Finding balance while fighting relentlessly + Tomorrow is not promised

Two weeks ago, I contacted one of my friends. I wanted to speak to her about life in general. I wanted to get an unbiased person to speak to. One who is not afraid to “tell it like it is”. I was tired of speaking to family members and my husband. My friend is as raw as they come, unfiltered and blunt. I don’t like hearing the harsh truth sometimes, but sometimes it is needed. In as much as my friend is blunt, she is the kind of person who will give sound encouraging advice. She will not build castles in the air or paint a fantasy.

Perhaps what makes my friend the way she is due to the fact that she has sickle cell anemia. Health-wise, she has her ups and downs (and I mean downs). I remember not too long ago she was hospitalized for a long period of time. She doesn’t let sickle cell define her. She has done quite well for herself academically and has a good career life. She has never let anything falter because of her diagnosis. I admire her so much.

So…I called her and told her about my daughter’s health issues, the crohns scare etc. I told her that nothing makes sense. The test results say one thing, then the next day another. It’s like chasing after the wind. I also told her about my marriage that I felt has been failing. I told her that I feel lost.

She listened intently and provided advice concerning my marriage first. Then she paused and then told me that she understands my daughter’s health struggles. She informed me that growing up, she was frequently hospitalized. In fact, her siblings too were hospitalized as well, I am unsure if her other siblings too have sickle cell. She then said that when she was young, she remembered seeing the neighbor’s kids play and have fun while she was often confined to her bed or in the hospital for treatments. When the eldest of the neighbor’s kids turned 9, one after the other, all became wheelchair bound. No diagnosis, no scientific explanation. 21+ years later, it remains the same. They are all wheelchair bound.

She then told me, tomorrow is not promised and that I should not see the diagnosis as a sentence. She challenged me to do everything to assist my daughter. She then told me how lucky I am that I am not back in Kenya, where there are limited services for kids on the spectrum.  Last, she said that I should not lose myself to things around me. I still need to take time for me! I can still hear her words… crystal clear.

I pondered on her words, firstly… I found it profound that I am truly blessed to be in a nation where there are specialized services. I want to be an advocate someday for kids on the spectrum, so I typically spend a lot of time researching, watching videos and listening to webinars. I remember watching a documentary about Autism in Kenya. I honestly cannot imagine what these parents go through, I can’t. I tear up every time I think of their challenges.

This week too, we received news about a promising colleague of mine who resigned. She was truly promising. She was born into a family of doctors. Her mom and dad are both specialists and she went to ivy league schools and was preparing for medicine school. She had an infectious personality and was kind. Almost overnight, she started missing work and eventually took medical leave. She explained in her departure email that she had a sport accident when she was young and now she is dealing with possible delayed repercussions. She has halted everything.

Again, tomorrow is not promised. We are called to do our best, to love unconditionally, to give willingly, help selflessly and I believe…to fight for your purpose relentlessly!

Lord Jesus, help me fight for my daughter relentlessly. Give me strength as I try to help other families in my situation. Help me find a balance in this all so that I do not drown. Then when it all comes to a close and you ask of me what I have done, I hope to hear, “Well done, thou good and faithful servant: thou hast been faithful”

GI update + Crohns Scare

I start with the same line again: It’s been a little over a month since I provided an update on my daughter’s biomedical treatment. (Sucks I know, time flew by).I thank God for his abounding grace!!!

It has been really busy this past month, it has been filled with many tears, prayers, frustrations etc. I will give you a truncated version of what has transpired…Right after my daughter’s constipation diagnosis, we jumped in to do enemas and miralax in an attempt to do a bowel cleanse. Things went on ok and we expected our daughter to stop saying that she was hurt. The pain persisted and she seemed to complain even more!

Mother’s instinct/intuition made me go back to the GI doctor and tell him that there could be something more. He then recommended a blood test for some common GI diseases including crohns. Going to labcorb was a nightmare. It look 6 adults to hold an approximately 4ft 42lb girl. I was previously shy and in denial of mentioning that she is on the spectrum, but nowadays I am learning (emphasis on learning) to be open especially when it comes to her care.

The results of the test came back and the doctor was shocked to see that she tested positive for one of the C-reactive proteins for crohns. He indicated that an endoscopy and colonoscopy was needed to confirm this as she definitely did not fit the physical description of a crohns patient. I was crushed and I remember setting a full day off from work to cry as we did the liquid fast and bowel cleanse before the procedures. My main concern was the anesthesia. You hear so many stories of children who pass on after reacting (i.e cardiac arrest) to anesthesia.

The day of the procedure, I remained calm and knew that at this point, I have done my part and now I have to leave it to God and the doctors. We went to INOVA Fairfax surgery center. I must say, this is absolutely one of the best health institutions I have been to. The doctor (anaesthesiologist) even spoke to my daughter for 5 minutes and explained to her what she could expect. She was kind enough to explain in simple language and actions.

Fast forward…at the waiting room, we were with other parents and family members as we awaited to speak to our respective doctors. One family went before me. They had a child almost the age of my daughter. They went to the chat room and we heard loud wails and screams. I do not know if they got the C- Cancer word. I have no idea, I just presumed and felt my stomach flip and my heart jump into my throat. My husband whispered, “Gosh, I hope we don’t end up being like that”

When the nurse called us into the chat room, I squeezed my husband’s hand. We sat down and the doctor showed us pictures of the entire digestive tract from the esophagus all the way to the colon. He explained that she had a significant amount of inflammation as well as nodules and acid reflux. He stated that he would put her on omeprazole and it would take a couple of weeks before we could see any improvement.

At first I was like…acid reflux? I thought it would be something more significant. I was grateful but questioned if the diagnosis was right…especially after the fact that she tested positive for the c reactive protein for crohns. After researching further, I saw that indeed acid reflux can cause excruciating pain especially for kids on the spectrum. It made sense because my daughter used to have projectile vomit when she was born. She had it for quite some time. I brought it to the pediatrician’s office (don’t get me started on them and their ineptness) and they said I was overfeeding her. Right after she turned 2 years, the projectile vomit, gagging and difficult with solid food phase disappeared. Maybe it is because this is the time it switched to become silent reflux.

It has been almost 2 weeks and she is still complaining of tummy aches. I have decided to give the omeprazole time to work. I don’t want to be those kinda moms who always cry wolf. Perhaps they might not take me seriously next time.

My plan is to slowly start my daughter back on all of her biomed regimen. We stopped giving her some of the supplements especially because the procedure required her to be off quite a number of the supplements. With that, we have seen loss of speech and return of her sensory overload. Sigh!

I told one of my supervisors about my journey and she cried like a baby. I was in shock, I told her I never thought of my story being one of those sob stories. Perhaps it is because of my faith and also because I see children who have the worst of what autism has to offer.

Lastly, I joined this exclusive group of families with kids on the spectrum. So most of this summer, we have had activities strictly open to kids on the spectrum and their families. A non-judgmental zone. The first time I went it kind of freaked me out to see so many kids… humming simultaneously, flapping, holding their ears, scripting and walking around. I remember telling another mom who I work with who is a spectrum mommy. She has a 4 year old on the spectrum. She absolutely refused my numerous invitations to join the group, she said she is ok seeing her son but not others. I told her that for me, I cannot say that I am in this “Autism community” when I know nothing about what someone else is going though. Autism is a spectrum disorder meaning a myriad of behaviors and challenges… I owe it to the community (especially because I want to be an advocate one day) to understand their challenges. I have learned a lot about pica, wandering, childcare etc. than I would have ever understood.

 

Hugs and love!