where we might want to have a funeral for our baby if that’s what God had wanted. More than anything, we enjoyed the time that we spent feeling him kick and move. We did our best to bring him to the places we wanted him to go – back to Nebraska where Josh is from, to the park, to baseball games. He was very much a part of us and we loved making those memories with him.

In Februaury of 2009 Levi Joshua made it into the world – breathing on his own with an unmistakably strong heartbeat. They rushed him to the NICU and confirmed the diagnosis. They also diagnosed him with microencephaly, colobomas in both eyes, hypothyroidism, hearing impairment, grade 4 reflux, and he also needed a colostomy and a feeding tube. He spent his first 18 days in the NICU fighting to live. And so did Josh and I – we gave Levi everything that he was needing and knew that if after that he still wanted to be in heaven we would let him go. Levi got stronger and came home one snowy March day. It was one of the proudest days of my life. Most parents are thrilled when their child wins an award or a spot on the team, or some monumental milestone. In my mind, my child had far out done that. When modern medicine and the brightest doctors said he shouldn’t be here due to his diagnosis and Levi not only beat those odds, but got through additional obstacles to get there and now was home – I felt that if that’s all Levi would do, he already had made me the proudest mommy. The next months would be a rollercoaster ride of ups and downs. We had spent nearly 5 months of the next year in the hospital. Levi had a bowel obstruction surgery, a nissen surgery for his reflux, and a couple of close calls where he was so sick we were served natural death papers. Looking back on the last year – the road was long, there was sadness, there were bad days, it took a lot of perseverance, but more than that it was heaven on earth. My little Levi is 14 months old now. I look back on what we have been through as a family and can say that he’s the glue that holds us together. There was never a time that my husband or I “snapped” and “couldn’t take it anymore”. We deeply understood that Levi is our gift – there is an innate reason he made it here, defied the odds, and touches peoples lives. Levi has taken my life and made it a truly beautiful place. My biggest piece of advice to a new mother facing something like this is to not let the fear of the diagnosis scare you from seeing through to your child. A diagnosis isn’t what a child is, its just something he has. People ask me all the time if it makes me sad that Levi can’t sit or stand – that he can’t say my name and I reply, “ Absolutely not! There is no loss. Levi is and will be exactly what God wanted him to be and I don’t feel a loss because he’s not what other children are. He has a different purpose. Levi is meant to teach and touch in a different way and I am so blessed to be a part of that.” Just because your child might not do or act like others do doesn’t mean that they will give you any less love – in fact I think they give you more, you just have to see it through your heart rather than hearing “I love you, Mom” through your ears. These kids touch you on such a deep level that normal means of communication almost seems unnecessary. It can be daunting at first, you will go through hard times, but being on the other side of it I can tell you that not only did I cherish the journey with my son, I would do it all over again and would be open to another child just like him in my life someday if that’s what God desires. My eyes, ears, and heart are now open to something so much greater than what I ever thought it would be and I would have never expericed such an amazing quality of life had my beautiful baby boy not given me eyes from heaven to see its beauty.

Levi continues to thrive. He sees therapists, specialists, and knows just about every surgeon by name : ) He has almost mastered holding his head up, sitting on his own, and will stand for about 15 seconds at a time with help. He loves to laugh, be tickled, jump up and down, and hang out with his daddy. He loves being outside, going for walks, and hearing new sounds. He knows how to communicate his needs without saying a word and is very aware that he has his mommy and daddy wrapped around his finger. He surprises medical professionals everyday with what he’s doing and the progress he has made. I thank God for every moment we get to spend with him, every laugh, every cry. Knowing I have a little piece of heaven to have in my life for awhile and knowing that I had a hand in creating this awesome little boy fills my soul with happiness. May we all feel the intense joy that comes from watching God work within our lives. I love you, my son, how I love you!

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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.