My Grave side Reflection from yesterday

Our family drew great comfort from Lilly's funeral service and burial yesterday. We are so greatful to everyone that joined us - either in person or in spirit. I will be posting details about it soon, for those who were unable to attend.

I have had a number of requests from people wanting a copy of my husband's reflections on Lilly that he gave at her funeral service. He handwrote it out so I will transcribe that soon in the future and post it here. I gave my reflections at Lilly's grave side. I had typed mine out, so I copied and pasted it below.

What follows is not what I said verbatim, but it is generally what I shared. I found I was so excited to be in front of everyone talking about Lilly that I didn't end up needing to read it exactly.

Lilly’s Mamma’s Grave Side Reflection

My husband Frank has already shared a wonderful summary of Lilly’s story at her funeral this morning. I have the need to talk about Lilly too. But I think that I am somewhat still in shock and my brain feels confused. It is strange not being able to share as I’m used to since it’s been so easy to write Lilly’s blog. But maybe it’s because it’s always been easier for me to share by writing rather than talking. I have written 355 blog posts since I started it August 12 of last year! Lilly certainly gave me enough material during her 17 short months. Life was never dull with her! Every time things would seem like they were settling down Lilly would pull a fast one on us. My mind is still swarming with ideas so I will probably continue to update it for awhile, in hopes that it may bless others. I know that I have been helped by looking at the blogs of several Trisomy children that have died this year because their mothers have continued to post. I sincerely thank you all of you who take the time to read Lilly’s blog. I never thought we would get as many readers as we did. I still am wondering who are all these people that read the blog in places like Pakistan, Russian, Hungry, and Israel? We remain humbled by the number of people that have taken such a genuine interest in Lilly and are grateful beyond words for your support and prayers. We feel it and that is what is getting us through this.

Anyway, I finally decided that what I wanted to share about Lilly was simply what an average day was like with her. Not her days filled with sickness or going to doctors. (I still shake my head about the number of doctors Lilly had. Types of doctors I had never even heard of.) But about our favorite days. Just the regular days at home.

Lilly was my living baby doll. (Tabby’s too - whenever she carried her in public people often thought Lilly was a doll at first!) Just about the only time I was ever apart from Lilly was during my weekly grocery shopping. I just refused to take her to Walmart aka the germ factory! But other than that, I was pretty much constantly with Lilly, day in and day out. I LOVED it and I don’t recall ever thinking I needed a break from her.

Every morning when I woke up, I would thank God for another day with Lilly. Then I would set up “Lilly T.V.” [explain] On a typical day, Lilly would wake up anywhere between 8:30 and 12:30. As I sang her her good morning songs, I would take what we called her “boxing gloves” off her hands (they were splints to help train her hands not to clench so tight) and unhook her from her feeding pump. And up until last month, I would unhook her from her oxygen. (It was glorious for Lilly to not be on oxygen at night for a whole month!) I’d carry her downstairs for a diaper change which she loved. She was one of those babies who liked being “clothing free.” Then suction her nose, clean her g-tube area, and get her dressed for the day. Big sister Tabby usually liked to be the one to do her hair.

If it were before 10:00 a.m., Lilly would then join Hunter and I for pre-school. [explain] Hunter loved when Lilly would join us. He loved his baby sister and would kiss her and tell her he did. He’s our expressively affection child. Then it would be time to help Tabby with some of her homeschool lessons. Lilly would usually be in my lap during this time. Or Tabby’s lap during Literature. I have to put in an aside here - there are many many reasons I am grateful that homeschooling is legal. But a big one is that homeschooling allowed Tabby to be home every day with Lilly. She got to spend a maximum amount of time with Lilly and learned lessons that no school room could ever teach her.

At lunchtime Lilly would sit in her bouncy seat and bop the animals hanging on the arch over it. If it were a nice day we would go for a walk. Unfortunately that didn’t happen as much as we would have liked though. We didn’t want to take her out if it was too hot or too cold or too windy or there was too much pollen. But when we did go, she enjoyed it.

During the afternoon I would take 20-30 minutes to do some therapy with her. I kept good notes on things her regular physical therapist and her occupational therapist did with her so I could do the same things. This was truly one of Lilly’s favorite times of the day. She LOVED to stretch and practice sitting and standing and play with her dried beans and get into crawling position, etc. She just loved to work! Both therapists always said Lilly was such a hard worker. One commented once that Lilly wasn’t all whiny like a lot of her patients. I loved that! Lilly especially loved when I rolled her back and forth. This was a guaranteed smile and look of pure delight on her face.

Every hour to hour and a half of Lilly’s waking time, I fed her. It was called a bolus feed where we hooked a tube to her g-tube and then filled a big syringe with an ounce of pureed food or breastmilk or water and fed her. I took such satisfaction in this. As Lilly’s mamma I had such a need to feed her well. One thing I learned when Lilly got her g-tube put in this past May, was that most people with g-tubes simply eat man-made liquid formulas. I knew they are supposed to be scientifically balanced and all, but I just didn’t like the idea. I found out about a book that was all about giving your g-tube fed child real food. I got really into it and started pureeing foods for Lilly. I would puree foods in the blender then pour them into ice cube trays and freeze them. Pop them out frozen into baggies and store in the freezer until she needed them. Lilly was eating so healthy and I was so excited about it. I want to post a list on the blog soon of all the foods she was eating before she died. I was so proud of her! The day she died, I had pureed chick peas for her to try. They’re still in the ice cube trays in the freezer. I’m disappointed I never got to give her any. I was so into the every hour pattern of feeding that I am feeling rather lost without it breaking my day up.

Around 3:30 or 4:00 it would be time for Lilly’s nap. I would lay her down on a soft pallet on the floor and put toys by her and her mirror. She would smile and talk to her reflection in the mirror as she fell asleep.

Depending on when she fell asleep, I would wake her up at 6:00 or 6:30 so she could eat and also because we didn’t want her awake all night. She would usually greet daddy first. He was almost always guaranteed a big smile from her. Except when she would tease him and pretend to be aloof. (He would try to make eye contact with her and she would keep moving her eyes away every time he got in her line of vision.) Then it was time to eat and join us for family worship time. Next she would help me get Tabby’s school assignments for the next day in order. Then it was usually playtime with Daddy for awhile.

Tabby liked to dress Lilly in her pjs most nights and even made up a song to sing about it to her. She was such a loving big sister. At bedtime, I would lay Lilly on our bed and she would begin to look expectantly at the ceiling fan, waiting for Frank to turn it on. Oh how she loved a ceiling fan! I would put Lilly’s handsplints, aka boxing gloves on her and she would pretend to box Daddy in the face. Then he would tell her good night. Lilly and I would be night owls for a little while and snuggle and kiss and smile. Then when I laid her in her little co-sleeper bed next to me, she would just grin so big. She loved “Lilly’s bed.” After I had her tucked in and blessed her she would then start looking in the direction of the lantern I kept on at night so that I could peek at her when I would wake. She would then fall asleep looking at that light. And I would lie down and fall asleep looking at her while praying over her.

So I hope that wasn’t too boring to listen to, but that was a typical Lilly day. We had a general routine, peppered with lots and lots of hugs, kisses, and smiles. Lilly was such a happy and content little thing, always patient and only crying if her tummy hurt. She loved to watch her siblings and be apart of everything that went on. Because she was such a part of everything, in her own little way, I know that when things settle down again that will be when we miss her most. A regular day without Lilly just will be filled with huge voids.

However, I really can’t complain. God was so merciful and generous with us and allowed Lilly to live longer than most babies with Trisomy 18. When Lilly was first born and I would talk about how I needed her to be around longer, Frank would tell me that it would probably just keep getting more difficult to let her go the longer she was with us. When Lilly was really sick and I would say that it wasn’t a good time to for her to die, he would remind me that there would never be a good time. He is right.

It wasn’t until the last few years that I really began to believe that God is sovereign in all things. I used to think that God initially set the world in order and then just sort of let things go and really wasn’t involved much other than answering a prayer occasionally. But in watching Lilly’s life, I know that couldn’t be farther from the truth. I could see God in Lilly every day. I have learned more things during our Lilly’s life than I have ever learned before. And I will always be indebted to Lilly for that. And to God for creating Lilly in the first place.

The closing thought I wanted to share is that special needs children really are special. I often said that Lilly’s equipment took more work than she did. I saw that her seemingly limited knowledge was really a blessing. Life was simple to her. She knew she loved her family. She loved her toys, especially Hank the caterpillar who is buried in her coffin with her. She loved her days at home. And she loved all these purely and freely. She was joyful. She was more consistently joyful than any one of us will ever be. She was one of God’s little angels that was simply on loan to us for a too brief of time. But she was a glimpse into His glory. I am grateful beyond words that she was my daughter. We loved her just as she was, Trisomy 18 and all. I admit I still hate the short life span and all the sickness that goes with T-18. But there really was so many endearing things about it. Like Lilly’s extra long eye lashes and absolutely crazy cowlicks.

The hardest thing I’ve ever done in my life was last night when after the visitation I held Lilly once more. Then I had to lay her in her coffin and walk away from her. This just seems unnatural for a mamma to leave her baby. It made me long for the old days when you could keep the body in your house for a week. But I know even that wouldn’t satisfy me. It just doesn’t feel right not to have my Lilly in my arms anymore. But I know now that the easiest and most wonderful thing I’ll do one day is to die. I can not wait to see my Lilly again - to see her whole and perfect - and to be in the arms of my Jesus who welcomed Lilly there. Praise God that this life is just a short phase until the next where we will be for eternity.