“Grieving the Missed Milestones” -Regina

Caiden doing physical therapy

We’ve all been there. Those moments when we witness our kids- or grandkids- struggling to accomplish a simple task which others seem to be mastering. Those unique “am I making this up in my head” doubts that consume the mind while you wonder if you’re just being too vigilant (is there even such a thing). Or how about the feelings of despair as other families celebrate skills accomplished: cooing, the precious baby giggles, those first crawls, steps, words. The list goes on and on.

I remember vividly how my heart broke. More heartache came each time we realized we were further behind than we thought we were. We had every therapy known and we were making GREAT strides. Yet, each developmental assessment showed we were even further behind than the last exam indicated. (Chelsi & Caiden)

Chelsi Kissing tiny baby Caisen

Chelsi and Caiden

I remember begging God- being confused. I remember crying thinking my daughter- who had fought so hard through her entire life- will now have to fight even harder to be a supportive mother. You see, life was far from a cakewalk for my daughter. She had her very own struggles with life skills that she still battles daily. Now, would she ever hear her son say “mom” or “I love you”? It just seemed so unfair.

Milestones came, milestones went. Some were met. Some….. well, we realized may never happen. We grieved many times as I am positive each of you has done.

Yet, at some point, it all has changed.

While raising my own children, I recall always saying I wish I could turn back time and that I would do anything to have those years back. I always told friends- who ranted during difficult days with their younger kids- that “they’d want those days back”. There’s many songs, memes, quotes and all the what not’s that share this (OT with Michelle) same sentiment.

In a very unexpected moment of clarity, I found a hidden blessing in our struggles. Since that moment
life has never been the same.

Michelle helping Caiden with writing in O.T.

OT with Michelle

You see, I realize that these struggles to meet milestones are also a blessing in disguise. My grandson isn’t caught up to his neurotypical peers and THAT’S OK!! We have the rare opportunity to spend more time in these tender stages of life. The moments others, including myself with my own kids, wish would never have ended. Here we are- living that dream.

As a farmer, I realize the grass isn’t always greener on the other side. That we always want the opportunity to see what “could have been” or “would have been” if circumstances didn’t include a diagnosis. However, when I find myself wondering what life would be like for Caiden had he never been diagnosed with CTD, I actually smile nowadays.

Sounds crazy, I KNOW! But, I find myself thinking of: all the extra “baby” time we have been blessed with; All the extra time we have been able to provide as he needs and desires our nurturing; How close and dependent he is on us; How neurotypical children will soon “outgrow” the hugs and shy away from parents as they emerge into early adolescence and teen years. Yet, we get ample and unlimited opportunity to stay in this “phase” of life.

(Caiden learns to scoot his feet)

Here we are! A CCDS community with the rare opportunity to hold onto our children longer. To cradle them, nurture them and be blessed with the fact that God gave us each just a bit longer than others to embrace our littles and not have to let them go in this rat race of a world we live in.

Rather than grieving the missed milestones, I now find myself grieving the passing of the milestones. With every bit of progress, we say farewell to that little ounce of dependence he has on us. When he masters new sounds, we find ourselves reminiscing the “remember when” moments. And guess what my friends– — — – we grieve. When Grampa-pa turned into just Grampa, we outwardly acknowledged the fact that we were bummed. We realized we now begin letting go of situations we had become very complacent and happy with. We went from grieving the idea of never moving forward to grieving the loss of where we were as we move forward. Talk about a whirlwind of emotions. It’s all so bittersweet and definitely a catch 22.

Caiden on a tricycle smiling

Caiden Learns to Scoot His Feet

I leave you with this thought: hang on to your loved ones and embrace this extra time. For they are only little once.

If you come against a milestone never to be met, know that it is okay to grieve the reality. However, don’t forget to cherish it and try to see the blessing in the circumstances.

If you crush through those walls, overcome obstacles to defeat the odds, and wind up elated at the success of a new milestone met….. be prepared! You just may soon realize you need to grieve the loss of where you have been versus where you are headed.


Disclaimer: All thoughts and ideas expressed in the Creatine Community Blog represent the individual blog contributor's opinions and not those of the Association for Creatine Deficiencies. The ideas expressed in the Creatine Community Blog, and any other locations on the creatineinfo.org website, should never be construed as medical advice, even if the information relates to actual health care experiences of the contributor. Individuals should always follow the instructions of their physician and make no changes to their care unless instructed to do so by their physician.