By: Christine Krawczyk
When you decide to have a family it’s an exciting time. Visions of a healthy and happy family are wonderful and we couldn’t wait to get started.
I ended up having postpartum depression with our first child and it was terrifying but then two months later I was madly in love with him and couldn’t imagine life without him.
My husband insisted we have another child right away. He wanted another boy so that our sons could be close like he and his brother were. I was apprehensive. I wasn’t ready, but I went along with it because I wanted to make him happy, and I did want more children. We didn’t have much familial support, but we would be o.k. and could raise our family just fine.
So pregnant I was when our first born was only eight months old. The pregnancy seemed to be going just fine with no complications. The 20-week ultrasound was said to be normal as well. At my 34-week checkup the floor dropped out from under us. It was discovered our son had brain damage and was missing the left side of his brain.
It was then that everything became so scary. They did all types of scans the next day at a fetal specialist’s office. No one could give me any answers really. They thought they saw facial clefting and his limbs were not measuring symmetrically. They did an amniocentesis and said everything was normal, there was nothing genetically wrong.
The next 4 weeks were probably the longest of my life, waiting for our 2nd son to be born. Ben was born under an emergency C-section because he was deemed in danger during labor. When I delivered him, it was clear there was something genetically wrong. He had a bilateral cleft lip and palate, his stature was very short, his umbilical cord was maybe 12 inches long and only had two blood vessels instead of three which may have caused him to have his stroke in utero. He had a simian crease across each palm, and he was rushed to the NICU. Ben’s blood was drawn, and they did a lengthy study of his Chromosomes where it was discovered he has a micro deletion on Chromosome 1 of q23-q25.
I shut down for a bit and my husband became OUR rock of Gibraltar. I delivered Ben an hour from our new home that we had just moved to, and I had a 17-month-old toddler to take care of. We had no family to help us…it was a tough month. My amazing husband visited Ben every day on his way home from work. Luckily, he worked close by. Ben couldn’t eat on his own. He couldn't suck because of his cleft lip and palate so he was placed with an Ng tube. After a very long month he was cleared to come home, and I was terrified! The journey began, and we dug in. We had a special needs infant and a toddler to care for and it was just my husband and I who had to get through this essentially alone.
Our very first appointment was to see a geneticist. This is where we discovered that no one else in the World at the time of his birth had this same exact deletion. Ben was so special that his geneticist even wrote a paper on him. Because no one had this same exact deletion we had no idea what to expect. Would Ben walk, would he talk, would he be potty trained, would he be able to eat orally, would he live a long life, no one knew. No one is guaranteed those things but when you have a healthy child you assume. Ben has also had to endure many surgeries in his young life. He is quite the trooper I must say.
Ben did learn to walk at the age of 9 thanks to his AMAZING physical therapist. He is mostly non-verbal, he is mostly potty trained during the day but still not at night, he still has a G-tube because he doesn’t eat enough orally to sustain him, and he cannot drink liquids at all because he aspirates and can drown.
Fast forward almost 22 years and we have all survived! It's been very challenging at times but it's been rewarding as well. There is no one like our Ben and I certainly cannot imagine life without him. Ben has a heart of gold; he has a big, beautiful laugh and a hilarious sense of humor (do not pull his finger😊).
A miracle occurred 4 years ago. Elizabeth Pumala, an angel in our eyes, had a plan…I don’t even remember how we found out about her and her plan. Ben became one of the first pioneers of Matthias Academy!!! Hallelujah and AMEN for Matthias Academy! Ben thrives there…absolutely thrives. Every single person at Matthias is just wonderful, and we are grateful for all of them. I truly can’t believe how lucky we are to be a part of this wonderful establishment and these incredibly amazing humans that work there.
God has a plan they say, and I believe that is true. I don’t know if I am the best mom to Ben but I’m still trying and will never stop.
You can support Liz's vision and adults like Ben by buying a brick! Click here to do that!
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