Wow! I have so much to be thankful for, I truly do. I just received a promotion to a position that was my long-term goal of achieving; I have a beautiful home, a loving/helpful husband and a precious little girl Reese McClain. I have really good days and then I have those days that just are really hard in every way. Some words I’m going to share may seem harsh or sound ungrateful but that is not it at all. I’m simply trying to be as truthful as possible in sharing our journey.
Being a special needs mom is HARD and quite frankly it can just suck at times. I don’t know what happens differently in those days that are harder than others. Is it the mom that grabs her kids face telling the toddler to shut up, sit down and not move while waiting for her prescriptions at the pharmacy? Is it the mom that complains because her kids are involved in so many activities? Is it the mom that is pregnant unexpectedly with her second child that acts like it’s a huge inconvenience in her life? Is it seeing children Reese’s age walk/talk? Or is it reading facebook post from other families with a XQ28 duplication children that is heartbreaking, scary and overall just makes me sick to my stomach what our future could hold?
After hearing the news that our child has a rare genetic disorder that can cause severe mental and physical disabilities, many people have very kind words. However, one comment that really hurts me, and I know people are meaning it in the most kind and precious way is, “you were meant to be a mom to a special needs child.” Really? Because I don’t understand that nor comprehend how I am “meant” to be a mother to a special needs child. I love Reese McClain to the moon and back but there are a lot of extra steps we have to take daily. When people say this to me I want to say, “Well, I actually think the same about you, I really think you’re cut out to be a parent to a special needs child too.” My point is NO ONE is “meant” to be a parent to a special needs child. I would agree that maybe my personality/drive is a good characteristic to have as a special needs parent and I would agree that having a great husband with family support is awesome. But I would disagree that because I have these components, it warrants me for a special needs child.
I have had many people tell me “No one knows what their child’s future holds” and this is true. However, parents of children that are born healthy and physically and mentally develop on time have a better chance of normalcy. Those parents will never know what it’s like to see your child in the hospital numerous times; try to figure out the most effective way having medicines prepared, spending 1.5 hours to put your baby down every night, make doctor and therapy calls constantly and fight for your baby to receive services so that they may have the opportunity to walk and talk. They will never experience the heartache, the daily thought, will my child walk and talk and the overall frustrations of fighting for those services!
Reese is not crawling, walking or talking.
Reese IS smiling, laughing out loud, eating well (table food)—trying to feed herself, sleeping thru the night and engaged in all therapies. It’s the very small milestones that I must continue to celebrate and be thankful for… it just can be very hard at times. I know without a doubt that God has a bigger plan for Reese and my family than I cannot imagine. I know without a doubt Reese will run to me jumping into my arms and saying “Mommy, I love you”… my timing and God’s timing are just different. I share this with you—NOT to make you sad or pity me but for you to maybe understand the journey I’m on with a special needs child.
God says “For I consider that the sufferings of this present time are not WORTH comparing with the glory that is to be revealed to us” Roman 8:18
I can [and I WILL] bathe in the Psalms, drink the Gospels and surround myself with HIS promises. The Bibles tells us that his word never comes back empty. When our hearts are nurtured in God’s word, his word will be honored. If you would please pray for all those parents of special needs children that our hearts/minds stay strong in the word. That we continue to be given God’s grace and find peace within the word… that we WILL NOT allow Satan to steal, kill and destroy our happiness. Thank you from someone who does Consider it Pure Joy my friends.