Grief- The Life You Envisioned For Your Child

I was only 22 when Gillian, our now 19 year old, was diagnosed with extreme developmental delays at the age of 1.  (I will save you all from trying to do the math, I am now 40.  (LOL). We didn’t fully accept the diagnosis until 6 months later.   She was my miracle baby as I was told I would probably never be able to have my own children.  She was the light of my life and in my mind, at least at the forefront of my mind, just needed more time to develop.  We can call those 6 months between diagnosis and getting help my time of walking through the stage of grief known as denial.  I am sure that if you asked those around us at the time, most of them would say that we were in complete denial and that we couldn’t see that there was something wrong with Gillian.  They couldn’t have been further from the truth.  Like I just said a second ago, at the forefront of my mind I thought that Gillian just needed more time to develop, but in the back of my mind, way down deep in there, I knew.   Howie and I both knew.  We just weren’t ready or at all prepared to start walking down that road yet.  We wanted to enjoy our perfect child in her perfectly normal childhood for a little while longer.  We weren’t stupid.  We saw exactly what was going on with our daughter and we heard everyone’s whispering going on around us which was quite hurtful.  Denial just gave us this beautiful, perfect bubble to live in before our lives and our daughter’s life changed forever. We knew that once we started down the special needs road we could never go back to just being a perfect, little family of three.  Once we started all the weekly therapy appointments (we had at least 6 a week they wanted us to start with) we would never go back to the simple life of playing on the floor with our daughter and just enjoying her for her.   Denial was a gift that I so needed so that I could savor those last precious 6 months of normalcy for my daughter and for our family.  

I remember denial fading overnight for me.  It wasn’t a slow fade.  It actually happened quite fast.  I woke up one morning and it was like all that was lurking in the back of my mind had shot to the forefront and I knew it was time to move forward with this diagnosis and all the therapies.   As fast as denial left, anger came in.  I was angry at the people around us who had normal functioning kids and just got to enjoy them.  They got to go on with their merry little lives while I was stuck going to various therapies with my child and then coming home and repeating all that we had learned with her over and over again.  My life, as I knew it, was over and they all got to keep going on with theirs.  I was also angry because I felt constantly judged by those around us because they felt we waited to long to get Gillian help.  -Okay, quick side note here.....I realize now (18 years later) that all of these people meant well and cared deeply for us.  At the time that was not at all what it felt like but none of them had ever been in the situation before so they didn’t get that their words and actions were hurtful.  Heck, I would have had responded the same way if I were them, but now that I have been there and done that it has taught me a lot in how to respond and love on people as they start their journey into this world of special needs and my hope is that it will give you some insight into how to respond to those people as well, because I know that none of us truly wants to hurt someone who is going through a difficult time.  Okay, side not over-  It was hurtful to us that anyone would think we didn’t want what was best for our daughter and that we weren’t dong our best as her parents.  It was hard for me to get over my anger but in time, it faded just as denial did into another stage.  

Remember how I said in my post on the overview of grief that not everyone goes through the stages of grief in order?  Well for me after anger came depression.  I skipped right over bargaining and guilt for the time being.  Oh, don’t you worry, I eventually went through that stage and I’ll get it to it, but first depression.  Depression for me came in the form of retreating.  If I hadn’t already pushed everyone away with my anger then depression was going to do the rest of the job for me.  I stopped returning friends’ calls, stopped going to most functions and stopped talking to people about what was going on in our lives.  Most people couldn’t relate anyways so what was the point in telling them all about everything that we were doing with Gillian.  That was my mindset. Poor me.  No one gets it.  No one understands.  I felt so alone in this new life I was living.  Depression got a good grip on me for probably about a year.  I feel that it lasted so long because I didn’t tell anyone about it or attempt to get help for it.  Instead I just became this person that I am sure everyone thought was a b word and I didn’t even care.  -Time for another side note......This is why it is so important to reach out to someone who has walked through grief before to walk through it with you.  Doing it by yourself DOES NOT WORK!   Trust me, been there, done that, couldn’t afford the t-shirt.  So please, if you are walking through grief by yourself reach out to me or someone else that you know and allow us to walk through it with it.  No one has to do it alone.  There’s no reason to do it alone and it will only make it harder on you and those around you if you try to do it alone.  We were meant to live life in community.  That is how God created us so go find community to walk through grief with you.....Side note over-  Depression was a horrible enemy that I allowed to stay and visit for far to long and it likes to try to come back from time to time still, but now I have an amazing community of sister’s in Christ who will come in and help me kick him out.  

I started down the stage of bargaining and guilt while still in the stage of depression.  It was somewhere towards the end of that long year.  I became queen of the “if only”thoughts.  If only I had eaten better while pregnant (umm....I lived on salads and iced tea my entire pregnancy.), if only we had started therapies earlier, if only I had made her do more tummy time when she was a baby, if only I had breastfed her longer, if only I had made her sleep on her back and not her tummy (when Gillian was a baby, the trend was back sleeping only, I have no idea what the trend is now as they are constantly changing it.) if only, if only, if only, they would just come one right after another all day long.  God, however, finally told me one day that I needed to stop thinking that I was mightier and wiser then He was.  Nothing I did or didn’t do caused Gillian to have special needs.  She was exactly how God had made her.  She was everything that He wanted her to be and nothing He didn’t want her to be.  She was created in His image just like me and therefore she was perfect.  That led me right in to the stage of acceptance.

Gillian was still my perfect child.  She was still my miracle from Heaven.  She was still the baby we prayed for for so long and wanted so badly.  Her life just looked different then the life I had imagined.  She wasn’t going to be potty trained before starting kindergarten.  She wasn’t going to get to be a free spirit that played outside with all the neighborhood kids everyday.  She wasn’t going to be reading chapter books by the stack all through elementary school.  She wasn’t going to ever have all her high school girlfriends over for a slumber party.  She wasn’t ever going to get her driver’s license.  I’m not ever going to get to cry when she leaves for college.  I’m not ever going to get to meet her boyfriend, or plan her wedding or hold her children.  These are all things that one by one I have had to grieve.  Some I am still in the process of grieving through and I know as time moves forward and friends’ kids and my nieces and nephews and my other two children hit major milestones in life and it hits me that that will never be Gillian, I will have to walk the road of grief once again as I learn to accept that Gillian’s life looks different than the life I pictured for her as I held her in my arms the day she was born.  I move forward in acceptance fully knowing that many days I am not okay with this loss but that I will be okay and so will Gillian.