My name is Barb DeLong, my husband, Jon DeLong and our it my pleasure to introduce to you our beautiful daughter, Laura DeLong.
Laura is 20 years old, soon to be 21! I can remember like it was yesterday when the doctors stood at the end of my gurney in the recovery room and “announced” Laura would not likely live. In the next days, months and years the diagnosis would change many many times. They told us children like Laura were institutionalized as she would never swallow, hear, see, sit, talk or walk along with many medical issues and required surgeries.
I always share that Laura and the Lord had much different ideas. As a result of a lot of love, Prayer and perseverance and great support from professionals from therapists, teachers, aides & doctors, Laura has been able to do many of the things that they said she never would.
It took Laura 2 years to learn how to safely swallow – she does have a feeding tube to supplement if needed, but Laura now can enjoy foods like you and I = they need to be pureed and she cannot feed herself, but still she can eat – and she certainly has a sweet tooth just like me! Laura did not sit until she was 7 years old – – but still she did it! According to the doctors Laura does have significant visual and hearing disabilities, but she certainly jumps up and down when someone she loves walks into the room, and she responds to all of our voices and loves to dance to music! Laura took her first steps at the age 12 on Easter Sunday at church – can you even imagine – and now all she wants to do is walk and walk and walk – 15 hours a day! She is abit clumsy so we have her wear kneepads and she still needs to use a wheelchair for long distances but still I think she enjoys that freedom more than anything in her life.
Laura has no fine motor skills and she depends on us for ALL things…From the minute she wakes up to when we lay her down at night. We are not sure what details of the day Laura comprehends and what she doesn’t – we do know Laura understands love and kindness, she knows her routines–she experiences pain and sadness, she knows joy…and she makes a difference in every life she touches…she has significance to the world. She has taught us more than we could ever teach her.
Laura is “aging out” of the school system this year and it is a very frightening time for us. We are wait lists for day programs, for respite, and of course the BIGGEST wait list of all residential. Jon and I are “aging”, Jon is 66 and of course a woman never reveals her age but I’m not far behind…Jon has some significant medical issues – I worry daily that I will get some awful disease, and we lay awake at night wondering…what IF?? What if….one or both of us die before we can obtain the appropriate living situation for her? Not just a “bed” but a home, where she will be loved, where we can be integral in the transition so she’ll know its ok and that we didn’t abandon her. We are paralyzed by questions like: Who will protect her from harm? Who will take the time to figure out what is wrong if she is sick, frustrated or sad? , who will wake her up with hugs and kisses, and keeps her stimulated throughout the day so she doesn’t go into zone…Laura has no behavior issues so she is easy to ignore…and that scares us…that she’ll be stuck in a corner somewhere and forgotten………We need to know that her services will continue and that there will be opportunities for Laura to live out her adult life in a residence with devoted professionals caring for her, as we continue to be VERY involved in her care; and not a crisis situation where she will wonder why we abandoned her which will surely break her heart and rob her of her joy and no one could every explain it to her – she would never understand.
……..and the worst thought of all that no parent should ever have to experience, and I admit to you, with much shame and guilt. that I secretly consider that it would be better if Laura would die with us – What a horrible thought for a parent to struggle with.
So to each of you in Government leadership, I hope that you will take with great heart what you have heard today….that you not forget it…and that you figure out how to help us, and also how we can help you help us….because we need you to be involved. Laura represents thousands of our most vulnerable population. There is an URGENCY here…A crisis indeed and it is not reasonable or acceptable that it be ignored any longer. Action is necessary, now not later, so before you walk out the door this morning we ask for your commitment to focus on the need to develop solid strategies that will result in specific actions to address our concerns and mitigate the crisis that awaits us if we don’t.