Am I wrong to not want to think about what lies ahead of us? To not want to face the harsh reality of what is to come for Jackson. To not being able to cope with all of that right now? Am I in denial? Am I being naive? Or is this just me dealing with this Usher situation?
Nobody prepares you for this. I think other mothers of children with special needs will agree. There is no guidebook. You get thrown into the water and you swim. Because your world might have stopped turning upon getting that diagnosis, the sun will still come up every day. You have to move forward.
And I want to move forward, as Jackson is moving forward. He is sitting, he is standing, he is babbling. And that is all great, but there is this gigantic monster that is always lurking. The constant reminder of “there is worse to come”. And I cannot deal with it. I cannot face it. Not yet. I know it’s there, I know it will come, but at this time I choose to ignore it.
I choose hope over worry and happiness over sadness
Does that make me a bad person? I don’t know. For now I prefer to enjoy the happiness in our lives. Luckily, we have plenty of that. What will come will come but there is nothing in my power right now that can change that. So I choose hope over worry and happiness over sadness.
Reality will come knocking on our door, I have no illusions. But when it’s time to face this reality, at least I will be strengthened by happy memories, and more important, so will my son.
Photo courtesy of De Morgen – Karoly Effenberger
Live day by day and try to be happy. Being happy now will give you strength in the tough times ahead. Fretting over the future drains the energy from you. You’re not wrong.
thank you Anne for your kind words
From one Usher mommy to another I completely understand. Usher’s was something I had never heard of and when my almost 2 yo son was diagnosed with it at a young age, my heart broke. I have learned that my little one is my strength and reason to keep going. I have no one to turn to with my questions of is this normal? How do I help him do this? When will this milestone come about? On and on and on. Many prayers to you and yours. You are not the only mommy out there with that ugly monster lurking around the corner.
Thank you Kaylan. Together we are strong right ? Let’s #stopUSH. Wishing you and your family all the best.
Those thoughts will snuck in every once an awhile. But projecting those things shadow your present joy. Don”t project the worse. You have no clue what will come your way that will benefit your child. Prepare as needed but don”t stop enjoying. Your enjoyment and graces will flow throughout your child”s life. Who says joy will not be a part of his or her future? Live one day at a time. My daughter is now 26 and doing wonderful things. She has Down Syndrome and experiencing college. Don’t project. Live & Pray thanking God for teaching you true love through your child.
Sincerely,
Brooke’s mom
Thank you Ramona for your kind words.
You are not wrong, UsherMom – my baby boy is now 17 & will be going off to university in less than a year; enjoy those adorable baby moments, because teenagers are not so cute sometimes 🙂 Jackson will continue to amaze you & you are so right to focus on the happy moments, because there will always be happy moments! I didn’t find an Usher syndrome blog for many years after my son was diagnosed at age 2 – I was terrified & felt alone. But now it’s almost hard to imagine how scared I was back then – because he’s doing great, and no matter what – I know he’ll always be my great amazing kid! Hugs to you & your adorable baby Jackson!
Hi Stacey, thank you for your comment and reaching out. I cannot even imagine how it must have been 17 years ago, I am so happy to meet fellow Ushers. Wishing you all the best.
So nice to see a mother, father and Jackson so happy !
3-strong people together, thats great !
Best wishes !