Day 942 – Grayson’s Journey

Dear family and friends,

These nosebleeds of Grayson's have to stop!! Even though we took him off baby aspirin more than two weeks ago, he keeps getting them. After finding him in a large pool of red AGAIN Wednesday morning, I now go in every couple of hours during the night and early morning to check on him. I've tried every trick I know so I'm calling the doctor tomorrow for advice.

I am grateful that I am not squeamish at the sight of blood and that Grayson isn't either. Uninterrupted sleep, however, would be really nice.

Peace be with you all,

Regina

Day 941 – Grayson’s Journey

Dear family and friends,

While I was showering Grayson this evening I couldn't help but notice all of the scars on his body.

A scar over his eye from where he fell as a toddler.

A scar on the back of his head where he had staples as a child.

A scar at his throat from a tracheostomy in 2009.

A long scar down the center of his chest from his open heart surgery in 1986 and numerous scars from the drain lines during surgery.

A wide scar on his upper left chest from multiple ICD (implantable cardioverter-defibrillator) implants (in 2004 & 2009).

A scar on his stomach from a gastrostomy tube in 2009.

A scar on his upper leg from cardiac catheterization as an infant.

A scar on his toe from having a physical therapist sit a chair on his foot while trying to help him sit up following his second cardiac arrest.

Each scar reminds me of the traumas he endured and the battlefield that has been his body for nearly 27 years. Every scar left behind serves as a symbol of the battles -- hard fought and won. Grayson was never ashamed of his scars and neither were we. Less visible are the mental scars and the damage to the deep brain functions. We choose not to be deterred by those wounds either. There is still healing going on there.

A friend posted on her Facebook page today the following unattributed quote about scars and it touched close to home for me.

"Never be ashamed of the scars that life has left you with. A scar means the hurt is over, the wound is closed, you endured the pain and God has healed you."

There are all sorts of scars we bear in this life. We are in good company.

"…Jesus came and stood among them and said, 'Peace be with you!' After he said this, he showed them his hands and side. The disciples were overjoyed when they saw the Lord." [John 20:19-20]

Peace be with you,

Regina

Day 940 – Grayson’s Journey

Dear family and friends,

Some days my own emotions catch me by surprise.Grayson was exceptionally non-verbal today. He would just look at me or point to his or my mouth. I could tell he wanted to say something yet even with much urging he just couldn't seem to move his thoughts to his voice.

Several times throughout the day Grayson wandered to the top of the stairs with an opened magazine, thoroughly frightening me. Finally I blocked the stairs.

This afternoon he would answer every question with "yeah". At lunch he kept dropping his sandwich until it completely fell apart. After dinner, the kitchen floor where he sat was littered with dropped food.

I was overwhelmed with a sense of déjà vu. I felt as if I had a toddler again – changing wet sheets, child proofing stairs, and sweeping up finger food.

I tucked him into bed and kissed him goodnight.

The feelings are bittersweet.

Regina

Day 939 – Grayson’s Journey

Dear family and friends,

The day is quickly coming when we will lose Grayson's caregiver, Anishka to another position where she can use her newly minted LVN certification. She has been such a blessing to our family for the last six months. Grayson responds extremely well to her and I treasure the peace of mind she gives us when we go to work each day.

We are once again in the interview process and pray for someone equally sensitive, friendly, and nurturing.

Keep a good thought.

Peace,

Regina

Day 938 – Grayson’s Journey

Dear family and friends

Grayson had been quite affectionate these past few days – more so than usual. He always seems to be touching me – startling me from time to time. I’m not sure what has brought this on but I’ll take it!

Austin and Xixi asked us to join them for dinner this evening. We were able to catch up on the activities of the past few weeks – quite a nice visit. I’m sure glad that they live close enough that we can see them regularly!

Pax!

Brant

Day 937 – Grayson’s Journey

Dear family and friends

Today Grayson and I had the opportunity to attend an Eagle Court of Honor for three of the boys from our troop. While it has been a while since I have actively participated in troop activities (Grayson’s injury in November of 2009 effectively put an end to my participation), I have worked with two of the boys being honored today. In fact, on the very last ski trip (February 2009) that Grayson participated on prior to his injury, we were with a small group of boys and adults from our troop. We stayed at the Mammoth cabin of one of the families being honored today.

Grayson looked great in his uniform today – his Eagle medal affixed and wearing his Order of the Arrow Vigil Honor sash. When the Eagle Scouts in the audience were asked to stand and repeat the Eagle Scout Oath, Grayson stood, held the Scout Sign and repeated the oath to the best of his ability – and he did very well. I had a difficult time maintaining my composure during this part of the ceremony because of the strange juxtaposition of Grayson as an Eagle Scout in 2003, and Grayson as an Eagle Scout in 2012 – so proud of him in both places.

God bless our Eagle Scouts – and God blesses us with adults that provide the program that allows these boys to grow to the best of their abilities.

Pax!

Brant

Day 936 – Grayson’s Journey

Dear family and friends

Tonight after work Regina and I decided to grab Grayson and go out for dinner and a movie. We had dinner at our favorite Italian restaurant then went and saw Men in Black 3. To make things even better, Austin and Xixi joined us for the movie – which was quite fun, by the way. After the show all of us went to Marie Calendar’s for dessert and coffee.

What a fun night we had!

Pax!

Brant