Posted on by Jennifer Johnson

A Better Person

I had it all planned out. Once we got married I was going to have a bunch of babies and raise them to be well-behaved, well-mannered, obedient children. I was determined I would be a good parent and I would raise them in the Christian faith. I even planned to home-educate these hypothetical children. My kids would hit all their milestones, work hard, and do well in school.

Once those children arrived I began to see that things aren’t as simple as I thought. Hypothetical children are not real children and sometimes life throws curve balls that change your plans and change you, growing you in ways that you could never have expected:

A complicated pregnancy. An emergency c-section. A baby in NICU. Hypertension. Sleeplessness. Health problems. Moving far away from your support network because of the cost of housing.

Then, another complicated pregnancy. Home purchase. Bi-lateral cleft lip and palate diagnosis of the baby in the womb. Another c-section. A baby in Special Care.

Adjusting to life with two children. Dealing with chronic pain. Putting your baby through two necessary surgeries and the subsequent challenging recoveries.

Financial challenges. House repairs. A husband working full time and studying for a new qualification.

A global Pandemic. Lockdown. Isolation. A close loved one in hospital. Special needs parenting.

Seeking help for Bethany from professionals. Persuing an Autism diagnosis. Advocacy. Disability. Special School.

Feeling frequently overwhelmed. Realising nothing was in my control. On the cusp of taking anti-depressants but changing my mind due to fear of side effects.

Determining to cling to the promises of God in Scripture.

And praying. Lots and lots of praying down on my knees in tears and deep piles of dirty laundry.

“Jesus, I need you. I can’t do this without you.”

And yet, in the midst of those struggles, there was also so much joy, love, and tenderness. There were so many funny moments. And a lot of growth.

Parenting is so much more than I thought it would be. Over time I have come to value connection with my kids over control. They are unique little people after all, with needs and wants and communication struggles. I can’t expect them to act like little adults.

I have learned to take the help that is offered. I have learned that I can’t do it all (including home-educating). I am learning to trust God with these precious gifts that we call Lucy and Bethany.

I am incredibly thankful for my family and all that has been provided for us. I am thankful for courses I’ve taken to help me to understand my autistic daughter better. I am thankful for advocates who have shared their stories and brought me hope and help in the process. I am thankful for all the intervention and help we have for Bethany.

Being a special needs parent has made me much less judgmental when I see a child who is struggling while out in the community. It has also made me examine the way I respond when my child is triggering me. The result has been happier, connected, peaceful relationships at home.

We have been through some dark, challenging times. But God has brought us through. He has answered prayers. He has provided joy and hope and laughter. He is making me into a better person.

‭Psalm‬ ‭61:1‭-‬3‬ ‭ESV‬
[1] Hear my cry, O God, listen to my prayer; [2] from the end of the earth I call to you when my heart is faint. Lead me to the rock that is higher than I, [3] for you have been my refuge, a strong tower against the enemy.

https://bible.com/bible/59/psa.61.1.ESV

Posted on by Jennifer Johnson

A reason begets more questions

I looked down at my phone. I had received an appointment from Bethany’s Paediatrician. At our last appointment she had said she would transfer our child to a more local Paediatrician (we recently moved house). She said she probably wouldn’t see us again and yet here was another appointment to see her.

I felt a knot in the pit of my stomach. Our last action at that Paediatrician’s office was to take a blood sample for genetic testing. Receiving an appointment meant the results were back. Something was up.

We only referred Bethany for testing to make sure her Autism and her Cleft weren’t part of some kind of Syndrome. We wanted to make sure there was nothing else to be aware of.

Last week Bethany and I went to the appointment. It turns out that Bethany is missing part of Chromosome 16. This deletion of information is not associated with a cleft lip and palate but is strongly associated with Autism. In fact, it is more than likely the cause of her Autism.

This news reinforced to me that Autism is not and never will be something that Bethany will grow out of. It is in her DNA! It is as much the thing that makes her the beautiful, fun, determined person she is as it is the disorder that disables her.

So, in Bethany’s case we have a reason for Autism. A reason for her severe developmental delays, particularly in use of expressive language. Yet now we have more questions. Was this loss of genetic information a fluke at conception? Am I or is my husband a carrier? If so, what about Lucy? How might this also impact any potential grandchildren? Exactly how intellectually disabling will her autism prove to be?

An answer. And yet so many more questions. The realisation again of the challenges our daughter faces compared to many other children. Again, the weight of another diagnosis falling on the shoulders of parents who wish they could make life easier for their child. We wish we could bear the challenges for her, and yet we can’t.

So, what can we do? We take some deep breaths and determine again to be the best support we can be to her. We commit again to love her unconditionally. And we pray to God for strength, help, and wisdom. We trust that He has allowed her disability for a reason. We recognise that all human life is beautiful and sacred, despite the challenges of disabilities.

And Bethany is a very determined child. With the right support she can and will flourish. She will achieve her full potential. And as long as she is happy, healthy, and accomplishing appropriate goals for her, what more can we ask for?

https://medlineplus.gov/genetics/condition/16p112-deletion-syndrome/

Posted on by Jennifer Johnson

The Challenge of Chronic Illness

Back in September I had a long awaited Rheumatology appointment and after several years of experiencing symptoms, many of which have been progressively worsening, the Consultant diagnosed me with Sjogrens Syndrome.

Although SS primarily attacks the glands in the body it has other symptoms which can be very difficult to deal with. The worst symptoms for me have been persistent arthralgia in my hands, wrists, elbows, and knees, as well as overwhelming fatigue and GI issues. Coupled with the situation of a Pandemic and the challenge of raising young energetic children, you could say that 2020 has been challenging (understatement)!

Being diagnosed with a serious illness is never easy, but in some ways it brings a measure of relief. I am trying a medication which can take up to six months to work. It doesn’t seem to be helping me yet. My pain levels are always worse during wet or cold weather of which we have an abundance here in Wales. I am praying the medication will start to help me otherwise there are few options available apart from pain management, pacing, rest, and gentle exercise.

There is also the possibility of SS occurring alongside other conditions which I am trying not to worry about.

If this illness has taught me anything it is that I need Jesus to help me. Without Him I am without strength and without hope. My faith in Him has been an anchor for my soul and the comfort of His presence has brought me joy.

Suffering through longterm illness has also taught me thankfulness for the little things. A pain free day; praise God! A good night’s sleep; thank God. A gentle walk outside or playing and cuddles with the children. Pain medication and hot baths. A supportive and domesticated husband. Good food. Joint household visits with my sister’s family. Scripture reading. Prayer. Christian music. A text from a friend. These things are all blessings from God that help me to bear up under the strain of illness and pain.

I have occasional days where I feel absolutely fine and I could conquer the world but they are few and far between. At the moment my pain levels are very high. I am struggling to type this on my phone because of wrist and hand pain but I felt it was time to share and to ask friends who share my faith for their prayers.

Thanks be to God who is our refuge and strength, a very present help in trouble. The LORD is good, a stronghold in the day of trouble. He knows those who put their trust in Him.

Thanks for reading.

https://www.bssa.uk.net/