Regarding Loss

It’s always so difficult to lose someone you love. But in your grief, please keep in mind that they wouldn’t have wanted you to let their loss become your only point of view.
Honor them by remembering the good things that happened while they were here rather than how much you miss them now that they are gone.

Also understand that everyone has to grieve in their own way and in their own time. Please give that understanding to others as well. You may not be able to see their grief – that doesn’t mean they aren’t grieving.

If others say things that offend you in your grief, try to understand that they mean well. Until someone goes through it, they don’t realize what helps and what doesn’t. And there was a time when you didn’t either. So be gracious and accept all comments with the knowledge that they are trying to help. Does what they say now really matter? If it gives comfort, accept it, if it doesn’t just say ‘thank you’ and let it slide.

I’ve had my own share of loss. Both of my parents are gone, and that was hard to deal with. I have shared some memories of my hardest loss below. Please feel free to read and to share your thoughts on this or on your own losses in the comments below.

Thanks so much for reading.

Memories of Gracie

My rendition of “Amazing Grace” – Gracie’s theme song.
It always makes me think of her!

These are my memories of my daughter Gracie. She was a delightful child with a loving spirit and she will be forever missed.

Gracie was born with Treacher-Collins Syndrome. Neither my doctor nor I had any idea that anything was amiss during my pregnancy. But more on that later!

Gracie was a wonderful baby, just like her big sister Katie. I was blessed to have two such sweet angels.

It was quite a shock when Grace was born because we had  no idea there was any problem. My pregnancy had been completely normal and nothing had shown up on any sonograms or with any blood work.

It soon became evident that Grace was a very special little girl. Even with all her problems, she was usually a very  happy baby. As she grew, she wanted nothing more than to be exactly like her older sister, Katie. She would follow Katie everywhere, and try to do what she did. She was a cute little parrot. 

When Grace turned a year old, I became a single parent and moved in with  my sister. Her three children were teens and took my girls under their wings quickly. My sister was a teacher and suggested I have Grace tested by the school system so her educational abilities could be evaluated. I did this when she was two. At first, they didn’t think she could hear well, so enrolled her at the School for the Blind and Deaf. She began learning sign language there.
She also had a home teacher who came to our house once a week and gave us exercises to do.
It soon became evident that she was hearing quite well with her bone-conduction hearing aid so at the age of almost three,  she was moved from the Blind and Deaf school and entered into a pre-K class for children with special needs.
The teachers for this new class suggested that I stop using all sign language with her, as they wanted to encourage her to speak. (She could speak by putting her finger over her trach – this forced air up and through her vocal chords). After a week they decided they would keep the sign for “potty” hehe. She loved school. Her favorite thing was when it was her turn to feed the fish.

Grace loved to swim also! We took her to our neighborhood pool, I would put my finger firmly over her trach, and we would sink under the water and pop back up. She thought that was the most fun ever!

Don’t ever be afraid to reach out and talk to people with problems. Small children were the best. They weren’t afraid to ask what was wrong and I would explain that, although she was born just a little different, she was still just like any other little girl and loved to play and have fun just like they did. There were a few people who would point and stare, but that was infrequent. There was once an episode where my niece and I went to the grocery store with Grace. My niece was around 13 and wanted to push the cart with Grace, so they were several feet  ahead of me as I browsed the produce. An older lady walked up to me and said “Oh did you see that poor little child in that buggy!?” I nodded and said, “Yes, that’s my baby Gracie.”  Ohhh the look on her face. She didn’t know what to say. And I understand that. When we see someone who looks out of the ordinary, it catches our attention. People can’t help that, but most of them get over it and, if they have an opportunity to get to know that person, they learn a valuable lesson. Looking different doesn’t make you different. Underneath we’re all the same. I hope if you see someone, especially a child, you won’t stare or shake your head, just accept their spirit and take them as they are.

Ok, here is Gracie’s Medical history for those of you with children with Treacher-Collins ( I tried to leave out the personal parts here) 🙂

My pregnancy with Grace was completely uneventful. I had all the routine prenatal care and a couple of ultrasounds, no problems were detected.

I went into labor on April 28th 1981 in the afternoon and Grace was born at 6:12 PM in a birthing room at Norfolk General Hospital (now Norfolk Sentara) after a pretty quick labor.

When she was born she looked very dusky and limp and they whisked her away quickly. It was obvious something wasn’t right.

They cleared her airway and she pinked up, but they were still very intent with her and I knew something was wrong.

At first we only knew she had a cleft palate (no cleft lip, only the palate (roof of mouth area) and her ears were only little nubs with no outer openings.

The doctors were pouring over the medical books trying to figure out just what she had. My obstetrician said he’d seen babies that looked similar and they usually had kidney and other organ involvement but luckily, Grace did not. He thought she had “Pierre Robins syndrome”

Dr McGee (from Operation Smile) was consulted and came in to see me after examining Grace. He told me I could stop worrying, he knew exactly what the problem was, Grace had Treacher-Colllins Syndrome. He said it would take time but most of her problems could be fixed. But they would have to wait til she was older to do it.

In the meantime, they had to figure out a way to feed her and to help her breathe. She had a problem with her tongue falling back into the cleft and causing her to stop breathing.

Problems: Cleft palate (soft palate) missing bones from face, particularly cheek bones , very “weak” chin, ears not developed and had no outer openings.

It was later found that her ocular nerve was intact, sounds were simply muffled due to no outer openings. She was fitted with a bone conduction hearing aide.

While still in the hospital they tried feeding her with a lamb’s nipple (a nipple used to feed baby lambs, it is larger and more elongated than a regular nipple) but it didn’t work. She couldn’t get enough suction, milk went into her cleft and came out her nose. They tried feeding her with a tube down into her stomach but found it too difficult to get the tube in each time and didn’t feel it would be safe to send her home with it.

They then tried a button on her chin with sutures that attached her tongue to it to prevent her tongue from falling back, but that didn’t work well either.

Finally they decided to insert a Trach and a Gastrostomy Tube. Her pediatric surgeon was Dr. Nuss. Her pediatrician was Dr Raff.

When her baby teeth started coming in they had very little enamel so she had to have crowns placed to protect them. She passed away at the age of 3 years 6 months and 4 days on Nov 1st 1984 as a result of a reaction to anesthesia in the dentist’s office. Her trach had been removed a few weeks earlier.

Neither her father nor I had any history in our family that we were aware of but Dr McGee said people with this syndrome often only show slight traces of it. If a family member had a weak chin, or little cheekbones, they may have had it. Also, years ago children born with problems like this would have died and families just didn’t talk about it. Infant mortality was much more prominent then.

People with Treacher Collins syndrome often have eyes that slant downward, sparse eyelashes, and a notch in the lower eyelids called a coloboma. People with Treacher Collins Syndrome may also need a feeding tube because some cases are so severe they cannot swallow. This condition is also characterized by absent, small, or unusually formed ears (pinnae), called microtia. Defects in the middle ear (which contains three small bones that transmit sound) cause hearing loss in about half of cases. People with Treacher-Collins syndrome usually have normal intelligence.

ITEMS FROM GRACIE’S FIRST YEAR CALENDAR

1DGracesFirstYearCalendarPage1.jpg

1DGracesFirstYearCalendarPg2.jpg

1DGracesFirstYearCalendarPage3.jpgApril 28th: Gracies birthday – “Little Gracie has problems and was sent to King’s Daughters Hospital.
April 29th: She pulled her breathing tube out and did so well they left it out! Mama came to see her and got to hold her and rock her.
April 30th: Grace was doing well enough to be sent back to Norfolk General Hospital’s Special Care Nursery.
1DGracesFirstYearCalendarPage4.jpg

May 1st: She took about 15ccs of formula, but she didn’t think much of it!May 2nd: I was released today.

1DGracesFirstYearCalendarPage5.jpg
May 3: Smiles
May 4: Grace had a choking spell last night! She turned blue and had to be bagged (Helped to breath)! But she’s ok now. She’s taking 20 – 25cc’s at a feeding.
May 5: I go to see Grace every day to hold her and rock her and I’m learning to feed her.
May 10: We took Katie in to see Grace for the first time today. She kept saying “Baby sister! Baby sister!”
May 11: Grace had another choking episode tonight. This one was worse than last time. She has been moved back to King’s Daughters. She was doing so well!
May 12: David’s Mama came to see Grace today. Kathy and Buddy did too but the nurses wouldn’t let them in. Not even with our permission!!
May 13: I sat and rocked her for about 1 1/2 hours today. She was still sedated and slept the whole time. They removed the breathing tube while I was there and she had no trouble at all. She is being fed with a tube.

Info from Hospital

From Hospitilization in  August 1981
History and Physical


Ophthomology Consult:

PICTURES

Gracie-and-I-play-Dark-Towe.jpg

Me and Gracie

yummy-bottle.jpg

Gracie in her crib with a bottle

Gracie-posing.jpg

Gracie in her pretty dress

Gracie-laughing.jpg

Gracie laughing!

Katie-and-Gracie.jpg

Gracie and Katie in the big chair

Oh-boy-more-birthday-cake.jpg

Gracie’s birthday

Gotta-love-that-birthday-ca.jpg

Yummy Cake!

Gracie-goofing-around-w-Kat.jpg

Katie and Gracie goofing around

1Gracieslittlechickforweb.jpg

Gracie’s favorite Little Chick; (Katie had Mr Mousie)

Gracie-with-hearing-aid.jpg

Gracie’s school picture – it shows her bone conduction hearing aid well

Gracie-on-swing-at-school-f.jpg

Playtime at School

I’d love to hear from you! Please leave a comment below or click here to email me directly!

Gwendolyn Grace Reilly: Always in my Heart

 

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10 Comments

10 thoughts on “Regarding Loss

  1. How lucky Gracie was, to have such an adoring, attentive mother. As brief as your time with Gracie was, she touched you in the center of your heart. And that, my dear friend, is a precious gift.
    What a valuable lesson you just taught all of us. We are all different, yet the same. And regardless of any differences, there is love and respect.
    Stay well,
    Thomas

  2. Pingback: My buddy S. (Susan) Tilghman Hawthorne shares with us the memories of her dear, departed daughter, Gracie… « Thomas Rydder

  3. I wish she could have stayed longer with you. It’s good to know that you have given this wonderful little person, so full of love and courage, a wonderful life when she was with you! Thanks for sharing.

    • Thank you, she gave me so much as well. I miss her dearly. So many people told me I was so strong to go through this, but I said Oh no. Grace is the strong one, she’s the one going through it, I’m just here to give her love and support.

      • Yes, I am sure she gave you so much… but don’t underestimate your ability to create joy for a special little girl who could have suffered had you not been able to give her love and support even in moments of pain. Also, there is no bitterness in anything you say about your own pain. Your daughter was well named because you, her mother, is a person of grace and strength.

I would love to hear from you!

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