Attention All Caregivers…Moms…Dads…Grandmas…YOU…
Taking care of my precious son, Hunter, during his brief eight and a half years provided some of the most memorable, joy-filled moments as well as the scariest challenges of my entire life. Now, as I care for my husband, Jim, as he regains strength and recovers from back surgery, I’m reminded of the days with our son.
I’m reminded of the many sleepless nights…
…the tears when no one was looking
…the sacrificing of comfort in order to comfort someone else
…living beyond yourself…depending on God in an even deeper, desperate way
…being thankful for the gift of health…breath…life
…joy in the midst of suffering
…patience beyond human ability
…hope greater than our circumstances
…anticipation of life beyond this one
…discovering God’s beauty in the most unlikely places
And…
I remember well the fear…
…hearts broken open
…anguish beyond words
…desperation in prayer
…confusion and frustration
…doubt and unbelief.
I’ve learned more while taking care of my two boys (yes, Jim is still a “boy”) than I would’ve learned in any other life circumstance.
I’m thankful…humbled…hopeful…and even more desperate for God today than I was yesterday.
Will you share what it’s like for you?
If you’re spending yourself for the care of another, would you be willing to tell me about your experience thus far?
What is your greatest joy?
What is your greatest fear?
What frustrates you the most?
What’s your greatest challenge?
What have you learned?
“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow into our lives, so also through Christ our comfort overflows.”
2 Corinthians 1:3-5
God has blessed me with 2 boys, ages 26 & 21 affected with Fragile X Syndrome. I would love to share my story with you and would like to send it in an e-mail attachment if you would send me your e-mail address. As for the questions above: My greatest joy is in the Lord Jesus Christ and my children. My greatest fear is that my sons will live longer than me and there will be no one to love them. What frustrates me the most is people who are cruel and explaining to people why my sons are acting the way they do or trying to pretend that it doesn’t bother me when strangers stare at them. My greatest challenge is learning how to not be so sensitive and not let what others do or don’t do affect me. Through them, I have learned to be more tolerant of others, I have grown closer to the Lord and I am learning to accept His blessings and God loves each and every one of us just the way we are. My mind and soul are tired from all the battles but I have hope because I know my sons and me will someday be with God where He will make everything perfect! After listening to your story, I feel so blessed that my sons’ disability doesn’t affect them physically and they are able to tell me they love me. It breaks my heart that I won’t have grandchildren or other things because of their disability, but there are others like yourself who have more difficult things to face. The only thing that really matters is our children will be in Heaven with us!
Hi Jill, We care for our 10 year old son Zachary, He is diagnosed with Trisonomy 18/Mosaicism and Severe Autism, Our greatest joy comes from Zac’s smile and his bright brown eyes and how he puts up with his Mommy’s singing hymns while we do 4 enemas a week, My greatest fear is because he does not speak at all that he sooo wants to say something but cannot..this requires getting up through the night just to be sure he is not cold or laying there while awake while we are all sleeping. I do get frustrated when others stare at him or like the other day kids laugh and point. I have to hold back so much in public places! Greatest challenge..not sure there is one..Zac was diagnosed at birth so his every day care of feeding, diaper changing, bathing, supervising is a way of life. I have learned that for a boy who has never said a word he speaks sooo much truth of what unconditional love looks like and gives me a sweeter view of Jesus daily!
Thank you Jill for this! What it’s been like to care for Zane— Wow— Never had to actually write this out before—
Caring for Zane is the greatest thing that God’s ever blessed me with… Zane is my little piece of God I get to experience everyday— he’s God’s unconditional love I get to experience everyday— His smile— a simple gesture to many— is worth a million memories— it can brighten my day in a moments notice. I was 19, almost 20 when I gave birth to my son. Little did I know how my world would change. I wouldn’t trade my life for all the money, goods, or anything in this world— what I have is the best— God’s gift. I have spent many sleepless, many interrupted nights listening to machines beep and i.v. pumps going off, but I said I wouldn’t trade those nights for any tropical vacation as those were the times I grew… Zane’s respiratory system became very comprimised twice this winter and we spent both times in the hospital- In October when it happened the first time, I begged God not to take him from Me… I was not ready for him to leave me… I told God… I WILL DO ANYTHING so he doesn’t have to leave me… the next month I spiraled into a deep depression and experienced horrible intrusive thoughts… I thought to myself “God, WHY?!” I have to deal with so much already, why this? But Zane has gotten me through those days and days of pain… to look at my little boys face everyday and know that I just have to whisper in his ear and I will get a smile— that’s all I need. I know God is working in powerful ways in my life— I am certain— I just keep plugging away day after day and I just want him to reveal what it is he wants me to do? Please pray for me that he will reveal it to me. Please pray for me to become closer with him everyday!
So that is my joy above for caring for Zane…
My greatest fear: Not responding fast enough to something for Zane and something going terribly wrong.
My biggest frustration: When I cannot make Zane happy— it makes me sad— this doesn’t happen often…
What’s the greatest challenge: Giving up my Mommy skills to other VERY SKILLED nurses— but I know it’s good for my family and I and Zaners…
What have I learned: That God loves Zane and I so very much and that he blessed me with the best thing he could have ever blessed me with— he gave a gift to me and my family— one that has brought many smiles, tears, and happiness… Zane- Thank you for being my true gift from God.
Going through my challenges, God gave me Jill and Hunter— and the rest of the family too! :)
Thank you for being our inspiration!
Love, Jenna & Zane
Dearest Jill…..about 20 years ago, I was taking care of my late husband John, my late elderly father, my sons John and Bill. As you know, John and Bill have multiple disabilities. Bill’s seizure disorder was out of control, John’s behaviors were testy at best, my dad suffered congestive heart failure and severe arthritis and my husband John had a brain tumor. There were days I didn’t think I could make it as I was also working. But…….I kept thinking on two things, Matthew 25:40…and I played over and over the song “One Day At A Time” sweet Jesus, that’s all I ask of you. To give me the strength to do everyday what I have to do. Yesterday’s gone sweet Jesus and tomorrow may never be mine. Lord teach me to take, one day at a time.
Those days are gone now, and sometimes I think to myself how quickly they went by. And I am so grateful to the Lord I had John for 12 years after his diagnosis, my dad lived with me for 7 before he passed on and my two boys were with me as long as it was safe. I can honestly say, Jesus upheld me and gave me extra-ordinary strength at the times I needed it, clarity of thought, wisdom for decisions I needed to make, and when the day was done, I knew I was in the will of God, for such a time as that! How beautiful you are to share your heart so openly, courageously and without restraint. Isn’t Jesus wonderful. I don’t know how people do it without him!! He is our all and all! God bless all of you and hold you up with His right hand! Amen!
Dear Jill, You have opened up doors for me. It has been almost 3 years since I lost my husband to a brain tumor. Thinking back I would never change a moment of taking care of him while his body was breaking down. From having numbness, to not walking well, to not being able to walk at all and just barely able to help move him from bed to wheel chair to lift chair and vice versa at night. The many times he lost bowel movements and I had to clean him up. The many nights just laying in bed beside him listening to him breath knowing that at any given time it would be the last time I heard him breath. After 40 years of marriage I was glad to do all that for him just to still have him to come home from work and hear him say hello and “I Love You”. I did have daytime help while I worked full time but he was all mine at night and weekends, and I cherished every moment I had with him no matter how much I had to care for him. I even look back to times when it was becoming difficult for him to turn to get into his wheelchair. The one country song “Why Don’t We Just Dance” reminds me so much of that time because in order to get him into and out of the wheelchair “we danced” He would put his arms around me and me around him and we would sway like we were slow dancing and we were able to turn him. Those were precious memories of that difficult time. And your quote from 2 Corinthians has been my life verse ever since I gave my heart to the Lord back in 1975. It has gotten me through many trials. Thank you so much for your strength because it has helped me finally see there is life to move on with.
amazing women…amazing children…INDESCRIBABLE SAVIOR AND GOD
Jill,
I am not sure how on earth you survived caring for your son for 8 1/2 years. I have been caring for my son for the past two years. It is awful. Of course I am the rock in the house and no one ever sees me cry, but I am not sure how much longer if am going to be able to handle this. I love him so much and I can’t stand watching him suffer or being so scared. I try to keep positive and make him concentrate on the positive. He protects his father from the truth because he says he can’t handle it, but I can! Truth is I can’t handle it. As the days go by and God still has not answered my prayers, I just don’t know how I can go on. How do I keep him going? How do I make the right decisions? How do I do what is best for my son and what will make him healthy again? Why won’t God answer my prayers. I pray every day the same prayers. I am almost believing that God doesn’t really answer prayers. That if you are lucky enough to have a prayer answered, it was truly just luck. I love God with all my heart, where is he? My son has been through so much. I have almost lost him twice. My son needs to live his life again as a little boy….he needs to live the good life that God has promised us. How do I not lose my mind? Day after day of unanswered prayers is too much to bare. I am the mommy and I am supposed to be able to kiss the boo boos and make them go away, but I can’t.
Dear Jill-I am not caregiving to anyone at this moment but I did take care of my mom for 9 months in 2001-2001 as she battled terminal lung cancer. It was one of the toughest things I ever had to do, but I would do it again in a heart beat. Taking care of someone who is dying changes your perspective on life. The experience taught me how temporary life is and how we should set our eyes on things above and not on things on earth. The experience humbled me and brought me closer to God and Jesus. I believe it was the beginning of my faith journey which continues today. Knowing God and learning to trust in Jesus has brought me great joy and comfort.
I am facing so many unknowns in my life right now – job loss and significant health concerns and my greatest fear is that I will not have the strength and courage to face them. I pray for understanding of God’s word and courage to practice it in my life but I am afraid that I will not succeed. I want to have the courage that Jesus had when he faced the cross. He gave so much for us and all he asks of us is to believe and trust in Him. My greatest challenge is to give my worries to God each day and continue to believe that He will never abandon me and will always provide according to His will.
Today, as I read from your book you sent me “Prayers of Hope for the Brokenhearted” – the prayer “In Need of Your Comfort” – I thanked God again for bringing you into my life. It is amazing how the prayers in your book, your posts on FB and the comments and these blogs speak to my heart and I truly believe they are all God’s way of speaking to me and giving me the strength I need. May God continue to bless you and keep you in His Care.
Dear Jill,
As I read about your life story my challenges at times seem small. But as they multiply I have been both shaken and relieved on an almost daily basis. Our son Cody has Down syndrome which we found out about after he arrived. We were less concerned with that then his heart defect which required surgery at four months. He has done so well and provides an endless stream of humor, joy, crafts and inventions. Almost synchronously he has spent months each year with illness, emergency rooms and hospital stays. I remember sleeping sitting up with him laying on my chest so he could breathe. And “throwing out” as he so aptly named it also rendered many an unplanned carpet cleaning. All of
that seems emotionally exhausting at the time but
never fearful. I found I am almost always at the
depth of peace when I am at my physical end,
unable to control the smallest thing. And four years ago I moved my parents here to care for them as we sensed decline. Sure enough strokes, falls and Alzheimer have ensued. This could sound bad but my son has found his purpose in caring
for them, following them around with their canes
or walkers. He is a servant. I watch him be so
patient and I can imagine him some day sitting
with them on his lap;-)
So my joy is making shadow boxes and sock puppets and oh my that is fun.
My frustrations? Trying to meet the needs of so many with only one me. I feel like I miss the boat some days.
My fear is that I will miss it; that moment of fun, memory or a hug.
And I have learned so much but most important is the dishes just don’t matter and the tv could explode and the phone calls or emails must wait. I need and want to be here in the moment.
So my joy? In any circumstance is a son who sees only happiness and fun! I mean who thought I would make shadow boxes and sock puppets to play with at my age.
Hi Jill,
One thing that I have learned about from my husband having a heart attack is to rely on family and friends. I never really knew who would be there for me in an emergency and those that would help me out. You find out who those friends are that will hold your hand through trials and those who will pray for you for you during them.
Joann Robb
Hello Mrs. Jill Kelly :0)
Wow… what a beautiful blog! <3 I don't really know how to form sentences or even begin to answer your questions because I am for one, not a parent! But, since I have met you a few times now and a certain person that has always been with me every time that I have been in your presence, I feel the need to tell you about them! The person that that falls into the category of always needing to be looked after would be my big brother Nate! Most people think he's younger than me because I normally tell him what to do or how he acts… but in reality he is definitley THE BOSS and A BIG BROTHER! LOL! You see, Nathaniel Glen Gapa is definitely a gift from God (which is his name meaning) and a constant joy in my everyday life. When Nate turned 3-years-old my parents knew something just wasn't right. He went from talking and being the normal terror all 3-year-old toddlers are to the complete opposite. He began rocking back and fourth when he was siting on the floor, flapping his hands when he was frustrated and screaming during all hours of the night. I was shortly born in to midst of all this, so my parents just thought Nater was acting out because I was some how stealing all of "his attention." They thought it was normal for a new and adjusting big brother to act like this, so for a while they dealt with it.
But, it was when Nate suddenly stopped talking back to them whenever they tried to converse with him, when they finally noticed something was terrible wrong with him. So, I believe as the story I have been told =may times goes, that our family pediatrician diagnosed Nate with Autism. The colorful picture of what my parents had dreamed their blessed little boy to be turned black and white. But, as the cyclone of an Autism diagnosis spun around them, it opened their eyes to how beautiful and brilliant the second son and third child God had given them could be! After all, without Nate's Autism… how could have he taught himself how to read at age 2?! How could he know every capital of every state and then some and love geography and grammar more then anyone I know does!? Nathaniel is also super good at sports trivia and he has a undying and unbreakable love for his Buffalo Bills & Mr. Jim Kelly! :) (You have no idea how excited his is, along me with me, to go to Hunter's Day of Hope for Children and even the Without A Word book signing, he loved every second of it! :D) He's definitely smarter than I could ever hope to be and even though he deals with things being to loud and issues that arise when people ask him to many questions, he is the happiest person I know! :) Although Nate is 22-year-old, he still can't tie his shows, ride a two wheeler or even drive a car and have a license, THERE ARE SO MANY MORE COOLER THINGS HE CAN DO! He can wear cool Z-strape Skecters that Velcro, ride his big tricycle and drive crazy on the antique cars and bumper cars at Darien Lake all he wants! Sure, he may be the only one his age who still believes in Santa Claus and the Easter Bunny, but hey… I think it's so cool he never ever has to lose his innocence and belief in all child like things. I actually think more people in the world need to be like that, so it can be a far more better place than it is! So, after I have written a novel to you trying to sum up Nate's story… I'm going to attempt answering you questions!
Even though I didn't give birth to Nathaniel Glen Gapa, I think I have definitely played a major role in raising him! I'm not trying to take credit from my Mom, Dad or grandparents, but even they call me Nate's Little Mom sometimes! :) I think Nate is definitely the greatest thing God has ever given me! I never really ever treated Nate like he was disabled or different from my other big brother Bill, who doesn't have Autism. I just never really knew anything was wrong with Nate when I was little! He was just another too cool for school big brother who definitely didn't want me bothering him all the time!
The greatest joy Nate brings to my life is always having someone to hang out with! He's always there and I love spending time with him. I think my favorite thing to do with his is turn up the music and just dance. We both like to dance a lot!
The greatest fear I have about or for Nate is people understanding why he is the way he his and why he acts like he does in public because of the Autism. Nate surely didn't pick to be like the way his is or want to be that way. I remember one time when we were younger and my Mom took Nate & I to a high school marching band competition with her. We were sitting in the bleachers and someone behind us was complain about Nate's constant flapping. They didn't understand why My Mom couldn't control him! My Mom tried to calm Nate down, but all the noise from the instruments was just to much for him to take in at once, so to put a sock in the gentlemen's mouth who was sitting behind us, she finally gave up and moved us down to the grass to watch the rest of the show. Some people will just never understand how special Nate is.
What frustrates me the most about being the little sister to someone with Autism is feeling different. I remembering be little and playing outside with my friends when my Mom called me inside because I had to watch Nate for a few minutes while she and my Dad went somewhere really fast.I didn't really want to be the babysitter or come inside then, but I did. Once they left, I ran right back outside to my friends and left Nate inside all alone, with my Grandparents right next door. I thought he would be fine for a few minutes until my parents got home! After all, none of my other friends had to babysit their big brother or go inside for the night so early… so why should I?! But, to my surprise… my Mom came home and found Nate all by himself. She then instantly came outside to find me back with my friends and yelled at me for not staying with my brother. This is the only time I remember feeling frustrated about having Nate in my life.
The greatest challenge about having N.G.G. in my life is probably remembering to be patient and forgetting that he's different. Don't get me wrong, I treat him like a normal, living and breathing human being but… sometimes I lose my calm, cool and collected-ness with Nate and my virtue of patience gets tossed right out the windows. Especially if Nate doesn't want to listen or you tell him to many things at once. I need to remember to slow down sometimes and remember Nate needs extra special instructions sometimes and that even he has bad days. Thankfully, this doesn't happen to often though!
Nater McTaters has taught me some much! I simply can't imagine life with out him! Without his constant sunshine of light into my life and his special ways of teaching me compassion and kindness for others who are suffering or dealing with other issues beyond their control, I think I would be a different person. The biggest lesson I have learned from Nate is probably that just because your different or have a disability means nothing! You still can live a fun and exciting life filled with happiness and passions for things! Nate is just plain amazing to me and I just love him to pieces!
Love my boy, now a fine young man of 17 years. Born at 24 weeks gestation,he is a survivor, through many prayers and belief that God is good and will see us through all struggles, giving us purpose and meaning to our lives. With HIS gift of everlasting life, we can overcome our struggles.I love having faith in Jesus Christ and all his teachings.