Imagine knowing from the time you were a little girl that you would have a child with special needs. You would have thought I would have been more prepared when KJ arrived. I always wanted to have a son, so I was elated when I heard those three words during my sonogram, “It’s a boy!” Jumping for joy, I couldn’t wait to share the good news with the rest of my family. My husband Kevin and I were expecting our second child together and felt the birth of our son would make our family complete. I was thirty-one years young and there wasn’t a significant need for me to have genetic testing completed because of my age.
However, due to both my and my husband’s familial history, I thought it was best to have some type of genetic testing completed. I was too afraid to get an amniocentesis done so I went with the less invasive chorionic villus sampling (CVS) due to instances of special needs in both of our families.
During my fourth month of pregnancy, I went to Maternal Fetal Medicine (MFM) and had my CVS genetic testing done and everything came back normal. In fact, all of my tests throughout this pregnancy came back normal, unlike my previous pregnancies. I had experienced an ectopic pregnancy and subsequent miscarriage and had gestational diabetes and preeclampsia during my daughter’s pregnancy. It was hard to believe God was giving me exactly what I desired but never had for myself – a healthy family.
On December 11th, 2014, I left work early for a prenatal appointment. During the hour’s drive to my appointment, I blasted my radio and sang my tunes, with a big smile on my face the entire time. At 36 weeks, I figured it would be another routine appointment and was completely unprepared for the instructions to go straight to the hospital to give birth. My doctor discovered I had low fluids around my baby, called Oligohydramnios. My tests showed high protein in my urine and once again I was diagnosed with preeclampsia.
Snow was falling when I left the doctor’s office. I sat inside my car and cried from the unexpected turn of events. I woke up that morning anticipating a great favorable prenatal appointment followed by a delicious rack of lamb from Outback Steakhouse for lunch. Instead, I had to make a detour to the hospital to deliver my son early. I called my husband to deliver the news and he did his best to calm and console me.
During labor, my son fared well despite the low fluids, and we patiently awaited his arrival. Suddenly, my contractions became excruciating. I had never felt this type of pain and each contraction caused me to vomit. After my daughter’s relatively easy birth, I remember jokingly saying I hoped I could wear my pain on the outside so my husband could see labor and delivery were no easy feat. Who knew I would live to regret those words?
When it was time to push, the doctor whom I thought was so impersonal during my prenatal visits, was the most nurturing, encouraging, and gentle doctor. At 6:06 am, our 4lbs, 11oz son Kevin Jr. arrived. He wasn’t crying, which concerned me. It was a scary scene as several of the hospital staff were across the room working on him.
Finally, someone brought KJ over to us and allowed us to kiss him. He was then transferred to the NICU due to low oxygen levels and jaundice. I was crushed as I didn’t even get a chance to nurse him or give him skin-to-skin contact. Blaming myself, I reasoned if I had gotten to the hospital sooner or had not gotten an epidural this would not have happened. I even considered past transgressions may have been the cause of my son’s condition.
As I recovered from delivery, we received regular updates on KJ, but I just wanted to be in my son’s presence. Upon entering the NICU hours later, we were shocked to see KJ in a box, with a feeding tube in his nose. He was unable to regulate his body temperature, but he was finally able to breathe on his own.
All I wanted to do was hold my baby, but I couldn’t until he stabilized. I wasn’t able to nurse him either, as KJ never latched. I remember there being so much sadness in my husband’s eyes. We never really talked about what was going on; instead, we prayed and tried to uplift each other with affirmations that KJ was going to be okay.
My heart shattered when I was discharged from the hospital three days later while KJ was still in the NICU. My husband convinced me to go home, shower, spend some time with our daughter, and try to get some sleep. I tried but could not sleep. The next morning, I rushed back to the hospital and convinced the hospital staff to allow me to stay in NICU with KJ past visiting hours. After eight long days, KJ was finally discharged from the NICU. With a clean bill of health and no further health issues identified, we were excited to bring KJ home and start our new life together.
A few days after being home, I started noticing little things; KJ wouldn’t track people or objects with his eyes and he wouldn’t make eye contact with me when I nursed or bottle-fed him. As the days went by, he was not responding to our voices, his head support was like a noodle, and his tracking was not getting better. At his two-month appointment, I mentioned all of this to his pediatrician. While the doctor was not dismissive, he asked us not to worry yet.
As the months went on, we started to notice other things, such as KJ’s clasped thumbs, which required miniature casts/braces for a couple of months. He also wasn’t making sounds. As much as I tried not to, I couldn’t help but compare him to our over-achieving daughter who spoke six words at six months and started walking at eight months. KJ’s social skills were also almost non-existent as he had a blank response whenever we would play with him.
Eventually, KJ received Early Intervention, which included occupational, physical, developmental, and speech therapies. We had four to six appointments every week for a few years. Still, no diagnosis.
For his one-year well-visit, we were asked about his current milestones. KJ could clap, he was finally smiling, he communicated using different cries, he had gained full control of his head, he started playing with his feet when he was on his back, and he could bat at the hanging toys while sitting in his activity chair.
These were all great milestones we were ecstatic to see KJ achieve. Yet, these were all milestones typical babies his age would have achieved months prior. At one year old, KJ could not sit up unassisted due to very low muscle tone. Tracking with his eyes was still a difficult skill, but he had made some progress now that he was wearing glasses. He screamed during tummy time, and he was not crawling yet. In fact, he was barely rolling over.
After relaying all of this to Pop’s pediatrician, we finally had an appointment with Children’s Hospital of Philadelphia (CHOP) Genetics. Six months, and several evaluations and blood tests later, at 18 months of age, KJ received a diagnosis: 3p25.3 Chromosome Deletion, which means his 3rd chromosome did not form properly.
I recall feeling a bit relieved as this affirmed I was not crazy. My husband had still been in denial commenting “he’ll grow out of it”, or “he’ll get it one day”. I do not remember if we discussed the diagnosis, but I remember the look on my husband’s face when he found out about all of the challenges our son had ahead. It was like he realized he may never have the typical father/son experiences.
Kevin researched everything he could about the deletion, whereas, I read the main informational document given to me, digested the information we discussed with the genetics doctor, and left it there. I don’t know if I was in denial now, but I remember saying “wow, this explains my son, but this is not my son. It was like a light went on explaining some challenges, but he did not have many of the serious medical issues associated with his diagnosis, including heart failure, kidney failure/disease, and eye cancer, to name a few of many.
In two short months, everything would change for us. Barely 15 pounds at 20 months old, KJ had his first seizure. Fortunately, I was holding him, but nothing could prepare me for what I saw or felt at that moment. I felt beyond helpless as my baby’s full body stiffened and thrust as his eyes rolled back in his head. We would later learn KJ has a seizure disorder only controlled through medication. Another diagnosis to add to his growing list of problems.
By this time, my life with consumed with caring for KJ, mostly because of the many appointments. I was working a full-time position in my school district but had taken on another part-time position in the district. Our support system of my mother-in-law and my team of sisters were a Godsend and certainly one of the best gifts He gave to our growing family.
It would take me almost three years to fully understand the magnitude of what we faced. From the first day of his life, I had always been KJ’s greatest advocate and spent a great deal of time helping him attain the things his typical peers were achieving. I made sure our family was inclusive and never skipped over KJ because he couldn’t do something unassisted.
I modified everything to ensure KJ could participate. None of this mattered until one summer when I hung out with one of my closest girlfriends who had been pregnant same time as me and I watched as her daughter played, laughed, joked, danced, and try to reason with her mom. It was a realization moment for me, as I knew my son may never share the same experiences.
Later that summer, I was in church talking to one of my girlfriends who had been pregnant at the same time as me – our boys are only six days apart. I watched her son run, jump and play with other kids and for the first time, I was jealous. I was jealous and started to feel God loved her more than me. Momentarily, it was difficult for me to be around her. I instantly started to feel guilty about my thoughts, even though they were short-lived.
I secretly harbored sad emotions and was feeling like God’s unloved stepchild. So many people were telling me how awesome of a mom I am and how I made parenting a very busy little girl and a little boy with special needs, look easy. I made jokes in a voice I had given to KJ as if it were him making the jokes. I moved his body around as if he was a superhero, all to not only include him in activities but to also make others feel comfortable being around us and not feel sorry for us.
Yet, despite my husband also being KJ’s parent, I felt isolated and very disconnected from others, including him. I thought there was no way anyone close to me could truly relate to what I was experiencing. While they were empathetic and supportive, my family and friends could never truly understand my journey because they didn’t always have all of the facts since I was so good at keeping things to myself. To pull myself out of this, I had to increase my prayers and even begin to heal through counseling. I’ve always been a strong mom, so I did not know I needed to heal.
As a teacher, I was always drawn to students who were exceptional and gifted. I reflected on all of the individuals I’ve been blessed to interact with before having my own exceptionally gifted son. I realized these were signs from God letting me know He saw how special I am and that He hand-picked me to showcase how fantabulous one of His sons who might have otherwise been overlooked, is.
Even though I have worked with and taken care of people with special needs for most of my life, there was no way I could have ever prepared myself for the emotional connection and burden I would have to endure as a result of KJ’s condition. Thankfully, he is making turtle strides toward walking, he claps and smiles, and he really enjoys giving hugs and kisses. KJ is working on using switch buttons to communicate, and his gait trainer to assist him with walking. His break-dancing skills are unmatched by any of his typical peers. KJ is an absolute rock star!
I get sentimental watching him scoot around the house to chase after his younger brother so the two of them can wrestle. I feel like I’m finally at peace with KJs diagnosis, and it has only come through my relationship with God. It took me realizing I needed healing over and over again. This was not a one-time thing; I have to keep coming back and leaving my burdens, my pain, and my disappointments at the feet of Jesus, exchanging them for His healing. Together, we got this!
Come to me, all you who are weary and burdened, and I will give you rest. Matthew 11:28.
Prayer for Moms:
Father God, please continue to strengthen and encourage all of the moms and give those that have a child with special needs, a little extra TLC. Help us to understand that You chose us specifically as heirs of some of Your most precious gifts.
Lord God, please help us to always find courage and strength in You and see through Your eyes that while our children may have limitations, their opportunities are limitless because You are God Almighty, and we are Yours. Lord, I pray that You will continue to cover our babies as they strive to reach new milestones and infect us all with their love.
Father God, I thank You for the strength You have given me; for the support of sisters You have gifted me, and for the unwavering love You have steadily shown me through every challenge and praise. I pray that all of the families like mine can experience many of these same things and know in their hearts just how fantabulous You are.
I thank you, God and I praise Your name. In Jesus’ name, Amen!
~Tiffany
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