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Hello! My name is Kathy and I have the privilege of being JJ’s mom. John, his Dad, and I have been married for almost 13 years. We have 4 daughters and 1 boy. Mallory (12), Sadie (10), Piper (8), and Molly (5) are the best big sister’s to JJ (4). In 2013, we found out we were expecting twins. It was an exciting time but also a little nerve wracking. I have a history of miscarriages so I was put on light bed rest at 9 weeks along. Everything was going great until the twins were 19 weeks gestation. I went in for a visit with a Perinatologist (I was referred to him because of my advanced age (31) and history of miscarriages) and found out that Baby B no longer had a heart beat. John and I were devastated. Thankfully, the Dr told us that Baby A still looked amazing and there was no reason why we couldn’t go full term. At 25 weeks gestation we had another visit with the Perinatologist. At that visit the Dr noticed that I did not have a lot of fluid around the baby. There are 3 reasons why this happens. Two of them affect the kidneys but after some looking the Dr ruled those out. The third reason is PPROM, preterm premature rupture of membranes. The Dr turned to my husband and I and told us that I was going to be living in the hospital until the baby is born. I had 2 hours to go home, pack, and get my 4 kiddos taken care of. Thankfully, my Mom lives a block away so she helped with the kiddos so John could still work while I lived in the hospital. Our goal was to keep the baby in me until 34 weeks. They would do blood tests and daily non-stress tests to monitor the baby. Our little guy had other plans. He was born at 27 weeks 5 days via emergency c-section. We were both septic with e-coli and he had severely underdeveloped lungs. He was given less than a 5% chance of survival because they can help with every issue he had but growing lung tissue. As you know he beat those odds but not without some lingering issues. At one week old he had a severe brain bleed that got into his brain tissue and caused severe brain damage. He had Grade 4 brain bleeds on both sides of his brain. Grade 4 is the worst you can have. When the Dr told us this he was so apologetic. Not because of what happened but because he couldn’t tell us what to expect. Since it happened when he was so little his brain can still grow and find new ways to work. As he has gotten older the effects of his brain damage has shown itself. JJ is diagnosed as failure to thrive, which means he doesn’t eat on his own. We feed him through a gastrostomy tube (g-tube). He also had cerebral palsy which, for him, mostly affects his legs. His brain isn’t communicating with the muscles in his legs to move so he doesn’t walk. JJ is also non-verbal but can answer yes or no questions. However, if he is in a mood then he won’t answer at all. It is mostly a guessing game with him.
Miggy: Welcome Kathy. Thank you so much for being here today and talking about your family, especially your son JJ. First, when did you find out about JJ’s condition and do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?
Kathy: Our son, JJ, was 1 week old we were told that his life would be a little more challenging. We weren’t told an official diagnosis because with brain damage it is a case by case diagnosis. I remember feeling concerned but not heartbroken. I remember the Dr asking my husband if I understood what he just told us because I was so calm. I kind of chuckled and told him that I understood but just 7 days ago they were telling me my son was going to die and here he is still alive but with some issues. I told him I could handle it because I still have my little baby. Those thoughts that I had then are the same that I have now. Especially since he is defying everything the Dr’s told us he couldn’t do. I love my son and am so thankful that he is still on this Earth with me. I am happy to take on his challenges because it is a part of who he is.
Miggy: Could you please educate us about JJ’s condition and explain how his’s needs affect your day-to-day life?
Kathy: Cerebral palsy or CP is a lingering physical effect that is caused by damage to the brain. The way I see it is that the brain has some damage to it and it no longer communicates effectively to the muscles. It can effect hands, arms, legs, and core strength. For JJ, it effects his legs and core strength. He can’t sit up on his own and doesn’t use his legs. John and I can still carry him from the house to the car but any further and we use the wheelchair. JJ has amazing upper body strength so he Army crawls around the house.
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Miggy: What are the biggest worries you have for JJ? On the flip side, what are your hopes and dreams for him/her?
Kathy: My biggest worry is what will happen to JJ when John and I are no longer able to care for him. I know my daughter’s would step up but I don’t want them to feel obligated to do so. If they aren’t in a position to care for him will he be put into a facility with people who love him? Who will make him smile? Will they know his quirks and triggers? My second biggest worry is keeping up financially with his needs. Right now we are covered by a waiver but if that waiver is no longer funded we have to rely solely on our health insurance and that doesn’t always cover everything. So we are trying to save all that we can while raising JJ and his 4 sisters.
I hope that JJ will someday be able to walk with a walker. I can see the desire in his eyes to do what the other kids are doing. He loves being involved and sometimes he is left behind because he can’t get around easily. I also hope he will learn to eat by mouth. Nothing, medically, is wrong with his swallowing reflex he just won’t let it happen. He has a mental block and is afraid he will choke.
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Kathy: As you know JJ has a feeding tube (g-tube) and it is to the right of his belly button. I check on the stoma every time I change his diaper. I was babysitting a friend’s baby when JJ was 1 year old. She had a dirty diaper so I went to change it. I started to panic when I lifted up her onesie. “Where is her tube? Did it fall out?” Haha! She didn’t have one because she eats by mouth. I got so used to seeing my son’s tube that I forget it is not a normal thing for babies.
Miggy: How can people best approach or respond to your child? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Kathy: Smile! JJ may not smile back and that is ok. Do you know who notices the smile you give to him? ME! It warms my heart to see people give my son a smile and not a pity smile but a big, loving, genuine smile. If you are unsure of how to act or what to do around my son just ask. I love questions and I love to talk about my son. It is a win/ win. I feel like you care and you might be able to learn something new. If your kiddos have questions don’t shush them let them ask. The only way they will learn and start to feel comfortable around kiddos with different abilities is to ask.
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Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?
Kathy: The biggest lesson I have learned is to let the small things go. I always loved having my house clean and orderly. Since JJ came around that has taken a back seat. His sister’s want to spend time playing with him and to me that is more important than a perfectly cleaned room. JJ makes huge messes during feeding therapy and those messes wait because he is learning. I have learned to say “no” to more responsibilities because JJ does not benefit from a stressed out Mom who hardly has time to take care of herself let alone him. He needs me and so do his 4 older sister’s and to me that is more important than anything. Well besides spending time with my hubby. I need that time too!
Miggy: I know from firsthand experience what a special role siblings can play in your special needs journey. Is there anything you’d like to share about your other children and their relationship to your son/daughter?
Kathy: My 4 daughter’s have a special bond with JJ that I can not explain. Sadie, our second oldest, prayed for a little brother with blue eyes for several years. She was thrilled when JJ was born and had blue eyes. Mallory, our oldest, and Sadie have learned how to use the feeding pump and how to correctly measure out his formula so they can watch him so John and I can have a date night. Piper, our third oldest, can make JJ laugh like no one else. It is a from the bottom of his toes kind of laugh. Molly, the youngest daughter, will just sit next to JJ and play. They are only 18 months apart so Molly doesn’t really remember life before him. She tells her friends to not be afraid of JJ because “it is just my little brother.” They are kind, loving, and patient with him. When he is having a meltdown they will put on Mickey Mouse Clubhouse or sing the theme song because they know it calms him. JJ is so lucky to have them as sisters.
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Miggy: If you could say something to the mom who just starting on this journey of special needs, what would you say? What would you say to yourself if you could go back in time?
Kathy: Don’t have expectations for your kiddo. Your child is going to be who they are going to be. Take your time and embrace the joy in having a child who will guide you through the world of special needs. It is a special journey and it will take you to the brink of your sanity but it is so worth it. The love from your child is like nothing you can ever imagine. Work hard on their behalf but remember to take care of yourself. They need you at your best.
I would tell myself to stop worrying and know that things will work out. It may not be on your timing but it is on JJ’s timing. Let others help you because if you take this all on by yourself you will get burned out.
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You have such a beautiful family! JJ is absolutely precious.
Also, please forgive me if what I'm about to say is inappropriate, but our son has Down syndrome. He is still a baby, but we are finding that the Anat Baniel Method has been very beneficial for his development. It is a therapeutic approach that, in a sense, helps wire the brain. So much could be said, but many children with CP, in particular, have really benefited from this approach. I'm just passing it along with the thought that it could be helpful for your sweet JJ. If my saying this is inappropriate, please forgive me!
Either way, thank you for sharing your story and thank you for your encouraging words to moms like me who are starting out on this special needs journey!
-Roxana
What a wonderful boy JJ is and what a wonderful family you are!