Bubble Burst

Bubble Burst

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Boy or girl… What do you want? What are you having? Are you going to find out? Aren’t you excited! How far along? Do you eat seafood?  … These are classic things we frequently hear as parents expecting a new bundle of joy. Omgoodness, pregnancy is such a delightful time filled with hopes, dreams, and morning sickness, lol!  Here you are carefully carrying your child to term… cautiously watching what you’re eating… reading every book… photographing the growing belly bump! This perfect tiny life is yours. This little one will grow up one day and you are responsible. They are your precious gift and you will protect them no matter what.1910221_521136381577_24_n

The day comes and a miracle arrives, but then something shifts. Perhaps you sense something immediately, perhaps it is not until the child has hit 2 years old you feel some differences, possibly it’s the age of 5 and there is a traumatic event that alters every hope and dream you held so dear.  What happens when it’s discovered your beautiful and perfect blessing will have a disability in some capacity? A disability is a physical or mental condition that limits a person’s movements, senses, or activities.  This is a limitation. There is suddenly an invisible line drawn that you cannot remove. You did everything right and something still went wrong. What happens then?1927689_521136680977_1017_n

For myself, I can strongly say I went through a wide range of emotions. I felt so guilty when I found out that the playful, hulk-like, arm motions Christian was making when he was 2 years old were actually seizures. I was guilt ridden and depressed he had been seizing for months and I was laughing because I thought he was mimicking the Hulk movie we had seen. I was his mother. I was his protector. I was sitting here watching him and not seeing a thing. I did not understand how God could let this happen. Now, it wasn’t until about six months later I found out that the reason he stopped singing the alphabet to me or pointing to his extremities was because he always had autism. Now, the guilt swept over me again. He was my first born.

‘They’ said be patient with him.

‘They’ said he will learn at his own pace.

‘They’ said not to rush him just to love him.

What ‘they’ didn’t say was what to do when that isn’t enough.

My sweet boy was diagnosed with two lifelong disabilities that he didn’t choose and that I could not control. Oh how I would switch spots in a heartbeat to see him not struggle. The grief I felt as I went to appointment after appointment informing me of the limitations my son would face throughout his life. Grief when I realized that he may never heal fully or go a day without medication. We would live in a revolving door of doctors’ appointments, therapy visits, medication checks… the list goes on. The pains I felt when my son began to smack his lips, eyes roll back and arms start to spasm. This is from a mother’s perspective.

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Now, this is just a glimpse of how I see my son.  But about four years ago I had to step back and consider how do my other children feel?  I am blessed with four more beautiful children. They were born healthy and remain disability free and for that I am grateful. Physically they do not have any ailments requiring reoccurring weekly appointments or daily medications.  Then I looked through an old photo album and started looking into the eyes of each child. My heart began to ache deeply. For the first time I really saw pain behind the pictures. This was not the pain of Christian. This pain was his siblings. I saw photo’s and recalled Caleb or Jada was trying to get Christian to smile. I saw photo’s memories flooded of times they would try to include him and he declined the invite. I began to think how absent I have been during these last years. Physically I am here daily. The dishes are washed. They have never missed a meal. They attend school and receive good grades. They are fine.

Correction, I thought they were fine.

When I sit back and think about the past, present, and future my thoughts engulf me. I recognize I have spent so much time focusing on Christian’s disability that I have sometimes overlooked the needs of his siblings.  This situation is unintentional of course; it’s just a byproduct for a mother of a special needs child. The natural assumption is that because the siblings don’t have a disability they are functioning normally so they are well. False. The sibling bond is too vital of a relationship to overlook in any family.  This relationship becomes crucial within special needs families because the brothers and sisters will be in the lives longer than anyone else. My children are the most dynamic people in Christian’s life. Long after I have passed his siblings will remain.

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However, admitting we have a problem is the first step! The guilt I felt knowing Jada felt left out because she never gets checked out of school. The regret I experienced when I missed key moments at Caleb’s game because I was watching Christian in a meltdown. Countless times I have asked them to leave their homework on the kitchen table for me to check… all for me to forget to look over it because I am consumed with something else. I slipped. I fell. I get back up. I acknowledge to the children that I see them and I apologize for the times I did not. Parents are people. I am not here to mimic perfection for my children. I would much rather them see me humble, strong, and determined to do better. Now, not every parent sees it this way, but for myself I prefer to keep it real.

I will go into further details about ways I have learned to grow with my lovely children. I will share my steps and I would love to hear from you! Can you relate to anything I have shared today? Do you know someone who can? How do you feel about special needs siblings?!

Until next time… all our love.

SNS!

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Special Needs Siblings: Scholarship Opportunity

Special Needs Siblings: Scholarship Opportunity

Yow Sibling Scholarship

SCHOLARSHIP INFORMATION:

Yow Sibling Small Scholarship Application: Due May 31, 2017 by 11:59pm

Requirements for Scholarship: must be a college student who ACTIVELY participates in taking care of their sibling with a physical ailment, physical disease, and/or physical disability. Must be enrolled as full time student, and must not be on academic probation. The limitations are not bound by state or university in which the individual attends. —email proof of enrollment at a University to Bella Soul (does not need to be a transcript; scholarship is not based on GPA but will be taken into account)

Name:

Year:

GPA:

University:

Disease/Disorder:

Please write a 3 page double spaced story about the triumphs and struggles of helping to take care of your sibling with a disease/disorder. Include answers to the following questions: Explain your day to day routine. Explain what you have learned from your sibling who is confronting a disability. What advice would you give to another individual confronting similar adversity?

Link for more information: http://livebellasoul.org/scholarships/sibling-scholarship

Special Needs Siblings: We Need You

Special Needs Siblings: We Need You

If you know a special needs sibling…
If you are a special needs sibling…
If you are the parent of a special needs sibling…
Tag. Share. DM.Contact.
#SpecialNeedsSiblings

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SpecialNeedsSiblings@gmail.com

He Is My Hero

He Is My Hero

❤️🌟Thank you Lauren Cantu for sharing part of your heart with us being a Special Needs Sibling. Your passion, humor and love are felt in so many ways! We honor you! SNS 🌟❤️

I am the older sister of a beautiful baby boy with special needs, his names Jacinto a.k.a monkey a.k.a dweeb a.k.a sissybooboos pumpkin head. He inspires me, that boy is my hero he has been through so much and still smiles and is always full of happiness. It doesn’t matter where we are he always gets me dancing and singing my heart out!! One piece of advice when speaking to a Special Needs Sibling: ‘Ask all the questions you want, but just don’t make any smart ass remarks!’

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A Mother’s Heart

A Mother’s Heart

❤️🌟 Thank you Olivia Kimbrough for sharing the following story about your personal journey as a Special Needs Mom. Your transparency and strength touch us deeply! Your family is beautiful and we honor you all. SNS 🌟❤️

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When Thomas was a baby (4 months old) my mother Juanita Zenquis Steelman and I noticed that something was different about him. Thomas would tense up and shiver as if he was cold. I did not know exactly what was going on, so I wrapped him in his blanket and rocked him to sleep. As soon as I comforted him he stopped shivering so I laid him in his crib. My mom told me that what she saw looked like seizures. I made Thomas a doctor’s appointment to be checked out. At his appointment he started tensing up and his hands started jerking in slow motion. His doctor jumped up and told us that we had to go straight to the hospital and said there would be a room ready for him. When we got to the hospital there was already nurses and a few doctors in the room and of course my husband and I were panicking.

After a few hours of monitoring him, the doctors came back into the room and informed us that he was having seizures. They started him on medication to see if it helped. As the day went on Thomas continued to have these “seizures”. After running a whole bunch of tests and being admitted for 3 days the doctors finally had (what they thought were) answers. They diagnosed Thomas with Microcephaly (abnormal size head), Dandy Walker Variant Syndrome, and seizures. They handed me his discharge papers and sent me on my way. Here I am trying to get myself together for baby Thomas, but something just did not sit well with me so I reached out to different doctors for a second opinion. I was told to give it sometime for the medication to work and if I did not see a difference they wanted me to bring Thomas back in. A few weeks went by and the spells started to get worse. So my husband and I took Thomas to the hospital and they admitted him once again. They repeated the tests and this time his diagnosis was different. They said that it was not seizures and diagnosed him with Dystonia.

Dystonia is a state of abnormal muscle tone resulting in muscular spasm and abnormal posture, typically due to neurological disease or a side effect of drug therapy. I was told that there was no cure, but medication could possibly help. My heart dropped after hearing that. Months went by and we noticed that he wasn’t doing what kids typically should be doing at his age. He wasn’t talking or walking .We were told that he would more than likely need a walker in the future. As of now he has to wear a helmet to prevent him from hurting himself when going into one of the Dystonia spells.

With all of that being said Thomas is now 2 years old and he has physical therapy, speech therapy, and occupational therapy. Thomas does sign language and is currently in school doing great.

#Dystonia #MothersHeart #MamaBear

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