The 12 Days of Christmas

End of year reflections from one special needs mom to another …

We are twice armed if we fight with faith. ~ Plato

My introduction to my Special Needs Experience was my water breaking 6 weeks early, 2 weeks of bed rest, an induced natural childbirth in an operating room, followed by 16 months in the local children’s hospital, fighting with my daughter for her life.  I remember hoping every night I left the hospital that I would see my tiny little girl alive the next morning.  Given the number of “code blues”, seizures, surgeries, IVs, blood draws, and other procedures she went through, I'm still amazed she survived. It was a good night when we didn’t get a call from the hospital.

I know many of you have had similar experiences and know exactly how your heart has been stretched in so many ways.

What I was not cognizant of back then was how much I relied first on Hope and then on Faith. 

Hope and Faith are both emotions or beliefs that help us persist despite the adversity we are facing.  They give us a (sometimes faint) sense of optimism about a person or situation.

We use Hope when we are not sure whether something will definitely happen or not, but we want it to happen. It provides strength and enables us to have courage to move forward.

When Clara was born, I was filled with Hope – an expectation and desire for my daughter to survive and thrive.  My Hope was tested, as she battled for life, and frequently was replaced by fear and anxiety, often putting me in a state of perpetual traumatic stress.

Hope is the expectation that nothing bad will happen.  And when something does, Hope is fleeting.

Faith, on the other hand, is stalwart.  It is a belief rather than an expectation. 

As Clara’s health improved and she constantly showed us that she was a prize-fighter in a pint-sized body, I found myself believing that she was going to meet certain milestones (in her way and in her time, of course).  My confidence in being able to think of more than just the next day grew too. 

When Clara was still young, I had a dream or vision of her talking to me from the back seat of the car, even though when she was 2 a speech therapist told me that it was unlikely she would talk. Regardless, I held onto that vision even though she never said any words until she was 6 years old.  Many times since she’s been in her car seat telling me over and over about something that is exciting her. Somehow I had Faith that Clara would talk – and she did.

There was also the time that Clara, who never walked till she was 4 and liked to be carried around, especially up the stairs, was refusing to climb the stairs on her own.   Yet I had Faith she could do it and with lots of encouragement (and tears running down both our faces), I sat at the top and encouraged her to climb one step up at a time to reach me  – and she did (to the amazement of both her dad and sister).  And I never had to ask her again to climb the stairs.

There was never any proof or guarantee that Clara would talk or climb stairs – in fact, clinicians had warned me that if she lived, she would be in and out of hospital all her life and she would likely never walk or talk.  But despite that, I had Faith that she would do both. 

Looking back now, I can say that my Hope had turned to Faith.  Yes, I had the expectation that Clara would talk and climb, but somehow I believed that she would – it wasn’t the fleeting hope I had had every time she coded as a baby.  It was a quiet conviction I had that Clara would do the best she could given her circumstances. 

I never shared those quiet convictions with others. I didn't want to be considered crazy - as there truly was no guarantee that Clara would even be able to do much at all.  I held onto those beliefs for years.   Was it mother's intuition?  Maybe it was.  I prefer to call it Faith.  

No I don’t have some extraordinary power or psychic ability.  And although Faith can have a religious context (which I do appreciate), I’m talking about Faith that rests on a truth that is based on specific circumstances that helps us move forward.

Clara was born very sick with many health issues.   Every day I was grateful we got through it and we had another day together.  As she got older and stronger my perspective changed from one of hope riddled with anxiety and fear to one of Faith that she's here for a purpose so we will make the most of the time we have together. 

Today I have Faith that Clara is living the life she is supposed to given her circumstances.

The gift of Faith reduced my anxiety around Clara dying. 

But some children don’t make it.  Some of the children in the NICU with us didn’t make it.  And I have worked with children and know of many who’s lives end before we are ready to say goodbye.

How is Faith a gift for those parents?

I’ve wrestled with this for a long time. And here’s my perspective on it. 

All children are gifts to us.  For the most part we have Faith that our children will grow and thrive and follow a life trajectory which includes certain familiar events.  I think we have no issues acknowledging that the life they live is theirs, but sometimes we can become disappointed if they don’t do certain things we believe are important (e.g., get married, have children et cetera).  Somehow we get over it and we have Faith that they will live a full life for as long as they are able.  

Yet, somehow with our children with special needs, who’s life journey is likely to be different, we tend to let go of that Faith – the very belief that would help us through some of the most devastating moments in our life.

Just because one child does not follow the same path as everyone else does not mean it’s wrong or bad.  It’s just different.    And like we believe our neurotypical children will walk their path for as long as they are able (and even then it could be shorter than we would like), we need to have Faith that our children with special needs also will journey along their own path for as long as they are able.   They are all doing their best … they are all living their lives to their fullest capability.  And we can have complete trust and confidence that their life is just as meaningful and rewarding.

Faith that our child is living their life for as long or as short as it should be doesn’t make it any easier to parent these special children.  But it can help us have some Clarity about the role we have been given and despite how long, short, or complex the journey may be, everything is unfolding as it should. 

If I had had that perspective 20 years ago, would that have reduced the fear, anxiety, and PTSD I struggled with during those early years? 

I’m not sure. I'm not sure whether to find this Faith we first have to experience Hope.  I am aware, though (with 20-20 hindsight ;) ), that having the Faith to understand that Clara's life, although different than what I had expected for her, would still beautiful, fulfilling, and meaningful irrespective of how it unfolded would have helped me take everything that happened in stride better than I did.

I offer to you the Gift of Faith wherever you are on your journey to hopefully make it a little bit easier for you ... 

Let me know your thoughts on this and how Hope and Faith have infected your life. 

With love,

- Lisa xo

P.S. Any idea what tomorrow’s gift will be for the third day of Christmas?    If you guess correctly, I’ll offer you a 20% discount on one of my nutrition or coaching programs. 

P.P.S.  Follow me on Instagram @SpecialNeedsExperience