se·vere adjective

a: inflicting physical discomfort or hardship b: inflicting pain or distress : grievous <a severe wound>7: requiring great effort : arduous <a severe test> 8: of a great degree

 

pro·found adjective  b: difficult to fathom or understand 2 a: extending far below the surface b: coming from, reaching to, or situated at a depth

 

I have been tired as of late and otherwise engaged in meetings, appointments, and baseball has begun so practice and games are now a part of life.  Larkin’s IEP (Individual Education Plan) was written this week as well.  A lot less stressful from the first as everyone now truly understands Larkin and her needs.  Her team at school is amazing and they truly want the best for and from Larkin. 

 

Along this journey, I have commented that I hear and read between lines.  When doctors say something in passing or in an off-handed gentle manner without going a lot further in explanation, they are ringing a bell.  It is a dim sound but I hear it and know it like a dog knows there is a bunny under the deck. 

 

Teachers do the same thing. 

 

This blog allows me to spill what my heart doesn’t want to.  I can spill or – how about this – spell out my grief, fear, and then move along with being happy. 

 

I give the definition of severe and profound to help everyone understand what I feel in the pit of my stomach when I hear those 3 words.  Larkin has a hardship or grievous wound of a great degree and it is difficult to fathom or understand how far below the surface or at what depth it is situated.  And here come the tears.

 

Seizures have damaged our girl to a degree that we do not yet understand or know.  In the past 3 months she has made great strides in her development and since we now have sub-clinical control of the seizures, our hope is that she continues down this path.  However, when I write her IEP it is far different from others I hear about or read.  The bell is ringing from far away but I hear it. 

 

I watch other children with Down syndrome and I am amazed at their skills.  My mother heart yearns for walking, to hear her voice, to have her run into my arms saying “mama” but those skills might come in time.  Larkin has begun using her walker in reverse instead of having it in front of her body.  She has a lot more control of her speed this way and eventually she will figure out how to steer.  The story of Larkin is being written and I anticipate a beautiful outcome. 

 

Slow and steady wins the race as my friend Rae says and she posts on her blog the following:    everything is possible… the impossible just takes a little longer 

Rae has always understood our journey because she and her son Sam have walked it a tad bit longer than Larkin and I.  She has kept me sane through some very dark moments and her friendship means a great deal to me. 

 

I hear the bell but fortunately, it is not the only noise in my life.  I can concentrate on laughter, Thirteen talking to his buddies on X-Box live (although that almost drives me over the edge after a while) listening to Larkin babble in her bed in the early morning hours, the birds singing their happy tunes (although that also almost drives me over the edge after a while) and conversations with friends and family. 

 

This morning I went to Mother’s Mass with Chase and as usual I cried through Gentle Woman, quiet light, morning star, so strong and bright, gentle Mother, peaceful dove, teach us wisdom, teach us love.

 

Slow and steady wins the race, everything is possible…the impossible just takes a little longer.