Circle of Support

When my son Maxwell was born, he was diagnosed with a brain disorder called PVL (periventricular leukomalacia), cerebral palsy, and epilepsy.

Now, three years in, I can confidently say: he’s an amazing kid and I am so proud to be his mom, but the beginning of our journey was fraught with challenges – and so much anger.

Maxwell was born with complications, but it took three months to receive a diagnosis. He was still in the NICU when I received a call from the neurologist. She told me about the diagnosis, and I started yelling, “What did you do to him? What did the hospital do to my baby?” As she explained the impact of PVL, I threw my phone, I was just so angry and pained. 

I struggled with anger at myself, wondering what I did wrong, and why I deserved this.

Three years later, there are still many challenges, but I’m so happy to be Maxwell’s mom. He’s changed my life and I know I am the best person in the world to be responsible for his care – there’s nothing I wouldn’t do for him.

I still break down sometimes. I’m often mentally and physically exhausted, and it can be hard when I see children his age running, chatting, enjoying activities, and I’m reminded of all the milestones he hasn’t reached. 

But overall, I simply feel so blessed and so happy to have him as my child.

A more recent challenge that I’m learning to navigate involves my other children – Cain (7) and Asada (6) – asking questions like, “Is Maxwell going to be a baby even when he’s 21?” Answering those tough questions and helping my children understand their brother’s differences isn’t easy. I also gave up my full-time job and had to put my education on hold.

When I stopped working to care for Maxwell and realized how quickly his needs would dry up my savings, I was completely overwhelmed; I had no idea what to do. I reached out to the hospital, which connected me with a social worker. 

I was told about OPWDD and other government programs that could provide financial and practical support. Ultimately, I chose to receive my services from Hamaspik, and I’m just so glad I did. It’s been transformative for me to connect with caseworkers who are mothers like me – some with special needs children of their own – and to receive the support of our DSP workers. 

For me, respite services make the saying, “it takes a village to raise a child” come alive. It’s a helping hand, a circle of support from people who feel like sisters.

Ultimately, these kids are called special because they are. Maxwell has changed me, humbled me, and slowed me down. This journey’s been hard, but the gains outweigh the pain. It has made me more compassionate, more motivated to help others. Because of Maxwell, I went back to school and am graduating as an RN – I’ll be another caring nurse out there to make a difference to kids like Maxwell.

My other kids have developed such incredibly mature perspectives because of Maxwell. They’re compassionate and kind. Cain helps weaker students in his class, and Asada is so affectionate with Maxwell. They both sing to him and help care for him.

My message to anyone who is struggling would be to acknowledge that there’s so much pain, and blocks that can deter you from seeking help, but the right support is a lifeline.

When you look for it, you can see that there’s more good than bad in the world, and when you connect with the right people, you’ll feel like you’re at home.

I know that G-d would never give me more than I can handle, and it can take time to see it – but challenges are blessings in disguise.