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2/24/2017–Six years

Dear Love for Lily Fam,

I know new posts have been few and far between recently. Believe me when I say that we’ve been incredibly busy and when we are not busy, all we want to do is shut our brains off and have a bit of downtime. So, sorry for the lack of updates.

As you know, the 6th anniversary of Lily’s accident is February 24. My family and I really dread this time of year, with the cold, damp, gray days and although it is the shortest month, it seems like it will never end. Thank goodness for the warmer than usual weather over these past few days. This year, it has come hurtling toward me even though I’ve been swamped at work and at home. I still have times where I think if we had made different choices back then, maybe Lily’s accident wouldn’t have happened. We do blame ourselves for it and that will never change. However, life goes on and we have to pick up the pieces and keep moving, as inconceivable as that may seem sometimes.

I was going to share a very different post from this one, but I am choosing not to dwell in anger, bitterness, and grief, even though those are emotions I feel welling up at any given moment. But, I do want to share a quote from the mother of a young boy who has a brain injury also:
“In some instances time does not heal. Instead life continues on, acting merely as a distraction. The grief remains, as raw and sorrowful as it once was. Sometimes it bubbles up and hits when you least expect it but it’s also there when you do, like today.”

I am going to choose, in this post, to be grateful and thank everyone who has supported us along the way.
Thank you to our friends and family who were there with us during those darkest hours and days when we didn’t know what was going to happen. You spent many sleepless nights with us in the hospital and sacrificed time at your own jobs and with your own families to support us.

Thank you to those who came and prayed over Lily, brought food, gifts, and monetary donations. Many of you were strangers and yet you took the time and thought to support our family.

Thank you to those who have cleaned our house, made us meals, visited us, helped with home improvement projects and continued to donate to us over these past 6 years.

Thank you to those who still remember Lily and my family in your prayers.

Thank you to all of the nurses we have had over these past six years. You’ve seen the good, the bad, and the ugly of the realities of our daily lives. You know we are not perfect parents or people. We could not live the rest of our lives–going to work, sleeping, running errands, or just doing some fun things (sometimes)–without your presence. And I want to give special recognition to Robin, our main dayshift nurse, who really loves Lily, cares for her well, advocates for her, and knows her inside and out. She is a treasure and we are truly grateful for everything she does.

Thank you to those who are currently helping us with the home projects we need to complete in order to sell our home (and hopefully find a home that’s more suitable for our needs). We are so grateful for the many hours you’ve sacrificed to paint, install flooring, and fix broken things. We literally could not have done these things without all of you. Thank you. We’re praying and trusting that God has the perfect house for us at the exact time we will be ready for it.

I would personally like to thank my husband for being an amazing Dad to Lily and Bryce through all of this. I wish you could all see how much time and energy he puts into taking care of Lily. He is her Daddy and I know his heart is broken, too. I would also like to say that Bryce is an amazing, resilient young man who still struggles with all of this, too. We are so proud of him for all he has had to endure and overcome that most teenagers do not have to deal with every day.

I also thank God for all he has done and provided for us. I could not get up and live this life without His peace and strength which truly is beyond my understanding. I will continue to stand on that and trust Him, for I know he is constant and faithful to us.

Thank you again for continuing to support our family. We love you and are grateful beyond words. Please do not forget our Lily. She is our precious angel and her life matters. We strive every day to let her know how loved, needed, and precious she is. Every second we have with her is a gift. We know she is in there and can understand everything we say and do. I was at a meeting with her teacher recently, and she said she definitely notices Lily responding to things in her own way, and you can see it, too, if you pay attention. That meant the world to me and in fact, I am welling up as I type this because her teacher GETS IT and notices that Lily is trying to tell us things!

Thanks for reading and following our family. God bless all of you.

9 replies on “2/24/2017–Six years”

God’s blessing to your family and Lilly. I have not forgotten. If there is something I can do, please let me know.

Peter Cloonan
717 725-8723

Beautiful post. While my circumstances are very different…your words resonate for me as well.
I am leaving Lancaster and will continue to keep your family in my heart.
Blessings and peace be with you.

Melissa please don’t forget how strong and wonderful you are. God truly blessed Lily with you and Todd. We are amazed with the strength and love the you and Todd give Lily and Bryce everyday. We truly admire the both of you. This journey we are on could not be gotten through without the strength and unending love of our Savior Jesus Christ. Much love and many more blessings for your family. We love you. Mom and Dad.

Keeping you and your family in my prayers and thoughts. Not sure if there would ever be anything I could do to help, but am willing to jump in if I can

I worked with Todd back when he was with ETA. I have been aware of Lily’s accident and the have followed subsequent struggles she and the rest of your family have been going through over the last six years. I can only imagine the “what if” scenarios that plague you and wish there was some formula that would remove that burden. My heart and prayers go out to you and your family for inner peace and resolution.

Four years ago our grandson, Jackson, was born with a rare brain disorder which results in his inability to produce the muscle mass for extremity motor skills, food digestion, and the ability of speech. And it is that last point I am writing you about – the inability to speak.

I know that our Jack is trapped “in there”, frustrated with the inability to communicate with us. It is my life’s goal to find a way for that to happen. I am aware many of the automated augmentative solutions that involve eye movement, head buttons, proximity switches, puff/blow, etc. But the problem is finding what method Jack could use. From my research, this is where a Speech-Language Pathologist (SLP) comes in. I suggest you check out the website for the American Speech-Language Hearing Association at http://www.asha.org for additional assistance in finding an SLP in your area.

Through a Leukodystrophy support group that my son and his wife belong to they have learned of a facility outside of Washington DC called HSC Health Care System (http://www.hschealth.org) which some members highly recommend. My son and his wife are in the process of getting Jack accepted there.

I hope that this or the ASHA info above may be some assistance for you. I see the inability to communicate as such a necessity and pray for that day we can converse with Jack. I hope and pray that you can achieve that with Lily as well.

God bless you guys and may He give you strength and love and courage.

Thinking of you and your family every day. We have not forgotten and wish you continued blessings of love and support from all directions.

Melissa, I have never met you and only know Todd through F&M but you are the most amazing people and I can’t imagine the struggles you must go through every day. Your faith is amazing and I know God watches over your family even in the darkest hours. I still keep Lily in my prayers all the time and wish you all peace on this anniversary.

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