Four children have died in the past month. Not just any four children, but four children that have the same rare disorder as my son. And that scares me. Our children’s lives have an early expiration date.
You see, this rare disorder has had the potential of taking their life since they were born. Upon diagnosis the doctor comes in with papers and solemnly delivers the news that this condition can be deadly and can take our precious child without much warning or it can happen over time. And so with this news, we take our babies home and watch them like a hawk, monitor their illnesses like an ICU physician, bring them to the ER when we have that famous “gut instinct”, and we hope and pray that they’ll be the child that makes it to adulthood. We are most definitely those beloved helicopter parents. And for good reason.
I don’t know these four children personally, although I feel I do. Their parents and I are family by way of having a child with special and medical needs on social media. I have watched these four children grow up, watched them reach milestones, watched them endure hospital stays, and watched them be oh so loved by their families.
Then one day, the news spreads like wildfire. Another child is gone.
Their deaths knock the wind out of me like a punch in the stomach. I sob at the news and mourn their loss for days, weeks, and years after. Their loss hits me deep in my heart where I can feel a tiny sliver of the heartache their parents feel. In a way, their child is my child. And my child is theirs. When one of the group buries their baby, we all grieve. Because after all, that could’ve been our baby. We can be removed from this elite group that we belong to and put into another elite group that no parent should ever have to belong to….the group of parents who now have an angel in Heaven. The group that has empty, aching arms. The group that we fight to stay out of with every ounce of our being.
I wish I could ensure that my child lives a long, happy life. But I can’t. I don’t make the rules. But still, I dream… I think about what he’ll look like when he’s a teenager. I think about how his older brothers will go off and get married and he’ll be here with my husband and I smiling happily as they come back home to visit. I think about him being the size of my husband and us having to recruit help in caring for him. Yes, this life may sound arduous and incredibly difficult-but the thought of losing my child to his diagnosis gives me a stabbing pain in the heart and makes my throat close up that is far more difficult to deal with. To no longer see his bright smile or sparkling eyes, no longer hear his infectious laugh or him humming to his favorite toy, no more hospital stays or therapy, or no longer caring for every aspect of his life-like I’ve done for the past 9 years-that is a heartache that I’m not ready for or will ever be ready for.
While I grieve the deaths of these children and try to stop my own child from going to his eternal Home, I remind myself to live in the here and now. Instead of worrying nonstop (which I do) about the how, when, and where-I have to tell myself that my child is alive today and I need to cherish his presence. I soak in his goodness every single day. I embed these memories we make-both the good and the bad-in my brain. I breathe in the smell of his shampoo and lotion when rocking him. I brush his thick hair with my fingers and feel its texture so that it’ll stay with me forever. I try to make mental pictures of the life that is in his eyes so that I’ll never, ever forget. I just try my best to remember all of him, every single teeny tiny last piece of him. Forever.
This life we live is brutally difficult, strenuous, and exhausting, but it is beautiful. It is ours together. And as hard as it may be I can’t imagine not living it anymore. So I’ll sit here tonight rocking him, breathing him in and cherishing every day like it is our last and I’ll continue to do so until the end, when either I or he gets called Home to be with the others.
Rest in peace sweet angels. May your perfect bodies run, dance and leap for joy in Heaven.
.my blessed little nest. 
Thanks for writing with honesty the fear we live with everyday. The Moms the Dads the Grandparents, everyone. ❤️
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This is not my fear but my family’s reality, a true lifetime nightmare ! Beautifully said and understood, life truly never ever the same
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Your blog is so beautifully written. I feel so privileged that you share your sweet Connor-Man with us and you also share your heart. In all ways you point us to Christ. My faith has been strengthened and my walk with Christ encouraged through your blog and Facebook page. Thank you for this glimpse into your life. It’s an honor.
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It truly means the world to read those words from you. Thank you so much for telling me this. Made my day! God bless you!
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I love your blog. I feel blessed to have come to know of your story through GVD. Your an inspiration to me 🙂
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God has a funny way of connecting people we need in our life. So thankful for our GVD family!
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Beautiful Blog thank you for sharing and Hugs to you and yours!!
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Absolutely beautifully said. God Bless you and your family!
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Thank you Katie! You words are so true for many of us whose special needs world grew leap and bounds with the birth of social media. While I count on my PDCD family world wide, I suffer the heartache when we lose one of our own. We lost 8 babies this past year.
May God’s blessings continue to be upon you and your family.
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The life we all live is so different yet the same. Reading this felt like it was my own words. As tears were flowing and I began to feel that pain in my throat… the very next line I read you mentioned that same pain. It’s absolutely remarkable how your soul knows exactly how our souls feel.
Good bless, cuddling my girl extra tight tonight.
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Beautiful inspiring heartfelt words. Xxx
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So many parts of this could have been written by me, they are my thoughts, my feelings, my life. My son has an ulta rare disease called MPS Type II, it is terminal. 2015 was a very harsh year to our MPS community and I felt EVERY SINGLE ONE of those losses deep down in my soul. Yes I felt some deeper then others, families I have met and bonded with, children I have touched, cuddled, and loved on, but no matter what I felt them ALL, like you said, we all grieve. This year is not starting out so great either as another child with MPS is in his last days. Thank you for this post. I needed to read this, it was shared with me right on time ❤
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Thank you for writing this beautiful piece. I too am in a group similar to yours. I have a son with a rare genetic condition. I have tried to express to people outside of my group how emotional I get when we lose one of our boys within our group. They are sympathetic and empathetic, but they don’t get it. These boys and their families are forever in my heart. It is like losing a family member.
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Beautiful ❤️I have a dear friend who is more like family to me she has a daughter with the same condition .. There are times when I don’t know what to say 😞 I just listen and having read this .: thank you for sharing ….Thank all of you for coming together in your group .. Strength is in numbers …sending positive prayers 🙏🏽❤️And energy to all of you … ((Hugs)) to your families
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I have no words to explain how this blog made me feel. I haven’t been following it, it is new to me. My heart goes out to your family with the gift God has given to you. He chose you for a reason, so your son could have the very best of love and care for his time on earth. Faith is what will get you through each day, and faith will carry you on when his time does come to be in the Father’s house, free and unencumbered..and when your turn comes, our Lord will be patting you and your family on the head with the wonderful words, “well done, my good and faithful servant”. How wonderful.
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I cried. My guy has a couple of the same diagnosis as your son. They even resemble each other just a smidge. I just hate the days when the fear of life itself takes over. It’s hard to remember that this life is so short compared to the eternity we’ll spend with our father…all healthy and happy. I scare myself sometimes when I let my mind wander to the what ifs. God has it all under control. My Briggs is 7. I don’t take a single day for granted. It’s clear you don’t either. I love seeing stories about other Christian parents. God bless you and your family.
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I do too!! I’m so glad you found me! I’d love to know more about your fella!
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I read your article and it is exactly what i am feeling. I feel blessed that I am chosen to raise my little angel Rohan. Thank you for your inspiring words and I am really sorry to hear about the loss of the families. May you continue to be blessed.
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Thank You for sharing from the heart. I still miss all the time that was taken from me and bother who was more like a son to me he had many medical and also had a mental illness. I remember the times spent in the hospital pulling him in a wagon, building a case for his telemetry unit out of constructs so he didn’t have to carry it. On March 8th he would be turning 32 years old but his life was taken by someone who was supposed to help him he was only 13 years old and the love of my life. I miss him every day but I cherish the time we had together. I know he’s in heaven and he is whole and happy. Cherish every moment because there is never enough moments to be had. Thank You
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Reading this reminds me of Jhon, it’s coming up on a yar ago that we lost him. I struggled for about an hour on weather or not to post on here but I think this next statement will be reason enough. Keep in mind I’m not trying to bring up bad thoughts I’m just trying to relay something my great aunt said at Jhons funeral…. My great aunt is a nun and has been for well over 50 years, at my son’s funeral when everyone was at a lose for words and couldn’t think of what to say that would help she stood up and said “this baby never had a bad thought cross his mind, he never said a bad word, he never held a grudge or felt ill will for anyone. This baby is divine in that he never sinned. Every person in this room, and every person that has ever layed eyes on this baby has experienced true innocense, divinity in it’s most pure form. We should all strive to be as kind as this little boy, we should strive to be as brave as he was.” my son is an angle now but he changed so many lives along the way. Your children continue to change lives. Every person that ever meets these children has been blessed with an image of perfection. I’m sorry again for posting but I thought maybe these words will touch you like they touched me..
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Words and thoughts that are so very true. I lost my little girl to this condition in April 2014. Like you I feared losing her every single day of the 9 and a half years I had her here with me. I learned so much from her more then I could in a hundred lifetimes. They are such beautiful strong children. Love keeping up to date with your story, keep up the good work. Love and hugs to Conor man xx
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Beautifully expressed, and perfectly parallels my life experience with our beautiful son Brian. I always tried to just “be” with him, and not let my mind race to far ahead. Sometimes it inevidently did, but I just kept coming back to his precious face and sweet, innocent spirit. What courage & strength he had. We lost him just 3 years ago at the age of 19. We visualize him walking & talking & smiling in Heaven where he has no more pain. Your son Connor is a beautiful boy, too. Know that you are doing everything possible, even through your own fears & weary minds and bodies, to give him the best life possible. He is so fortunate to be born into a loving family & home. God Bless you on this journey.
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nice blog.. I am Mae Sunshine S. Cotingjo from Philippines and my daughter has PMG. Reading your blog made me cry. i really can relate. As for me there are lots of WHAT IF in my minds. What If my husband and i die, who will take care of my daughter. What if she will be a teenager, what would her life be.. I mean It so hurtful thinking all the what if’s and all the hope she is like that and like this.. Everynight i cry watching my daughter and thinking can we give her everything she needs in the future like therapies and all. Can we afford to give her what she needs in the future or can we really afford that one day she will be gone.. I really, really don’t know. Everyday is a struggle for us specially that everyday we have to leave her to her nanny since we have work and we need to work for her.. Anyway, thanks for your blog and it’s so inspiring. RIP to all the babies and we will continue praying for all the babies out there who has special needs. Hoping and praying that everything will be okey soon..
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My son doesn’t have a terminal illness but he has fragile x syndrome which causes him to have seizures. Doctor’s have said that children with fragile x don’t always live very long. He is 26 now and he doesn’t have as many seizures as he use to have.
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Once again, nailed it. Neuroblastoma is a small family and it’s just like that.
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I love you bushel and a peck!!! I’m so proud of the mama you are to all your boys. You have and always will be a special blessing to all the people you touch!!! I love you my sweet girl😘 Your mom!!
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I used to read about other parents losing their Children and say i dont know what i would do if that were me. I would cuddle my Daughter and hold her tighter. I would be the same watching my other Daughter grow up have children of her own and wonder what would happen to my special needs Daughter after i was gone. But I dont have to worry about that now as in April 2016 My Daughter sadly passed away and now i know what all the other parents feel like and it is a nightmare that i feel im never going to wake from. My Daughter had Cornelia De Lange Syndrome and Doctors didnt listen to me to check something i told them could be wrong and by the time it was checked it was to late.
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