From a chapter in my Grief Book:

I recently heard the term “Forever Nester” and it made me smile. That’s what I am. I’m not an empty nester, I am a forever nester.

Because grief is the experience one lives in after a loss, having a handicapped child places their parents firmly in that space. It comes and goes. There are many many moments of pure joy and many many moments of pure gut-wrenching sadness. Let me explain.

I once heard that giving birth to a baby with special needs can be compared to planning for a trip to Disney World and ending up in Holland. While you love Holland, it isn’t the trip you planned for.

Quite often now mothers find out about birth defects or impending health problems before the baby is born. This is a double edged sword. It brings the excitement of pregnancy to a screeching halt. It will set the parents on a grief path immediately. Anticipatory grief over-shadows the joy of having a baby. The other side of that is that the parents and medical team can do what they need to at the time of birth, or even before, in some special circumstances. They can plan and be prepared.

This is my story: It might be hard to read. It was certainly hard to write. There is so much dishonestly, faking it, and covering up of true feelings around the birth of a disabled baby.

I always said I was glad I didn’t know about my son’s birth defect before he was born because I know it would have popped my pregnancy bubble. I loved every minute of being pregnant.

I remember everything about the moment my son was born- every sound, every word, every smell, every feeling. It has been that way with every bit of bad or hard news since. Isaac was born a week late. I was only at the hospital for 2 1/2 hours when he arrived. I was 20 years old. A baby myself. Full of anticipation and love even before meeting my guy. I didn’t know for sure if he was a boy or girl, but I KNEW. When people would ask me if I hoped for a boy or girl I would say “A boy!” I never once said “It doesn’t matter, as long as it is healthy.” As soon as I gave one final push the midwife came up beside my head and said “Looks like we have a cleft lip baby.” To which I said, “It’s a boy right?” That was all I cared about and I was already shutting down the other emotions and questions. After being assured of his gender, and general health to be perfect, they put him on my chest. I felt the most amazing rush of fierce protective love for him. He was a beautiful baby, hair parted on the side at birth. He was born with a bilateral cleft lip and palate. That was the only problem we were aware of at birth. The midwife told me in those first moments about the plastic surgeon who would come see Isaac while he was in the nursery and the ball would start rolling.

Isaac was born in Pennsylvania. They had an astoundingly good cleft palate program that was paid for by the state. He was started with the surgeon (first surgery at 4 months), speech therapists, dentist, hearing testing, etc. from birth. It was overwhelming but comforting all at once.

A bilateral cleft lip and palate create quite the feeding challenge. I wanted to breast feed before he was born and I was even more determined to do so after because of the health challenges he was going to face (ear infections, sinus infections) and how much breast milk would bump his immune system. Isaac did not have a palate at all (no roof of his mouth) and the middle part of his upper gum was coming off of the end of his nose. There was no way he could latch on to me. So I pumped. I had to rent a huge pump (this was 33 years ago). It took me forever to get ahead on the milk to freeze some. Isaac was so patient. It was a God-send that he was a very “good” baby. He didn’t cry much and he watched everything. Finding a nipple and bottle that worked was a challenge because of his inability to suck. But we figured it out and he got to work gaining weight for his first surgery.

The long and the short of it is that the cleft lip/palate was just the beginning. Isaac began having seizures a week after his first birthday. He was considerably delayed around that time but his pediatrician chalked it up to his surgeries and having to be in arm restraints so he didn’t touch his face and not being on his belly much so that he wouldn’t put his face down on the blanket, etc. Turns out Isaac had a significant seizure disorder and we almost lost him a few times. He also turned out to be extremely developmentally delayed not having anything to do with his first year. He was labeled mentally retarded. His seizure medications kept him lethargic and only worked at really high levels after years of trying to find “the one.” He had frequent infections, pneumonia, ear and sinus infections, and multiple surgeries. All the while Isaac was becoming a happy, bouncy; ball, Wheel of Fortune, Toy Story, Mr. Rogers, music loving, easily entertained jokester. What laughter he has brought to my life.

As Isaac got older we came out of the busy-ness of babyhood, after adding a sibling to his world. We lived in a bubble. As is so often the case, most things fall to one parent; whether by choice, design, abuse, neglect, or inability. In our case, I was doing all of Isaac’s (and his sibling’s) care, Dr. visits, early intervention therapies, later school meetings and school everything, activities, etc. Then there were the surgeries, and medical emergencies and set-backs along the way. There wasn’t a moment to process what was even going on. I was extremely isolated.

Being raised religiously I didn’t allow myself to question the why’s or WTF’s. I just accepted and listened to the “He was knit together in your womb….” sermons and knew that things were as they were “supposed” to be. Denial is where I went on Isaac’s birth day and remained firmly for a good 18 years. I remember lying in bed the night he should have graduated from high school and bawling my eyes out. There were so many missed milestones but that was the one that broke me. Head in the sand no more. Hello grief.

What is it about having a baby with special needs that is a loss? There is the loss of the dreams for your child; the loss of who a “normal” them would have been; the loss of a future; the loss of easy; the loss of your dream as a parent; the loss over and over again as other kiddos bypass your child; etc. To be blunt your child is not “normal;” therefore, you are not normal either: at the store, at the playground, at school, anywhere and everywhere. You are always walking the fine line of pushing for things for your child that are the best for them; and pushing for things for your child because of it being about you.

With other grief situations, one worries that time isn’t going to do the thing that it’s supposed to do. But it does. When you are in a parent of special-needs child situation time is not a healer. Every day for forever will feel kind of the same. There is just no way to know what might have been, but that doesn’t stop a parent from thinking about it; because with this type of situation and this specific grief it is on-going. There is the initial loss at birth and then there is loss at each missed milestone and/or each hospitalization, illness, setback, additional decline. It compounds and a parent is always “in” it. (Some diagnoses are not identified until much later in the child’s life; but no matter when the diagnosis is made, the loss is felt and the journey begins.)

Even if your child becomes fairly healthy, or semi-independent, or even lives in a group home or away from your home, they still will never fly very far from your nest and you will always have a finger on the pulse of their lives and living situation.

There are many more babies being born with special needs these days. With modern medicine we are able to save babies that would have previously died at birth.

I remember when Isaac was in the PICU following a three-hour seizure and a helicopter ride to a higher level of care, a set of parents came in with their 10 year old son who had been born without part of his brain. He was intubated from birth and had never had any responses or interaction of any kind. Machines were keeping him alive and had been for 10 years. He had developed another infection and they were bringing him back to the ICU for care. From the outside looking in, you just can’t wrap your head around that. But that child was their baby. No matter what decision they had made at birth, and any time since, it was the wrong one from others’ viewpoints. Their hearts said keep him alive.

There are also, for no one definable reason, more children with mental illnesses, ADHD and on the autism spectrum. It is an interesting phenomenon. Are we just getting better with diagnostics; are we just more aware; or is there really an increase? Therefore, there are more parents today, than ever before, dealing with the system, the stigma, and the grief that comes with a label being put on your child.

This specific grief is a complicated grief for sure. There is grieving multiple losses. One of those is relationships. Sometimes the parent or parents are so deep in it with their kiddo that they have to let everything else slide. They don’t accept or want help. Sometimes they isolate on purpose and other times it just happens because others are uncomfortable being around them. Sometimes it is because your child’s handicap makes outings and trips impossible. Having a special needs child is incredibly hard on other siblings. Even when you desperately try to not make everything about the sick child, it just happens. And marriages suffer. The divorce rate among parents of special needs kids is as high as 80%.

Thank goodness for the blessed oblivion of our handicapped children. For the most part, they don’t feel the losses. They are just staying alive and their reality is all they know. As a parent we experience their losses of what won’t ever be, and combine it with our losses.

One of the over-riding emotions for parents of special needs children is shame. Not guilt. Guilt comes from doing something “bad.” But shame. Shame isn’t that I have done something “bad,” it is: I am “bad.” It feels as if you have to hide away. Remembering that feelings are quite often not based in reality doesn’t matter in this case. There is shame around your baby living when so many don’t. There is shame around any decisions made; shame around trying to be included; shame around being sad; shame around being happy; shame around recognizing it could be worse; and shame around wishing for things to be different. There is shame in knowing that you would absolutely change it if you could. There is shame in not wanting to be told one more time that God only gives special kids to special parents. There is shame in the politically correct names of the diagnosis and there is shame in most emotions that bubble up.

AND after all of that…there is joy. Joy and happiness amidst the grief. We can hold space for two things at once. The surprise of just how much you can be in love with this process. The belly laughs and smiles that make your cheeks hurt. The noticing of even the simplest things; a millimeter of progress; a Special Olympics moment; a new skill acquired; the knowing you are their person. Watching the impact your special needs child has on the world. Watching the good that comes out of others and is showered on your guy. The way my Isaac can get anyone and everyone to sing Skidda ma Rink a Dink to him, with hand motions and everything. Because why would you tell him no when all he wants to do is laugh and bounce and hold your hand.

Yes he will be holding my hand to cross the street until I am the one who needs help. He will be on seizure medicine his whole life. I will wonder what is hurting or not feeling right because he can’t tell me until I am the one who can’t talk anymore. He will fill my heart with love and light until mine stops. There is sadness, loss, and grief for sure; but there is also wishing, wondering, sparkles, tremendous appreciation, blessings galore, and so much love. I will keep him in the nest forever.