My Kid is MY Normal!

Heather is our normal. I am so thankful everyday that Heather is our first born baby. I don't want to compare her to anyone else & the things she's "supposed" to be doing or question why she hasn't done something yet. Heather is setting her own rules her own way & we are beyond elated and proud of every step she takes.

We've had Early Intervention come into our home to help with Physical Therapy, Occupational Therapy, and Speech Therapy. Our new home team to cover these fields has been absolutely amazing. It was so hard leaving good, genuine, gifted, and God-sent angels from Children's Hospital, but we knew that God would still send positive, loving, and encouraging people our way. New is not bad, it's just foreign & the unknown. So, once again, whenever you're scared, in doubt, or unsure:

Proverbs 3: 5-6
 "Trust in the Lord with all your heart
    and lean not on your own understanding;
 in all your ways submit to him,
    and he will make your paths straight."

And HE did!

My kid is MY normal! It's now completely normal for me to strap on Heather's backpack, move her Gtube feeding cord & oxygen hose out of the way for diaper changes, grab onto them to maneuver around the house, take her hearing aid in and out with one hand, and give Heather her meds throughout the day. It's now completely normal to dilate her rectum, change her Gtube dressings, switch out her nasal cannula, and suction her nose and mouth every morning. It's now completely normal that we have to check her oxygen saturations on a pulse ox machine, that we introduce sign language to her as a possible means for her only "verbal" communication, that we use a venting device connected to her Gtube to "burp" her, and that if her Gtube falls out, we just put it back in. It's now completely normal that my entire "Favorite List" on my iPhone is all her medical providers to make accessing them as simple as possible. It's now completely normal that we have appointments almost every week, (we've had one week with ZERO appointments-AMAZING!), we go to Children's Hospital once a month, her pediatrician 3-5 times a month, have Physical Therapy, Occupational/Speech Therapy, nurse interviews, nurses 2-3 times a week, and other medical professionals come into our home.  It's now completely normal for us to pack her stroller, carseat, diaper bag, emergency Gtube kit, extra medical supplies, pumping bag, suction machine, back up oxygen tanks, ambu bag, and plenty of alcohol wipes to wipe down everything in public places. (Public places meaning only the doctors office/hospital for now.) Again, Heather is our normal. Not only is she our normal, but shes OUR perfect! Never in a million years, would I ever wish to switch out our experience with Heather to have what anyone else's version of a "normal" baby would be. Heather has taught us patience, LOVE, trust in GOD, and selflessness. Don't you think if we had more Heather's in the world, more people would be more selfless?

Have you ever spoken to a woman who's husband is in the military and has been deployed for 6-8 months, or travels for a living then said, "My husband has been gone for two days & it's been so hard". Hmmm.....know your audience
Have you ever spoken to a person who has sacrificed their life for our country, has deployed and been away from their family for months to over a year, who has a short day of 12 hours, has to know classified information to keep completely confidential, and knows that he/she is sacrificing their LIFE for our country, but you complain about working too hard......know your audience.
Have you had a child that can crawl, walk, talk, hug, smile, kiss, eat from a breast or bottle, and only have routine appointment check ups, but then wanted to ask a Mom or Dad of a special needs child, "Oh, when did your child begin doing that".......again, know your audience.

I am very genuine when I say that I am elated, happy, and want to share in the excitement of our friend's baby's milestones. However, I also want you to take a moment to sometimes think about the question you want to ask before it so carelessly, at times, can roll off your lips.

In knowing someone with a special need's child, here are a few things that are helpful for other's to know:

 "Retarded" is a word that will never be allowed in our home. I'd personally rather you curse or be disgustingly vulgar than use that word ever around my family. This word was once only used as medical terminology. Unfortunately, it has now been used as slang to offend someone. Society hits once again....it's just every kind of wrong.

"What's wrong with her?/What problems does she have?": How do you feel if you're having a bad day and someone says to you, "Ew, what's your problem?" Now multiply that feeling by a hundred.......you follow me?

"I'm so sorry" is another one. Why? I'm not! My daughter is a miracle! Have you ever witnessed a true miracle? Never once, have I, as her MOTHER ever been sorry!

"I don't understand how you do this"......if your child was in the hospital, would you sit by there side, or enjoy a margarita on Friday night? If your child fell down and cut their knee, you'd be there with band aids, Neosporin, peroxide, cotton balls, a popsicle, and a kiss to make it go away and feel all better. Yes, this is different with Heather, and I hope, but really, I know you would do this too!

Don't be nervous. My child is not contagious. She only causes contagious smiles all the time! Once you hold and look at Heather, you'd never guess all these huge, unique, medical issues are going on inside her tiny, sweet, lovable body. Once you see her, you're Heather hooked!

Be aware of medical & health precautions. Washing your hands is standard for any newborn baby, so it's always just polite to ask if there's anything specific that you may need to be aware of: Taking off shoes, hand sanitizer, not being sick, if you're a smoker, communicate that clearly because major restrictions are involved, etc. Just take a moment for yourself & think about some good questions to ask or be aware of.

No matter what, don't NOT call, NOT email, NOT text, NOT stay in touch. That by far, is the absolute worst. Some may say, "I don't want to bother you", or "I know you're busy,", when really, many times it's just the fact of you being uncomfortable, not knowing what to say, or you feel out of place. Yes, we are busy, everyday we're busy, but so are you!  Hey, there's always Google! Google is the world of the internet. When all else fails, type this into Google: How to help a parent with a special needs child, or what to say to a special needs parent. Ta-da! Instant conversation! Also, Google the Ultimate Dog Tease! It's the best! :)

Yes, our normal for Heather is very cautious! Were you, as a parent, cautious when you interviewed for babysitters, had your first date night away from your baby, interviewed/researched schools for your child, sent your kid off to kindergarden, put your kid on the bus for the first time, etc? Our normal requires a lot of question asking, preventative measures, and advocating for our child.......but, THAT is something we will always have in common with every other parent.

What is our normal? Our normal is YOUR normal too! Our normal that we share with every other parent in this world includes: Loving your child unconditionally, knowing that you would walk through fire for your child time and time again, researching schools, programs, support systems, reaching out to other parents for advice, getting up in the middle of the night when your baby is crying, snuggling around the clock holding your baby knowing there is no other place you would rather be, giving bath time, reading stories, tummy time, and so much more. If you really think about it, we all as parents UNITE in this wonderful world of parenthood. There is nothing else like it! However, we all individually as families also have our own normal too, and this again, is just our own specialized, happy, and unique version of NORMAL!