It's Personal: I Cried

Sunshine has had multiple specialist appointments over the past month and continues to do so. She doesn't sleep.  We're lucky if she sleeps 5 hours a night within a 24 hour period.  She appears physical and aggressive on a daily basis, with screaming fits that can last hours.  Sunshine is the most delayed of any of my special needs kiddos.  It has been a very difficult journey.

The journey trying to figure out what's going on with our Sunshine has been physically, mentally, and emotionally draining.  It's personal.  I have cried more times than I can count.

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Diagnosis Challenges

Three months ago Sunshine was diagnosed with Reactive Attachment Disorder, PTSD, Autism Spectrum Disorder, the early signs of ADHD, and a Sleep Disorder.  The specialist prescribed her a sleep medication.  We could not work on any of her other behaviors and/or skills until she started sleeping.  Therapies would not be effective.

I had anticipated two diagnoses, but did not expect all of them.  That night and the night after, I cried for me. I cried for Sunshine.  I cried for our family.  She is literally Dinomite, Bulldozer, and Princess, all in one and then some.

To say that I was bitter about the challenges I knew lay ahead, was an understatement.  Still, in the back of my mind, I KNEW she was sent to our family for this very reason.  I know what to do.  I've done it before.  I can do it again.  God had prepared me for this.

The sleep medication did NOT work.  In fact, I think it made her more irritable than she already was.  I cried after a week's trial, realizing we still didn't have any answers.  Determined to find another way to help my little girl, I postponed her next appointment with the doctor, and asked for referrals to a sleep specialist and allergist to test for food allergies.

There's Something Else Wrong

My gut kept telling me there was something else wrong.  I kept thinking about Bulldozer.  He was my other nonsleeper.

The sleep specialist appointment did not yield any answers.  All that came from it was the doctor increasing the dosage of her current sleep medication, which then increased her irritability again.

Before the allergy appointment, we went on vacation.  During vacation we had no media access.  We also spent a significant amount of time outdoors.  It was here that I realized, media, especially the TV, is a PTSD trigger for Sunshine.  When the TV, computer, iPad, etc. are on, she becomes aggressive towards everyone around her.  If those triggers are removed from her environment, she's not physical AT ALL.

When we returned from vacation, and ever since, I've been trying to figure out how to alter our schedules, routines, and life, to accommodate a media free environment for Sunshine, while she is awake.  This has not been easy for anyone.  I still haven't completely figured this out, as one may have noticed with a lack of blog activity.  (Thankfully she is napping right now, as I write this.)

During vacation Sunshine slept with me.  I was lucky if I received 4 hours sleep a night, because she was awake so much.  Sunshine did not nap during the day.  Even with significant amounts of physical activity, she couldn't settle down.  What were we going to do?  Not even a double dose of sleep medication was helping.

The food allergy testing took place on a Monday.  She tested positive to 14 foods.  The results were mild, but still results.  Allergy testing at such a young age can be inaccurate, so the doctor wanted to eliminate all 14 foods from her diet for a minimum of two weeks and go from there.

An Overload of Information

Sunshine has a history of eczema, rashes, gagging, vomiting, etc.  The fourteen foods she tested positive for include:  corn, oats, sesame, soy, beef, egg, dairy, peanut, melon (cantaloupe), berries (strawberry), citrus (orange), banana, tomato, & celery.

It took a good 24 hours for the allergy information to sink in and then... I cried.  Having already gone through the food allergy experience with Bulldozer, I knew what lay ahead for her, for me, and for our family.  It didn't help that some of her allergies are ones Bulldozer doesn't have.  Some of the only foods he can eat include corn, sesame, soy, beef, egg, dairy, melon, banana and tomato.

Just in the last year, we had finally reached the point where I had enough meals that Bulldozer could eat, that everyone liked, to complete a 30 day meal plan for everyone (with the exception of Dinomite's PB&J sandwiches).  Meal time was bliss.

The first week in July, I spent hour after hour reading food labels at the grocery store, trying to find foods Sunshine can eat.  Do you know how many foods contain soy and/or corn?  Corn syrup and corn oil seem to be in everything.  If those ingredients aren't present, soy seems to be.  I cried some more.

The food allergy thing really put a damper on our 4th of July plans.  We didn't do anything.  By the end of the week, I finally found enough food for Sunshine, to create a week long meal plan for her.  Then I cried again, at the realization that the extra money we're just starting to bring in, would all be going towards her "special" foods.  We just can't ever seem to get ahead.

This pity party very quickly turned into a prayer of gratitude that we in fact do have enough money to pay for her "special" foods.  When Bulldozer was a baby, we did not, and accrued a significant amount of debt trying to feed him, keep him healthy, and travel to specialists.

Sunshine has been eating allergy friendly foods for one week now, with the exception of one day.  She has slept soundly every night, waking occasionally for a few minutes, but going right back to sleep.

Confirmations

For the first time since Bulldozer was born, I'm receiving 8 hours of sleep.  I am thrilled that she is sleeping, but I admit, I cried again.  This just means the food allergy thing is real, and we are going to experience this challenge again.  It's still better than what lay ahead for Sunshine, if I hadn't requested the referrals and gone with my gut instinct, but none of it is fun.

I know Sunshine was meant to be part of our family.  If it hadn't been for the experiences I'd had with Bulldozer when he was little, it would have never occurred to me to look into food allergies.  I would not be as confident as I am, that I can meet her dietary needs without assistance from a professional.

Sunshine is young. She may grow out some or all of her allergies, or they may become worse.  We'll take one step at a time.

Sunshine's Early Intervention Coordinator called this morning to check in.  We stopped her therapies after her diagnoses appointment, until we can get a better handle on what we're dealing with.  I told the coordinator about the food allergies, and how Sunshine is sleeping for the first time ever.

Remembering Bulldozer very well, she says, "Wow! It's such a great thing that you had already experienced what you did with Bulldozer, and knew to check into that!"

Today I cry with joy, knowing that there is a God in Heaven who knows me, loves me, and prepares me well for any trials I may experience.  He gives me strength to be strong and the courage to remain faithful in the midst of so many obstacles.

I am thankful for the opportunity this experience is giving me, to share this lesson with others, especially those who know us, and have been a part of our lives since the birth of our children, and even earlier.

Our experiences as parents will always be filled with obstacles and tears.  May we take these opportunities to recognize the blessings and tears of joy that follow.  May we find God's tender mercies along the way and remember that we can do hard things!

If you enjoyed this post, you may also enjoy the posts below.

Diagnosis Day

It's Personal: Food Allergies

Special Dietary Needs Support and Resources