Unpacking a New Normal
Accept being served during times of need
During the past two weeks we have had many family and friends step in and assist us with moving, unpacking, keeping the kids, providing meals, birthday party planning for Lily so she doesn’t get forgotten, and the list goes on and on. As a family with a special needs child we learned over the last five years how to serve and how to accept being served. The concept of being served during times of need is often difficult for people to allow. BUT YOU NEED TO! There is never a “good” time for tragedy.
There is too much to do! I am so thankful for all who have stepped in and prayed for our family and helped us through this difficult time. Our journey to a new “Normal” will be hard road. But one thing we know for certain is we are never and have never been alone.
Nothing about this is normal! Normal is a 90-year-old woman that lives a full life. Harper was five and fought everyday just to live. Nobody, not even me, understood just how hard existing here was for her little broken body. My heart hurts but I’ve never not done all that I could to make her life better. I’ve spoken when she couldn’t and I still do! I will honor her by completing the tasks she left for me…the celebration of her life being one of them.
Planning a party you never wanted to attend
So how do you plan a party you always knew you would have to plan but never wanted to even speak of? What flowers? Pictures? Songs? What do you wear to the event? So many questions….AND NO RIGHT ANSWER!
The key to it all, again, is letting others step in and HELP.
I want to honor Harper and I feel she has guided many people to provide specific aspects to her Celebration of Life. I had ideas for the celebration that I was unsure of how to execute. I went through my list of friends to see who might best be suited to assist me. They were ready and waiting when I called upon them. Elements came together. Videos were made by others with perfect songs and pictures. People WANT to help you! They are just waiting to be guided by you as to how they can best be of service to you. Guide them.
I learned during our wedding planning process over 13 years ago that it doesn’t matter what happens on that day, the end result is the same. Perfection is not necessary. Rejoicing with those that come to celebrate with you is what matters most. Again I encourage anyone who was touched by Harper’s life to attend.
Harper Elle Howard
April 12, 2010 – January 8, 2016
Celebration of Life service: Saturday, January 30, 2016 at 11:00am
First United Methodist Church
Carrollton, TX
For those that might be traveling from out of town to Celebrate Harper with us this weekend, the Marriott and my friend Dana have graciously provided rooms at a rate of $69 for a studio queen suite and complementary breakfast buffet. Please email Dana or call (972) 473-6761 x4 before Friday at noon to reserve your room.
Small decisions becoming insurmountable tasks
The biggest thing hanging over my head was what to wear to Harper’s party. You know how it is when a small decision can seem like an insurmountable task? Immediately Mrs. Sheaffer Sims came to mind. We had such an awesome time in July 2015 when I won the biggest surprise ever, a shopping spree at Nordstrom’s. I didn’t even know I had been nominated.
Not to sound like a commercial but I learned that Nordstrom’s actually does have responsibly priced clothing and they have amazing customer service people that will in fact help you shop! So guess where we went….Nordstrom’s! And when the customer service woman in shoes came out with zebra print I KNEW the experience was Harper guided all the way!
In one hour we had a dress I WILL wear again at future American Epilepsy Society conferences, a tie for Dustin, and a dress for Lily that she LOVES. All with minimal tears…and lunch without ever having to leave the store.
Some days are harder than others
But I’m not going to lie, the day was tough! My heart, my house, my family, my life… has a hole in it, a void, a missing piece. I’m very sad because I’m now living the phase of a special needs life many have already gone through and others will follow someday. These times are hard and my heart breaks in new understanding for those that have walked in my shoes and those that will eventually…today, tomorrow, every day.
I want to shut Hope4Harper down. I wanted to do that years ago, but I can’t! Sharing her helps others so how can I shut it down? Plus if she were still here I’d still be sharing so I need to keep sharing to help others.
I hate our new home because Harper’s not in it and everything about it reminds me of her because it’s fully handicap accessible. But, I love our home because Harper helped pick it!
I hate my phone because my camera roll is filled with a mix of her, Lily and Seth. I hate Facebook memories because she’s in them. But I love them because I remember things I forgot. I will hate a few years from now when she no longer appears in the memories feed.
Our family is okay but we are all very sad, very heartbroken and doing our best to pick up the pieces and keep moving forward. Some days are harder than others.
Taking the opportunity when it’s placed before us
Many people were placed in Harper’s life to help keep her healthy and alive and we all did the very best we possibly could with the information we had at the time.
And even knowing that because of CDKL5 it could have happened at many moments in her life, the loss of Harper really took us by surprise. If you have a special needs child this unspoken terrifying outcome is always a possibility. I do not believe things happen for a reason. I think things just simply happen and it’s what you do with what has happened that gives meaning. I’d say never get too comfortable and always treat the day as if it could be your last with them.
When Lily once asked to skip her morning routine so she could get Harper ready with me, I let it happen with a SMILE and I’m so glad that I did! Because she too will never get that opportunity back. It’s taking the opportunity when it’s placed before us that can lead to hope and a multitude of memories to cherish for your lifetime.
My friend Brandy with MyEpilespyStory gave the best advice. Go buy new panties! What-what? Yup! It’s a new phase of life and for that you need new panties! So this weekend we are all getting new panties for our adventures to come.
Recent Posts
Harper went to Heaven
Month-by-Month: CDKL5 2015 Year in Review (what we now know was Harper’s last…and best…year)
(Editor’s note: a giving page has been created on the University of Pennsylvania website as another option for supporters to donate directly to Hope4Harper seizure research project. UPenn in Philadelphia, PA is where Hope4Harper-funded research is currently taking place. Without funding, science can do nothing with the generous gift Harper left behind.)