My husband Andy and I got pregnant with Matthew after three years of trying to conceive. When we found out we were pregnant we were overjoyed. Excitedly, I went out and bought books for us to learn what to expect during pregnancy. As far as we were concerned, we were preparing to parent a healthy baby. Andy and I also searched for daycares and pediatricians to further prepare because we wanted to be sure we had the best for our baby.
Likely the greatest coincidence of my life is that before getting pregnant with Matthew, I had been working at St. Joseph’s School for the Blind (SJSB) for four years with students with visual impairments and other disabilities. One student that particularly impacted me was a high energy, fearless and engaging three year old that instantly grabbed my attention. I often commented aloud at SJSB that I wanted a boy just like him. His name was Matthew and I was so enamored I decided we would name our first child after him.
When our son Matthew arrived it was one of the happiest moments of my life. However, when I was left alone with him the night he was born, I noticed that the white part of his eye (sclera) was mostly gray. The following day I shared my concern with our pediatrician. After observing several facial abnormalities including a partial cleft lip, she informed us that Matthew might have some type of syndrome which she would investigate later. However, she reassured us that it was normal for babies to be born with scleras like Matthew’s and that this would resolve on its own.
The following day as we prepared to be discharged from the hospital, Matthew started to sound congested. I told my husband to take him to the nurses station to get him suctioned and after about twenty minutes of waiting I went to look for them. To my dismay, Matthew was surrounded by doctors and nurses who informed us that he was having difficulty breathing and could not be discharged. Three months, three hospital transfers, and one code blue later we finally received information about his medical condition. Matthew was diagnosed with a basal encephalocele. This meant that his skull had not fused completely by the base of the nose and he had some of the lining of his brain with cerebral spinal fluid hanging over his palite obstructing his breathing.
Due to the obstruction, Matthew was only breathing through his mouth and was also diagnosed with reflux which compromised his breathing even more. The doctors recommended for Matthew to have a NG feeding tube to provide him with continuous small amount of formula to resolve this problem temporarily. It was a relief to finally know what was causing the breathing issues and at the same time it was terrifying to know that it involved his brain. Once the neurosurgeon explained that this was a rare condition and that he had only done two surgeries Andy and I freaked out. We were stressed, anxious, nervous and scared for our baby. We didn’t know how much this condition was going to affect Matthew’s development and we were afraid to have an inexperienced doctor, as we considered him at that moment, to get close to his brain and possibly create more problems. Overwhelmed by the news, that night I cried myself to sleep. Thankfully, Andy and I leaned on one another and also our family (including some with medical backgrounds), friends, co-worker and different religious congregations that were praying for us. This village of support helped immensely. Andy also joined a group on social media of parents of children diagnosed with encephalocele while I held on to my faith. After the feeding tube was inserted successfully, the doctors finally listened to me and decided to look into my concerns with Matthew’s eyes. We soon learned that his optic nerves had not formed correctly, probably because of the encephalocele. He was also diagnosed with Optic Nerve Coloboma in both eyes, Nystagmus and Strabismus. The opthamologist told us that Matthew was completely blind and had no functional vision.
The decision to discharge Matthew was made shortly after we got all these diagnoses. A tracheotomy was recommended as part of the discharge plan. Again this information was overwhelming and we were scared because now we were talking about three different surgeries within his first year of life. One to put in the trach, then the encephalocele repair and lastly the trach revision. The ENT explained that Matthew didn’t need any other intervention at the hospital and presented the trach as the only way he could go home. We scheduled the trach without much thought because we were ready to go home and trusted that this was our only option. When the nurses that had worked with Matthew saw the discharge plan they informed us about the risk of infection, the risk that he would never talk or the possibility that the trach could not be reversed. The nurses also informed us that they had seen the way that we cared for Matthew and that we could continue doing the same for four months at home. It was a hard decision to make because we appreciated the risks. We wanted to be as conservative as possible in treating Matthew’s medical issues but we were afraid to make the wrong decision and lose our baby. We took three CPR classes because after each class we doubted our decision and were scared that Matthew would stop breathing and we were not prepared to save him. However, we trusted the nurses because they were by his side and our side everyday. We felt comfortable caring for Matthew under their supervision and somewhat confident that we could continue to do the same at home. This was one of the hardest decisions we had ever been faced with as adults or parents. But, we gathered our strength and took Matthew home with oxygen and an NG feeding tube. We went home feeling distraught with all his new diagnosis to wait until he was seven months old to have surgery on the encephalocele.
The following period was very challenging. Throughout the night Matthew’s monitors would beep because it was reading that he was not getting enough oxygen or that his feeding bag needed to be filled. We would wake up to check on Matthew on those days that 30 minutes went by without something beeping and find him soaked along with all his bedding because he had pulled out his feeding tube and the formula was pumped everywhere except into Matthew’s stomach. We had very little sleep during these months and when ever we slept it was not restful because we were listing out for the next beep. We could not have visitors because the doctor told us that one cold could literally kill Matthew. Andy’s mother stayed with us to help us since I had to return to work because we needed an income and I need to save days to take time off again for Matthew’s surgery. It was not easy for me to go back to work but it did help me step away from my situation for some hours while I concentrate on helping others.
Due to my job and interactions with the blind, I became convinced that Matthew had some vision because he was reacting visually to objects. I registered Matthew to receive early intervention and he received occupational therapy, physical therapy, developmental intervention and vision services from my place of work. We learned the exercises, asked questions about the purpose and requested “homework” because we were determined to give Matthew the best chance at excelling to his full potential even though we really didn’t know what that was. In the meantime, at home we treated Matthew as a completely blind child and narrated everything to him. We also described information about his environment. I used the information that I learned at work from teachers for the blind and therapist to also help Matthew’s progress.
At about the time Matthew was five months old we went for a second opinion and the opthamologist confirmed the diagnoses. He added that Matthew had some vision and that one eye was worse than the other. He could not tell us at this point how much vision Matthew had. At age 1 ½, Matthew got his first glasses. This experience was amazing! We took him to the supermarket after picking up his glasses. There, for the first time, Matthew let go of my hands and ran down the aisle. It was the first time Matthew stepped more than five feet away from us and visually explored his environment. My husband and I were emotionally overjoyed.
Around this time we had our second child, William. With no health or developmental issues and an easy-going personality, William quickly brought our family a sense of balance. As toddlers, Matthew spoke for William and William saw for Matthew. Matthew being the older brother would always answer for William when someone asked William a question. William helped Matthew understand his environment better. Matthew asked William, “What’s on the other side of the monkey bars?” William answered, “swings.” Matthew then asked William to take him to the swings. Their relationship was natural and to me, remarkable. William also helped us understand Matthew’s visual deficiency better. For example, not realizing he couldn’t see beyond the monkey bars, we had thought that Matthew stayed by the monkey bars because that was what he preferred.
Matthew is now eleven and his level of maturity exceeds his age, likely due to his life experience. He has a wide attention span and a love for learning since he was young. Matthew is able to read large print and braille. He loves to read books and also enjoys music. At home, we speak openly about his disability and the limits that this imposes. We focus on his abilities and seek creative ways that he can participate in the things that he is interested in. One of the reasons he is thriving so beautifully is because Matthew is a committed hard worker who gives his all in everything he is involved with. We have also been extremely fortunate since Matthew’s support system has not only included us, but he has also had dedicated teachers who have created a safe educational environment.
As a parent, my goal is for Matthew to be confident and proud of who he is and I believe he can have a bright future. It is our goal for Matthew to grow up self-reliant, while accepting that adaptations or help can lead to his own independence. Most importantly, that tools he may need are not a measurement of him as a person who can thrive. Last year, Matthew asked me a question that I had never thought about. He asked me if when I wished for a child the boy I named him after, did I also wish for my child to have a visual impairment? I told him that I never thought of the other boy as a blind child. I loved his personality, and the way he stole everyone’s attention when he walked into the room. I further explained that the other boy was sweet but admirably feisty and persistent. He was also smart and wanted to be challenged. Matthew seemed surprise and somewhat confused with my response because he feels that “the blindness” is important and part of who he is.
I hope and pray that others see my Matthew for whom he is and not his limitations, the same way we all want to be seen.