Dear Sweet Mama,
You have been given an incredible, amazing, and heartbreaking gift.
You have been given a child with “special needs.”
The needs could range from severe allergies to severe handicaps and/or anything in between. Not that there is a spectrum and your story is worse than another’s mom’s story. Or her story is worse than your story. You just each have a story. And a journey that has been difficult. It may get easier. It may get harder. BUT you are all “special mamas” together. You are all in this TOGETHER.
And it’s not the road you asked to travel down. You were hoping for the raod that leads to Italy, Fiji, or Santorini. Yet instead your travel stop landed you in the middle of a war-torn country you’ve never been in. There are landmines to baby step around. There are well-meaning but insensitive people there. And there are downright nasty, unjust humans there, too, who make your struggle to provide everything your child needs, all that more challenging.
It is TRUE, though, that in this distant land of life with disability there are angels. There are lovely souls who care, and whose patience and compassion are as vast as the universe sky. There are angels each step of the journey if you look for them, in the smallest cracks of your day. YES.
Sweet Special Mama, do not think for one second that your experiences in Motherhood are in any way on par with families who have not encountered disability.
Do not think for one second you should be like THAT MOM, wife or family.
Do not expect that you will cherish motherhood and parenting in the same way.
Do not expect that you will not need breaks. Lots of them.
Do not expect to never fantasize what life would be like if your child was born perfectly healthy in every single possible way.
Do not condemn yourself for wishing, hoping, praying, and pleading for a re-do.
Do not condemn yourself for wondering if life would be easier for you, your husband, and your other children, if your child passed away.
You, Mama, carry heartache.
You carry loss.
You carry an on-again off-again grief. And it comes in waves. And in your everyday life, its there underneath the surface, threatening to come up.
It takes some of your joy. It makes you tense. It makes you more snappy and less carefree-and-happy.
You have become more tender and you have become tougher as a result of this terrific trial in caring for your disabled child.
And it’s ok.
You are ok.
You are very ok.
You can do hard. You already have.
I know there are moments you absolutely want to curse and cry, “Why me? Why us?” You want to pull your hair out after a day of dealing with illness, or medical specialists, or anxiety or behavioral issues. That is normal. You are normal.
You need to vent.
You need to cry.
You need to share, with raw intensity and honesty, with other moms. Just be WITH.
You absolutely must exhale or your soul and spirit and body will implode.
That cannot happen because your precious child needs you, mama-bear-advocate-extraordinaire. So find, seek, and chase after moments or days of respite.
In your brighter moments, you completely recognize that you are deeper, richer, more compassionate and more sensitive to the needs and crises of others because of what you have been through. Because of what you go through every day.
Yet, it is VALID to wish that this unique opportunity for major emotional, spiritual, and intellectual growth was not given to you. That personal growth could have come, should have come, in a different vehicle altogether. No mother, however excellent and mature she is at having wise perspective, wishes for their child to be disabled. No mother.
So again, do not place unrealistic expectations on yourself, your heart, your mind, and your day-to-day dealings with disability. It is hard. It is maddening.
And when the sweet moments and small victories come, inhale them, deep into your soul. Because of these, you will survive.
Sweet Special-Needs Mama, you will survive, and the sun will still shine.
I love you,
Jessica
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